JayKay

Hi there - well, my OT and neuropsych both suggested I try meditation and with the help of some iPhone apps and iTunes downloads, I have tried that. It really helps you to relax and also helps with sleeping. I have been into Personal Development for years, and I'm sure that's what has kept me positive all this time (1 yr post-op) and through the symptoms. I think you have to listen to your body, and symptoms are part of this, and when dizziness or headaches come, then it's time to slow down and relax. It doesn't mean you have to panic and think you'll never get better - it just means your brain is telling you you are overdoing it. Well, that's what I've found anyway. It's pretty hard to forget we've had an SAH, especially those of us who have scars to show for it, but you can move on. Honour what happened to you, respect it, and then look to the future. I was told keeping a diary was helpful, and as you know I already had a blog so I wrote about it on there. I think that has been very therapeutic.... I know I tried very hard to just "get on with it" but it wasn't that easy. My body protested. I now respect those times when I'm tired and dizzy, and chill. I still worry about not making any money and things like that, but I suppose they pale into insignificance when the alternative is not being here any more!

Hello and welcome! Gosh, at 3 weeks I was still in hospital.... You are doing very well to come on here and join us but don't overdo it - and I'm the Queen of "overdoing it" so I know what I'm talking about lol. When I was so early on in my recovery I found it very interesting to read about other people's stories, who had gone through the same thing. I hope we can comfort you in the same way! However, you MUST remember to drink your 3 litres of water a day (I use a lot of sugar-free squash) and REST whenever you can. Your brain is still very fragile and by overdoing it you will just delay recovery. Did you get the Brain and Spine Foundation booklet on SAH? I found it very interesting and made my family read it too. You can download it from their website or look at it online. There are also lots of interesting fact sheets on the Stroke Association website about life after stroke (an SAH is a haemorrhagic stroke). And if you are interested, I charted my recovery on my blog - all the posts relevant to my SAH are here. Take care!

Strangely, I didn't dream at ALL (or at least no recollection) for months after the SAH. I now have normal dreams, I think.... Funnily enough, during my pregnancy, over 20 years ago, I remember having very angry dreams, where I'd confront people and shout at them! Very unlike me in real life lol. I had a very happy pregnancy and it was very much a wanted one that I'd waited 10 years for, so I have no idea why I was so angry in my sleep. Weird!

Aw bay, I'm sorry you're feeling so rubbish I can sympathise only from afar - I used to suffer terribly with pain and when it got to the point where I was having pain both during my period and at ovulation I said enough and finally got a Mirena coil. Best thing I ever did! I don't have periods at all now..... Have you thought of getting a referral to a gynae or to an endocrinologist? I work for an endocrinologist and she deals with hormonal problems. It's worth a try? Good luck!

Aw Carolyn! I'm so glad, first of all, that the brain is all ok. I'm sorry that, being in the USA, you have to worry about money in an emergency like that and can't just turn up at A&E like we can Gosh, I don't know what to write next - I keep typing and deleting! Basically, Lynne has put it very eloquently again So I second what she said. Big hugs!

I agree with what others have said, Karen & Donna - counselling might be worth a try, if you've not already tried it. I have had counselling in the past for reactive depression (after my divorce and the death of my father all the same year!), and it really did help. This time I had the sessions with the neuropsych and it helped too. I think when you have little ones around, you don't get enough time for YOU and although we superwomen don't like to ask for help, maybe it's time to get other people to take the kids off your hands from time to time, even if it's just so you can have a soak in the bath with candles (and a glass of wine if you are so inclined; for me it's more likely to be a bar of chocolate )

Gary - I hear what you are saying: I'm sure that experiencing war must be so horrendous that we can't even comprehend it. But I don't think the author of the study is likening surviving an SAH to having survived a war, more that the effects of SAH on the person can have the same outcome in some people. The term is post TRAUMATIC stress, and I guess whatever the trauma is can have the same outcome. Not sure if that makes sense? Karen, I agree: lots of us have had/are having anxiety etc after the SAH, as well as the fatigue. The more I read stories on here, the more thankful I am that I seem to have had really good aftercare, and that's not right. I am totally up for campaigning for standard aftercare practice across the UK! Where do I sign up?!!

I second that!! Every single one of us is different; there is no "normal" for recovery, so don't try and measure yourself against others. And don't worry about the amount of input or not you put into BTG: it's great for support but that doesn't mean you should feel obligated. I'm sure none of us mind if you read and run - and I'm sure there are more out there who do the same! The great thing about here is the lack of judgement. We've all been there or are carers for people who've been there, so don't worry I'm so sorry to hear you were in hospital again. It must be scary to have seizures, so chin up, as my old grandma would say. Smile!

I've just been reading through that, trying to make sense of the medical jargon lol (and I'm a medical secretary!!). I don't think I have PTSD but I do have the horrendous fatigue that I just can't shake. I do think, though, that I was massively helped by seeing the neuropsych quite early on in my recovery. ETA: a quote from that study: "Using standardized measures, we found that fatigue and sleep problems occurred significantly more often in SAH patients than in a matched control sample. Fatigue and sleep dysfunction were persistent problems for SAH patients, with more than 30% of patients being afflicted by each difficulty more than 1 year posthemorrhage and no significant improvement in these domains being detected between assessments. Alarmingly, the fatigue in the SAH population was, at times, in fact, even higher than in cancer patients undergoing chemotherapy, a group known to experience incapacitating fatigue." Interesting!

Very interesting! Here's a link to a medical journal that carries the report, if anyone wants to show it to a doctor. It might carry more weight than a piece in a newspaper.

Aw Donna, glad Paul brought a smile to your face I'm sorry you're feeling down. I'm just past the 1 year mark, and I feel very lucky to have great support - although having said that, I struggle most days with fatigue, miscommunication, memory etc. When I was a teenager my mother was always saying "think positive Jennifer!" and it used to annoy the hell out of me. But then I started reading lots of self help books and especially I had one set of tapes by Jack Canfield "Self Esteem and Peak Performance" that I listened to over and over, and I think it sunk in eventually. There are lots of positive thoughts in there, and although it's not simply a case of "pulling your socks up" like people think, it DOES get better if you keep at it. I try and look at the good things - such as SAH sufferers have more or less a 50/50 chance of survival. Well, I survived, so that's a start, right? I also tell myself I was spared for a reason. Ok, so I'm a Christian, but it's not necessarily a religious thing, it's just an awareness that I can help my fellow man (and woman!) in this lifetime. So far, I've signed up to start a Different Strokes group in my town, and I'm going to do fundraising for Headway in May. These things serve to remind me that I've got a lot to be thankful for. I am also on Fluoxetine (= Prozac) and I had counselling for a while with the neuropsychologist. I'm sure these things helped. I do hope that with the help of us here on BTG, and maybe a local Headway group or Different Strokes group, you'll start to feel happier and more positive. PM me any time if you want to chat. Take care! ETA: a few years ago the occy health lady at work lent me this book, Being Happy. It really helped!!

LOL!! Well the specialist nurse said that every single patient with SAH that she talks to says "I was working 7 days a week" or "I was in a very stressful job" - and that's not scientific, that's just her observation. ... I certainly worked with a cow of a woman and her sidekick, and it was a very stressful situation that I thought I could cope with. Actually, a little aside: drawing on the fact that I'm "brain damaged" I confronted the woman in question the other day, over at the hospital where she still works (although she's the subject of a disciplinary!): I went to her office, peeked through the door, went "oh you're still here. Are you happy with yourself?" She looked surprised, asked me why, and I said "thanks to you I came this close to dying, to losing everything. This close!!" and walked out closing the door behind me. She looked stunned, as if she had no idea what I was on about, but I felt surprisingly good. LOL!! (I really didn't want to stoop to her level but since the SAH I'm less worried about what people think )

Leonie - see my blog post here, to get an idea of what it is. I just phoned them and they sent me two cards. Lynne is so articulate, as always!! This miscommunication you described happens to me and is really getting on my nerves; my partner, who I love dearly and who I know loves me, has been finding it very hard. I know he knows "intellectually" that I've had a huge life changing event, but he does seem to find it hard when I don't react the way I used to or when I forget stuff.... I feel like he doesn't understand me and he feels like I'm not sympathetic to things he's going through. After 12 years it's like we are on different planets and we were SO in tune before. So, yes, it's tough, but I insist on keeping the channels of communication open, and I cry sometimes, but we seem to be getting there. The thing is, if this is what it's like with my partner of 12 years, then no wonder it's hard communicating with other people! Sorry, I've rambled. What was the thread about again??!

Oh right, this is just wonderful: I had a call from the Tribunal at 2.15 saying "you had a tribunal at 2pm". Whaaaat? I never got a letter!! I think I'd have remembered - even with my damaged brain! Luckily, they said oh, we'll send for you at the next available date then. Typical or what??

Hi and welcome Mary. Yes, I think a WOW is in order! No words of wisdom here, but I hope you find the reassurance I have found on this wonderful forum. Take care

I didn't have high BP, but it was creeping up and I was told to keep an eye on it because it was borderline. HOWEVER, I believe I had spikes of high BP due to the stress of working with certain people, and indeed the day of my SAH I had a meeting with HR about it.... The surgeon told me I had no risk factors for SAH so stress seems to be the only factor. I was taken off my arthritis NSAIDs because they can raise BP, although I haven't had it taken recently. Hmmm that reminds me - I should ask GP next time, eh?

No thank YOU Donna for allowing us to talk about this - reading what everyone has said is brilliant. So many of you have described me to a T! I can't multitask any more either and I was an Executive Assistant for 30 years - multitasking was second nature to me. And that's just the start of it.... Anyway, thank you everyone. Big hugs and KEEP POSITIVE!

OOh Lynne - I love it!! It's gonna be my get-out-of-jail card for the rest of my life, I feel.... ha ha. Nessie - I'm sure Headway would send you one. If they don't, get someone here to get one for you. I was trying to find out if there was one in French for my mum to carry because of her aphasia, but I haven't found one yet. I might translate it and make one for her. I have some little self-laminating cards that are credit card sized....

I've said "I'm brain damaged" in front of someone at the hospital I know - can't remember if it was a nurse or doctor, but they gently corrected me: "I have a brain injury". It sounds better!!

I just blogged about it, with a picture - if you are interested! It's just useful to have on you in case you get flustered, or can't speak or whatever.. See here

Yup - what the others have said!! Lynne has put it very eloquently, and winter is at about the same time in her recovery as me and I feel the same as her. I think Lynne's completely correct: telling people you're "recovering" from an SAH makes them think you're ok, or will be. I don't know if I ever will be. I'm certainly not able to go back to my old job. Some days I do think I'm in denial - I think I'm 100% fine, nothing wrong with me, boy was I lucky to get through THAT ok.... and then I come crashing down. AGAIN. It happens all the time, even though I have had neuro-psych and OT help with pacing. Yesterday I had to see the GP and I was a bit tearful because the boyfriend and I had had a bit of a do the night before. The boyf reckons I've changed, and I reckon I haven't: it sometimes leads to tension, which we've never had in our 12 years together Anyway, I was at the GPs and I started crying, and he said "do you think you might be a bit depressed?". Well, I'm on Prozac, so I would expect not to be, don't you think? He is very supportive but still, he just asked if I was pacing myself. Then I went to get my medicine, and I got so muddled up with the prescriptions that I ended up whipping out my Headway "I'm a survivor of a brain injury card" and the pharmacist was very gentle with me That's the second time I've used it, and it's been great. (I didn't join Headway, but called them and they sent me two cards for free). Anyway, it's brain injury awareness week in the UK from 9th to 15th May and there is an event called Hats for Headway that I want to arrange at my local community centre. You can download a poster about it on that page. Just thought I'd pass it on

...and BREATHE!! The unknown is scary, but lots of us here have had MRIs and can tell you it's totally painless if a little claustrophobic. I'm rather large, so it felt more snug around me than it would for a slimmer person. The first MRI I ever had (years ago - on my back only), I was asked to bring a CD in, which was great. This time I was told I could bring an MP3 player so I had my iPhone all ready, but in the end the machine they used didn't have that function. However, you do have headphones on so they can talk to you from the control room, and you have an alarm in your hand so you can ring if you are scared/want to ask them something etc. This time the machine had a mirror above my eyes and if angled correctly I could see the people in the control room, which was totally reassuring. Like someone else said, you should get an appointment letter with some explanations on it. Also, mine came with a checklist asking if you had any metal in you, tattoos etc. I have a tatt on my foot and they said it "might" feel a little warm during the scan, but it didn't. My niece had an MRi and she has nipple piercings, and the nurse just waved a magnet in front of them and said "you're ok" lol Try not to worry - I know that's easier said than done. Take care

Oh dear, I can SO sympathise!! My partner says I've changed too, and we never used to argue but now we seem to be ad odds all the time I don't reckon I've changed at all but maybe I'm in denial! I do hope you get to hear from the neuropsychologist soon. I know I was told they are few and far between, but I found my sessions with mine very helpful. As for yoga, my mother always wanted me to try it as I was very anxious when I was younger. I have done a bit, and a bit of Pilates, and I imagine, if it's not the strenuous yoga (can't remember the name), it can only be good for you! Good luck

Hi Dermot! Hmmm I can't help because... well, I've done hardly any exercise since the SAH! I assume you mean you have a wait to see the specialist. What does your GP say? I am no doctor, but I've always understood exercise to be beneficial. Maybe they mean "gentle exercise"! Also, is there a physio or personal trainer you can ask for advice? They should have some idea of what kind of stress going to the gym puts on a body? Sorry to not be much help. Ooh another idea is the specialist nurses on the Brain and Spine Foundation forum - they might be able to help. Good luck!

I guess you had a perimesencephalic SAH then Not that I know what that is... will go and Google it later. Mine was an aneurysm on the ascending communicating artery - I think one of the more common places to have an aneurysm and I'm just glad I had fabulous treatment in two NHS hospitals. I have an online friend who had an SAH in the USA and boy did it cost her a lot of money!! Hope you can relax now and take time to heal. Take care!