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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
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    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
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