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Non Aneurysm (Perimesencephalic) SAH-ers, chime in here


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Hi folks,

Sue and Richard recently joined us as non-a's, so I'm starting a thread again on our specific experiences. Sue had asked about whether our recovery is the same as the aneurysm folks, and in most ways it is, in my own experience. As we all know, it is VERY different for everyone, so if anyone else wants to contribute to this discussion, you are most welcome. Below is my response to Sue when she asked about my recovery so far:

It will be good for us to compare notes as Non-A's. And yes, many of the symptoms and recovery problems seem to be exactly the same, aneurysm or no. I don't have the vision trouble that Karen does, but I have experienced just about everything else. All of the headaches and dizziness improved a lot after my initial terrible seven weeks. I hope to post my "story" for everyone before long and you can read all the gory details there. :) After those physical painful issues, I had trouble with intolerance of noise and visual overload. I found for a while that I could watch TV without the sound, OR I could listen to it while my eyes were closed, but to see and hear it together made me crazy. I had the same experience when I went into a store for the first time. Wow! It was too much to bear and I had to leave.

I had a period of time too when walking was extrememly painful for me in the area of my tailbone. It was so bad that I would collapse. We ended up getting an MRI for that and they found nothing unusual. And of course, it went away on it's own.

My main troubles at 17 months after are stamina and memory. I have to pace my day carefully and I still take a nap in the afternoon more days than not. I tire more easily during activity too. But again, I see gradual improvement still in all of that. The memory is an ongoing issue. The long term is fine. Short term is very spotty. I don't remember what is on my calendar without checking it frequently, and I have moments of total blank out sometimes right in the middle of a sentence, which can be very embarrassing. But I am learning to cope and just tell people of the problem as I go along. I can't say I've seen much improvement in that regard over the 17 months though.

I am also going through perimenopausal changes right now, so it's hard to say how much is attributed to that instead of SAH. But my husband seems to agree that it's more SAH than the big "M".

So, in a small nutshell, that's what my experience is at this point. I would also say that the doctor's suggestion that I would be good as new in 6-9 months was bogus. I've since read that it can be up to as long as 6 years for the non-aneurysm full recovery. I'm counting on less than that of course, but it was comforting in a way to know that fact. At my one year point I expected to celebrate and spent the day in tears because I wasn't 100%. Since reading the correct statistic, I feel better about coping and letting it take it's necessary course.

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Hi Annie and others-I am over years post SAH-I had exactly the same re the noise sensitivity in the early days-a kettle noise was agony and the tv had to be really low.

Crowds were an issue too.

I still have short term memory issues..or is it me getting older?

The tiredness is much better and my stamina generally is what it was before although I don't stay up late!

Most of my issues were by far emotional.

Annie ..my friend is out of hospital and copying the dvd for you..can you view in pal (uk)format and/or ntsc (american)do you know????

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Hi Andy!

So nice to hear from you, and I'm so glad to know you're doing well!!!!!

Couldn't tell you at all about the DVD. I know the one that Keith sent to me about the brain unit at the hospital worked for us. Maybe ask him? (bogbrush)

Thank you, xo,

Annie

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  • 2 weeks later...
Guest dorina

hi Dorina here . Just found you tonight while serching for evidence for my appeals tribunal with the DWP .I had a Non Aneurysm (perimesencephalic )Sah in November of 1993 at the age of 45 .

I had my DLA stopped because my new GP wasn't at all helpful in helping me with my renewal application . Because you look ok they think you arn't telling the truth .I suffer head aches, dizziness ,unreality , fatigue, every day this can be brought on by nothing ,Visual (too much information) lack of sleep,

does anyone know of any good web sites that could provide the information I need saying these symptoms are typical post NAPSAH.

I look forward to visiting the site again soon and having a chat with you Kind reagrds Dorina

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Hi Dorina and welcome! :D

The symptoms that you describe post SAH are typical of what many of us here also experience ...... my worse symptom, is definetly the dizziness/visual problems......headaches you can take painkillers, fatigue you can go to bed.....but with dizziness there's not a lot you can do for it. Are you still experiencing all of these 14 years post SAH? I'm 19 months post SAH and it's bad enough still experiencing them at this stage!

You could try posting on the Different Strokes website for info....there's a link on our homepage.....Brainhasty pastry is also pretty good for its forums http://brain.hastypastry.net/forums/index.php

Anyway, hope to hear from you again,

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Guest dorina

Hi Karen thanks for a swift reply, yes I have all the symptoms still, I went back to see the consultant, He had said 10 years ago I was hyperventilating .this is supposed to be a neurologist So for 10 years I just struggled on my new gp thinking I was a neurotic woman.Then in desperation I asked to see the neurologist again . He was a total pig he said I thought we agreed 10 years ago you were hyperventilating ,I said no you did I was too polite to contradict you. At this point he got very angry and said are you here for me to tell you what is wrong or are you here to tell me my job. and at this point he just started reading some papers and ignored me so I left. Then a new Gp joined the practice .he's lovely he said lets approach this another way he sent me to a phyciatrist who in turn sent me to a phycologist she put me through 6 hours of tests over 2 weeks .the out come was no it wasn't me ,I don't have any phycological problems. it is due to brain damage caused by the subarachnoid haemorrhage .So I now have that in writing.

I.ve just had a thought would I be able to give my email address on the site and ask all the members of the support group who have the same symptoms as myself to email me . then I could take them to the tribunal and say look i'm not alone all these people are the same.

what do you think

love Dorina

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Hi Dorina,

I would suggest posting your plight on the Different Strokes Website. Quite a few of the site's voluntary helpers have a wealth of knowledge in advising people on these sorts of tribunals. Many people on that site have suffered a SAH and I've seen posts in the past, where people have had problems with getting their DLA and have been advised accordingly.

I would imagine that to make your case, that you would have to find others approximately in the same time frame as yourself? The Different Strokes website has been running for quite a few years, where as this site, has only been running since Aug 2006, so most of our regular members are in the early recovery stages of SAH, where the symptoms that you've described would probably be classed as normal.

You could start a new post on our board and ask people what stage they are at in their recovery and what symptoms they are still experiencing and use that information? However, I would advise you not to put your e-mail address on the board, as you will probably receive an influx of unwanted spam.

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Guest dorina

Hi Karen ,Thanks for your advice.

DIZZINESS I was prescribed a drug for migrane quite early on after my SAH but sometime last year I noticed that it helped with the dizzines My symptoms follow a patern I don't know if yours run the same first I sudden ly feel very tired I may have only been out of bed 10 mins but then I start to feel waves of dizziness then it goes onto a headache painkillers and sleep for a couple of hours.now when that overwhelming tirdness starts I take 1 zomig ( zimavane)that sorts out the dizziness and two co codamol for the headache It usually sorts it in about 10/15 mins which then gives me a few hours of near normality. It's worth asking your GP if you can trythe Zomig it was a neurologist inFazackerly hospital who prescribed it

love Doreen

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Guest dorina

Hi Karen again

I forgot to mention Zomig are expensive about £99 for 6 but don't let your GP deny you them ,They are well worth a try I could not function without them.

Its the difference between excisting and having something like a life.

Love Doreen

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