About Me

[Guest Robert]

My name is Robert, I am 44 and live in the UK.

I found this website through browsing and decided to register to share my experiences, and look for support. In particular I am interested if other people have the problems that I am experiencing, and what help (if any) they have found in dealing with them.

I had my SAH almost exactly two years ago, followed by coiling and two follow up angiograms after four months and seventeen months which have both shown up ok.

I have not had any movement problems or obvious cognative problems, although I have had quite extensive neuropsychological testing which show that there may be some subtle deficits.

However, my real problem is with the physical symptoms that I am still experiencing. They are pretty difficult to describe - dizzy, faint (almost like being drunk, but not as nice) together with weakness, tiredness and feeling generally and often numbness in my limbs. They range from the troublesome to the totally overwhelming. They are probably not as bad as when I first came home from hospital after the brain surgery, but can still be pretty awful and it is the sheer unpredictability that I find hardest to cope with. Certain triggers such as tiredness, stress and light levels seem to play a part.

I last saw a neurologist over twelve months ago who described me as a "success story" in neurological terms and seemed to suggest my problems were psychiatric. I had started to receive treatment for a depressive illness, and I have been given a whole variety of medications which have failed to make me "better". I have also been going through Cognative Behavioural Therapy for over a year, and while it has been a great help, it hasn't cured me. My psychiatrist now thinks my ongoing problems relate to the original brain haemorrhage and referred me back to the same neurologist, and I am due to go back at the end of January 2008. However, I am not sure what, after all this time, he will be able to do to help me.

When I first came out of hospital, I was given false expectations about recovery (I was told 2-3 months) and after two years I am not sure that I will ever get better, although I haven't completely lost all hope. There's always hope. I returned to work about eight months ago, but I only manage ten hours per week over four mornings. I find it a real battle most days, and while I would like to go back full time, it is not something I can manage at the moment.

I would be extremely grateful for any advice or help that can be given.

[Louise]

Hi Robert

And welcome to the site, I honistly dont think that they can put a time scale on recovery everyone of us is different the common thing is we've had a Brain Haemorrhage the recovery is all different, I havent managed back to work part time or other I was left with tiredness that's un-decribable, most days I feel hungover without the enjoyment of the pleasure.

We all recover at our own rate and with whatever we have to cope with at out pace.

Hope to hear from you soon

Take care

Louise.x

[Karen]

Hi Robert and welcome....

Do you know which artery was affected?

What you experience is pretty similar to myself .... limb weakness and dizzy .... when it's bad, it can be made even worse when I'm tired or have overstretched myself in some way. Do you have any problems with walking or driving and does it make the dizzy head worse?

For me, I still find it hard with visual/noise stimulus and I can't stand any bright light ..... hence wearing sunglasses, even inside my own house, which can help with the dizzy spells. When the dizzy spells are pretty bad, then my walking resembles that of a toddler or probably like you, I feel that I'm staggering and veering all over the place. Walking used to come naturally, but I now have to really think about it.

After the SAH......in fact a couple of years later.....I've been diagnosed as calcium and folate (iron) deficient ...... nobody can give me any reasons as to why I am.....but the SAH also triggered a problem with my hormones. Some deficiencies can enhance problems, such as dizzy spells .... so my best piece of advice would be, to ask your GP to carry out some blood tests (especially thyroid function) to rule out any abnormality that could be easily fixed. The supplements that I now take, haven't cured me 100% of the dizzy spells, but I'm feeling a lot better than I did 6 months ago.

The circle of willis .... where most of us have the bleed from one of the major arteries..... is very close to the pituitary gland and the hypothalumus (spelling?) .... from what I've read, both can be damaged after a bleed, so it might be worth you doing a search on Wikipedia.

I've finally got a pretty good GP, who's willing to go that "extra mile" and more importantly, listen to me and take me seriously. He's also prescribed me Propranolol, which helps with the anxiety and my migraines.

I think that most of us were told that it would take 3 - 6 months to feel better .... however, for some of us, that hasn't been the case. I can remember being told by somebody that had also had a SAH, that it would take at least 2 years to see improvement ..... at the time, I thought "no way" .......

Most days are also a battle for me .... there's no way, that I could consider returning to work ...... even though I did try at the 3 or 6 month stage and it was laughable ..... I ran out of the building in tears and never returned.

However, my recovery has been at a snail's pace....but it's still happening and I try my hardest to be as positive as possible.....it's not always easy and I do get weeks when I feel pretty fed up to say the least. These message boards have helped me considerably and without them, I'm not quite sure where I would be. xx

[Janet]

Hi Robert and welcome

I'm just over a year into recovery and suffer quite a lot of headaches, nausea and dizzyness still. My Neuro told me that if I looked back in twelve months from when he operated that I would be nearly back to normal.

I have had to accept that I may never get back to 100%. This site has helped me to understand and make sense of what happened. The friendship and support I have received from everyone on here has helped me to come to terms with my limitations.

As Karen says these message boards are a lifeline to all of us who use them it really is a great place to be.

Look forward to hearing more from you.

Janet x

[Guest Robert]

Hi Karen

The rupture was in the right middle cerebral artery.

I have no problems walking. With regard to driving, I did get my driving licence back and did drive short distances for a while. However, my car had to go back after I had been off work on the sick for twelve months, and due to lack of confidence and lack of a car, I don't drive. Curiously, I started swimming again about four months ago, and I find that the dizziness, etc. is a lot better when I am in the water and starts again when I get back on "dry land".

I did have various blood tests about nine months after the SAH to rule out things like thyroid problems and they came back ok. Unfortunately, the GP surgery only takes appointments on the day, and so you have to ring up and get whoever is available. Hence, no continuity of care.

I did try glasses with tinted lenses, but I found that they didn't really help with the dizziness, etc.

I'd heard about the two year time limit after which you stop getting better, but the neuropsychologist I saw told me that this was not the case. So I still live in hope.

Best Wishes

Robert

[Blondie]

Hi Robert

Welcome to the site. I think Janet sums it up perfectly - it is more about excepting that you may not ever be exactly the same as before. You might find it easier if you dont compare to your pre-SAH self, though I realise that is easier said than done - it's good if you can see the positive in the progress you are making. I tried to focus on small steps too.

I'm over 3 years and I still get headaches periodically, and suffer from nausea too - though not dizziness. Whilst I do have bad spells, I do see myself still making progress at this stage, so I wouldn't worry about the 2 year thing

Take care, this is a really supportive site.

Blondie

[Slim]

Hi Robert,

Welcome to the Site. I can only echo what the others have said.

I still have numbness/pins&needles and balance issues. I'm still pushing to have the numbness recognised, but have had some confirmation and help on balance issues. Which did reassure me. Even at this stage I'm still healing and I've learned from others on this site it will be a process that will continue for a long time.

I was also told I'd be back to work in 3 months and was gutted when I couldn't go. My husband since told me My Neurologist told him it would be at least a year I guess sometimes they are in a difficult position and want to give us the best hope. These times are only a guideline. You will know when you are ready.

This time last year I wasn't able to switch on a computer. Now whilst still not ready I am in the serious process of organising a return to work.

I have learnt life is indeed too short and we need to appreciate where we've been, how far we've come and take our time about where we are going. You'll get there in the end!

Hang on in there.

Aine xox