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  1. The frontal lobes are considered our emotional control centre and home to our personality. There is no other part of the brain where lesions can cause such a wide variety of symptoms. The frontal lobes are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control and social and sexual behaviour. Personality changes can be apathy, decreased motivation, emotional lability, irritability, anxiety and depression, disinhibition, increased temper flare-ups, aggression, cursing/swearing, lowered frustration tolerance and inappropriate sexual behaviour. Some people after a brain injury become sexually disinhibited; always talking about sex, trying to touch other people in a sexual manner, or wanting to have sex all of the time. Sexual disinhibition occurs because of the damage to the part of the brain that helps control our behaviour. This usually improves with further recovery, therapy or some may need medication. Apathy A general apathy or disinterest in life and a lack of self-esteem and self-confidence. Emotional Liability An individual may find themselves laughing uncontrollably at something that is only moderately funny, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent; an individual might laugh uncontrollably when angry or frustrated, for example.
  2. If you've had an aneurysm treated by coiling you must have wondered about those coils in your head. What are they made of? How did they get there? Will they come out? Will I need more? Well I'm going to attempt to answer some of those questions here. Firstly, My qualifications: I'm not a doctor or surgeon. Nor indeed am I a medical expert of any kind, but I suffered a brain haemorrhage in 2006 due to a ruptured aneurysm and had it treated by coiling. One of the things that concerned me when I was discharged from hospital was the lack of information about what had happened to me and how it had been treated. There are many medical articles out there on the web that deal with subarachnoid haemorrhage and coiling, but understanding the jargon can be a bit daunting, so I will try to give you the benifit of my own research and explain things in simple terms. The Problem The number one priority following a subarachnoid haemorrhage due to a ruptured aneurysm is prevention of re-bleeding. The traditional method is to open the skull, locate the aneurysm and place a titanium clip over the neck of the aneurysm to seal it off from the circulation. The first successful clipping was carried out in 1937, but in 1991 a new method of treatment was introduced which effectively sealed off the aneurysm from the inside. This treatment is called endovascular coiling (Endo = inside, vascular = relating to the blood vessels). Coiling has the advantage that it does not require invasive surgery and can improve recovery times. Not all aneurysms are suitable for coiling and therefore clipping is still in common use and is arguably more permanent. The Treatment The idea of endovascular treatment is to pack the inside of aneurysm with some kind of material to seal it off from the parent artery. Coiling consists of filling the aneurysm with fine wires which coil up inside to the shape of the aneurysm. These wires are called GDC - Guglielmi Detatchable Coils, named after their inventor. What are the coils made from? The coils are fine platinum wires about twice the thickness of a human hair. They are available in many different lengths and types. How are they inserted? The operation is carried out under a general anaesthetic by a neuroradiologist in a special operating theatre. Firstly, a plastic tube called a catheter is inserted into an artery in the groin and is navigated through the arteries to the brain using x-ray guidance. A contrast agent is injected into the catheter to map the arteries so they show up clearly on the x-ray screen. This part of the procedure is similar to a cerebral angiogram. A smaller plastic tube called a micro-catheter is guided through the first catheter until it's tip is inside the aneurysm. A coil attached to a stainless steel delivery wire is fed through the micro-catheter and into the aneurysm. The coil is very soft, so as it exits the micro-catheter, it coils up inside the aneurysm. When the coil is fully deployed and the neuroradiologist is happy with the placement, a small electric current is passed through the delivery wire which detatches the coil from the end. The delivery wire is then withdrawn. Most aneurysms require more than one coil (I have four), so the procedure is repeated until the aneurysm is completely packed with coils. A final angiogram is done to make sure everything is OK and then both catheters are withdrawn. That's it - job done! You're now fixed up ready to start your recovery. Will they come out and will I need more coils? It is very rare that the coils come out once inserted, but the coils can sometimes compact over time. This is usually detected during routine follow-up imaging and it may occasionally be necessary to insert more coils.
  3. A collection of medical articles from around the web relating to cerebral aneurysms and subarachnoid haemorrhage. The articles are technical in nature, but worth a read if you can get around the medical jargon. Subarachnoid haemorrhage: diagnosis, causes and management J. van Gijn and G. J. E. Rinkel Department of Neurology, University Medical Centre, Utrecht, The Netherlands Cerebral Aneurysm Jonathan L Brisman, MD Director, Cerebrovascular and Endovascular Neurosurgery, Winthrop University Hospital Subarachnoid Haemorrhage Jennifer Krawczyk, MD Clinical Assistant Professor, Department of Internal Medicine, Division of Emergency Medicine, University of California at Irvine Brain Aneurysm Federico C Vinas, M Consulting Surgeon, Department of Neurological Surgery, Halifax Medical Center Life Expectancy After Perimesencephalic Subarachnoid Hemorrhage Paut Greebe, RN Gabriël J.E. Rinkel, MD Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Centre, Utrecht, The Netherlands.
  4. In the UK, you are legally required to notify the Driver and Vehicle Licensing Agency (DVLA) of any medical condition that may affect your driving. This includes subarachnoid haemorrhage, whatever the cause. You should not drive until you receive DVLA approval and your doctor has confirmed that you are fit to continue driving. This could be anything from a few weeks to a year or more. The procedure is explained in the following leaflet from the DVLA: Customer service guide for drivers with medical conditions You should also tell your insurance company about your condition or future claims may be invalid. Driving against medical advice may also invalidate your insurance. If you are in any doubt as to whether you should drive or not, you should contact the DVLA (see the links below) or ask your doctor. This information applies to the UK only. The procedure in countries other than the UK may be different. Useful links: How to tell DVLA about a medical condition What happens after you have told DVLA about your medical condition
  5. Intracranial Bleeds Simply speaking, this is any bleed that occurs within the head. A subarachnoid haemorrhage is just one type of intracranial bleed which occurs over the surface of the brain, due to a weakened artery. It causes cerebro-spinal fluid to mix with the blood- hence a lumbar puncture (drawing off some spinal fluid)can often be used to detect a bleed. Although CT and MRI scanning will more likely have been carried out first. There are around 8500 cases in the UK every year, predominantly in the 40-65 year age range, with 3 cases being women for every 2 of men. It is a potentially serious life threatening condition, where statistically around 10-15% die before getting to hospital and 50% within one month of the occurence. The nature of the bleed will likely be different in each case as will other factors, but common in most cases will be headache, nausea, vomiting and neck stiffness. Sometimes there is seizure, loss of consciousness and disorientation. In 75% of cases a ballooning out of an artery forms, this is called an aneurysm where the vessel wall is thinner and bursts under pressure. An aneurysm may have been slowly forming since birth or childhood. An angiogram, which maps out the blood vessels in the brain, will be used to locate such potential weak points and there may be more than one. Pre-disposing risk factors include smoking and high blood pressure. The aim is to stop a bleed recurrence which is usually done by clipping or inserting platinum coils within the aneurysm. In 15% of cases the cause is unknown - whatever weakness was there has gone - the angiogram will have been negative and it is said that no vascular abnormality was found. In 5% of cases there will be what is called an arterio-venous malformation (AVM) where arteries and veins have joined from birth in a haphazard manner. Risks After a SAH there is a short term risk of getting what is called a Vasospasm, where there is a narrowing of some blood vessels in the brain. This gives rise to an increased risk of a stroke, so medication such as nimodipine is likely to be prescribed as a precaution in most cases. With a SAH, the blood surrounding the brain sets up an acute irritation but it will eventually be re-absorbed in a matter of weeks. In some cases the blood can cause problems with the normal drainage of the cerebrospinal fluid (CSF) which can build up and cause hydrocephalus - If this happens, then it will need to be drained off manually. There is also a possibility that some people might have seizures or epilepsy due to abnormal electrical discharges in the brain. General symptoms following a SAH Timescales vary but many will be short term Headaches Tiredness Short term memory Lack of concentration Emotional issues Anxiety/Lack of confidence Anxiety of family members Noise sensitivity Feeling stressed more easily Limb weakness-physio may be required Slurred speech/difficulty getting the right words Some problems with vision Some personality issues NB: As there is a general lack of information about, I have put the above very brief list together from a number of sources. I hope you find it useful. There will no doubt be persons who are members on this site who can offer their personal opinions on specific issues which we hope will be of help. Please note I am not a medical professional, the above is a generalised guide only and you should always seek advice from your health professional/Specialist.
  6. Sleep is really important to us and any disruption to your sleep pattern or quality can really affect how you feel and how you react to your situation. In the early days post haemorrhage you may find that you are sleeping most of the time. The brain can become very irritated by the blood which is surrounding it and there is for many an overwhelming tiredness that presents itself for weeks or months. I remember having a bath and then having to go to bed-at all times of the day. It was very frustrating …but quite normal under the circumstances! We are all individual as to how much sleep we need and people under normal circumstances can range from needing 4-10 hours with the average being around 7-8 hours. This may increase if you are under any degree of stress. Having moved out of the early stages of a SAH when sleeping too much is more the norm, you may find that at varying times your sleep pattern is disturbed. It can be an anxious time and we can get any situation totally out of all proportion when we are suffering from a lack of quality sleep. Here are some rules to try to help you achieve regular better sleep:- Never oversleep Try and set your body clock-Sleep and wake at a regular time. Try and exercise and keep active-especially if you haven’t slept well. Walking ,swimming and cycling are good. Don’t be tempted to nap after losing sleep. Maintain a regular bedtime-it can be as regular as the hours when you feel hunger. If you have trouble sleeping and are getting only 5 hours then go to bed later initially with the aim of waking at “normal” time (so for 6am waking if possible go to bed at 1am or as late as you can make it) When you have your 5 hours sleep move the going to bed time earlier the next night by 20-30 minutes and so on. Try and establish a routine-Relax 30 minutes before going to bed-watch TV (something light)-listen to some relaxing music-take a long warm bath-some need a clean and tidy environment to sleep in-write a list of any must do items for tomorrow ..and relax! Do some gentle stretching or relaxing techniques. Eat 4 hours before you go to bed. Some may find that a drink of warm milk or eat a slice of wheatbread or other carbohydrate may help. Avoid Caffeine from late pm (tea/coffee/cola/chocolate) Avoid red wines/cheddar cheese/imported beers and fermented meats such as pepperoni or salami. Avoid alchohol as it gives a shallow disturbed sleep. Avoid long term use of sleeping pills if possible as they give a disturbed sleep pattern. A cool room (about 60F) is best . Consider using ear plugs if noise wakes you easily. What about Insomnia? Well-worry and anxiety can increase our daily stresses. If you are awake and can’t sleep, get up and do something-like write a letter-don’t eat, drink or smoke - go back to bed if you feel tired again. If you are awake at 4 or 5am you may be better off getting up and starting your day, but do try not to fret too much about this. Do try and maintain regular exercise and consider some form of stress management programme if you struggle. Counselling or seeing a GP may help if things are really difficult. If you are prescribed sleeping pills then try not to use them every night-If possible one night in 3 is a better option. Use them through the difficult time then try and cut back. Things like Nytol can be useful-but again not every night and do read the guidance on the box before using any drugs. As an alternative there is a herbal variety of Nytol and other herbal remedies. I hope you find this helpful but please seek professional advice if you are having prolonged difficulty.
  7. A Daily Activity Schedule may help you with organising your day, if you are suffering from memory problems post SAH. The schedule below, was kindly submitted by Louise and formed part of her own rehabilitation post SAH. The Daily Activity Schedule (DAS) provides a way of keeping a record of your activities, which you can refer to for: Remembering events Building a routine Planning By providing a structure for past, present & future, it will prompt your memory to remember more detail. 1. RECORDING Initially use the DAS as a basic record of you activities. Note briefly the activity you are doing at a particular time, making sure you note it at the time of the activity. Using symbols or pictures can make it easy & quick to record & to read. 2. REMEMBERING Once you have been using the DAS for a day or two you can use it as an aid to remembering what you did, say, that morning, the day before, or even a few days before. 3. BUILDING A ROUTINE Organize your time, using the DAS so that those activities which you do everyday (e.g. taking pills, eating lunch) are scheduled at the same time throughout the week. Introduce any changes in your routine one at a time, week by week, to avoid confusion. 4. PLANNING Make a note of planned events as soon as you know when they will be. For example, if you plan to meet a friend in a few days time, note their name & the place at the appropriate time. If there are activities which you know you will be doing everyday at a certain time, write these in ahead of time, perhaps using red ink, so that you will know they are important. OTHER USES Gradually you may wish to become more spontaneous & flexible with your time. Each evening, or first thing in the morning, plan your day, ensuring that you include a variety of activities to make sure you are not spending too much time sitting around the house. REMEMBER •You should look after your DAS yourself. •It will help to prompt your memory. •Your relative can help you plan your activities – but DAS is to help you be more independent in remembering them.
  8. admin

    Fatigue after a SAH

    Fatigue seems to be something that all SAH survivors experience on Behind the Gray, to a lesser or greater degree. The definition of Fatigue - Fatigue (also called exhaustion,lethargy, languidness, languor, lassitude, and listlessness) is a weariness caused by exertion. It can describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one's normal abilities. Mental fatigue, on the other hand, rather manifests in somnolence. Somnolence (or "drowsiness") is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods (c.f. hypersomnia). It has two distinct meanings, referring both to the usual state preceding falling asleep, and the chronic condition referring to being in that state independent of a circadian rhythm.” (Quoted from Wikipedia.) Many SAH survivors on this website, would agree that the fatigue factor, does slowly improve with time, but many survivors still seem to experience fatigue many months and years after their SAH and still consider it to be problematic in their day to day life. Many would also say, that they haven’t returned to normal levels of activity since their SAH and that when they have increased periods of activity, they then have to make allowances, either by making sure that they have a period of rest before the activity, or that they can allow themselves a period of rest after the activity. The level of fatigue can also depend on other factors, such as whether we are experiencing depression, anxiety etc. The reason for the continuing fatigue that many of us suffer following a SAH is still not entirely clear. The bleed is often around the area of the Pituitary gland and Hypothalamus, hence, posing the question of a possible endocrine dysfunction. Hopefully, more research will be carried out in this area, as it's clear that many SAH survivors would benefit and enjoy a better quality of life post SAH, if the fatigue issue could be helped, even if it couldn't be entirely resolved. (I would also advise any SAH survivor, to visit their GP to rule out other possible causes, if they feel that their fatigue is excessive or worsening.) http://en.wikipedia.org/wiki/Hypothalamus http://en.wikipedia.org/wiki/Pituitary_gland Individual accounts of fatigue from Behind the Gray members can be found below : - Sami – “I used to get the fatigue quite badly in the beginning ... my turning point was my first holiday after my SAH - a year later. It was the first time that I didn't need to sleep during the day and I haven't really since a year on.” Evelyn - “I still suffer with a lot of fatigue, pain and weakness, even after 3 years. My pattern of sleep has undergone changes. At first, I couldn’t sleep at night and I would only get 4-5 hours in the morning and I would take naps. Now, I have times, where I will sleep 10-12 hrs or it can be 6-7 hrs. When I have a long sleep, I can have very vivid dreams. I no longer need to take naps during the day, but sometimes need to sit and vegetate for at least an hour, if say, I’ve gone shopping. I don’t like anybody talking to me during that time, it makes me feel irritable.” Janet – “I used to get it a lot in the first year. I do still get it now and again and had a bad case in August, which was why I cut my hours at work. I think it’s not listening to my body and letting myself get overtired ... stupid I know, but sometimes I just push myself a little too hard.” Keith – “Fatigue is about the only legacy I have from my SAH after 2 and a bit years. It got better up to about a year, but even now, the fatigue still hits me pretty hard sometimes and it takes me much longer to recover from it. My sleep pattern was all over the place following SAH. You couldn't really call it a pattern ... more like random snoozing. The feeling of overwhelming tiredness could come on quite suddenly sometimes. It was probably about 3 months before it got back to anything like normal and I still needed a short nap in the daytime on most days. I've never been one to need much sleep and generally 6 or 7 hours a night is enough and that’s how it was pre SAH as well." Laura – “I agree with Janet about pushing ourselves too hard. I do suffer with fatigue quite often and sleep for most of the weekend. I am working full time though.” Karen – “Well, I still get the fatigue and I'm now 3 years and 4 months on. It's got better and better, but I still have days when it's overwhelming and can't do late nights anymore. I definitely need more sleep, but have noticed that I wake up quite a few times during the night and it's extremely rare for me to go through the night without waking at least once. Vivid dreams are also quite frequent. I no longer need to take a nap during the day. I do have to take the odd “chill out hour”, where I will sit quietly and switch off and like Evelyn, if anybody talks to me during that time, I get pretty irritable!” Elaine – “My Mum Maggie is permanently tired six months on during the day and goes to bed 8.00 p.m. most nights.” Yasmin – “Fatigue the bain of my life... some days I could just lay down where ever I am and sleep, only those who have been through this, can know what I mean. But 2 years post SAH in Jan 09 it’s so much better and sometimes, I can go for a few weeks before it hits me, I have learned to accept it now though it’s just part of the new me, nothing wrong with that.” Jess – “I still suffer fatigue 6yrs on ..... but, not that often now." Caroline – “I am 6 months post SAH, I was fatigued for the first few months after coming out of hospital. Now, I don’t very often sleep during the day, but always sleep well at night from 10 til 6. I haven’t started back at work yet, but expect to be tired then. I have got a bit more energy for doing things now.” Myra – “I am 8 months post SAH. I still get the fatigue and have been told by the Neuro Surgeon it's something that I will have to come to terms with. I get tired doing even the smallest things. I do take naps during the day. The biggest problem is the nausea during the night and I’ve actually been sick. During early recovery, I was having problems sleeping, the hours were so erratic. I was scared going to sleep as I had my rupture about 2.00am and it took a long time not to think about it especially in the exact position that I was sleeping.” Tina – “I am 11 months on since my SAH and I do suffer with the tiredness...sometimes more than at the beginning...maybe because I am trying to do more and my brain is still mending!" Vivien – “I am 18 months on since my SAH and still have problems with tiredness, it just sometimes hits me and all I can do is lie down. However, it is slowly improving and I can recover from just a half hour rest ( not always, sometimes I rest for a whole day to recharge) I also still have problems sleeping but I now sleep for longer than 2 hours at a time and I have had the odd 6 hours in one go!” Julie C – “I'm 9 years post SAH and I still suffer with fatigue, not as badly as in the early days when I needed to sleep most afternoons, but if I get an energy burst I'm sure to suffer for a few days after. AND.... we've been home from our holiday 9 days and I'm still struggling with "jet lag".... Mark was back at work the next day, I took an extra few days off.... but hey ho!” Anne Fleming – “I'm almost a year post SAH (next week). My tiredness has improved over the past couple of months. I'm working full time and I can go out 3 or 4 nights a week, though I don't stay out late. I definitely don't have the stamina I used to have, but hoping it will improve.” Ann – “I am 10 months post SAH and the fatigue got gradually better until the 6th month, then I hit a plateau which I have not moved on from. Prior to SAH I could walk 3 or 4 kilometres followed by a 100 length swim, then go to work in the afternoon and out in the evening. Now I cannot do any of those things on their own in one day. I can now EITHER go for a short swim, about 15 lengths, or a short walk, or half a days work or do the food shop but when I try to do more than one thing in a day, I can't do anything for the next day or two. Even if I do half a days’ work, I can't do it 5 days a week, only 2 or 3 half days. All I want to know from medics is .... is this the new me I have to accept or will it improve?” Michelle C – “My SAH/stroke was 13th Nov 07 and then recoiling done 24th Sept 08. I used to nap during the day which I needed, although shattered, I then had trouble sleeping at night. I don't nap or try not to, during the day now, as I sleep a bit better at night. I seem more fatigued now since the second recoiling. I seem to have an energy burst mid morning, which probably lasts about 1-1 half hours, then I have to sit down most of day.” Sarah – “Fatigue is a major factor for me. I don't need to sleep every day now, but at least a couple of times a week. Sometimes it's so debilitating that I can do nothing but sleep. I think the two lots of surgery exacerbated the fatigue. Surgeon says it will always be there, but may hopefully improve a little. It's the one main thing that I worry about regarding working full time again. At night I am going to bed much earlier, generally, usually around 10pm and get up at about 8am but I will have woken at least once, usually 2 or 3 times, in the night which I never used to do. I also have a lot more vivid dreams than I did before." LesleyM – “I had my SAH two years ago and I still get very mentally fatigued. I think this is because I have to concentrate so hard when doing things. My physical strength is much improved." Louise – “I seemed to level off with the fatigue and then in the 3rd year of my recovery, I seemed to improve again .... Just when I thought that was that! When I first came home from hospital, I was on anti seizure meds, so I would sleep all day if you let me, then when I came off them, I found it harder, now it all depends on what's going on. I have a good couple of days then pow!!! I can lie awake for hours, it's a vicious circle.” Shelscha – “I had my SAH June 2007 and then another brain surgery August 2008, which caused a stroke. Fatigue is still one of the biggest things that I have a problem with. I do not fight it and when I feel I need the sleep, I let my body have it. I still sleep a good 10 to 12 hours a night and it seems that every couple of weeks I have a weekend where I also sleep a lot.” Shiree – “I am just over 8 months on from SAH and did not really suffer too badly with fatigue. I am not as energetic as I was, and am guilty of having an energy drink in the middle of the day (nearly every day) which helps. I never had to have afternoon naps, but I go to bed about 9 - 9.30pm every night and now the nightmares are not as bad, I usually sleep well.” John –“I am nearly 3 years post SAH and have suffered fatigue on and off all the time. It has got considerably worse recently but as you will see from my new post there is a very different reason.” Andy H – “Heather still suffers from fatigue and we are 3.5 years into this. It seems to come in cycles that cover a 2 month period. For 3-4 weeks she will be up and busy with little to no extra sleeping during the day followed by a period of light naps during the day to full blown snore outs on the couch!” Prue – “As the weeks have gone by, I have felt more tired, than I was at the start. Okay, I know it’s early days for me, 7 weeks and I have a longer way to go.... It does frighten me now, to even dare to think about it, especially at the age of 70!” Janet Walker – “I still suffer from fatigue, now 3yrs and 2 months following the SAH. Work full time, I just have to pace myself, but frustrating at times.” Sarah C – “The tiredness factor is still a very big issue for me nearly eight years on. I do really think that in all this time, I have not had one day, where I do not feel tired and like a lot of people that have had a SAH, it is NOT like just feeling normal tiredness, it is overwhelming. I have to quite often go for a sleep in the afternoon; it actually gets me down quite a lot, as before the SAH I was always full of energy and hardly needed any sleep at all.” Perry – “I am certainly a victim of post SAH fatigue, it is early days I know, only seven months since I had the SAH, but fatigue is a major factor! I sleep very well at night (for the first time in my life!) something in the region of ten hours or more and then can sleep for several hours during the day. I too have energy bursts, which last for about one hour or so and then I crash and have to sleep again. I hate it! I was very energetic ,so am finding it very hard to accept! I have just been referred to the Brain Injury Team. Yesterday, my Neuro Physio said that she could and would refer me to their sleep therapist Yay!!” Lesley – “Fatigue was a big problem in the first few months. I had to lie down after completing a few tasks say like having a bath or washing my hair, washing up etc.It gradually improved over the months. The past 2 or 3 months have noticed I've had the odd day were I've not needed my 4:00 pm nap and gone straight through until bedtime (watching TV or reading in the evening though - not running around). But still think the bad heads and fatigue are affected by the weather were I'm concerned. Bad head today and very tired and its low grey cloud overhead.” Cal – “Jim still gets fatigued. He suffered his SAH 12-1-07. 9 days and one year has passed. We did finally get an appointment to see a neurologist. Jim has had an MRI which they said seemed fine but wanted him to also have an MRA so they could use the dye in order to ensure everything seemed fine since he is still very tired all the time.” Zip2me23 – “I am always tired just in varying degrees since my SAH and it has been about 19 months now. I had completely lost the use of my right side so I guess I should be thankful to be up and around. I feel like my brain gets an overload very easy and my legs will feel like lead or I am trying to walk on someone else’s at times which I am having a real hard time with at the moment and it really upsets me. I think it is in the back of my mind when I having this problem that, even though I know it won't, that they will just stop working!" Dee Woods – “I know it's only been about two months since my SAH, but l really do suffer badly from fatigue if I go into town for a couple of hours then that’s it for a couple of days.” Matthew – “I had a non-aneurysmal SAH on March 1st last year, so 21 months ago. I don't get fatigued very much now, but every so often (usually at the end of a week) I simply have to sit down and stop. I need time in which to do absolutely nothing (and, bizarrely, feel guilty about it afterward). That takes about half an hour or so. I also crave peace and quiet! ... difficult with our 22 month old, but achievable.” Terry –“I am six months in and the fatigue is daily. Each time I go to the Doctors I complain that I am sleeping too much. 10 to 12 hours a night and a 2 to 3 hour nap in the afternoon. I think my depression is only making the situation worse.” Paul – “Since my main stroke Dec 2005, fatigue has been a very major factor in my life since, causing big upheavals at work and home. The more you try to fight it, the worse you seem to get. I am currently still under hospital guidance for this problem and i was told today that I should not work full time again whilst having this fatigue. I tried too hard this year and ended up in hospital for 7 weeks, so I have to learn to relax.” Leo – “I too suffer from fatigue. It's been nearly a year now (on New Years Eve) and I still have headaches most days, but the really severe ones aren't as frequent. I sometimes feel like it’s one step forward, two steps back, because good days (where I almost forget about the SAH) are followed by a huge crash - my head feels like it is going to explode and I can barely move with fatigue. On those days my head feels almost as bad as the weeks immediately following the coiling and I get really, really scared.” Tekemeee – “I had a non-aneurysm SAH on July 26, 1993 - I was in the hospital for 23 days in NICU. My major complaint afterwards was being so tired - I had some people tell me that it takes so long just to recuperate from being in the hospital and not being able to move around. It took at least a full year maybe a little longer for me to be able to stay awake all day and not be so tired - I didn't have anyone to talk to back then so I had no idea that this was normal. I wish I would have found this board 5 years ago." Lucie – “I still get tired 3 years on, it's all about learning how best to deal with it, like early nights and looking after yourself. Slowly but surely it gets better!” Vaughan – “I had a SAH coiled in 2005 and a re-bleed in 2007 that was re-coiled. I found the chronic fatigue that meant I had to stop and have a sleep had more or less passed by the time I went back to work six months after the bleeds. But I do still get tired (like most people who work and commute!) and I find the best way of managing my fatigue is to take regular short breaks from work. I am in the fortunate position of being able to take a week off every 12 weeks and do so. If I stay at work more than 15 weeks without a break I get really tired: I feel I am dragging myself out of bed and haven’t much energy. I also find that sleeping in on Saturday mornings helps recharge the batteries."
  9. After Heathers SAH I noticed a significant change in her behaviour. This started way back in the Intensive Care Unit so I will start there. When she was first admitted there was no movement, none, nothing, completely still. This went on for days. Eventually movement began to come back and one of the first thing she did was- wait for it- masturbate!! Well I was a little shocked by this and didnt know what to do other than move her hand away constantly. It got to the point where I had to tell the nurse. The nurse was good and told me that this was normal. NORMAL? I thought to myself, NORMAL? this is anything but normal. I was told that it happens a lot after brain injury and left it at that. So on we move to the ward. During Heathers time on the ward she would often masturbate and ask me for sex. We would go to the toilets and have brief and incredibly intense sex. I thought it was me she wanted and was very flattered. I didnt see what was going on and I put this down to the whole SAH experience. Whilst on the ward Heather would often get lost but, the nurse told me, she could always be found on the mens ward!! I thought nothing of this and put it down to disorientation. Heather was eventually allowed home during the day between appointments and the high sex drive continued. We would get home from the hospital, which was 5 mins from our house, and go straight to bed. I have to say that at this point I began to wonder about what was happening but I put it down to Heather enjoying a new lease of life and to her just having had a near death experience. I was very flattered and very happy at this new development as any husband would be!! A few of my friends that had been round to see me said things like ‘You want to watch her Andy, she is going to get herself in trouble’ but I didnt really here them, I was too busy being happy at having a wife that was alive, recovering and at home. It was during this time that the first incident occured. I will keep it brief and to the point. I saw Heather leave for the shop and watched her walk off. A builder over the road saw her and whistled/ shouted at her and Heather went over. I saw her talking to him and went back about my business. I happened to glance out again and I saw her go into the house. I saw her, through frosted glass, kissing with this guy and couldnt quite believe what I was seeing. I remember standing there at the bedroom window thinking ‘Am I really seeing this?’ I couldnt get my head round it, it was like looking at an M.C Escher optical illusion!! My brain finally kicked in and I ran over to the house. I found this guy with his hands up Heathers top and she was kissing him on the mouth. I wasnt best pleased and didn’t deal with the situation as I should have. Heather couldn’t explain what had happened and I realised that we had a problem. I spoke to our counsellor from the hospital with Heather about this incident and I linked it to her high sex drive. I was told nothing about what the condition was and was advised to get Heather to carry condoms. In fact the counsellor (specialist in brain injury) told me that she had not actually come across anyone that had a higher sex drive after a brain injury before! She put Heathers actions down to being unhappy and disinhibited. I left there feeling slightly deflated to say the very least. On we went. Incident followed incident. My friends told me of text messages and conversations that Heather had had with them. She had invited men from the street to the house. Heather even propositioned my Dad, unfortunatly he encouraged her behaviour and this led to a split in my family. Not all friends told me about what was going on and the odd ‘friend’ took advantage of the situation. I was becoming increasingly frustrated I asked for support from a variety of agencies including social services and was told that there wasn’t really anything to offer. My family did all they could but they lived a fair distance away and all of them worked full time. I still didn’t realise the full extent of how extreme Heathers condition was. I was back at work full time, I was looking after our son, I was looking after Heather, finances, housework, everything was down to me and I didn’t always see what was going on. Eventually Heather wanted to go back to work so we spoke to the OT’s. I told them of Heathers problems but, as they weren’t medically diagnosed, I don’t think they were taken seriously. I arranged a meeting with Heathers employers and Heather was to attend work 3 mornings a week on a voluntary basis. We were both very happy about this. I told the OT’s who were going to be co-ordinating the work experience that they have to explain Heathers problems and that she is to be supervised and monitored closely. Alas there was a communication breakdown and no-one was told of Heathers sexual issues and she ended up sleeping with a male colleague. I was devasted. My partner of 15 years had broken her vows to me and I was devasted. I couldn’t understand it. What was going on? It was nearly the end of our marriage. I had been spending a lot of time researching what was happening. I had access to the internet and spent my time searching for information. I read books, I found people that had experienced similar things and it was this knowledge and these people that saved my marriage. On the one hand I had to deal with the devasted husband side of it and on the other I realised fully that this was another sympton of her brain injury just like her memory, just like her eyesight. This wasn’t the last time that Heather had an incident and it wasn’t the last time that our marriage nearly failed. Heather attended a group for people with brain injuries. People who were used to dealing with this kind of thing. It was there at Osmondthorpe Rehabilitation Centre that things started moving for us. After a number of incidents there they called a meeting and asked me to attend. They told me that Heather was too high maintanence and they were unable to cope with her behaviour towards male clients. Heather was told she would no longer be able to attend. They then sat and spoke with me at length. They explained what was happening and they arranged for a specialist social worker to meet us. I met the social worker. She was fantastic! She arranged for Heather to be fully asessed firstly by herself then by a psychiatrist and then by anyone else that may be able to help!! She gave me lots more info on dealing with any sexual behaviours and how best to challenge it. I then attended a training event run by Headway. The event was about coping as a carer and was run by a guy called Steven Shears. Steven Shears is a trained psychosexual therapist and couple counsellor he also specialises in sex and sexuality after brain injury. I managed to grab him after the session and we arranged to meet in Nottingham with Heather, Steven and myself. Finally we had someone who fully understood. Steven is also, as far as we are aware, THE ONLY SPECIALIST IN SEX AND SEXUALITY AFTER BRAIN INJURY IN BRITAIN!!! There is only one! Surely there are others like us I asked him and he said yes there are. In fact there are too many. Too many for the limited resources, too many left unhelped and undiagnosed. Steven tapes our sessions and uses them to help train others. Heather and I are happy about this as it is an issue that needs dealing with. We are still learning to deal with this aspect of brain injury. Heather takes medication and we see a Sexual Psychiatrist. We still see Steven and we still have incidents. Most of all we are still together. My little family is still here, together.
  10. I'm 53 years old and have been having headaches for quite a while. My GP has referred me to have a check by a neurosurgeon who has ordered me an MRI. It resulted that I have an un-ruptured aneurysm. I then had an ct angio scan which again confirmed that I have an 8 x 7 aneurysm. Now I am waiting for an appointment to have it coiled or clipped. I fear this prolonged waiting from the hospital to have this done as I suffer from headaches and at times these headaches are terrible. However doctor told me that these headaches has nothing to do with the aneurysm and I have to wait as there is a waiting list. I wonder why all this unnecessary waiting and maybe when it ruptures doctors will consider my case as urgent!
  11. I am a 28 year old stay at home mom who had a SAH on October 10, 2013. I don't think that my long term boyfriend of 10 years or other people in my family get what I am going through. Yes, okay I don't have any visible disabilities, but I definitely have physical boundaries that I didn't before, and depression. I get really upset and jump to conclusions way more than I used to and I cry a lot for no reason. I've been on antidepressants and anti anxiety medicine for about 5 months now and it helps but I think it needs adjusted. I don't need sympathy just understanding that I am slightly different now. My brain and body are adjusting. And from being in a bed for a week and not being aloud to move much my tail bone and hips (which were not very good to begin with) are now in much worse shape. I'm am trying to get into shape and not be in pain but it is very slow. If my blood pressure raises too much I get a pounding in the back of my head where the SAH was, and it scares me. My children don't understand they are 3,5, and almost 9 years old. Their Dad just does not get that I have good days and bad days when it comes to migraines and feelings and what not, and its like he expects me to be over it by now...... and that's just not how it works. I was a active person, a little over weight, but active. My best friend always told me she didn't know how I wasn't stick thin because of all the things I did during the day. I always said I know! it's not fair!! But I feel like I'm nothing anymore. I'm this mom, who wears crappy clothes, and has no other identity of her own. This never bothered me before, I was happy with my life. Now its like when the thing in my head exploded it messed up a lot of things in my "mind" not just my brain. I wish I could turn it off.
  12. Hi all, I've been reading peoples stories on here and thought i'd share mine! 26th Oct 2012 approx 7.30pm, i had sold some of my fishing tackle on ebay, ard 2 young lads had came to collect from dudley. I went into my garage with them to sort the stuff out. I remember that i started to feel weird, cant explain the actual feeling but also felt dizzy, the next thing i remember is waking up in Coventry hospital. My partner later informed me that as i was sorting fishing stuff out in the garage, i had collapsed and had a seizure, i was being sick. One of the young lads came bashing on the living room window to my partner and was shouting at her to come quick! She then rang for ambulance and paramedics were then within minutes. She also told me that i had lost the feeling in my right arm and leg immediately after having the seizure. The paramedics were going to take me to the stroke unit at Royal Worcester hospital, they changed their mind as soon as i said that my vision had gone, it may have only been for a few seconds but that made them change their minds and take me straight into resus. It was there where i had my first CT scan which revealed i had suffered a ruptured aneurysm/SAH. All the time that i was there, apparently all i kept on saying was that my head it going to explode, i continued to vomit and was given some anti-sickness meds. Within about 5/6 hours i was on my way to Coventry where i would spend the next 3 weeks of my journey. I was sent straight to the step-down unit which is a high dependency ward, and then was sent for an angiogram during early hours of night which revealed a bleed around the size of a 50p piece. I still dont recall much of this at all and my partner has had to fill in many, many gaps. I was given the choice between having the coiling op or the craniotomy, apparently i gave my permission for the coiling op to be done even though it came with the higher risks, i dont even recall signing the form but i did. I had the op done 29th Oct 12. My family got a phone call from the hospital the following day, to say i had gone a little downhill and were moving me to critical care. Apparently i was very agitated and was suffering from lack of sleep, the doctors decided to put me into an induced coma. I was put onto a breathing machine, hooked up by a tube in my mouth, they said that with them doing this it would give my body the rest it needs to recover. They kept my blood pressure high to make sure the blood forced the vessels in my brain to stay open as they thought i was suffering from vasospasm, which indeed i was. I also came down with pneumonia whilst on the breathing machine. Doctors then changed the breathing tube in my mouth of the trachea tube so they could try and bring me around easy, they tried on the 4th day (3rd Nov) but as i came round i was trying to pull the tubes out so as i wouldnt calm down they put me back under. I finally woke up on the 6th day (5th Nov). It was such a shock to be awake but unable to speak, i was sure i was speaking but nothing was coming out. The nurses gave me an etcha-sketch so i could try and communicate but as i was right-handed and it was that side that i had weakness, i couldnt manage it. I finally had the trachea out on 7th Nov and was moved back to the step-down ward. I had daily visits from the Physio and the OT nurse, i was taking little steps on the way to recovery. It was hard but i wanted to go home to my partner and 2 young children! I was eventually discharged 13th Nov. Even though i struggled a little at home, i was so glad to be back. I knew i still had a lot more of recovering to do but i was on the right path. i still have weakness in my right hand and i have accepted that it will never go back to normal, i also suffered with nightmares, which my doctor prescribed me some sleeping tablets so they have seemed to eased off a little, i also went into depression and am still dealing with that now but I'm just so glad i can look forward to the future!
  13. 7th December 2012 started like any other day, little did I know what it had in store for me. I was standing in street chatting, and my hearing went very muted followed very quickly by a sudden and extremely painful headache. There was no collapse or any other symptom. I managed to get in my car and drive home, in the hope that whatever had happened would clear by itself. It didn't! I phoned my GP and got an immediate appointment, I drove myself to the surgery and explained what had happened to my Doctor. Now I'm the kind of guy who is never ill, the odd cold but nothing more. My BP measured 210/130 and my headache was pretty bad. The Doctor decides that I have a migraine, and offers to refer me to a migraine clinic (he is no longer my Doctor). I return home still no feeling to good, by this time my wife is home and can tell instantly that something is wrong. After a bit of arm twisting she talks me round and off we go to A&E. I feel like a bit of a fraud as I'm walking and talking and 'only' have a headache. Doctors in A&E examine me, but apart from a high BP and a headache they find nothing else. It's now late afternoon and they decide to keep me in over night. I have a very poor night with little sleep and only paracetamol for the pain. In the morning I am taken for a scan. I feel ok except for the headache, so after the scan I rest back on the ward. My peace is soon shattered when two Doctors come dashing into the ward looking for me. I'm told that I have suffered a SAH and that I would be transferred to a Hospital in Newcastle, an ambulance was already on its way to collect me. I'm thinking what is a SAH? Out comes the phone and I google SAH, I don't read to much as it isn't good reading. I arrive in Newcastle and immediately started on Nimodipine and given a more in depth scan. It's decided that I need surgery to coil a ruptured aneurysm. All goes well and I spend 10 days in Hospital. The pain at times is pretty bad, in fact it's the worst I have ever experienced, even morphine doesn't help at times. The scan actually showed two aneurysms and I was to return at a later date to treat the second. I was called back in March 2013 to have the second one coiled. Unfortunately that was not successful, and a craniotomy and clipping was recommended. The clipping was carried out in August 2013, this was without doubt the most daunting time of my life. Thankfully I have come through all of this virtually unscathed. In February 2014 I even returned to my full duties as an operational Firefighter, something I thought would never be possible. So many people to thank along the way, Family, medical staff, my employers and friends.
  14. Hi all, Having read a lot of the posts on this website, I have alternately been cheered and depressed as I've gone through them. In the hopes of adding to the "cheered" column, here is my experience. 19th December, sudden crackling sensation in my neck whilst out at dinner with friends. 5 minutes to see if it went, then 999, then to my local hospital. Their assessment needs a little work, they left me alone in a wheelchair for an hour, bleeding into my brain, although they couldn't have know that. After 5 hours, someone thought to get me a CT scan. I remember them saying they had found some blood in my brain and then - nothing. I woke up 18 hours later in Coventry hospital, having had a burst aneurysm, a sub arachnoid bleed and then a coiling procedure. 20th December - relief. Never mind the crossed eyes, double vision, headache and catheter - I'M ALIVE !! 21st December - Headache gets worse, I have an infection from the catheter and hydrocephalus (water on the brain). 22nd Headache worse, lumbar puncture number one. Pressure should be 10-12, it's 29 23rd, lumbar puncture number two, pressure 26 24th, no lumbar puncture, due to increased risk of infection etc. 25th, Oh god the headache, time for another lumbar puncture. Pressure 40! 26th. Headache easing 27th. Catheter out, and I con the night staff into thinking the day staff gave me permission to walk to the toilet for a number 2. Walk (stagger) over to the loo, with my bum showing (love those gowns). 2 and 1/2 hours of blessed relief. Headache still easing 28th Headache coming back, lumbar puncture 4. Pressure 17 29th Headache going. 30th Headache gone, also opthalmologist comes in and tells me my crossed eyes are the result of pressure on the brain. Cobblers of course, as I have no headache, but the only way to prove that is another lumbar puncture. 31st. I request another lumbar puncture, to prove that the hydrocephalus is gone and the opthalmologist is wrong. "No ones ever requested one before", says the consultant. 31st. Pressure is 13. Whoop whoop. 1 hour and 20 minutes later, I'm transferred to the general neurology ward, where I will stay for between 1 and 2 weeks. 2 days 23 hours later - Discharged ! Folks, the reason I'm sharing this is that I now understand, having had a heart attack 8 years ago, that your own attitude can make a difference. Not always, but the nurses in both cases confirmed my theory. I got out in 3 days by getting dressed, drinking every cup of tea offered, glugging down my 3 litres of water a day, sitting in the chair to eat meals and walking up and down the corridors so the docs and consultants saw me. I have transferred the same positive attitude to the post-hospital period and here's what's happened so far. I live alone so asked my ex-wife and daughter to stay the first night, then just my daughter the second night. Cross-eyed, dizzy, absolutely knackered, with no interest in tv, reading or going outside the front door, I was very shaken by going home. That was 4 weeks ago. After 2 weeks, my eyes straightened out, I started walking outside. Last week, I played 5 holes of golf. Saturday, my consultant said that because I had had coiling and no seizures, I could start driving again. I didn't know how to tell him I had already tried twice, the second time driving my Porsche 911, 10 minutes before I sold it. All the horror stories about people not being able to drive after an SAH are absolutely true. What isn't appreciated is that if you don't drive for 6 months, and your eyesight isn't 100%, and your confidence has taken a hell of a knock, then it's no wonder people are affected. So, without being patronising, get someone to take you to some private land and just drive the car for 1 minute. It WILL make you feel better. Get out of the house for a bit too, it's not helping you as much as you think. We all know about those people who say "the glass is half full, not half empty". I could punch them too, haha. For me, it's simpler: I either spend time saying "Why me? Oh God, I can't do this, this or this anymore" or say "I am one lucky *** to still be here, how can I get fitter, stronger, lighter (17 1/2 stone). I still get completely knackered for hours at a time, I hate loud noises, can't take 2 conversations at once, or one conversation plus the telly, so I think I am the same as all of us. I set myself one job per day, if I can't do it first thing, I rest and do it later. If I can't do it later, I bump it till the next day. I just want to share the joy of little steps (seeing straight) and big steps (driving!) I wish you all a good recovery and if I've helped just one person feel a bit happier or more hopeful, mission accomplished. Kind regards, Nick Metaxas
  15. admin

    Jenni's Story

    Hi all, Before I start on my story I just want to say thank you. I have been reading things on this site since Nov and picking up courage from others and picking up courage to write down what happened to me and where I am now. So here goes; On the 11th October 2013 I was up early for work, I was going to a meeting at a secondary school. I was on the landing when my husband found me. I only remember bits from here on. I remember packing my son of to work and have a vague recollection of the ambulance but that's it. All my other information has come from my husband and sister who were both there for me, with me throughout the following 4 weeks. I was taken to hospital and it was within the first hour that my husband came to understand how much I needed him to be alert and to protect me. On the way on to the ward I stopped breathing, the nurses hadn't noticed Andrew did and alerted attention. My heart didn't stop so I was rushed to an oxygen thingy but it wasn't working and my husband had to help get me to another area where an oxygen thingy was available. My hubby was really shocked to be asked by a 'doctor' who didn't think to introduce himself whether he would want me resuscitated the doctor added that it wasn't wise to resuscitate. My sister told me that she and Andrew stood with mouths open shocked that within the first three hrs they were being asked this question. I was also shocked when I was told this later and would love to walk back into the hospital to say to this person, 'I am the person you advised that resuscitation was not best option' He would be shocked, I hope. Anyway my hubby had words! I was sent to Leeds General Infirmary intensive care unit where Andrew tells me the care was brilliant. I was there two weeks I was coiled and also had to have a drain put in because of the fluid building up on my brain. I dont know the exact order of things but do remember things like, pulling the tubes out of my nose! Dont know why I did that it was extremely painful and I remember my sister and nurse trying to stop me and of course the tubes had to go back in. I was obviously out of it and I think of my family wondering just how I would end up. What of me would be left to take home. I am so proud of my family, I have four children, 3 boys and a girl, all adults, well my daughter started at the university of York in the September and is 18yrs old. My second son went to York to pick her up to bring her to hospital. He told me later that he didn't want her getting the train as the car journey would give her chance to talk. It was only when he told me this that I realised how close to death I had been, the family were coming together in an emergency that included the possibility of my death. (I have felt very guilty about that.) After two weeks in intensive care I was moved to a more general ward and have to say was less than happy. I know nurses are rushed and have been cutback but what allows a person to forget about human being stuff? I was ok I had relatives coming daily staying as long as they could and looking after all my needs but not everyone has this. The older lady opposite me would ring her buzzer because she was in pain or because some idiot had put her drink out of reach etc and nurses would just not come. I got to getting out of bed to try to help her or to go to the nurses station to ask them to come and help her, it was always, 'We will come in a minute' then nobody would. On one occasion she was falling nearly out of bed and I was not strong enough to help her and had to go stand by the nurses station till someone came. Not acceptable! You are so vulnerable in hospital. I was on this ward about a week and a half and hated it. Eventually the day came for me to go home. My sister told me later that they had suggested another week but that Andrew knew he could provide better care at home. He was right! I have been so pampered! Breakfast in bed, cup of tea then eye drops and medicines etc. I love Andrew and my family so much and Andrew and my sister Lesley have cared so well for me I can never thank them enough. My sister told me that when Iwas first admitted and everyone seemed to be presuming that I wouldn't survive or that if I did it wouldn't be good that this was the scariest point in her whole life. She also told me that Andrew stood firm throughout and was always convinced that I was still in there. I have been so lucky. I have had to have an operation on my left eye as the blood didn't clear by itself leaving me blind in that eye. I am a right scaredy cat and had to have general anesthetic for the op when most people apparently have it done awake. I can see now! However apart from my eye, weight loss and extreme fatigue I have come through ok. I am now at the stage of thinking about going back to work. I haven't decided when yet but it will have to be before April when my wage will drop to half pay and our family finances cant manage that. I have read everything on here about returning to work and its really helpful. I think I kinda have to go back to find out what its like in order to make a decision as to whether I carry on or take early retirement. My boss has been fantastic and is arranging with occupational health for them to offer support to look at all my options and he has not put me under any pressure. I work for the Safeguarding Children Board and work can be very hard and stressful but I think I will cope with that. I am more concerned about just being in a very busy place. I went to the Xmas meal, everyone just brings in food, we dont go out. It was lovely to see everyone, I was very much in demand for hugs, however it was the number of people and the business that got me and once home I was straight back to bed. I have one other ongoing problem and I dont know if anyone else has experienced this or knows anyone that has. My sense of smell has gone skew wiff! All smells are wrong. The worst is when my husband is cooking me a wonderful meal and all I can smell is Poo. Yes you read it right, Poo! This is horrible and I am eating by memory in respect of taste but some foods well I just cant eat them. So if any of you have heard of this or had the same please let me know. Thank you for reading it felt good to get it on paper. Jenni
  16. Hi, when I tell people the circumstances surrounding my SAH they are surprised and usually delighted. I work for the NHS, and had just left a meeting on a hospital site. After turning on the car engine, and turning up the heater ( it was November) I suddenly felt an overwhelming sensation of weakness. I took some deep breaths and waited for this strange feeling to pass. It didn't, so I tried to wind down the window but couldn't grip the handle, and began to realise that something bad was happening. I tried to get my phone out of my bag, but couldn't get my fingers to search and locate it. I remember watching the time on the clock in the car as I knew it was important to log this, and then felt myself slide to the side and knew I was passing out. I came too again 15 minutes later, knew I was in bad shape as time had passed, and the heat in the car was overwhelming. I started tooting the horn to attract some attention, and no one came for a wee while. I had to take rests as I was frightened of passing out again. I started screaming too as no one was coming. I was strangely calm throughout as if I had every confidence that help must come. Then a doctor, nurse and porter all converged on me and thank fully got me the help I needed. I don't know who they are, but every day I thank them! I was parked in the car park outside the neurosurgical unit, and was in the Neuro Unit in no time getting fantastic care. I left hospital 12 days later after surgery, and have made a fantastic recovery. All the little niggles that still dog me are all tolerable compared to how things might have been had I left the meeting a few minutes earlier, and had my SAH on the M8, instead of the car park. 14 months later I'm back at work on 30 hours but struggling. I had a big shout for rest from my brain on Sunday when I found it very difficult to get up and about, and have been on house arrest for 2 days as my head feels too heavy for my shoulders, and my face feels like its being pulled up towards my wound, and everything is too difficult, and as for plot lines......even reading is a challenge. But on the upside I know I will bounce back because I know how much progress I've made in the last 12 months, that it is doable, so I'm not discouraged, I will be back to work in a few days and my fantastic colleagues do not have high expectations of me. My boss said during my first few weeks back-I don't expect you to remember where your hand bag is, never mind where the work is! I still laugh at that because the whereabouts of my handbag was the only thing I could be definite about ! in a couple of months I've been able to pick up most of my duties, but very slowly, and it is hard. Everything has to be not quite re learned, but done more slowly and thoughtfully. I get easily confused, mixing people up and having to redo things quite a few times before I get it right. Convinced I'd sent emails, but sent box empty....groan. I'm hopeful I've still got more recovery to come, but if I don't I can make do like this- the worst thing was realising I might not be here any more. The headaches, tiredness, irritability, forgetfulness, lack of spatial awareness-my husband can't see much difference from before the SAH-lol-I'm used to now, but must stress I see improvement over time even if it now happens more slowly. As the wonderful letter on the homepage says, the brain needs looked after so when it wants a rest, I will listen-I got a warning this weekend, and will not ignore the next one! This is a great site and I wish everyone recovery x
  17. Hi from beautiful New Zealand, On 31 July 2008, without any warning - no headache, no ache of any kind, no tightness, nothing, I just collapsed as I was about to open my fridge. I don't remember anything until I woke up in hospital. I was told I had suffered a stroke. I had the usual tests, was poked and prodded and asked the same questions a dozen times. My eyesight was blurred and I had trouble keeping my focus still, I could not walk unaided, but other than that, felt fine! I stayed in hospital for 3 weeks and had lots of physio for the eyes and the legs. When I left to go home, my eyesight was no longer blurred, but my left eye would flicker when I focussed too hard on something. I could walk unaided taking little steps. The final diagnosis was a brain stem peremesoncephalic bleed. Caused by high blood pressure because of stress. I went back to work after 6 months, doing part-time for 6 months, and then full-time. Now, over 5 years later I feel great when I am sitting or lying down, I can drive, I am still working full-time and enjoy almost everything I did before "my fall down". My biggest problem is when I am standing. My head feels like a goldfish bowl half full of water. It sloshes around and makes me feel like I am constantly going to fall over. I walk watching the ground immediately in front of me, looking for uneven surfaces, or anything that might cause me to stumble. I have trouble walking down stairs and get tired if I have to walk very far. I have asked my doctor if things will ever get better, and she shrugs her shoulders and says "the brain is an amazing thing, who knows what could happen?" So, every day I hope for the best, but as the years have rolled by I have started to believe that this is it, be thankful for what is positive, and try not to dwell on the negative. I know I am so much luckier than some people, but occasionally it does make me feel a bit miserable. Finding your site has helped me today, as I am in a sad mood, thinking how nice it would be to take my dogs for a long walk along the river bank like I used to. However, one thing that you may find interesting is that since my incident I have not suffered a single headache, so I do feel for the people who have reported they have lots of them and real bad ones. Good luck to you all Sue
  18. I think all of us would like others to understand what some aspects of our life are since our SAH I wrote this for a TBI group on facebook. I would like to share it here How do you explain to someone what it is like to have a brain injury? This is just one aspect, but I hope it helps. When I first went back to work after my brain hemorrhage I thought I was ready to take on the world. I took all the tools I needed with me to the job site, got out of the car, looked around and panicked. I had done this job for years. I knew what I had to do, I couldn't do it. I put the tools back in the car and drove away. My first thought was, well I don't feel like doing that part of the job I will tackle something else. It wasn't until much later that I was even aware there was a problem. So if I wasn't aware, there was no way I could explain to others. Since then I have discovered a simple way to explain what went wrong. Every job we do can be broken down to a flow chart. Even simple things like making coffee or doing dishes. Every one of us did those jobs before, second nature to us really. So lets break down each step and put them on index cards. Take the task of making coffee for example. I will break it down for a regular drip style coffee maker. 1. Check to see if the coffee maker is clean and empty 2. If it is not clean or empty, empty the old coffee in the sink and rinse out the pot 3. Check if the coffee bin has an old filter and coffee in it 4. If so dump the filter and coffee 5. locate the new coffee filters 6. place a new coffee filter in the bin 7. locate the fresh coffee. 8. locate a measuring scoop and measure out the correct amount of coffee to put in the filter in the bin 9. close the lid. 10. fill the pot with the correct amount of water 11. pour the water into the water reservois in the coffee maker 12. close the lid 13. place the coffee pot onto the burner 14. turn on the coffee pot 15. wait till the complete pot has been brewed 16. get a clean coffee cup ready 17. remove the coffee pot and fill the cup 18. return the pot to the burner 19. add cream and sugar to your coffee if required. 20. enjoy your coffee There were 20 steps to this process, and that is assuming the coffee maker is plugged in and nothing goes wrong, This is a simple task that many of us do every day. So you have 20 index cards with step by step instructions. Now shuffle the cards. There are no numbers on the cards. You know you can perform each task, you have done it hundreds of times. Follow the instructions on the cards the way they are presented to you. What happens if you turn the coffee pot on before you put water in it. Or if you don't dump out the old coffee before you fill it. Only 20 steps in this process yet your mind will not let you do it. All the information you need is here, right before your eyes, yet the process is flawed. Think of how frustrating that is. Now we all know this is the 20 steps required to make a cup of coffee. How about finding those 20 index cards, and not really knowing what the purpose of the cards is, what the outcome will be. Not knowing what sequence you must follow. People with brain injuries deal with this on varying levels every day. Many are not even aware there is anything wrong. I hope this analogy will help shed some light on just one facet of the SAH survivors mind.
  19. Hi everyone. My name is Ken. I'm 49 years old, and on October 19, 2013 I had left work early as usual for a Wednesday to make my way down town for night school. Night school courses for me are more like "recreational education" and I've taken courses in Mandarin, Interior Design, Manufacturing Supervision, and have gotten TEFL certificate to teach English overseas. Anyway, as always, I was in a rush, and arriving home, I hopped into the shower. As I was rinsing off, I felt a huge pressure begin to build in the back of my neck. It last for about 20 seconds, then I felt it release, and the pain began. It was the most pain I have ever felt, and having had ruptured discs in my back, I had my share of intense pain. I was able to make it into the living room, and called my lovely wife Ying, who was on her way to give my a lift to school. She was about ten minutes away. My tenant downstairs heard my distress, and called the ambulance. This made all the difference. Moments after calling her, I was vomiting, and unable to move. The paramedics got me into the ambulance, and to the hospital about ten blocks from my home. I have very little memory of that hospital although I was there for several hours before being transferred to another hospital that deals with brain trauma. Once there, I was isolated and literally kept in a dark room for two weeks. At this hospital they told me that I had suffered a massive subarachnoid hemorrhage. My nurses were all wonderful, and in two weeks I was able to stand and begin to move about a little. At that point, I was sent home, and with my wife at work, I set about finding out what had happened. To say that I was shocked at the statistics concerning SAH would be an understatement. What was even more shocking was my appointment with my GP yesterday, Dec 6 2013. She came out and called my name, and as I passed her, she said "I'm so happy to see you. I'm just amazed that you are alive." Three times in that visit, she reiterated that same statement. She said that she had looked through all the material and CT scans that the other doctors had sent her, and was shocked to see that I'm walking and even driving again. I know I should be happy to be alive, and believe me, I am overjoyed to be alive, but part of me knows that much better people than I have died from this. The emotions I keep experiencing are quite new to me. I find it very difficult to talk with anyone about this, and felt that, perhaps if I could find others who have gone through this, there would be a common frame of reference and it would be easier to discuss. Sorry for long-winded story here.
  20. Hi Everyone My name is Minna and I look into BTG every day but have never posted before. Yesterday I had my 2 year follow up and thought I would be discharged. However not to be, as a bulge has appeared on the artery next to the original explosion site. It only measures 1.5mm at present but it wasn't there at all a year ago. A minor set back I appreciate compared to what many have to deal with, am still a bit fed up though! Hope everyone is as fine and dandy as they can be! Minna
  21. admin

    Alison Q's Story

    Hi Everyone My name is Alison and I'm 49 years old. I have a husband and two grown up sons, a little Grandson and I also have 2 horses, 1 dog and an elderly cat. My life changed on 9th October 2013 and I would love to hear from everyone. It is such early days for me and I am very anxious about what has happened to me and what might happen next! I will tell you my story .... On Wednesday 9th October I was at home in my kitchen. I had a total knee replacement back in June, then another operation end of August so I had not returned to my working as I was still struggling with pain and walking too far. However, I had planned to visit my yard and have another small ride on my horse as I had just started riding again after many months! Suddenly I had a severe headache which made me scream and lean over. It lasted probably a minute but then gradually reduced and felt like a migraine. I didn't know what it was but I was able to walk around. I took 2 Paracetamol and 2 Tramadol (given by my Doctor for my knee pain) and thought it was just a migraine. And no, I have never had migraines! Rather stupidly, I drove my car, picked up my friend and drove to the yard. My friend said I looked pale but had also said I seemed "strange" and very quiet. We sat in the field with my horses and everything seemed fine. We went for a sandwich but I didn't fancy eating anything but felt fine in the afternoon and had a ride on my horse for 20 minutes. Funnily my knee was really hurting and I thought this was the problem. I was quiet driving home but I honestly did not see anything major going on. Again, was quiet and didn't eat dinner so told my husband I felt tired and had a migraine so went to bed. The next day my head was still hurting so had a quiet day at home but I did notice some dribbling on my jumper!! I could not understand about this and I thought looking at a mirror my right face and eye looked sore. In the afternoon my oldest son came back from work and said I wasn't answering properly - but again there didn't seem to be anything major. I didn't eat dinner again and said I was still tired but my oldest son kept saying I needed a doctor. I said no because I still had a migraine! Eventually my son decided to call a paramedic who came and saw me then called an ambulance for Calderdale Hospital - I didn't seem to understand why! I was ages at A&E and asked me loads of questions but I was still sure I had a migraine! Eventually they decided I need a CT Scan and CT Angiogram - and then I finally understood after their neurosurgical discussion. The doctor confirmed: "Large Acute infarction of Middle Cerebral Artery territory, 13mm aneurysm of left MCA bifurcation - thrombosed". Basically they say it was an aneurysm that ruptured causing a subarachnoid haemorrhage and I also had a stroke. I was taken by ambulance to Leeds General Infirmary which seems to be the expert place! I was 1 day in Intensive Care, 8 days in High Dependancy then 3 more weeks for the Neuro Ward. They did loads of CT's, ECG's and a Nimodipine 60mg every 4 hours for 21 days. However, they haven't done any operation yet and there seems to be lots of discussions and debates over what to do! They told me I was rare - I have stopped bleeding and have a clot but for the moment it just "stays the same" for 4 weeks. I was told I was stable, GCS15, moving all limbs normally, clinically well. Go home! So I was discharged on 4th November 2013. However, I have been home for 3 weeks and my headache is permanent and I take paracetamol and codeine every 4 hours. It is awful and I feel nausea. My neck hurts, my eyes hurt, I am dizzy and kind of spacey, I am tired all the time. I have problems with my speech and short term memories and just lose loads of words. I can write well and hear fine - but seems to be reading and spelling too. They get worse later in the day. I am seeing a speech therapy lady who is lovely! Of course, not allowed to drive and to be honest I feel ill anyway so stay indoors. This is not me - I had my own company, rode my horses, played my cello in orchestra and loved my life. And at the moment I am worried about my life. I am to have another CT scan and angiogram in 6 weeks then 2 weeks to my Neurosurgeon so he can "make a decision" as I think he was still debating "clipping". I saw on the web though that this Left MCA territory might be a problem with operation? Unfortunately I have anxiety - mainly because I just don't understand why nothing was done to me or why they didn't sort me out and make me better! This means I am scared of it happening again because I feel exactly the same as I was in hospital. I just want to get better and I am not at all. I think noone has really explained everything to me! Thank you for listening to all this - really appreciate this site and I hope that many of the friends on here are able to give me some advice and information and make me feel better. I am useless - I know nothing about all this and I just don't understand about helping myself to get better. Thank you for helping me!
  22. I haven't been around here for a very, very long time. Life with children (13 years and 4years old as of today), family and all the rest is a busy thing. I just got a pm from someone 9 months post-SAH, looking for info about my experience. I responded, then I remembered how incredibly helpful and useful BTG was for me in my first weeks post-SAH. The doctors told me I was fine. I knew I wasn't "fine". But it took me a while to realized that what they meant was there was nothing they could do for me. Thank goodness I finally found BTG and all the helpful folks here. So, I figure by posting this I might be one of the helpful folks for someone else coming along post-SAH, confused and looking for answers, direction, clarity, or at least a little flashlight in the darkness. So, here's my story: I'm now 2 years and 3 months post-SAH. The best way I can describe it is in computer terms, which makes sense if you think of the brain as a Central Processing Unit (which it is, just a biological one as well as an electronic one). Looking back my experience was something like this... My brain crashed and needed to restart. Many programs remained "off-line" for several months. Through reading Jill Bolte Taylor's book (have you read it? you should) "My Stroke of Insight" I suspect my bleed was in the right hemisphere of my brain (since there was no aneurysm the doctors couldn't tell me where I bled, only that I had bled as by the time they got a look my basal cisterns were flooded). I think this because my linear reasoning was never affected nor diminished (however my ability to make connections was severely disabled). My speech, pronunciation, vocabulary, motor skills were all normal (though I was incredibly tired). The doctors told me I was fine and should slowly get back to my normal life. Maybe take a couple of weeks off. Months later I was telling the doctors I wasn't fine. There were things missing. I am an artist and dancer and when I went into my studio it was like I entered into a fog of pea soup. It was thick, confusing and exhausting. In retrospect, part of that may have been due to non-essential services being off line while the organism of my brain healed itself. Over the course of the first 6 months I had several waves of "programs" coming back "on-line" and being available to me again. For Christmas I got the ability to dance and to be social back again. It was such a beautiful present. That was the last significant "wave" of restore. A few things trickled back after that, but nothing as noticeable as the previous waves (a wave was like all of a sudden I could "think" my way through things I hadn't been able to make any sense of the day before). In the first few months, before my artist's brain came back on-line, I was searching for some sort of stroke rehab to help with my right hemisphere recovery. However, most/all stroke recovery programs are based on restoring left-brain function - language, linear reasoning, physical acuity. Our society doesn't value the more artistic pursuits - making connections, spirituality, creativity, and so much more that is of deep value to me, as an artist and a human being. That was a difficult time for me as much of what I value about myself was taken from me. I was sad, but I also believe in brain plasticity so I just had to keep reminding myself of that and give myself pep talks several (or more) times a day when I got frustrated about not being able to do something I "should" or used to do, or wanted to do. After the initial 6 months of recovery waves, there was another 6 months of very inconsistent energy. I would get tired suddenly and there was no rhythm to map out or predict what would exhaust me. Just all of a sudden I was exhausted. At the time I had a 2-3 year old. This was extremely challenging for me and my family. I just kept checking out on them. I spent a lot of time lying alone in the dark, or in my studio lining up my pencils and/or paints in order by colour (I felt it was important to log studio time, even if I wasn't producing anything...I just needed to spend time there), or whatever quiet and restful time I could spend. I was working 2 days a week by that point and I was able to manage that, though it was a deep energy sucker. By the time I was at 9 months, my cycle became work on Monday, take Tuesday off from everything, work on Wednesday, take Thursday off from everything, kids home on Friday - be the Mom till hubby home from work, go to bed exhausted after dinner, Saturday and Sunday Mom when I could, retreat when I couldn't. That was my life schedule...but my energy usually didn't conform to that. Shortly after the 1 year mark my energy got consistent. It was such a gift. One never knows if that is going to happen or not. We really don't know what cards are going ot be dealt to us. I got lucky. I know it in my bones and deep in my brain and I am grateful for that every single day that I wake up. While my energy got consistent, it didn't return to what it was pre-SAH until the 2nd year. There are a few intangible things that came back during that 2nd year, but I would be hard pressed to say what exactly. It's just a feeling of "being a little more here". I used to do 7 things at once. It was truly insane, but I could manage. My top speed now is doing 3 things at once, but that leads to an emotional meltdown pretty quickly. I think my sense of self preservation is much stronger now than it was pre-SAH. I feel less guilty about saying no to others. I still have a difficult time saying no to things I want to do. I still struggle with accepting my own limitations and not overdoing things. I am (once again) a passionate engaged artist. I love life. I know life is short and I want to express/experience everything I can in the short time I get. However, I do want that time to be sustainable, so I often must say no to things I'd really like to do. I don't have the energy I used to have. I have wiser energy. (I'm 44 now, was 42 when I had my SAH). Having said that, I still have more energy than a lot of people I know...I'm a high energy person, however I don't have the ability to "run" as much energy as I used to. Long term effects - I would say that the SAH aged my brain. I seem to be at a similar capacity to my friends who are 15 years older than I. I have to write everything down (and later look at my notes) to remember anything. I forget conversations. Most of the time I remember them when someone twigs me, but some conversations I honestly have no recollection of. This is a bit disturbing, but then I think of my older friends, shrug my emotional shoulders and remember that memory loss due to age beats the alternative (being dead). And, then I do something to exercise my brain and keep the muscle working in new ways. Maybe my memory will improve with age! Maybe not, it's irrelevant and doesn't much affect my quality of life...unless I let it, which I don't. That took some time for those around me to get used to. My family especially. Now if my 13 year old is frustrated with me forgetting something I turn to her and say, "I'm sorry, have we met? I'm the mom who is awesome and has recovered from a brain hemorrhage. Have I mentioned that I have no memory?" She doesn't like it much, but I guess in a way it's a lesson for her in learning how to be take care of what she needs to take care of. My 4 year old doesn't have the same expectations of me. She doesn't remember me pre-SAH. Hubby, got with the new program a while back. I still deal with sudden rushes of temper if I am pushed too far and feel the need to protect myself. However, I am the Mama who has a 13 year old and a 4 year old at home, so I am often pushed too far...seems pretty common (SAH or no SAH). I do my best to verbally warn when folks are pushing too hard, but sometimes it takes a meltdown to get their attention. I don't feel guilty about these anymore. I leave, and apologize when I return. And remind them that my brain is very sensitive. What I remember were the most helpful things that first 2 years were - Behind the Gray (life saver especially when the doctors were telling me I was fine, but obviously just having emotional problems so I got referred to a psychiatrist. That was the single most frustrating thing I can point back at); I was so relieved to have found BTG, it was a life saver in so many ways - DRINK 3 LITRES OF WATER EVERY DAY! I learned that here and it made all the difference with the headaches (I took acetaminophen daily for the first 3 months, then didn't need it anymore as long as I was drinking enough water) that tip came from here at BTG - Be selfish. Do what I need to do for self preservation, including a whole lot of walking away - Being patient. Being kind to myself. Stopping when I found myself getting into any kind of negative self talk. That negative self talk was one indicator that I was pushing myself too far. Which reminds me of the nausea. That was my early warning indicator. I dealt with waves of nausea for over a year and a half (tho they decreased in frequency as my energy increased). When I felt like puking I knew that I had just crossed the line and had pushed too far. I learned that slowing down was not enough in that situation. If it got to nausea then I had to STOP. drink water. go lie down. rest. try again another day. I have changed though this experience. I hope for the better. I believe that I am more compassionate. I don't take things for granted. I know in my bones how temporary this life thing is and how quickly it can all end. I am lucky that hasn't happened to me yet. I want to honour my own new pace as I live the rest of my life....however long that is to be. I hope this helps. Please feel free to write back if you have any specific questions, want to share your story or just want to connect with someone who's gone down her own version of this path, before you. And, don't feel obliged to return any long letter to me. You must be selfish in how you spend your valuable and rare energy. I wish you the best in your recovery. Please remember that whatever abilities you may or may not get back, you have your life. It is changed. There is no going back, there is only going forward...into mystery and hopefully into health. You will not determine what that will look like. There is a certain amount of surrender and fear involved with that. That part is out of your control. All you can control is how you meet these challenges. Be kind to yourself. This is a big thing. All the best, Riane
  23. I am not really sure where to start, it's funny I used to come on BTG everyday back in early 2012, then I eventually weaned myself off the site. No issues with the site or the content of the site just felt that for me to move on from the whole episode I needed to let go and get on with my life, so I did. I never registered just viewed stuff and took comfort from people 'brave' enough to share their experiences with a wider forum. Why the sudden change? Not sure but this week I have had my second annual check up after suffering a grade 5 SAH in December 2011 and I think I am one of the lucky ones, hence I am writing this so someone reading this can hopefully derive some hope knowing that there is light at the end of the tunnel. December 2011 - I was 42, overweight but not obese, ate too much of the wrong stuff and drank too much alcohol. Was not at deaths door but got into bad habits over the years and these began to take their toll. At work I also was pretty forthright, I would tackle things head on, was not afraid of confrontation and would not back down in an argument. When I was younger and things started getting heated or the pressure was on I would get a buzz out from that and work that little bit harder, push myself that little bit more. All the time I delivered and worked well producing quality work. Through what I now see as a lack of maturity I continued in this manner through my 20s, 30s into my 40s. When you're younger the stresses are less, there is less responsibility etc etc. The older you get the more responsibility and are more accountable. Therefore the pressure is more severe than previously encountered, pressure = stress, this as we all know takes it toll on you. December 2011 - Work had been stressful but it was the night of the Xmas party. I decided to drive in as I had been suffering with a sore neck for most of the week and was not really feeling like going out and having a few drinks. If it all went ok and the neck pain eased I could leave the car at work - no worries. The day went by as normal apart from the sore neck and at the end of the day I was in a weekly meeting where I lost my temper (which was out of character in this particular forum) with my project manager. At the end of the day I dipped out of the Xmas party and went home where I had dinner with my family and sat down to play on the Wii with the kids. From memory I was happily playing along/sitting there when all of a sudden something happened, to this day I cannot remember the exact details but from what I recall I stood up and then I think I fell down. I have no recollection of any pain, the worst headache ever or anything like that. I do recall my wife talking to me asking me if I was ok and my girls crying and asking about Daddy. Laterly recall some guy talking to me, not sure what or who, assume that it was the paramedic who got to the house before the ambulance. That's it on the memory front, I am told by my wife that ambulance arrived, I was taken out to ambulance and the ambulance just stayed outside the house for about 30 minutes, after which time someone came to the door and informed my wife that they'd just got me stable and are taking me to Epsom not St George's. No idea what went on in the ambulance but I don't think it was good. Anyway as it happens I must have rallied as my wife later got a call saying that I was in St George's in Tooting. In there that night I had an EVD and was coiled the day after. Came out and was in ICU for a few days, wife says that she was at the time quite positive as although ill I was in a better state than a lot of the other people in ICU. According to my wife the care was incredible, the nurses are magnificent, incredibly skilled and knowledgeable about what they do in ICU. After a few days I was released to the neuro ward where I stayed for a couple of weeks. Apparently I was talking gibberish a lot of the time, didn't really know where I was, what was going on and what had happened, all typical complaints I believe. I apparently also kept complaining about my eyesight but as the rest of my communication was gibberish it passed my wife and the nurses by. Towards the end of my stay I got some clarity back and informed my wife that I couldn't in fact see through one of my eyes and we found out that I'd suffered Terson's syndrome. Anyway spent Xmas and New Year in hospital and was released in early 2012. On getting home spent a lot of time initially asleep. This is where my memory of things comes back, post event Dec/Early Jan I still can't remember stuff but have just let it go, thought with time it might come back but can't see that happening. Jan 2012 - kids went back to school/pre-school and one morning my wife suggested going for a walk. It had snowed and there were some nice places to have a walk and a chat close to home. First walk I commented on how heavy my boots were and how the muscles on the front of my shins was hurting, I think this made my wife realise just how weak I was after my stay in hospital. After that we did a lot of walking (and a lot of talking) in the coming weeks which helped get my strength back gradually. After about 10-11 weeks post-SAH I talked about going back to work, I work freelance so not working = not earning. I think if I'd have been on sick pay then I would not have thought about going back. Anyway I had a reasonable employer and they took me back initially 3 days a week, which was very difficult. Most difficult part of it all was the poor vision due to the Terson's syndrome, being amongst people and working the brain all helped me get better. Carried on working 3 days a week for a couple of months, realised how bad I was when we went away for the Easter holiday and was completely thrown by the change to me surroundings and routine. It was particularly hard for my wife dealing with all of the stress associated with taking us all away and looking after us all. But going back to work had some real positive side effects. The brain was starting to function again, I was slowly getting some of the function back all though hindered with terrible eyesight. Then in the August of 2012 I had a vitrectomy and my world changed. Almost from the moment I took the bandages off and started to see again was a massive step in my recovery, maybe the final step. At least now I could see and there was not the reminder that my head had "gone pop" 24/7, it also gave me a confidence that I had been lacking. Around this time I had the opportunity to interview for a job that I had been trying for all of my career. I had come close on occasion to getting this kind of role but had never been successful in the near 20 years I had been in my industry. It was/is the acknowledged pinnacle (and the best paying), so I thought long and hard about it and decided to go for it. At the end of the day if I didn't get it so what, nearest I had come before had been 2009. Anyway I was offered the job and accepted, it would help fill the void in my earnings from the 12 week period I was out. As it happens that contract has come to an end and I am now on another new contract, that one went well, it was hard work but I came on so much by pushing myself everyday. During the year there I applied myself like I have never done before. Other notable dates were November 2012 when I got my driving licence back, the freedom to drive again was fantastic. And here I am a year on, annual MRI complete and going to the consultant for my post-MRI check up. Went to St George's and was pleasantly surprised to see that it was the consultant himself this year that I was going to see, for one reason and another I did not see him at any of my previous appointments. We went to his office where he explained that the MRI results were good, in fact they were better than good. The torn artery had repaired itself so much so that the coil was no longer steming the blood flow the artery wall itself was doing that. Therefore I was being discharged as there was nothing to monitored!! All in all an amazing turn of events in under 2 years. I couldn't have done it without my wife and family. Just having the kids around gives you a reason to get better they are the reason you want to be here as they need you to be their Daddy and be strong for them. My wife, where do I start? I cannot put into words what an amazing lady she is, I am convinced that I would not be here typing this if it were not for her. Strong, supportive, caring and loving all in equal measure, she has constantly pushed me to do better, to get better. Not an overwhelming pressure just a gentle hand on the back, support so that when you stop and feel like taking a step back the hand is there to hold you in place, make sure you don't go backwards and guide you forward, giving you the courage to do so and allowing you to be best person that you can be. Completely selfless and an amazing caring job, I was blessed to survive and I was equally blessed to have married and share my life with her. Having her there to help me get better - words can't explain what that means to me. I know that I have been lucky to have my wife looking after me and guiding me forward but looking back there are a few things that I have done that I think have contributed to getting better. Acceptance - for me this was a big one. So you've had a SAH, you've survived don't make that survival worth nothing. You've got a second chance, embrace it and make the most of it. Never get down - easy to say, easy to write, not easy to do. Remain positive at all times, look at the odds of survival that's a positive (sometimes the only one) so don't waste the 2nd opportunity you have. There are people worse off than you, yes really there are. There are people who died from this you didn't and there is a reason for that, don't waste the 2nd opportunity that you've been given. Go with it - the medical people (in my experience) know what they are doing, trust them and go with them they know their stuff and will do all they can to get you better. Stay positive - yes it's rubbish that it happened, it's not fair, why me, etc etc but there is a positive that you're here, make the most of it. You could have died - you didn't. Thanks for all the stories and posts, although I didn't contribute they really did help me, especially in the early days. Good luck to you all.
  24. My story all began with the birth of my second son, August 18th 2009. I went in the Wednesday morning for a scheduled c-section, and received a spinal block. Everything went great. I had a happy, healthy baby boy and my recovery was going wonderfully. I was up and going and actually feeling great. On Thursday afternoon, I was allowed to go home with my baby boy and I was so happy to finally be together with my 5 year old too. He was a bit jaundiced, so we had a follow up on Saturday with his pediatrician. Friday came, and at lunch, I was totally spent. I took a nap, and when I woke up, my brother in law was there to visit. My head was killing me, and as time progressed with our visit, it increasingly got worse. I got in a hot shower, which helped some to relieve the pain in my neck. But the intensity only kept growing. I tried to lay down, and it began to hurt worse, to the point to where I am now crying. I can remember lying there telling myself I was being a drama queen. It was just a headache.... why are you crying. Suck it up buttercup. Finally, I got out of the bed and complained to my husband which saw the tears and new I was hurting bad. I have a very high tolerance for pain and he knows it. He tried his best to make me feel better. I took some pain meds that I had been given for the surgery. The only way I could get any relief at all, was to get on my knees and push my head as hard as I could, into the couch. I honestly do not know if I fell asleep or if I passed out. The next morning I awoke still with the horrible pain in my head and neck. We took baby boy to the doctor and my husband was talking to the pediatrician about me. We checked my BP and it was through the roof. Mine is always on the low side. He called my parents to come and get the kids, and we went to the ER. There I was admitted and the ran a CT scan, and gave me pain meds while we waited on results. They did nothing for the pain. The doctor came in, and told me that the CT scan showed a massive spot on my brain, that he thought could possibly be cancer, and he was calling in a neurosurgeon.He gave me another dose of pain meds which was 7 times more powerful than morphine. It did nothing for the pain. My world stood still.Those are words, that as a mother, I never wanted to hear. BRAIN CANCER. Right then and there I decided to fight. They ran more test and admitted me over night, and the next morning a new doctor came in and told me that I had a SAH. He asked all about the birth of my child and was shocked that it went so easy. He did not understand what caused this, or why I was still at 100% neurologically. Baffled, after 3 days and much begging from me wanting to be with my newborn, he let me go home. Once there, I spiked a high fever. So, less than 24 hours home, back we went. I was taken to the ER and my neurologist ordered a battery of test for the ER doc to do. I was sent for an angiogram. I had no idea what it was. They explained it, asked me to get naked (Remember I just had a baby) and began the procedure. They told me I wouldn't feel it , that the worst part would be the numbing med . They lied. I felt every movement as that they snaked the tube through my body and into my brain. Every beep, struck fear as the pain of the dye ran through my veins. I still remember the sound, the smell, the taste, the pain. I came back to my room lying on my side, crying uncontrollably. My husband said I looked like I had been to war . He could see the PTSD all over me and wondered what the hell they had done to me. In enters the ER doc , telling me I have to have a spinal tap. Normally they are performed sitting up, but since I had just had the angiogram, I had to lay on my side curled up. Two big fat nurses came and layed on me, holding me down, while he began to DIG in my spine . I will never forget that searing pain as long as I live. I began to pray and beg and plead with him to please stop. After 10 attempts, he finally did. I was sent to radiology where they used imaging to find the right spot. I remember telling the guy, sobbing , in some not so nice words, that he had one shot. I didn't even feel it and before I knew it , I had fluid pouring from my spine. The whole time, my OBGYN was in constant contact with the doctors, and he made the decision to send me to another hospital by ambulance 2 more hours away from my children. I thought I was going to die and never get to hold my sons again, or say goodbye. They put me on meds that were high powered antibiotics, just incase I had menengitis , which I didn't. This hospital was a teaching hospital and they came in and out, everyone wanting to run more test and put me back through hell. I put my foot down and said , NO. Get my test from the other hospital. After several days, I was discharged and sent home with BP meds. I was home again less than 24 hours and guess what...back to the ER. I was admitted again, and this time I stayed for 3 weeks.I also had to receive a blood patch to repair the puncture holes in my spine. I remember the gasp and the doctor who performed the bloodpatch actually cried as she looked at my spine. By the time I got home and stayed home, I had been away from my newborn that I left only 3 days old, and he was a month and a half old. My milk had dried up, I was so full of meds anyway, and I felt totally useless. I did however jump back in there right away. Recovery was hard because my husband had to go back to work a week after we were back home. Here I had this tiny baby and a 5 year old who had just started school. There were days that I would fall asleep in the pickup line. After the first year, things were getting better, but I still had a constant headache, which I was getting used to always being there. My energy was returning , but I still had horrible nightmares and sudden flashbacks. I was having panic attacks. My personality has changed . My tolerance for stress and noise has changed. This is 4 years out, I still have these problems, and had no idea where they were coming from. I know nothing other than the technical side of what a SAH is. Finally, my husband listened when I said , I felt like something was broken. He somehow found this site and began reading and learning. The next morning, he began to talk to me about this site. At first, I was angry, but then I listened to what he was saying. Story after story that sounded as if I had written them myself. He told me he was so sorry. That he had no idea what I had been dealing with and how strong I actually had been through it all. He knew we were blessed, but had no idea how bad it could have been. He told me how incredibly proud he is of me and actually used the word "My Hero", for showing such strength and holding our family together. I about lost it. I began slowly digging into the site, and I will be flat honest, this has been a life saver for me. You can only be strong for so long before you feel alone, crazy and just plain want to give up. This gives me hope, and pride in myself, and it makes me want to reach out to those of you who are going through the same thing, and share my testimony. I want to hold your hand and help in anyway I can, so that you do not feel alone , lost or hopeless. I never said my story was short. I have had 4 years for it to grow. I leave you with the hope and knowledge that one day, happy will return, and as long as you do not give up, and as long as you roll with both the good and the bad, everyday we get closer to being better.
  25. admin

    Laura's Story

    Hello to everyone. I just found this support group with my daughters help. I had my SAH on 04-09-12. I awakened to the worst headache of my life at 2:00 in the morning. I struggled to get to the bathroom as I felt I was going to get sick. I just laid on the floor for a while then thought Id better wake up my husband and tell him I was very sick and my head was killing me. He asked if I thought I needed to go to the ER and I said no, I am just going to lie here, this must be what a migraine feels like. I drifted in and out of sleep and had my son drive me to my doctors office. I told them I had the worst headache of my life and I was crying in pain. They took my blood pressure and it was 234/187. I knew I was in trouble then. My doctor sent me to the hospital to get a stat CT scan and she told me to wait there for the results. My husband met us at the hospital and sat with me while I waited for the CT results. It was taking longer than I thought it should so I told my husband I am probably ok so lets just go home. I said if they saw something on the CT they would have told me. Just as I was trying to stand up they came in with a wheelchair and whisked me off to the ER. A doctor came in said you have two brain bleeds and we are life flighting you to Duke. Apparently the weather prevented the helicopter from coming so they put me in an ambulance and took me to Duke University Medical Center. The rest of my story is very sketchy. I just remember all these people doing all these things to me at once. Then I was sent to have a "procedure" where they ran a catheter up from my groin to my brain and then to ICU to be monitored. Don't remember much of my hospitalization. I do know they did another "procedure" running the catheter again and discharged me the same day. Never had to do any surgery, never had any vaso-spasms. Was discharged after 10 days. Was on so much medicine I do not remember much of the next 2 months. In April this year I had my MRA that was apparently ok. Have not had much follow up since. I was so relieved to find this site and read about other peoples stories. Now I feel better about my memory loss and difficulty forming words. Also the extreme fatigue that comes on when I over do it.
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