Members that have had a non-aneurysm SAH?

[Komani]

Hi

I joined yesterday and was using the other thread!!!

I had my Non SAH on Monday 19th April 2010 at 4.40pm....remember it well!!!

Still experiencing headaches and exhausion. I've already had some contact from other members who have answered some of my questions and given me some great advice....alot more than the Doc's!!

I look forward to communicating with others as I slowly plod along the road to recovery!!

Nick

[Komani]

Hi All

Before my SAH I was a keen runner and cyclist. I've gone from running and cycling miles and miles to nothing!!!

Has anyone got any advise or experience of when it was ok to return to some form of exercise??

I have a 10K race in Sep but have my doubts I'll be anywhere near fit enough!

Thanks

Nick

[sallym25]

Hi Nick,

I think, as long as you feel up to it, and want to try it, you should go ahead. Just remember not to push yourself and if you feel like stopping sooner than you hoped to , stop.

I joined my local gym and went 4 times a week for a couple of months. It never did me any harm and I always was the type to pack it in when I got fed up.

Good luck if you decide to give it a go.

Sally. x

[tracy]

Hi im a NASAH

Im fairly new had mine on 29th June 2010.

Been left in limbo now not knowing what i can and cant do.

Very strange feelings in my head like floating.

Has anybody developed epilepsy since its really worrying me.

[Diduck]

Hi All

it is now 4 months since my last post about my SAH on 11th February 2010 and I am feeling so much better

People always want you to qualify how well you feel.... " are you 100% yet" "are you back to normal"

I would say I am probably better now than I was before

My attitude is now much more positive as I realise what are the inportant things in life

It used to be very important for me to always be right about things so I could be quite argumentative - not now!! I have had to spend the first 3-4 months relying on other people to help me, drive me, make decisions for me, reassure me that now I have finally realised other people can actually know better than me!!What a realisation after 53 years but hell it has made things so much easier as I don't have to be responsible for everything now I can trust others

I have been getting physically stronger all the time and I think the 6 month post SAH was a milestone for me as I chose to take the walk to work that I was doing when I had the haemorrage. I think doing this and finally trusting my body again was a turning point and I have improved steadily since then.

I still get more tired than before when concentrating hard on complex things at work and i still have difficulty multitasking but i just accept this as a new way of life and accept my body's limitations....... no more beating myself up for not meeting my own exacting standards. But as I accept this for myself I have also learnt to accept it with others so I have a tolerance that was sadly missing prior to my "incident"

There are still things I don't like such as coffee or Vimto, and I now drink more pop and eat cakes and icecream!! Think I have reverted to a child...lol

In all seriousness though I do believe our bodies look after us and I think the SAH caused my brain to switch to "safe mode" much like a computer with a virus.

I lost all the taste and sophistication of 50 years experience and became a small child emotionally again. I looked for reassurance all the time from my peers and elders and found I was just as happy with a cup of milk and biscuits as opposed to the restaurant meal and a bottle of red wine. I would cry and throw things if I couldnt explain things easily and I felt stupid a lot of the time.

However, I am now feeling great and "almost 100%" incase you need figures to qualify recovery/acceptance. I just wanted all you newbees especially to know that it does get better and although you may have dark times when you feel you will never be your old self just trust that the new self can be just as good if not better.

I appreciate I have been extremely lucky not having any long term physical side effects and a lot of you have maybe not be as lucky as me but in the scheme of things we are all very very lucky if we are here reading this forum.

Thanks again to everyone here and i hope my story helps just one person feel more optomistic

All the best

Di

xxx

[Janet]

Hi Di

Its really good to hear that you are doing so well and accepting the new you. I think that is one of our greatest hurdles post SAH

[tracy]

Hi Di

thanks for that, I am still at that stage only 8weeks ago since my episode. Im at that flustrated stage where i want to do what i did before but its taking longer or i just cant do it as it tires me. Although I know what you mean about seeing life differently, I was just drifting along hit 40 nothing much going on. But now I feel like I need to concor the world (or I would if it didnt tire me).

Sorry for any speling problems

Tracy

[Karen]

Hi Di,

It's always lovely to hear how people have progressed and moved forward and it sounds as though you're doing really well!

Wishing you all the very best in your continued recovery and hope that you will keep in touch. xx

[TYoung]

Hello All:

My name is Tracey and I too was unexpectedly stricken with a Non-Aneurysm SAH on July 24, 2010. Like many of you, I'm not really sure why I suffered from this disease since I don't and didn't fit the "at risk" list (aside from being female and in the age range).

My fiancé and I were on our way to meet friends and go to a concert when a fire alarm in our hotel room went off. We both grabbed our room key cards and headed for the stairs to exit the building. Once I opened the door to the stairwell, the alarm blared very loudly in my right ear. Once outside (in the horrid heat and humidity), I suffered from the thunderclap headache many of you have described. Needless to say, I didn't make it to the concert that evening, but instead vomited all night.

According to my fiancé and mother, confusion hit me pretty quickly (the next morning). They both thought I was suffering from a migraine headache and dehydration...

Since we were 6.5 hours away from home, my fiancé thought he would try and get me home to my doctor. But since my confusion was only getting worse, he along with my family thought it best to stop at the nearest hospital (which at this point in our drive home was about 2 hours away). Once there, a CT Scan was performed and I was diagnosed as having a "brain bleed". The hospital where we stopped, was not equipped to handle my case so after a long 4 hour wait in their emergency room, I was transported via ambulance to another hospital 30 minutes away.

Now mind you, "I" don't recall any of the above (aside from the fire alarm). I've been told numerous stories of this horrid adventure. Anyway, I was hospitalized for 11 days, during of which a drain was placed in my brain since the fluid wouldn't absorb on its own. I have to say, I am completely and utterly amazed that I did not suffer brain damage or any motor skill problems. Although, it is my understanding my short term memory was majorly affected for all 11 days I was hospitalized (I reminded everyone of the movie "Ground Hog Day").

Today, a little over a month since the event, my memory is intact (both short and long), motor skills are fine. At this point, I only suffer from very minor headaches (daily), a little fatigue and insomnia. All of which my doctor states will subside in time (fingers crossed).

I am so very happy to have found this forum. Although there is information about SAH, it's difficult to find info about NA-SAH. To have read many of your stories and to know the feelings I've been through and am going through is "normal" so to speak, is a huge relief.

Again, thanks for sharing!

Tracey

[Louise]

Hi Tracy

Warm welcome to the site.

Have to say I dont see it as having a disease....

your lucky tho that your short/long term memory are intact it will take time but you'll get there......

take care

[Karen]

Hi Tracey and welcome!

Sounds as though you're doing really well, considering how early into recovery you are!

We have a few non aneurysm members on here and to be honest, the recovery problems are pretty much the same.

Hope that you find the site helpful!

Good luck and wishing you well......xx

[Skippy]

Hi Tracey

Welcome to the site and to the family. Glad you found us too. You'll find lots of support on here, as Karen says, the cause may have been different but the after effects are pretty much the same.

Look forward to chatting more.

[TYoung]

Thanks for the warm welcome! I do appreciate it.

You are right Louise... I recall reading SAH referred to as a disease and thought it odd myself. Thanks for the correction.

Again, thanks to each of you and the best of health to you as well!

Tracey

[maggie]

Hi Tracy and welcome. You sound so well adjusted to what has happened & seem to be recovering remarkably. Well done for having a good attitude to what is a shocking event to say the least.

I am always stuck as to what to call what I have had and how I feel etc, we need labels for everything don't we:roll: I sort of call my recovery an illness which I will get through....

Anyway keep doing well and keep us posted. Best wishes xxx

[TYoung]

Hi Maggie:

I think my adjustment has everything to do with my thinking and believing at this point, that perhaps I have a purpose here on this earth (still trying to figure it out though (LOL)). Based on everything I've read and all that happened to me, I feel very lucky and blessed. I know my recovery could be far worse than it is, and for that I'm thankful. Certainly the daily headaches and insomnia are an utter pain, but again, I think to myself, "Tracey, you're lucky and if this is the least of your problems, buck up!" Does that make sense?

How are you? Are you doing well?

[maggie]

Hi Tracy,I am really good at the moment,thanks for asking!

I am 18 months post SAH and doing well. I push my limits occasionally and suffer for it and I have a constant battle with fatigue which is a common theme with or without a burst anni:frown:.The head aches get better with time don't rush too far ahead take it easy.Good luck and let us know when you find your purpose in life:-D xxx

[kempse]

Hi Tracey,

A warm welcome to you - three cheers for the world-wide web!

It is only very recent since you were struck by this awful thing, but it sounds like you are doing really well and I hope that continues. I suppose a non aneurysm sah leaves a lot of unanswered questions but like others have said the after effects must be just the same.

I wish you well in your recovery and hope that it hasn't delayed any future wedding plans:smile5:

Sarah

[Estella]

MYname is JO i had my Ischemic stroke Febuary13 2008.

ITwas a ischemic stroke where i lost my memerory but im working on it im having to learn to spell all over again my math is tearble . But im getting better as i go . I was paralysis in my hands for a week an my legs were paralysis where i could not walk on my own . I got serisus . when i got home on getting my legs strong again so i could learn to walk again an i did it all by my self when i came home from the hospitial an rebhab . I was using a four prong walker when i came home could not do eny thing on my own . But now im walking on my own with out my quid cain walking on my own just like i was before the stroke . And i can dress my self to and put my shoes on to an tie my shoes up . i can do every thing by my self now . i go alittle slower than i was but THANKS to GOD i have a second chances in my life . Thank to my husband for helping me .

[kempse]

Hello Jo,

A warm welcome to you - it's appears you have made excellent progress with everything since your stroke. It must have been hard for you along the way, but you have done really well to get where you are today - well done.

Sarah

[maggie]

Hi Jo,welcome to the site.Glad you are making such good progress sounds like you are a very determined and positive girl:-D

It must be hard at times to keep in good spirit, but you seeem to have a strength within you from which to draw and that helps alot. Good luck for tfuture recovery.

[Stuart]

Hello,

My name is Stuart and this is a great site I have just found.

I suffered with a Non-Aneurysm SAH on 14th August, 2010. I had a headache come out of nowhere, it felt like a metal clamp being tightened on my head and was straight after sex. It was certainly the worst headache I've ever had but nowhere near as bad as some of what I've read on here !

All I wanted to do was lie down but I didn't have any other symptoms. I went to sleep for the night and the headache was much better the next day but still quite bad all the same. I'd never suffered from headaches before so thought it was odd.

On Monday the headache was much reduced so I went to work but I still didn't feel right. I felt a bit spaced out had slight vertigo and it felt like my scalp was a bit tight. I saw my doctor on the Tuesday because a bit of googling had shown up possibility of SAH (which I'd never heard of before). He played it safe (bless him) and contacted Worthing hospital with the same concern although all the tests he did were ok.

I was at work the next day when my Dr phoned and said that the hospital wanted me in straight away, so off I went. They were expecting me so I went straight to the Acute Medical Unit. They did basic tests and then I had a CT scan that evening which was apparantly clear. I then had a lumber puncture at about 1am and was re-awoken at about 5ish to say that the results of that were abnormal.

Later on I was told that Hurstwood Park (my most local Neurological Centre) were clearing a bed for me and I would be blue lighted up there, which I was later in the day.

On arrival I was surrounded by Dr's. I remember one of them saying that in 25% of these cases that they see there is no explanation for a bleed.

Anyway 1 x CTA scan, 2 x Angiograms and 2 x MRI scans later it was confirmed that I have a DAVF (Dural Arterio Venous Fistula) spotted on the first angiogram, investigated further on the 2nd and not an Aneurism. This is relatively good news apparantly as the fistula vein is in the dural membrane on the outside of the brain and is an AVF not an AVM. Hat's off to Hurstwood Park for being so painstaking.

My type of fistula can't be left alone due to the risk of future major problems, so will need surgery to be clipped. Embolization unfortunately isn't possible due to where it is and the high blood flow through it.

I'm going in for a pre-op appointment next Monday when I will find out more about when the op will be.

I'm on my second week back at work (working from home as I'm in IT) and I feel 99%. I do get slight headaches if I overdo the computer and get a bit more tired than before.

Although I'm dreading the operation I also can't wait to get it over with and start recovering. I am also counting myself extremely lucky that my SAH appears to have been minor and has not massively affected me although I was really tired for the first month or so after.

It would have been so easy not to have followed up this headache and be unaware right now.

I am trying to work out what the recovery from the Op will be like and what to expect given I'm relatively ok now.

That turned into a bit of a long post, but my be useful to someone one day !

All the best

Stu

[kempse]

Hi Stuart,

Welcome to BTG.

Well it was fortunate you pursued that headache! I wish you all the best on Monday and yes, brain surgery is daunting, but I think all of us on here are glad of their expertise and are better for being on the other side of it.

I think you will find this website very helpful and friendly so try and let us know how you get on.

Sarah

[Janet]

Hi Stu

Must be quite worrying for you with the upcoming operation but it is good to hear that you have managed to get back to work so quickly. I had a crainiotomy but had the added complication of the bleed as well to deal with at the same time.

I would expect that as with any type of brain surgery you will again feel very tired afterwards. Recovery is a very individual thing the important thing is to listen to your body and rest as much as possible. Wishing you all the best for the upcoming operation and please let us know how you're doing.

[Stuart]

Thanks for your well wishes. I will definitely keep you all updated with what's going on and how I'm doing.

[Karen]

Hi Stu,

Sounds as though the hospital were very thorough with their investigations! Good luck with the op and even though none of us wants to go through one, it will hopefully give you some peace of mind for the future.

Wishing you well and let us know how you get on. xx