jeanhelen

Thanks Michelle, for your reply and good wishes. It is good to know recovery is unlikely to be as fraught as last time. J

Hi Bev, You are probably eligible for ESA (Employment Support Allowance). Don't be put off by the multipage form, you can get it completed over the phone. If you have "too much" in savings, you can still claim on the basis of NI contributions. Try using https://www.gov.uk/benefits-adviser for info. Stay strong and be kind to yourself Jean

I am glad this thread exists, thank you Karen. Since the first (emergency) operation in July 2011 when the aneurysm ruptured, I have had 3 angiograms, all of which show a residual neck below the clip which is still "filling" according to my neurosurgeon. He has recommended another craniotomoty to re-clip it. Apparently, coiling is not an option as it is too close to where the artery branches and they would not want to risk blocking the artery as well. My partner and my son are coming with me to an appointment with the neurosurgeon on Dec11 to discuss the operation (that way they can ask him all the hard questions I can't answer). I can say no if I want to, but I've seen the scan and the residual annie looks huge in comparison with the other bloodvessels in my brain. I'd guess the risk of rupture is probably the same as it was for however many years I had it before but I didn't know before so it didn't worry me then. Another operation would at least be on a planned rather than emergency basis and my brain wouldn't be swimming in toxic blood so the risks should be much lower than before. If anyone else has had a second craniotomy, I would be interested to know anything about similarities and differences in post-op status and recovery.

Weight loss was/is part of my recovery process; I lost 3 stone in five months before it stabilised. Like you, I just had no appetite. Keeping a food diary helps me make sure I eat something for breakfast, lunch, and dinner every day even if it's just soup or a sandwich. The hospital clinics labelled me anorexic(!) which seems odd but is about the proportion of bodyweight you lose so do keep an eye on it. Headaches were a constant for me in the first few months before they started to tail off and now I seldom get them; I was advised to take paracetamol, which did help but not much. Drinking lots of water keeps you hydrated and is generally good for you as well as helping with the headache. Do talk to your GP about anything and everything that worries you; even if they tell you it's 'expected' or 'normal' they can track your recovery progress and may be able to give advice or assistance about whatever it is. Stay calm and be kind to yourself, it does get easier

sorry it's been so long since my last post; Edinburgh with my family was quite wonderful and the medication changes seem to be going OK. It seems as if I am reacting differently every time the dosage goes up; a fortnightly adventure. I had the snappish season (means i have a store of energy somewhere to be able to react even if it isn't very pleasant for my nearest and dearest), the insomniac season, the hungry season and now a tired season but, overall, I do feel enormously better "in myself" and have been able to be more social and also to poke about usefully in the house and garden so it all looks positive My GP has agreed to reduce the phenytoin by 50 and not 100mg a week once the Lamotrigine gets to full dose and says he will reduce that further to 25mg a week if I want to just it will take a lot longer! Means the dosage can be changed if I do have any nasty withdrawal symptoms although it has been made clear to me that there is no going back once the Pheny is stopped Be kind to yourselves Jean

Thanks for your input goldfish.girl & KeithH; I'm not sure if there is an epilepsy assessment centre near me but I can ask! At least I am not having these seizures daily and agree with Keith that reading about side effects can often be counter-productive. Yes, I would be happier to know if I am 'actually' epileptic or just reacting to the aftereffects of the SAH (not that it makes much difference) and at least I am not prone to multiple or daily convulsions. It is reassuring to know that even one person has successfully come off anti-convulsants however long it took, it means I can too. My GP is quite wonderful, and arranges frequent blood tests to check phenytoin levels, cholesterol, sodium and liver function so any drug-related issues are likely to be identified early. BTG is truly wonderful for the support it provides. Thanks all!

What a wonderful piece of music, even without the brain benefits, thank you!

Hi Paula, Even the best companies tend to have a maximum of six months sick pay entitlement and most of them use up your SSP (Statutory Sick Pay) in that time but you may be able to claim ESA (Employment Support Allowance) based on NI contributions, not income or savings, after that. Google for ESA claim and SSP claim which are on direct.gov sites with useful information. Also ask your company to talk you through your entitlements. Half pay is better than none at all but you need to know how long it will last for your own peace of mind. I have a salary security thing which pays 2/3 salary (less state benefits!) and my company have been very helpful about that, giving me a letter which says clearly that I AM still an employee and that what they pay me is NOT a pension. My sincere sympathy to everyone trying to live on state benefits alone, it's ungenerous to say the least. When you talk to them, it's useful to write down a list of questions for yourself to make sure you get the information you need. ESA can be claimed over the phone instead of filling in a form yourself. Hope this helps a bit, I've been through the long-term sick hurdles before and know how hard it is to figure out. One thing to remember is that you ARE sick and that your employer is not allowed to sack you because you are not able to work. Good Luck and stay calm

They are replacing the phenytoin mostly because I am still almost constantly tired, Vitamin D levels are abysmal, my eyesight is rubbish (never needed reading glasses before and even they don't always work), and three separate neurologists have recommended it. Apparently 450mg is a very high dose; one neurologist told me I must have "one hell of a metabolism" to have had sub-optimal levels in my blood at lower doses. I hadn't realised that low sodium could cause seizures and it was significantly low one of the times I seized. My GP advises that I do still need 'something' since I have demonstrated a convulsion risk but agrees that phenytoin is a 'tough drug'. It's not clear to me if it affects appetite/weight but I lost 3 stone in six months and although my weight seems to have stabilised now I would rather l like to have my curvy bits back. Thank you so much for the info/advice Karen, I shall certainly discuss a slower reduction in phenytoin with my GP. I know I feel more tired in the daytime with Lamotrigine added though not as badly as with carbamazepine when I was sleeping 14-16 hours every day. Most of the meds I'm on seem to have fatigue as a known side effect so any reduction in number or dosage has to be helpful. Thanks also to Louise and WinB, any input is useful to me and I promise I'll let you know how it goes, hopefully not in excruciating detail. On a much more pleasant note, I am off to Edinburgh tomorrow with my beloved son and my gorgeous grandchildren for a few days with my siblings. Gods willing, I will have no funny turns while I'm there, if I should, I will be with people who love me and know what to do. I am loved, you are loved, we will all get through this

Hi Paula, I can relate to what you say about persistent numbness; my left leg and foot felt numb for months but it DID improve and I hardly notice it now. 13 weeks really isn't very long for your brain and body to recover properly, it feels like a very long and very slow process but as my GP has told me frequently, SAH and surgery is not trivial thing and it will take as long as it takes for me to feel "well" again. I have been off work for a year now and envy those who are able to go back to work as I still would not be capable of doing my job. Depression is a tough one, maybe you could ask your consultant or GP to refer you for counselling or a Local Head Injury Service or support group. My own GP has been marvellous and I hope yours is too, he seems to have infinite patience with my seemingly endless complaints about feeling tired all the time and low-level misery about not being allowed to drive now as well as fears about what else might happen when I will feel "OK" again. Enjoy your visit with your son, and don't expect too much of yourself. Everyone on BTG is friendly and has been or is in a similar situation to yours, including the need for reassurance

I had a 'constant headache' for at least 3 months before it backed off and now, a year later, it has been months since I had one. If the medicos are pleased with your progress then accept that and don't expect too much of yourself - allow whatever time it takes to recover gently. Look for 'a letter from your brain' on here, it does help explain as lot of what is going on. There are no hard and fast rules about how much better you should be after 1/3/6 months or years, we are all very different. Some days are better than others, please believe that enjoy them when they turn up. Be kind to yourself, don't expect too much too quickly

Wishing you the best for today, and every day after, David. My first year milestone was last week and I'd vote for celebration. You have made it this far, against huge odds, your poem is lovely and I hope your journey from here will be easier than the last year.

Sometimes, people are afraid. Your situation is something they don't understand or feel they would be able to cope with, and don't want to even think about. Your continuing existence makes them question themselves and feel very uncomfortable; so they distance themselves from you, which hurts - immensely. The person you are today is a survivor,not only in terms of still living but also in coping with the sometimes huge changes in how you act and define yourself in a world that shifted unexpectedly. Selfish as it may sound, YOU are the most important person in your world. if your erstwhile friends can't cope that is their problem to fix or not as they can, not yours. What you need is friendship that accepts as you are today and all that you can become or regain; that may be someone you have known for a long time, or someone very new in your life. If they can't stay, then let them go, it is no fault in you, or them, only in the circumstance of what has changed between you. Jean

It was 7 months after the operation that I finally got to see the neurosurgeon and was recently discharged from both the neurology and endocrinolgy clinics. However, I have had an average of two 'medical appointments' a week since coming home from hospital last year. Those include blood tests, GP and Head Injury Service appointments as well as neurology/endocrinology/TIA clinics. Each one seems to have a slightly different set of opinions and recommendations which is a bit confusing. Angiograms = 2 this year (first one was abandoned due to an artery being 'nicked', and another is planned for September to monitor the residue of the clipped aneurysm and a tiny 2mm one on the opposite artery. Its position means it is not suitable for coiling so the neurosurgeon recommends a 'conservative' policy i.e. avoiding surgery: although I may eventually need to have another craniotomy to reposition or replace the clip. Not a happy thought. Monitoring is likely to include an annual angiogram (which has its own risks) The only CTscans/ECGs/x-rays I have had since the SAH are when I've been taken to hospital rather than any planned dates. Jean

So sorry to read you are having such a tough time. I was on medical leave for 5 years with depression (before the SAH so unrelated to that) before I did a year-long graduated returned to work with psychotherapy support. For me, the talking therapy helped more than any of the different medications prescribed and I recommend waiting and/or pushing for psychotherapy. Psychiatrists are able to prescribe medication and psychotherapists are not but your comment about Citaloprm etc suggest that getting medication isn't an issue. You may find that a psychiatrist will refer you to a psychologist anyway. Mostly, dont beat yourself up; its OK to be finding life hard, mental health is often misunderstood even when it is recognised. You are ill, not malingering, and I hope things improve for you soon and continue to do so Jean

Thanks for the messages, people, it helps me realise that I don't need to be isolated in terms of talking about the sometimes vague symptoms and problems I have. How odd that Karen and I share an anni-versary, and how reassuring that bagpuss had such a similar history to mine and is another of the "functioning survivors", a beacon of hope that I could have yearS to let myself stabilise and may well find the energy to be able to go back to work. I did read the 'Letter from your brain' some time ago SarahLou, thanks for the reminder. I agree entirely that re-reading it also helps. Im a bit dented now, not broken, and there is the rest of time to improve even if slowly. Sunny today every day has something good in it. Jean

It seems unreasonable that I have already been off work for very nearly a whole year after "my brain burst" unexpectedly The headline is that I am breathing, able to walk, talk, live at home, and -sometimes- feel very positive about the future. The subtext is that I am still not "fixed", a relatively minor but constant source of concern to me. Mostly I am unbelievably fortunate. I was driving in the outside lane of the M4 on my way to work on Monday July 25th 2011 when a large aneurysm ruptured and (as far as I know) I lost consciousness following an sudden and incredibly painful headache like nothing I had ever experienced. I felt/saw it as a huge yellow complex lightning show inside my head. One second I was happily driving to work thinking how good it was that traffic was light, it was sunny and that I would get to the office in time to catch up with emails etc before meetings and calls started. The next, the car was on the hard shoulder with the engine off. I felt very ill, almost like a baaad hangover, was sick, and eventually realised some woman was standing outside the car demanding I give her my keys. I wanted to just sit there till I felt better before probably driving home or back to my partner's place in London since I didn't feel well enough to cope with work. I asked her why she wanted them and she told me she was worried I might have "another seizure". What? What seizure? What was she talking about? Please forgive my incoherence in this and probably any following posts. My memory of that time is a collection of snippets which are not necessarily in order and needed a fair amount of brute logic applied for me to make any sense from them. Anyway: I gave her my keys; I think I was breathalysed (remembering being told I had to 'blow harder' so assume the police were called). I know I sent a text to my boss to tell him I wouldn't be coming to the office as I was being admitted to hospital. I remember someone in a uniform asking me if I had been sick. I was able to give them my name, talk some kind of sense, but the next memory is mostly being asked/told that they were taking me to Charing Cross Hospital. Paramedics with an ambulance then. I told someone, either them or someone in A&E my son's name and that his number was in my phone. After that, there are only tiny bits of memory until I became aware that I was in a hospital bed. Stupid as it may sound, I did not realise that I had spent hours in an operating theatre, or how weak I was, or how unbelievably lucky. From my point of view, one or both of my son and my partner were there every time I 'woke up'. I was in the High Dependency Unit for several days, unaware of the times I had seizures, unaware that the left side of my body was totally unresponsive, unaware that my face looked as though I had tried a bout with Mike Tyson. I WAS aware that I had some kind of tube stuck in the nape of my neck, another up my nose, and of various (too many) tubes and drips. I was certainly aware of what seemed like a constant parade of nurses telling me to squeeze their hand, push or hold my feet or arms against them, asking if I knew where I was, the date, the year, over and over. All I wanted to do was sleep and go home when I woke up. After 17 days, I was finally allowed to go home, still thinking I would then be "OK" and able to get back to work "soon", never imagining how close I came to dying, or how long it might take to even begin to feel "normal" again. I found this site a long time ago, when I was desperate to understand what had happened to me and how long it might take to recover. For everyone reading this who is in the same place I was then I apologise for taking so long to post anything. Two other links I found, and would recommend are http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ and http://www.neurosurgicalatlas.com/index.php/video-conference-center/general-information-for-patients-with-brain-aneurysms/ I hope I am not breaking any rules by posting these links and that someone else may find them useful. It's very late and I must go to bed THANK YOU to everyone who has shared their experiences and thoughts on these forums, it has helped me more than you may think Jean