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Non Aneurysm SAH


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Jod-Dee and Liz D

Thanks for your replies. I know that I'm not ready to go back yet. It was a nice day on Sunday and we went to the local park for a family stroll and when I got back I was absolutely shattered! So a return to work (Deputy Head teacher in Primary School) is not on the cards just yet; my normal working week pre-SAH could be anything up to 60 hours a week + with all my marking and paperwork that needs to be completed at home - but there's always the holidays to look forward to! I think I'd struggle to do 60 minutes at the moment!!! Everyone at work have been very supportive and are all encouraging me to stay off until I feel better as they don't want me to suffer a setback in my recovery by returning too early.

Vix

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  • 2 weeks later...
Guest Blossomuk

Hi all

I too am NASAH and this time last year i was in hospital, I was treated very well, felt really safe nurses were fantastic, neoroligist was great, explained everything.. 2 CT scans 2 MRI & angiogramm later I was told grade 2 bleed non anyurism.. Its been so hard physical & emotional, 38yrs old & fit as lop & a great life.. then BANG the bubble bursts (well it was my brain that did lol ) I had little support from family & had to cut ties with a few members & the friends I thought were friends are long gone (no tears shed there) so a year on here I am still overcoming the hurdles of life after the SAH.

I returned to work 8months after SAH & 5months in only do 16hrs and thats enough, still get realy tired.. I have good days/weeks/months.. and I'm still learning to take notice when my brain has had enough (still fnd it hard to give in). I have to look after myself bein a single mum & no real support.. but the ones that did stick around have been fantastic, & my girls well I'm so very proud of them! they have been my angels all the way through this awful experiance.

like every one else witth NASAH.. I too did feel a bit of a fake as i have no scar to show people, but now I dont care,.. Im me , I know what happened to me & the ones that matter to me in my life dont mind if I have an off day , or i forget to do things, or my words get muddled.. I'm ME ! a bit damaged but who isnt in this world..hehe :o)

Its been tough.. the anxiety is still with me..I guess it will always be there, but I'm still here.. lucky to see in another day...Take it easy people.. keep smiling.. love & light to you all

Jac x

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Hi Jac,

I've just read your post as well as your first one. I think you have done amazingly well. Getting through the first year I reckon is the toughest and you have got there, so well done you. You should feel very proud that you have managed to get where you are – it must be especially tough being a single mum, but three cheers for your daughters! Hopefully over the next few months you will be able to look back and see how much further you have progressed and hopefully the anxiety will ease a bit more. Anyway I think you have done great, so keep smiling and give yourself a well earned pat on the back!

Take Care,

Sarah

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  • 3 weeks later...

Hi to everyone,

I found this great webpages, when desperately seeking for information about the SAH without the aneurysm or without any other detectable reason. These pages have been a huge support for me, beside the great support from my beloved ones.

I had my NASAH ( nonaneurysmal sah) jus two weeks ago on Saturday evening 07.02.2010. Only thing I had was a terrible , sudden headache and a bit sore neck.

They couldnt find any reason for my SAH, not in CT, angioCT neither MRI. I was not operated and I stayed 6 days in hospital resting in bed , without need for any medication. Dr. prescribed me 1 month out of my work-studies, I should return back 08.03.2010.

I am 42 yrs old woman with healthy lifehabits ( at least I thought so) and happy, loving relationships . Previously healthy, regardless mild subclinical hypothyreoidism. Yes, admitting to have somekind of stress from the work/studies due to the few reasons: beacause of my own nature, who wants to do everything always so 101%( instead of 90%) and cant give up easily. But to be honest also, because unsatisfaction about the quality and the quidance of the specialising studies .

It has really been a life stopping scary experience. I cant say how thankful Im to be alive. I would like to hear from you who have experienced the same, how have you copy with this schoking experience? Has anyone of you get a new SAH afterwards ? Have you been previously healthy and perharps under a demanding tasks and stress?

When have you been able to comeback to the normal life: doing sports and the other things which make youre hearbeat faster ?

Its -15 degrees and lots of snow up here in North. I wish everyone of you nice sunny, winterdays ,where ever you are. Nice to know, that im not alone.

Best wishes

Aakki

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  • 3 months later...

Hi All

thought I would just keep you all up to date

It is now 3 and a half months since my SAH and I am doing very well

I have been back at work for 5 weeks on a phased return with my hours increasing each week from 3.5 to 7 hours per day last week. I find being at work for a full day is OK but it is the type of work I do that sometimes takes its toll.

I work in a finance dept so have to action complicated balancing calculations and I now find these quite a strain on the old brain whereas before it was no problem.

I have found I have needed a sleep when I get home from work if my day has involved complex problems so it is not the length of time worked but the complexity that strains my brain.

I am sure there are others of you here who feel the same

But the whole process of being back at work has really helped me though my colleagues do wonder sometimes at my emotional momements when I cry for seemingly no reason. It is usually when I have thought about what could have happened or how lucky I am to have goodfriends or such stuff

I have seen my consultant last week following my MRA and he confirms nothing has been found. When I say nothing I mean nothing relating to the SAH - no reasons why I had it and no reason to suspect I will ever have another.

He did find a cyst at the back of my brain though but says there is nothing to worry about as I have probably had this for years and it will not cause me any problems.

Anyone else got a cyst or knows anything about them????

I am off on holiday on Sunday to go to France to be a Maid of Honour at my friends wedding next saturday. This has been what I have been aiming for throughout my recovery and I am glad I feel fit and strong to do the celebration justice.

Thankfully it is at her fathers home in France so I can always go for a lie down should it be necessary

Anyway I just wanted to thank you all again for your advice and warming words

all the best

Di

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hi Di

Its good to hear that you are doing so wel at work and really good news from your Consultant. Sorry can't help at all re the cyst but if your Nuero dosn't think it poses any problems hopefully you can try to forget about easier said than done though. Have a lovely time in France at the wedding hope the day is a lovely celebration for all.

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Hello old and new friends. My NaSAH was in 2005. My only lingering issues are some problems with short term memory and some fatigue issues. I'm not quite the powerhouse I was, but I have acclimated very well. I was in the hospital for a week, then sick for 7 weeks at home. I was back to my work gradually starting four months after the sah. At my one year point I remember feeling disappointed that I wasn't 100% as the docs had said I would be!!! At any rate, I too feel very fortunate and life goes on. I am happy and productive and certainly more aware of how fragile life is. It all changed me in some very good ways as well. One big change I made was to sell the horse I owned at the time, as he was very powerful and required a lot of work. I have since leased quieter horses and only ride twice a week. I have to write down every appointment or anything I want to remember (AND remember to look at my notes!). I put my appointments on my husband's calendar too, so he helps to remind me. I shy a little bit from public speaking or interview type situations since I'm afraid I'll go blank as I sometimes do momentarily. But many times it all goes just fine. I had regular "crash" days when I needed to just lie on the couch, but those became less and less frequent. However, they do still occur, and I never deny myself a nap if I can help it. I am told that the healing can go on for eight years (!), and sleep is the best healing for a brain. Love to you all! Annie

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Hello Annie, it's great to catch up with you and to hear your progress!.... :-D

I still have short term memory problems, but cope pretty well now and think that it takes time to adapt to life post SAH and finding coping mechanisms or strategies that help with day to day life.

Like you, I still get "blank" moments and have crash days .... thankfully, they're not quite so often now, but I now know that I will get through it and time has certainly been the greatest healer.

Glad to hear that you're still riding .... I know how much you loved your horses.

Love to you too .... xx

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  • 2 weeks later...

Thanks, girls for the good wishes. Karen I am so glad to hear that you are doing so well. I know you had a tough time with eyes and dizziness. Well, for that matter, all of you had a tough time!!! Thank God you are all still chugging along. Ember... I was told that my non A was a defect in a vein that had probably been weak all of my life. So the likelihood of this happening again is very low. Actually, one of my hardest issues is that my hubby still wants to baby me five years later. He is my hero and it is wonderful that he watches out for me, but it can be a little smothering at times. Tina and Louise... xoxo back! So happy to see all of your new pictures.

Annie

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  • 1 month later...

Hi Everyone

I'm new to this site but after 3 months since my Non Aneurysm SAH I've found myself looking on the Internet for other sufferers and found you Guys!

I've not heard from my Consultant although I do have an appointment at the end of the month which I wasn't expecting. I had been told that I would get a letter once all the results were back (MRI etc)!!

The only information I've had was as a result of myself looking on the internet and GP when ever I've returned for a "sicknote!"

How long before the headaches and exhaustion start to disappear????

How long before I can return to work???

Any clues from anyone and I would be really gratful!

Good to make contact with you all.

Nick;-)

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Hey Nick

Welcome to the site and to the family.

Recovery varies from person to person I'm afraid. It was at least a year before the tiredness disappeared for me and the headaches probably about 6 months. Make sure that you're drinking plenty of water as it'll keep you hydrated and help with the headaches.

I found that cutting out the the sweeteners Aspartame and Asculfame (any ending in AME) helped with getting the headaches a great deal.

Rest when you can too - take each day at a time and don't push yourself too soon.

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Hi Sami

Thanks for the reply and advice.

It's so good to know that there are other people I can speak to. All I've needed in the past 3 months was for someone to tell me it will take this long or this helps and now I've found a source for that information!!

No doubt I'll have other issues in the days and weeks ahead so be prepered!!!!

Nick

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:redface:Hi Nick ,warm welcome extended.Three months is early days, keep plodding on and drink plenty of water, get plenty of rest no matter how frustrating it gets & hold onto the fact that it will get better.Like Sammi I felt less tired once i'd hit the 12 months,( head aches 6 months) one thing I did learn is that I only made it worse for myself if I fought it and tried to push myself. So listen to your body. Good luck and looking forward to hearing more.Maggiex

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Hello again

Has anyone got any advice re exercise??

I used to run and cycle miles before my SAH but I'm doing nothing now.

What is the best form of exercise to start with???

I'm due to run a 10K race in Sep but have my doubts!!!!

Nick

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  • 2 weeks later...

Hi Nick,

I am approaching 10 months post SAH, and have been feeling better slowly. It can be a frustrating, roller coaster process, but it does get better. I went back to work too early and definitely suffered for a while. Storms still bring on headaches, I have good days and bad. But, I ultimately feel more normal.

As for exercise, I am currently training for a 115 mile charity ride here in Vermont. I am also a runner, and I started back at about three months. That being said, I do not ride or run anaerobically if I can help it. My SAH happened during a running interval workout, so racing hard is not in the cards for a while. If you feel good, run, just take it easy. As you feel better, you can go faster (a bit.) Enjoy the run for the ability to run, a ride for the ability to still ride. Times are less important right now.

Hope you are well.

Best,

Noah

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  • 4 weeks later...

Oh god so glad I found you guys. Im going through hell with weird feelings in my head not sleeping great, just sort of spaced out.

Its been 2 months since my SAH no cause found. I spent only 8 days in hospital John Radcliffe in Oxford. But now I have just been left, not sure what I can do or shouldnt do. Still seem to have a pulsing pressure when i bend down and a whooshing sound like liquid when I try to sleep.

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  • 2 months later...
Oh god so glad I found you guys. Im going through hell with weird feelings in my head not sleeping great, just sort of spaced out.

Its been 2 months since my SAH no cause found. I spent only 8 days in hospital John Radcliffe in Oxford. But now I have just been left, not sure what I can do or shouldnt do. Still seem to have a pulsing pressure when i bend down and a whooshing sound like liquid when I try to sleep.

Tracy,

2 months isn't really very long for something as disruptive as an SAH. You just have to realize that you have been through a life-changing event and most of the weird symptoms like that WILL go away over time. It might take a year or two for some things to settle down, I had that whooshing when I'd try to fall asleep too and it lasted for several years. It did stop at SOME point because i don't have it anymore. Some symptoms (hopefully the few and very very minor) may never go away. It's been 6.5 years since my 'SAH from no cause' and i still have some residual symptoms (which i don't expect to ever go away, i've just adapted my life to THAT now; it's just part of who i am now).

If you think something is wrong or are concerned, see your GP, Neuro, etc. But

it's pretty much the norm that there WILL be weird sounds and experiences, i've just had to resolve myself to that. This was an insanely major traumatic assault on the body (and the the psyche) whether they actually found a cause for it or not you still DID have a brain hemorrhage and get blood in the CSF. So all the meningeal linings got irritated.

When my SAH happened, it became clear to me, that it was a whole new day, not of my choosing, but then again my brain also could have bled out into the CSF, so if all i have to put up with now is that i get easily fatigued, am intolerant of heat, EXTREMELY intolerant of bright light, often wake up feeling like i've been hit in the back of the head with a baseball bat, etc. then i have nothing to complain about. Even if i can no longer figure out what 1+1= , so be it. Like i said, i could have had a massive bleed, so i'll keep on working on improved methods for positioning so as to try and not wake up with a headache, i keep dark glasses with me all the time, i avoid heat like the plague, etc. It's OK.

2 months really isn't long at all for something that did such a number on your brain. I went back to work 10 weeks after my SAH and i couldn't do much of anything. i would get so dizzy and weak just from walking to the end of the hall. But i found that if i would sit down, close my eyes, as if to take a little nap, i would feel OK in just 4-5 minutes of resting like that! Try to be patient with your body, and listen to your reactions to things, and if in doubt rest. You've earned it. Give yourself permission to take however long it needs to replace those injured CNS tissues with new healthy tissues.

And just try to relax and give it time. This is a BAD bad bad experience we go through with these, and i found lots of PTSD-type reactions to it that would come up in me: fear that it would happen again (especially in light that it already happened once for no reason right? but not REALLY though, there WAS a cause of course, everything happens for a reason. It just wasn't due to aneurysm, AVM, trauma, etc.). It was explained to me that one possible reason for such SAHs is that there may have been a congenital weakness in a blood vessel, and that weak spot eventually grew out enough so that it burst. Then it healed. But in that case, such a weakness is no longer there to ever recur.

All the best,

Pat

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Pat

thank you so much for your words.... they really touched me.

I am 9 months since my non aneurysmal SAH and I really needed to hear all the things you said

I am still getting fatigue and poor sleep patterns but I feel a fraud and tell myself I should just get on with it and stop lingering on the trauma. But you made me realise i should allow my self the "luxury" of still having problems after what is really quite a short time

It is very difficult to justify to myself that i have been seriously ill when there was no explanation so I always feel like a "moaner" when I complain of tiredness.

Think I am just overly emotional at the moment and think the approaching Christmas and family etc makes me overthink things and keep reliving the near miss.

Apart from tiredness I am also like you in that I wear my shades a lot now as i don't like bright lights - think this is more PTSD were the light takes me back to the time i was in pain rather than actually causing pain.

I think if I was to tell someone at work I was still feeling this way 9 months on from my SAH they would just roll there eyes in a " get on with it" kind of way so I tend not to share my feelings with anyone. This makes it harder as keeping all these feelings and worries and concerns in makes the emotion build up and i have a volcanic eruption of tears every so often - usually in private.

I have tried not to even share this with my husband who has been through enough with the original shock and he just needs to see me improving all the time.

It is such a confusing and upsetting life event and without people like yourself sharing words of wisdom that can touch us it would be a very very lonely time

All the best

di

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