debbieg

I just wanted to post this and share with the forum. I am 9 years on from my SAH with no evidence except from lumbar puncture. Did the 28 days hospital and released to absolutely nothing and have struggled ever since. Many odd symptoms but this constant exhaustion was seems to be a thread running through many SAH survivors. I still have to rest for several hours a day and nap for an hour. My lunch break is about two to three hours. Then by 7pm I've had it again. I can't even go out for the day as I get tired after a few hours and if I don't sleep I get dizzy and faint. Anyway for years I felt my body was fighting something rather than just getting over SAH being the whole explanation. It's taken years, tests by different specialists all coming up negative and I'd just about given up hope and just accepting my situation of what feels like an 80 year old or more. I'm now 51 and managed to find the right route to go down and have just been diagnosed with Lupus and Sjogrens Syndrome autoimmune conditions (scared and relieved about it). It was sudden very dry constantly runny eyes that got me down the right path. I'd had a very dry mouth since the SAH and an unquenchable thirst most of the time, sensitivity to light and rash when I go in the sun but no one picked those symptoms up. I don't know if the SAH sparked everything off and the menopause has exacerbated things but I wanted to put it out there that the exhaustion some may feel may point to another underlying condition which the after effects of SAH has hidden. I have medication which will helpfully ease the tiredness and a bag of other meds now to take! But I am extremely pleased that I didn't give up when GPs have written me off as a hypochondriac or just put everything down to SAH. It is becoming more known that body trauma can kick start autoimmune conditions and if you feel something isn't right don't give up. Hopefully any others who feel like me won't have to search for years to get answers. Just because you have had one rare condition doesn't mean you can't have another.

I had my appointment with the vascular consultant who signed me off with a 'how are you feeling' and 'try and weane off the pills'. That was it! I had a day just on paracetamol but spent the next two days feeling so rough. The headaches and dizziness were as when I came home weeks ago. I wish consultants could try living with our heads for a week and see how easy it is to do every day things without the pills. I'm back on them again now but the dizziness is still not going fully or the headaches. I take a lower dose than prescribed for codeine and stemetil so an increase not a decrease may be needed. I do hate the false sense of recovery that the pills give you though. On reading people's stories I know it's a long roller coaster of ups and downs with no particular end even. I still wonder whether it will happen again though even though the consultant said it's a near zero chance. Because they didn't find anything I don't know what happened in the first place. Anyway on the up side I should be moving home in a couple of weeks and be out in the country with fresh air in abundance. My dog has been sleeping in the afternoons with me which is good company until he decides to get up and sit on me to wake me up. I don't get my words mixed up as often as before and I can manage a bit of work each day. I do get anxious though in crowds or with strangers and often just have to leave straight away and get out the situation. Has anyone else found that in a situation that's overwhelming they just have to get up and go there and then. Even sometimes when I'm working I have to say to my husband that's it I have to lay down now. It is very annoying and not me at all, I was outgoing. I wonder when this will improve? Anyway I'm off for a lay down! Debbie

I had my Non-Aneurysm SAH a day after you. I was in hospital two weeks. Since coming home I'm still trying to work out where my brain is on any one day. Sometimes it's good sometimes hopeless. I am lucky I have my own business so I can sleep or rest in the afternoons. I feel bad that you didn't get more paid leave. I see you have a dog and I have found short walks with mine really therapeutic. Although now I need a lift everywhere even to take the dog somewhere nice. It's hard when you are so independent to become so dependent. Like you I am so glad I'm still here. I'm glad I only found out when I came home that 50% don't make it after a SAH. I don't know about you but I worry it will happen again every time the headaches are bad. I found just telling my husband and daughter that I'm going through a frightening moment helps. How are you coping now seeing as you are probably at a similar stage to me? By the way what breed is your dog? I have a soft coated wheaten terrier called Toby. Keep walking (not running) on the road to recovery and I hope we both progress ever onward over the next few months (and probably years). Debbie xxx;-)

I tried going without the pills for a day. Since then I have had a constant headache. I took them again and will not try that again in a hurry. Still it's the only way to guage how you're doing. Perhaps I am doing too much as my husband keeps telling me. One of my Doctors in hospital did say though that recovery will be up and down and not a steady up as recoveries from other injuries usually are so perhaps I'm having a bad week after a couple of good ones. My husband is very patient and considerate and helps with the housework and does some of my typing for me for our work. My daughter is doing all the cooking so I am very lucky. They may get fed up as the weeks and months go on though. I am seeing my vascular consultant next week so it's my first visit back to hospital since I left there. Not sure if I'm looking forward to it or not. I don't see my Neurologist until July. I'm feeling a bit emotionally numb at the moment. I know I should feel a certain way but I can't actually feel it. I can cry but that's it. For a woman nearing the change it's no bad thing just a bit odd. Anyone else been through a similar experience? I am reading 'A dented image' at the moment and finding that very helpful. Thought I would give it a try as it has been recommended by so many out there. Your continued support and kind words are much appreciated. Debbie

Yes I agree the 'you look so well' you get from people tends not to make me feel better. they mean well but yes you may look normal but your head is in a washing machine at the same time. Going round and round and not always making sense of things. I have had trouble with long explanations or conversations. After a couple of sentences I have no idea what they are talking about. I have to have instructions broken down into managable bits. I think i'm very lucky to be eight weeks on and doing so well. I must be difficult for you having to coils. The ending up in bed thing is the same for me. Just when you want to get things done you have to lie down or fall down. I know I need a rest when I begin to sound drunk, is it the same for you? I went to the cinema today but it was such a big screen with lots of flashing and jerky filming. I wished I hadn't gone bu you have to try things or you don't know. Drinking a lot is what I have to do a lot of anyway because I only have one kidney so I got into the habit before the SAH but you really notice when you haven't drunk enough. My head feels really dry. Aircon is the worst atmosphere, you need litres and litres to stay hydrated. Hope you keep on a good road to recovery. Debbie xx

I appreciate your support and I am beginning to realise I'm lucky to be alive and in one piece. I am 42 shortly and maybe wouldn't have made it had my SAH been worse. I had a sister-in-law who died at 39 of unknown circumstances so my husband doesn't have to join his brother just yet in being a widower. My head is pretty fuzzy today as I have been overdoing it and my teenage daughter is going through a rough time herself. Friends mean well but any conversation over half an hour is extremely tiring but it's hard to tell them you need to rest and to go. My husband is getting better at finishing people's conversations when he knows I'm getting too tired we need to work out a 'code word' I think. I need a bit more rest and a bit less stress than I was getting and then I should perk up again. Did you find recovery is some days good then it dips again?

I had a non-aneurysm SAH In January 2012. Had 2 CTs, one MRI and 2 Angios. The first angio included something called spinning which I felt I lost consciousness for a few minutes the first go they had so they did not do the other two they had planned to do. I felt a bit like what having a small stroke would be like, my lips and left arm went numb for ages. Don't know if anyone else has experienced this. Anyway despite all this they found nothing. Only the lumbar puncture was positive. I was only watching TV laying in bed when it happened, a thunderclap headache just hit me for 10 mins where if I could chop my head off I would have, then sick over and over again with neck pain and bad headache to follow. I had had 3 visual migraines during January before the SAH. I never had a migraine in my life before this. Has anyone else had another SAH after a non-aneurysm SAH as they said I am no more likely to than any normal person. I hope it's true. Lukily mine was a Scale 1 SAH and since being on Stemetil my dizziness and sickness has all but gone. 7 weeks on and apart from mild headaches, some day sleepiness and a bit of insomnia I feel almost like my old self. I hope it lasts as before changing medication I couldn't manage doing anything much at all without feeling woosey headed and exhausted. Aparently our type of SAH is rarer but my hospital had two cases last summer before me and supposedly mine was during 'SAH season'. Good to find this site and meet others the same as me. Debbie xx

Saw the GP just over a week ago about the woosey head and dizziness. She suggested stemetil 5mg per tablet up to three times a day. It also has the added bonus of being anti sickness aswell. I stopped my original anti sickness because of this. Stemetil has been a marvel. My head no longer has any dizzy symptoms at all. I feel just about like I used to just with headaches if I do too much and forget to take regular paracetamol and some tiredness but that is also a lot better. The only downside seems to be that I spend about an hour in the middle of the night completely wide awake but I do drop off again. The directions say that this is a medication for schizophrenics but if it sorts out a SAH head too then great. Anyway I would be interested to know if anyone else has tried this drug long term and if there could be any other side effects lurking because it seems too good to be true so far. I am also down to taking one 5mg tablet a day too. I am seeing my vascular consultant in a couple of weeks so I will run it past him anyway. Thanks so much for the advice and support as I know from reading many stories on here that this is just the beginning of my journey. I'm sure the dread of it happening again will lessen in time. Although I have a teenage daughter and she gives me constant stress I can cope now whereas a few weeks ago I couldn't at all. I feel so good now that I have sold my house this week and am taking on a move! I thought it wouldn't be possible for months or years to tackle but I feel life is short to not try and do all that you want to and can do. Debbie

Had my SAH on 29th January 2012. Doing nothing in particular but sudden pain in neck and all around my head beyond what I could put up with. Was sick several times and ended up by ambulance in A&E. Transferred after a day to Hurstwood Park Neurological Hospital (who were great). Nothing was found despite 2 CTs, MRI and 2 Angios. Only the lumbar puncture was positive. I had awful experience at the local hospital who treated me as someone who had just had a bad migraine. No pain relief for 8 hours. After the lumbar puncture it all changed and was sent within a couple of hours to Hurstwood Park. It all got very scarey then when brain haemorrhage is mentioned. After two weeks in there I got the all clear with a final angio and sent home. I don't know if anyone else feels a bit cut adrift when they leave hospital. There was nothing said about the future apart from it should never happen again. I have a follow up in 5 months time. 5 weeks on I have a woosey feeling all the time a bit like being on a boat and if I try to do anything much apart from laying down the headaches kick in. I guess this will continue for some time, it just gets frustrating being home but not being able to do anything. I get the odd panicky feeling that it all will happen again especially as I don't know where the bleed came from in the first place and why. I am so glad to have survived as reading more info on SAH you are lucky to come through it. I hope the side effects subside soon but reading other people's stories, who can tell. Just glad to find a site where others may have had the same experience as me as I was the only female SAH patient in my neurological unit when I was there so I had noone to compare symtoms with. I have kept in touch with a few patients from my stay in hospital and we keep texting each other about our ups and downs and that has helped a lot. Just feel a bit useless and stuck at home at the moment.