Kate

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3020907/ Hope this helps someone!! There is very little info out there x

Thank you for the info tiny dancer, my neurologist gave me links to an interesting article to read about RCVS - I can try and find the link if anyone is interested. It is scary how little is known about the causes.

Hiya I've not had any reason given by neuro surgery but they now think it could be reversible cerebral vaso constriction syndrome (RCVS). I don't know any more but apparently it's becoming increasingly recognised as a cause of NASAH. There are some studies online and my symptoms fit the picture. It may give some answers or rule another cause out?! Kate x

hi and thanks for the responses. I haven't seen a neurologist yet but I am pretty sure this syndrome may be the cause of my NASAH and may well have been the cause for many others, it is apparently poorly recognised and the advances in scanning etc are leading to more diagnosis of the syndrome. It's prevalent more in women and one of the complications can be a SAH. There are some recent studies out there that are worth reading - if you google RCVasoconstriction you get lots of links to patient studies but the profile of the syndrome fits exactly with the terrible headaches I had for the 2 weeks in hospital ( I put them down to vasospasms linked to the bleed but now it seems it was probably RCVS). I will hopefully have more answers and info soon but it would be interesting to see if there are any other members who had this who were diagnosed with NASAH and have never found the cause. interestingly the misdiagnosis of migraine in the early stages can aggravate the condition and make the headaches worse, and the bleed can then happen whilst the patient is being treated for severe migraine rather than vasoconstriction. There's some interesting stuff on line but it is still relatively unheard of. May be this will help answer some questions for those who have never found out why they had a SAH or stroke. Love Kate xxx

Hiya I went back to the consultants today and have been referred to the neurologists now as they think that reversible cerebral vasoconstriction syndrome (RCVS) may be what has caused the SAH. Has anyone else experienced this or know more about it? I think it may explain why I was in so much pain when they took me off nimodipine in hospital. Hope everyone is ok out there Kate xx

I've contacted my local headway office in the hope they may be able to help re counselling. I'm still working through the whole job situation but have more or less decided to let it go - I'm in a good job as assistant head and that's probably more than enough for me to handle when I do go back! I spoke to a good friend this morning who helped me get a bit of perspective. Thanks everyone for all your help. If you can recommend any counselling services in the north west I'd be grateful. Love Kate x

Thank you brave ladies, You have come through much worse than me and are an inspiration. I have come through this largely unscathed ( apart from the headaches, fatigue and emotional side of stuff)! I'm going to attempt to seek some advice re work but I'm probably going to have to let this one go - it may be a step to far to go through the whole selection process now, never mind actually do the job! Will see how I am in a week or so. I will check out that book Alison. I've had no advise- like you say Iola it feel s as though we are pushed to the bottom of the heap- I do understand why in some ways- especially in hospital when there were clearly people in a terrible state, it's the aftercare that is dire, if it wasn't for BTG I'd have had no support what so ever. I hope you find something else that you can do Alison, it must have been heartbreaking for you :0( Thank you both for your honesty and encouragement. We will get there won't we? After all, we are survivors! Love Kate x

Thanks Daffodil It helps to know I'm not the only one who has felt like this, BTG is a godsend, really it is. I am a teacher, I was on a secondment as a promotion to deputy head when it happened and that job has now been advertised to start at Easter - it has left me now wondering if I should consider applying or just let it go to someone else and return to my old job once I'm well enough. The whole situation is frustrating as I loved the job and was doing well- however I realise the school would have to consider me a weaker candidate now that I've been so sick. Anyway enough of me!!! Thank you for your support and encouragement x

Thank you, I will try and get to see my GP and tell her. I know it's early days for me but today has been awful. Xx

This thread has really helped me tonight. I have not stopped crying all day, couldn't understand why as I feel like I'm getting better (NASAH 10th Nov) The more I go on, the more I think I may need some counselling but I've never even considered it before and have no idea where to start. I'm concerned about work and my future- I'm 40 years old and feel so weak. Don't know where to start with getting better emotionally, I think I may still be in shock. Love Kate x

Hiya I'm new on here too! SAH on 10th November. No cause identified yet but have another scan on 6th Jan. I hope you are resting lots- I don't know about everyone else but I am struggling to wake up before mid day and I used to be a morning person- I'm very sleepy these days! Take care Kate

Thanks, I saw my GP this week - it was good to sit and talk to her. She reassured me about time to heal/work etc and also help to sort my pain relief ready for when I want to slowly reduce the codeine. I am going to see how I am between now and my consultants appointment before deciding how I tackle work. My job cannot really be done on a reduced stress basis but I may be able to look at my hours etc- will def go for phased return if possible. I still need to chat with HR etc as I've no idea where I stand with these things yet. I hope you soon feel much better Iola and that the dizziness goes soon. I think in the grand scheme of things I have got off quite lightly. Hang in there. Thanks for the advice re GP- I ended up just calling to make an appointment- she had all my notes but there was no planned follow up on their behalf!! You'd think that it would automatically kick in!! Hope you have a lovely Christmas and best wishes for a more healthy 2014!! Kate xx

Thanks Iola, I think I need to sort my pain killers out as they don't seem to be as effective as they were. Lots of people have been praying for me too and it has really encouraged me so much. I know what you mean about feeling like your head is in a vice - the pain has not been as bad as when I had the spasms but it can still be quite debilitating. We had a lovely family time yesterday but today I'm in pain again. I hope it is just because of the bleed settling down and is nothing more sinister- this is the problem when you don't know what caused it in he first place! Have you gone back to work? That is another concern but it's way too early for me to think about just yet. I hope you are having a good weekend. Kate x

Thank you all for your encouragement. I finished my course of nimodipine last week and am so pleased to say that I didn't have any more spasms! I made it out for a couple of hours on Saturday but it felt a bit like I was sitting in a bubble (if that makes sense)? I am up and down at the moment-most days are ok but then sometimes I get pain again and get scared. Got follow up MRI in Jan but have not seen gp or anyone yet- it's now been 4 weeks. I am hoping the pain at the moment is just my body telling me to drink more- going to have to get 3 litres measured out and stick to it! Kx

This site is so encouraging, thank you all for your stories. I had NASAH 3 weeks ago and although I don't think it was as severe as most, it has left me very shaken.

Were the headaches as bad as when you had the initial bleed? The ones I experienced in hospital were 8-9 out of 10 pain and morphine etc didn't touch the pain. It was only putting me back on nimodipine that has helped. I guess I will know by the end of the week!

Thanks Skippy I'm worried because when they took me off nimodipine on day 2-9 in hospital( still unsure why) , I had horrendous headaches. Once I was back on it I have been fine. Let's hope it has done the trick. It is early days for me and I'm still learning to rest, drink lots etc!!

Hello I had a NA SAH 3 weeks ago and am due to come off nimodipine tomorrow. Whilst in hospital, they took me off it on day 3 until 8 and I experienced horrendous headaches during this time. Did anyone else experience this and do you have any advice for coming off this medicine? I am dreading getting the headaches again ( they were as bad as the original pain) once I am off the nimodipine. I am also on the usual pain relief stuff. Thanks, Kate