Lin-lin

I was going to suggest counselling to you the last time we 'chatted' but when I went back online, I saw that others had done so. Perhaps asking your doctor for some pre surgery counselling might be helpful to assist you developing a healthier mindset. I had junior doctors perform some of my lumbar punctures. I don't think the medical profession consider them to be difficult procedures and so it is something that younger doctors do. I would go as far to say, that some of the more junior doctors performed my better, if not the best, lumbar punctures. I don't know why this would be, but they did seem very anxious about the thought that they may hurt me and were very careful. Maybe twenty years in the job diminishes this caution..I don't know! I think that some sort of counselling would benefit you because your anxiety levels are high. Maybe your lack of support at home is creating an environment where you can't talk things through... Fearing for your disabled son is a genuine worry and you need to tell your doctor so that practical solutions can be offered. Also statements such as your local hospital 'not being a good place to be' will raise your anxiety levels. You will convince yourself that you are having substandard care. Truly, if I were in a hospital bed next to you in the Heath, I would think that I was in the best place. These different mindsets would undoubtedly frame our different attitudes to our experience of the hospital. I am pleased that you are seeing your doctor tomorrow and I wish you well.

Sorry to hear you've been poorly and stressed. Were you too anxious to have a lumbar puncture? I wonder if you've had any before of would this have been your first time. I've had over ten lumbar punctures and I don't find them that bad to be honest. The fluid a doctor gets from a lumbar puncture can tell them a lot about the health of the brain. A sample taken from a lumbar puncture can indicate to doctors whether there has been a bleed or not. That said, if they have discharged you and after all, you've had a CT Scan; so there must be some confidence on their part. If you feel unwell, then telephoning your doctor may be helpful. You can talk through your concerns with him/ her.

Hi Scarlett I’m sorry to learn that you are still stressed, particularly as your support at home is thin. This must be compounding problems. My heart goes out to you. I think Michelle, (Goldfish Girl,) and Louise make a good point. I had thought myself that the issues with funding might be adding to what is already a very stressful situation for you. This is not to say that I am not compassionate about your situation, as are Michelle and Louise. I really feel for you that you are facing a big operation but have no faith in local doctors. For my part, if an aneurysm was discovered in my brain; I would be going to Heath without hesitation. The care I received there was exemplary. You will see from many of us here, that an initial misdiagnosis is common. It is not something that is unique to Heath. Often, when confronted with problems, we need to decide what needs to be worried about first and foremost. I think treating the aneurysm as quickly as possible is the important thing. Also, if you are far away from home, will family / friends be able to visit you? What about the journey there and back? My SAH happened two weeks after a weekend in London and I remember shuddering at the thought that it could have happened there; only because it would have been so much more difficult for people to support me and visit. Being nearer to home was important for my recuperation. (Although travelling from Llanelli to Cardiff every day was a big task for my parents – it was still do-able.) When we are stressed, it can be difficult to hear views different to our own train of thought. I apologise if I am upsetting you here. It is not my intention. I am simply brain-storming with you (excuse the pun!) If you think that my advice is not what you want to do, you will hear no more about it and I will throw my weight behind your decision and support you 100% But if we were friends in the real world, I would say the above over a cuppa, just for you to have an opportunity to think about an alternative. When we are stressed we can become fixated on a certain ‘solution’ but when we talk it through with others; we can sometimes find a different way. I am not telling you what to do here. Just raising a different approach.

Hello there, I don't have any answers; rather I'm just acknowledging that you ask a good question and I too look forward to other BTG members replying. I had a baby last August and up until then was not too preoccupied with the possible genetic factor, but now it is a different story. I don't know if the NHS offer routine screening here, I suspect not. I think I may have to have a 'stronger case' than simply my SAH alone. Thank you for posting a question that has been on my mind for a while.

This is all very familiar to me and I remember how depressed I felt after my SAH. In my case, the depression started around the year mark. Looking back, I handled my early recovery wrong, believing that I had to ‘fight it,’ and ‘beat it.’ Luckily, I commenced counselling and I started approaching things healthier. A turning point for me was joining Headway. It is there that I receive group counselling under the guidance of a neuro psychologist and the intervention has been invaluable. I still go and hope to be able to attend the next counselling session in a week’s time. A lot has gone on with you of late, what with the issue concerning your licence and job ending. This is understandably very frustrating for you. On top of this, you are probably not relishing the benefits side of things. If you can, please attend upon a benefit advisor and don’t try to muddle through yourself. The system is deliberately complicated to put people off claiming. Talk through your situation with a benefits advisor, not the Job Centre. Think about visiting your local CAB. Depression is a very common symptom after a SAH. I think many of us here have experienced it. Thankfully, it is more of a ‘patch’ than a permanent situation; but many of us have had counselling to see us through it. Ideally, the counsellor needs to be qualified in dealing with brain injuries – us brain injured folk are quite a unique bunch in how we react to things; and I fear that a general counsellor would not grasp our situation. So, as a starting point; consider contacting some agencies to help you. Think about Headway and ask about counselling services and make an appointment at the local CAB where you can hopefully speak to a benefits specialist. Good luck with everything and let us know how you get on with things. xx

Yeah, all this is pretty familiar to me. I get it totally. I know you want to go to the show; but because of the fatigue you know you won’t manage it easily. I’ve had moments like this; when I’ve really wanted to do something but am aware that the fatigue ‘hangover’ will be massive. You can’t take the brain injury away I’m afraid, but there are some ways to off -set the worse elements, but it takes planning. I don’t know if I am going to suggest things which are feasible because I don’t know your precise circumstances, but these are some things for you to consider. One thing that would make a huge difference is if you cancelled work on Monday, (easier said than done I know.) But if you had no work on Monday, it would really help with your ‘fatigue hangover’ because it would give you longer to rest. If you can’t cancel work on Monday; remember this predicament to help you plan future events. In future, if you know you’ve an event coming up that you would really like to go to, make the necessary arrangements with work months in advance. I.e. When you know the date of the next dog show in 2014 – make sure you take Monday and even the Tuesday off work afterwards. Planning in advance is fatigue’s best friend! With regards to travelling to the show, you will be in further energy deficit if you drive there and back. Ideally you will need to rest on the journey; can your wife drive? When I’m out and about, I always take healthy energy foods with me to avoid blood/sugar dips. I basically graze all day. The correct type of food gives energy and it can help with fatigue. If you go to the show, Saturday is uber rest day! You must not do anything on Saturday, because it will detract from your energy on Sunday. If you go, you may have to forfeit your dinner afterwards. It may be too much for you; but only you can answer this one. In large events such as this, it is sensible to take some ‘time out,’ and find a quieter place so that you can spend a moment away from the hustle and bustle. If you think it is genuinely impossible for you to attend this year; consider how you could make it extra special next year. I.e. take time off work, (even taking the Friday before the weekend off so you can rest lots in advance); and limit travelling time – if the show is far away, stay in a hotel nearby. Done this way, you could possibly go for dinner afterwards too. The main dilemma I see here is not so much the fatigue, but rather that the show is on this Sunday. It is possible to do things with fatigue, but not at short notice; and not without rearranging other commitments.

Ha! True. They don't call it labour for nothing!!

Sorry for the delay – only picking this post up now. My consultant was Mr Nannapeneni and he has a good reputation. My cousin is a doctor and he holds Mr Nannapaneni in high regard. I am told that he had a good reputation within the profession. My surgery was in November 2009. An acquaintance of mine at Headway, (a charity run for people with brain injuries,) has also received care from this Consultant and again, I have heard only good things. In terms of how long was my recovery period; those of us who have had a SAH will find that difficult to answer. I must clarify at the outset that our situations are different and so our recoveries will be too. (No two recoveries are identical anyway.) My aneurysm burst and so I received an emergency life-saving operation. I was coiled. The bleed caused damage and so my recovery must be considered on that basis. Had I been treated before the aneurysm burst, I think it is reasonable for me to think that I would have recovered better. My main ongoing issue is fatigue. That said, I had a baby in August 2012!! Nannapeneni said that I could have a natural birth and the coil would withstand the pushing. (The coil fared better than me however! I was exhausted!) I was in hospital for five weeks after the SAH because I suffered hydrocephalus. This was a complication of the SAH, NOT the surgery. Apparently some people who have a SAH, will develop hydrocephalus. I’ve had quite a fair bit of radiation too, but it is a question of balance. Considering what I had been through with the SAH, radiation was not my main worry. I don't know if you find any of this reassuring, but I hope it goes some way to allowing you to seive through your concerns.

Hi Just read this post after replying to you in the 'Christmas drink' thread. I understand now why you wanted to know where I had my surgery. I am sorry that your treatment in Wales has left you lacking in confidence in local hospitals. If you wish to have an explanation as to how some hospitals missed your aneurysm / cyst; there is likely to be procedures in place so that you can put the question to the hospitals themselves. You could even attend upon your own GP for some guidance. There are some members of BTG who have medical backgrounds and experience in working in hospitals. They will be able to give you more specific guidance as to how you do this. My treatment was at Heath and I have no complaints. If I had to return to them, I would definately feel in safe hands; but that said, I am not minimising your trepidation and understand your concern. Could you not ask the next Consultant you see why the scans didn't pick up what the problem was, but the London Hospital did? L

Hello! Are you new to BTG? I don't recall seeing you before. I had my surgery at Heath, Cardiff. Is that where you were? L x

Well done Dawn. Diet is an important way I manage fatigue and if I eat unhealthily I always pay the price for it and feel dreadful. I never venture out of the house without healthy snacks and on the occasions I’ve forgotten to, cognition takes a dip. The words, ‘Lynne is hungry,’ are considered a medical emergency in my family. Bananas are brilliant portable food and I’ve usually one in my handbag. It is important to allow yourself a treat as complete abstinence can lead to relapse! The timing of such treats is important to me. I don’t eat a piece of chocolate in the day when I’m out. It isn’t a substitute for food because it won’t give me the energy I need. My treats (minimal of course!) are eaten at the end of the day, when I am not hungry and they are not eaten instead of other foods, but rather in addition. It is something to look forward to and a reward for healthier choices.

It’s nice to hear that you have a plan – and it sounds like a good one. Supermarkets are very difficult places for us brain injured folk so congratulations for venturing into one! I’ve been shopping online for some time now. This has many advantages. Not only does it save me from the dreaded ordeal of a supermarket shop; but in shopping online, you can make sensible choices. The entire design of a supermarket is set so that we inadvertently spend more money and it is very difficult to pass the bakery counter without salivating! Also, they stock expensive brands at eye level and the healthier options are stocked at the top. Not to mention the chocolates at the counter! (I think you deserve a medal for being able to make a sensible food choice in a supermarket – especially as Cadbury Crème Eggs are out!!) Another tip is to cook in batches so that you will have leftovers for the next day. This can help with fatigue because you’ll reduce the amount of cooking time per week which is important if you’re working. This means you can eat healthy without having to cook every night. One pot meals are good too as there is less cleaning up! L xx

As I gave birth 6 months ago; and was recently told by a nurse that I needed to lower my cholesterol; I feel somewhat qualified to answer this question! When suffering with fatigue, diet is one way to help offset some problems, because the correct food gives energy. So restricting calories can lead to greater fatigue, (probably due to blood/ sugar levels.) There are certain types of food however, namely complex carbohydrates, which are slow release - they fill you up for longer slowly releasing energy, as opposed to a sudden high sugar rush. Complex carbohydrates include oats, (I always start my day with porridge!); pasta, (I’ve switched to wholemeal and am surprised how much I like it,) broccoli, potatoes, lentils, beans, (try making a soup,) low fat yoghurt and skimmed milk. Through eating sensibly I have lost weight, but have managed to eat foods that provide energy. I have not restricted food, rather I’ve made adjustments. I only have one packet of crisps a week now, which was a hard adjustment because I love crisps, but homemade popcorn is a good substitute if you need to munch on something. I have drastically reduced how many biscuits I eat – another difficult thing to do; but they really are empty carbs i.e. they don’t provide sustained energy and are full of calories. Pancakes are fine to eat, but it depends what you put on them! I steam fruit – blueberries are nice; or apple with cinnamon. I also had to stop eating butter – such a shame! There are many healthier spreads, but I am able to eat a sandwich now without any spread at all. If this seems difficult, just put spread on one side. I allow myself a treat at night, but in moderation. I allow myself a few small pieces of chocolate whereas I used to eat the whole bar. Preparing homemade sandwiches when out and about is also healthier than shop bought alternatives. In making these adjustments, I have managed to lose weight, but I am never hungry. L xx

Wem, you make a very good point. I remember saying a while back that after the SAH I was presented with the biggest emotional / psychological challenge of my life; and the very I needed in such circumstances was a clear mind to steer me through the storm. Unfortunately, as it’s the brain that’s injured – and it controls thinking and problem solving; it leaves the patient at a slight disadvantage. Despite seeming ok when I left hospital, (I looked well after all!) I lacked insight and awareness, leading to poor judgements. I was irritable, depressed and anxious and exhibited mood swings. I was inflexible and hyper sensitive leading to friendships ending; and on top of this, I was expected to self -navigate through my career ending, hobbies finishing and social life collapsing. I didn’t possess the clarity of mind to deal with mundane day to day issues, let alone work through a life changing event. Many of us lack insight upon leaving hospital and this can leave us very vulnerable.

In terms of what the patient needs to know upon leaving hospital, I think it is vital that the patient’s carers are also included in the discussion. The patient will not be in the best state to absorb and retain the information, but in any case, even if the patient were to understand it; if the patient is returning to a family that do not understand, the patient will encounter many problems. 1. I understand the predicament of medical staff upon being asked how long recovery will take. You want to give us hope, but an estimate of 3-6 months (which is common advice,) is woefully unrealistic. I felt very depressed when my recovery was not complete at the 6 month mark and I became depressed. I think expectations need to be managed better. This estimate can leave us vulnerable to family / friends who then, quite wrongly believe that we are not trying to get better when 6 months has elapsed. I remember some friends trying to ‘push me’ at this point, confusing my fatigue for malingering. 2. I would have benefited from an immediate referral to psychological services, despite seeming to be ‘intact’; although part of the reason I felt ok was because I believed I’d be back to normal in a few months. I think we need professional help to guide us through the realities of recovery. We need to learn how to manage fatigue. Many of us are used to very busy lives and wrongly confuse resting for laziness. 3. Signposting us to organisations like Headway would have many advantages. My group offers counselling and activity days and I have made many friends there.

Hi. Thank you for considering us for your research. My treatment at hospital when I had the SAH was superb. I was in hospital for five weeks as there were complications with hydrocephalus. I left hospital with no intensive follow up care. My next appointment with the Consultant was to be seven months after discharge. Mental fatigue was my biggest problem, together with chronic insomnia, inability to multi-task, personality changes, a feeling of being detached from others and anxiety. There were times when I thought I was going crazy and certainly behaved in ways which were problematic. Thankfully, I have a supportive family who were able to look after me, but I dread to think what would have happened had I been more isolated. Things continued to spiral and I believed that I had to push myself harder to get better. This created cycles of crashes and deeper depression with a sense that I was failing. I did stupid things such as denying myself naps in the day, wrongly thinking that I had to push myself through the pain barrier to get better. This impacted a lot on my emotional state as I was beyond fatigued. Things only started to get better when I contacted Headway, one year after my SAH. I was not signposted to them by health professionals; I just happened to see their website and emailed them. I did not think that I had a brain injury at this point – but what the website said about brain haemorrhages seemed to apply to me. At Headway I was offered counselling and things became very clear to me from then on. I learnt about brain injury and how to manage fatigue. I think a lot of the problems I encountered in my first year could have been avoided had my family and I been better informed of my circumstances. We were left to our own devices and we made mistakes. I know you asked for good experiences as a result of a nurse specialist, but I never spoke to one. I think my initial recovery would have been a lot calmer had I received the proper intervention.

That sounds just the ticket!

Given that you work AND have four children, I am not surprised that you are feeling somewhat spent. (Blimey, you went through childbirth four times!!! Give the girl a medal!) Maybe the cumulative effect of increasing your hours over the last nine months has contributed to how you feel. It’s also very frustrating to receive no diagnosis for your symptoms. As a diagnostic measure, is it possible to reduce your work hours? (..always easier said than done.) If it is possible to reduce your hours, you may have a better way of assessing whether your symptoms are owing to brain injury fatigue. A reduction in hours could alleviate your symptoms. This could tell you that you need to assess your levels. If you continue to feel the same on reduced hours, then you will know that this is perhaps something else in conjunction with fatigue. Fatigue however can manifest itself in a physical way. I have felt physically rotten today by way of example. I’ve a headache, I feel dizzy and I’m very weak. But when you put it in the context that I barely slept last night (Osian is teething!,) then it begins to make better sense! Not being able to give into cycles of fatigue will affect a person; both physically and emotionally. Continue with the GP appointments and with further tests. I am doing so with my rheumatologist and it is always wise to get things checked out. But I am always mindful that my body was compromised by the SAH and that fatigue may be the underlying cause of why I presently feel unwell. Hope today was ok for you. L xxx

Hi Rhi-rhi! Nice to catch up with the old gang! I am no-where near feeling physically fine, but I am able to assess the reasons why. I had a baby in August and I’ve not been right since. Thankfully I am well supported, but I’ve only been on my own for very brief moments since August because I can’t look after the baby on my own. I have been very weak physically with stiff joints but my rheumatologist can’t find anything wrong; but I’m still being assessed. It’s possible however that child birth and the demands of parenting are taking a lot out of me, hence why it appears that I’ve slipped back. In reality, I’ve probably not slipped back, but when I was a single person living alone, I was able to manage my fatigue to allow me to do things on some days and I therefore appeared to be getting better. I wonder if you can assess anything about your life that may be causing you extra fatigue at the moment? Have you taken on extra commitments? Lovely to hear from you nevertheless, but I am sorry to hear you are not feeling well. L xx

I second that! xxxxxx

I'm also late joining this thread; but glad to hear the good news. xxx

This will probably make me sound a little weird, but hey ho, I'm amongst friends... I find that a weak shandy is a nice drink post SAH. When at home, I drink it out of a wine glass to trick my brain into thinking that I'm drinking something more substantial. I even drink water out of a wine glass - it makes me feel that I'm joining in on the fun! L xx

I totally empathise. I’m quite an embarrassment after drinking half a shandy! I asked my consultant about the effect of alcohol post SAH. He said that the injured brain has to work harder to get through things, so a healthy brain can cope with higher levels of alcohol than an injured one. Our brains are not working at full capacity to start with and as alcohol reduces brain function in everyone, we feel the effects quicker than most. I find drinking water alongside my drink is helpful and can make it seem that you're drinking for a longer duration. L xx

Hello everyone, I don’t have much time to write posts these days – hence why this post has been saved in Word and has taken days to write! As many of you know, I had a baby in August 2012. Thankfully, I am well supported by family. Since August, I have had very brief moments alone with the baby and I usually have someone with me helping. Fatigue is debilitating – probably due to not being able to sleep throughout the night! Emotionally, I am fine, which I put down to the support I have. I feel that I would be very stressed without it. I’ve also been referred to a rheumatologist. My liver enzymes are slightly elevated and blood tests show signs of inflammation. My joints are very stiff. Mornings are the worst and I’m bent over double, hobbling when I first come out of bed. (I’ve acquired the nickname Limpy – which is very charming!) I’ve had many blood tests, but save for the above, everything else is normal. Being in discomfort unfortunately drains my energy further. I also have an appointment with the stroke clinic later today. I was invited out of precaution. I've not been before. I had a fasting blood test last week which was a joyous way to start my day –no breakfast but needing the energy to breast feed a hungry baby!!! That put me out of sorts all day. I’m aware that other members on BTG have had children post SAH. My experience is that it has been very demanding physically and not something I could have done without a lot of support. My midwife and health visitor were considering putting professional help in place until they were reassured that my family were helping loads, which perhaps gives an indication of how weakened I have been post birth. Emotionally however, I am very good; and if I don’t get another chance to post; I wish you all a merry Christmas!!! L xxx