perrycornish

HI Tina and Dee I am so sorry that I am so far behind with my good wishes, I had missed your posts somehow, Tina and I really do apologise! I do hope that Dee is starting to feel more human now and am still sending good wishes even if they are late

Hi Karen, Yes Ma'am here is my contribution as requested 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, then can sleep for several hours during the day. I too have energy bursts, which last for about one hour or so, 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 neurophysio said that she could and would refer me to their sleep therapist Yay!!

Hi Adrian, Have just completed your survey and I do hope that the information gathered helps with the decision about making tools to help and to increase awareness goes well

Not one of the things I have noticed Phil, I have to say, but I wonder if it is because your nervous system ( brain in particular) is fighting to recover and is in fact healing, I know this can set off very unusual sensations, I hope it isn't too uncomfortable and that you find out what is going on

I watched and it was good, obviously some of us have more consequences (that wasn't the word I was looking for I don't think, but it will do!)than others, but it was a great help in understanding what has gone on Thanks for alerting us Kelly

Isn't it a great feeling, Kelly? I got mine back a few weeks ago and felt so delighted to be really independent again! I found actually driving, harder than I thought I would. and was very down about it, but I was encouraged to keep at it ( when I was feeling physically well enough!) and now its back to the old days when I was a darn good driver, even if I do say so myself Today I am relaxed in that driving seat but at the same time try to recognise that there are some days when I would make a better passenger

Hi Kelly, that sounds as though it could be interesting:) Do let us know, I can't get Oprah as I only have a very basic TV, (BBC and ITV and Channel 4 only) this info for the locals who will now think I am deprived

Hi Kelly, Just remember, now you have said how much you need support you will certainly get it on here. There is always someone around who will be more than willing to help. I'm still at the grinding along stage I had my SAH in March this year. Do I understand or do I understand the short term memory problems, but I am fed up with all the folk who are actually quite normal, never had an SAH etc who say Oh! I know what you mean.....they don't, the people on here do! It will improve that is for sure

Hello Beth and a big welcome You will certainly find some very supportive folk here. I shall be thinking of you on the 31st when you have your angiogram......Best wishes for then and the days in between

Welcome to the board, I'm so glad that you found us, we are a friendly bunch You did have a dreadful time, it is amazing how often people who are professionals simply do not recognize the signs of SAH! Congratulations to your husband for not giving up I hope that you come back to visit again, as you will find a lot of folk who can help with support, and fun and general backing if needed in a tussle with the authorities! Hope to 'see' you again

Hi John I'm another forgetful one, particularly short term memory. it is quite frustrating for me ( and I expect for many of us) it leads to all sorts of embarrassing moments, like not remembering that someone has perhaps sent you something and because you have forgotten you don't say a word, they must think that we are all becoming damn rude! Karen don't let people make you think it is just the ageing process 1) you are far too young for that and 2) you need to be taken seriously your 'senior moments' are caused by a brain injury, not just life! I agree that the forgetfulness etc is worse when you are tired and also apparently appear to be drunk!

Hello Joanne, It's good to have you back in circulation, don't ever worry about any abscences, we do all understand, fatigue and exhaustion you can be sure. It's just good to know that you are feeling more like yourself again and have regained your breath, so to speak Good too to hear that your father is making progress, try not to fret too much about the slow pace, brains do seem to take a long time to heal.Your father will appreciate you all for the support you are giving, I know I did once I was recovered enough to communicate and understand what was going on. It must be so hard to have to wait and watch, I sometimes think that at least in the earlier weeks we ( the survivors) are not aware of the traumas of the whole thing but those of you who are carers get the tough part, waiting and feeling useless Support is never useless, keep hoping and help your father to feel that hope too Good Luck with all you have to do and learn

Nurianna, I'm so pleased to hear that your days are becoming more positives than negatives It's a great feeling isn't it, I'm in the 'metoo' club as I feel that like you, the good days are getting more frequent, it does help you to cope when there are some positives, doesn't it? I do hope that your neurologist feels that he agrees with your other local surgeon, I bet he does as so often I think that the increases in good days do indeed happen when the brain is healing on schedule, I'll be thinking of you later this month, I have just had my 6 month check up and all is going to schedule, and I think after positives from Nuero, the good days increase at a faster rate Do try again with your smoking, Nurianna, it will work in the end. I have been lucky after smoking for 50 years, when I came out of hospital after my SAH I didn't even want a cigarette, I have a pack of twenty in my chest of drawers, I see them every day and in an odd sort of way it helps, as it reminds me that at last I can be proud of myself re smoking, and I've got an awful lot more money ( No begging PM's please

Hi Everyone and in particular, Hi to you Karen, I will add my gratitude that you had the foresight and courage to launch this website. The second word in the title title of this thread says it all Forward, Moving Forward is the positive way we can all look at this (I'm far to polite to use the word I would like to use so, ******) injury we have all suffered, moving forward is our only option really, some days it seems that it requires more than we have got to do so, but we must and with the support of others we can Your thread is a great help Karen and I too want to add that I really do think that Alison Wertheimer's Book is great value, I have taken to walking around the house with it, and reading bits aloud quite often as I want my partner to know how I feel that she has given me so much, both now and I know in the future! We need the strength of others, in our families or in the wider family of fellow SAH'ers I have just reached my six month anniversary so have, I know, way to go, so may be around for some time which may be tough for you to take I have seen my neurologist again and he is pleased with my progress and today I had another MRI, results not known to me yet, but I feel sure they too will be positive, I also know that if they are not, you will all be there to listen to me Must say I will be glad when my brain and limbs ( particularly my typing fingers, get back into synch again Thanks everyone, and a big thankyou to Karen, I imagine that for you this whole experience ( Behind the Gray) was cathartic which is always a good thing in the end !

John have a ball at the 6oth parties and I do so hope that the neurologist can explain and sort your returned exhaustion!

Hi Janet, I have pain by and large all down the left side of my body, it particularly affects, my left arm,including the shoulder, the left leg from knee to ankle and my lower back, I hope to talk to my GP again before seeing my consultant in two weeks time, as I have read about medication combinations which may help. Something needs to help I reckon as it is very debilitating as it is so severe. I can barely move and at the moment am needing help to dress and undress which I find very hard I have already discovered by trial that normal pain killers do nothing! I do hope that you find something which sorts out that pain in your head, that must be awful

Hi Pam, I'm so glad that I may have been of some use, I suggest that you put Post Stroke Pain into Google and read all that appears, it is a great eye opener

I'm wondering, as I have not seen any mention of it on this board, if anyone else has Post Stroke Pain ? I would love some down to earth info, as I am going to see my Neurosurgeon on 9th September. I need to discuss this pain with him and to get his prescription for the pain which does not respond to painkillers, and I don't want to sound like a textbook when talking to him! I do know that PSP only affects 10% of the small percentage of folk ,7%, who have an SAH! Typical me to be one of the people in such a tiny percentage of our population ( twice! ) Help anyone?

Pam, I have kept out of this discussion until now as I am retired and therefore no longer at risk of any discrimination in the work place. However you and I have something in common since your diagnosis of arthritis. I have been an arthritic for many years ( the SAH came after the arthritis) but know that I could not or certainly should not, have done any heavy lifting at work. I know that your arthritis is Rheumatoid and mine was Osteo, but the constraint on lifting still applies! I am now involved in ascertaining whether the new and debilitating pain I am getting is Post Stroke Pain ( which is a known issue post SAH) it is additional to, and feels different from The Arthritis! Check it out by Googling, just to rule it out in your case, it would be worth it, although I expect yours is R.A. as you have had positive blood tests. I hope that during your absence from work your new manager can be retrained!! It looks as though that is what he/she needs,and the problem will have been resolved when you return Good Luck and keep us posted

Hiya Carol A warm welcome from me too, if you get stuck with the computer 'shout' there are several of us here who could perhaps help, just remember one thing, you can't break it by trying things out

Karen, you are obviously so right that lack of confidence is an issue, closely associated with SAH, that is where this site can give so much, Debs now knows, as I do that confidence will come back, I was so scared that it might not and as Lynn said this brings about a complete change of character and that is tough to cope with. Thanks for raising this Debs, don't laugh when I say I hadn't got the confidence to do so, but I hadn't, I was too frightened that it might be permanent! The physical effects like weakness of limbs, walking like a drunk and speech difficulties are hard, very hard, but all of those ADD to the loss of confidence and that to me is very scary indeed, as I was a very confident person, before the SAH. I can go to bed tonight, happy in the knowledge that the confidence ( well at least some of it will return ) Thanks everyone but above all, thanks Karen, this site is what makes all of this possible!

Hello Joanne, Never fear we are all happy to answer any questions you may have When I first had my SAH ( the first hour or maybe a bit less) I too was very chatty, spoke to everyone and knew that the ambulance man was an ambulance man etc, then I withdrew completely had no idea where I was or why, and to this day I have no memory of any of the first week at least, maybe a bit more. I think that although I was awake I was not truly concsious therefore did not really react to people, including my partner. I'm fine now in that I speak,recognise etc but I still don't remember any of the incident. I had my SAH in March, as Karen has said if the Docs say your Dad is in good condition then he is and will doubtless soon be more his normal self!

Yes, John indeed I have found that I get back pain, my consultant at the pain clinic ( Yes me too } has said that I have probably got Post Stroke Pain since my SAH. The back pains are new as are several other 'grumps' although I did have an existing arthritis . I am assuming that the arthritis will stay but the Post Stroke pain will gradually lessen

Shiree, I think that the advice to write everything down is tops I wander around with a notebook in my pocket ( I tend to wear jeans) if you are a truckie I bet you do too Even if the questions seems trivial, if it bugs you then ask him! My last mischievous thought is, you have mentioned at least twice that you would like to take him home with you! So ask I too have been told it would be good if my review was done ahead of schedule, so my notebook is out! Will the pins and needles always stay with me or will they go away, Mr Grey ( oddly my consultant is Mr.Grey! LOL

I was ( and am ) 67 when I had my SAH, was also very relaxed ,I was feeding the wild birds No real stress, I'm retired and live very happily with my partner of 33Years. BP is controlled with meds anyway I suspect there is no rhyme or reason for the aneruysm to pop