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Spontaneous SAH July 20th 2014


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First-time post-er here! I'm Becky...I had a spontaneous SAH a few weeks ago... Angiogram - no surgery. I don't know anyone else this has happened to...and before this happened, I don't  think I heard a 'brain haemorrhage story' that had a good outcome. So I'm so glad I've found you....

In brief, I'm a single mum of 3 glorious young people, working part-time (I returned to work this week... too soon?)....getting daily fatigue and have gone nuts at my kids a few times...not enjoying noise, noticeably poorer concentration and have bumped into walls that I KNOW are there....My head does not feel remotely like it used to..I'm constantly aware of it..odd sensations....Would appreciate news...tips....advice...encouragement! Can you help me?

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Hello

 

I had this happen just over 1 month ago. Terrifying experience. Wow back at work?? I was in critical care for 5 days then went home got sick from the meds and 5 CT scans. Back in another hospital for 4 days. Finally stabilized. I just had my 1 month check at the hospital with my neursurgeon. I have a great CT scan. She said I am a pristine patient. Amazed and wonderful. I did what they said. No activity for a month. Ice packs and lots of rest but I have no children and am 62 years young.

 

I am a go getter. Always projects, doing everything, working out and really really healthy. Do you have high blood pressure? That was my problem I quit my meds...ugh sooooo stupid...

 

My head feels like a bubble. No headaches thank god. But dizzy and light headed and vision blurry a bit. She said this will go away.

I get real tired and know now to just stop and lay down with ice. This seems to be the best advice from everyone.

 

At night I have a hard time sleeping on the pillow. I wake up then get a ice pack then go back to sleep. Noise drives me crazy and people talking. I only can have 1 at a time. They said it is due to hypertension and a weakness but dont know for sure.

I did not need surgery and no aneurism.

 

Talk away as it is very recent for both of us

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Hi Becky,

My Surgeon said "No Stress" so I drive my family potty by singing and before I get out of bed I try and think of a happy time like the time my Mum made me laugh when I was young (good memory I have) !!

You will make it, up and down days we have but more up days as time goes on.

 

Be Well

 

WinB143 xxxx

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Hi Becky,

 

I too had a spontaneous SAH.  Mine was about 2 years ago (September 21, 2012).  I felt the same way as you did.  People just don't survive things like this.  I also didn't need surgery, just an angiogram, and they couldn't figure out how it happened. There were no damaged blood vessels or anything to "fix". I just had to let the blood be absorbed and hope the damage it caused to the brain tissue wasn't permanent.

 

I can tell you that it was hard to return to work and a normal life.  Everyone I knew just looked at me and said "you're fine".  And trust me, it takes a very long time to return to what is "normal".  Take it day by day.  Some days will be good and some days will be bad.  I returned to work on a part time basis after about 4 weeks.  and full time after about 3 months.  It was tough and some days I think I was losing my mind.  My concentration was gone.  I seemed like I was in a fog all the time.  Some days I felt like my hands moved in slow motion.  And I was tired ALL THE TIME!  It does get better though, but like others have said, it takes some time. 

 

This place was the best for me.  Everyone here is very supportive.  Ask all the questions you  need! 

 

Best of luck!

 

Christine

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Hi Becky,

Well done, you've survived and that's one heck of a good start! Most of us seem to suffer some level of fatigue, forgetfulness, a dislike for noise and numerous people at once etc, but you will adapt over time.  Just don't expect to do everything as you once did because it might not happen.  You will find other ways of coping with those situations and that, in itself, you will find satisfying.

Good luck, and if you want a rant, or support, or advice etc we are always here!

Macca

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Hi Becky,

 

My bleed was non-aneurysmal as well.  No surgery but three angiograms.  You are back at work very soon and do not be surprised if you just shut down for a few days.  Mine is over a year now and I still get headaches and dizzy.  I work but I do suffer from fatigue.  Does not keep me from doing what I want but I always know something is off kilter. 

 

Be kind to yourself and give your brain a rest.  Remember, this is not a broken arm this is your motor that functions everything and needs time to be babied.

 

You did have a bleed, regardless of how it happened, and your brain needs time to heal.

 

iola

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Hi becky, the common theme in response will be this is really early days for you and don't try and push through it like we often do with other things, you know the soldier on and it'll be ok attitude, just saying that it doesn't work so well for the brain stuff.

If the kids are old enough explain to them that you need some regular time outs and literally out yourself on the headache step as I call it! I take myself off and lie down and have silence and stillness and then aft a while I can rejoin the game. No nothing is at the pace it was and I am not the mum or person I was but my kids and family accept that and I finally think that at two and a half years out I have accepted it too.

So pleased you are doing ok, feel happy that you survived, we are the lucky ones, celebrate that luck and joy , drink lots of water and be kind to yourself every day.

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  • 3 months later...

You will notice all the odd sensations for a bit, then some will go and some will become regular feeling that don't alarm you anymore.  Everyone experiences different things, but many of the same symptoms as well.  It is so helpful here to just share a symptom and wait...it usually is the case that someone else is/has experienced that exact same thing.  You then can say, Yea, I'm not crazy, even though everyone else thinks I am and doesn't understand that whatever it is really bothers me.

 

I definitely had strange feelings in my head at first.  Floaty, tingly etc.  Noises were hard as well.  TV was no longer relaxing, but soft music was.  People talking to me was hard to process.  I had a lot of emotional happenings as well.  They'd come out of no where.  The thing that got me so worked up one day would be no problem the next, but something else would set me off.  Recognizing that this wasn't my usual behavior didn't help to change it, only time did.  Give yourself time and let the healing evolve.

 

Take Care,

~Kris

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Sometimes it felt, to me, like someone was pouring water slowly over my brain. Other times my head felt detached. I remember I was eating a Peep shaped like a rabbit (marshmallow candy covered in sugar because after my SAH I craved sugar like a BEAST). I took the head off to eat it and looked at it, laid the head down about half inch above the body and took a picture and posted it on Facebook to share that it was what I felt like. I found that sometimes things like that, images, helped others understand.

 

For awhile, a long while in fact, I couldn't stand to be touched. Even my clothes bothered me. My husband could touch me if I initiated a hug, but if someone came and hugged me the surprise touch would literally burn. It was a form of parasthesia (strange sensations felt on the skin) that was no fun at all. I had to communicate to everyone not to touch me. I felt bad because, of course, everyone was glad to see me and wanted to hug me and had in the hospital. In the hospital it didn't bother me! I was on a lot of painkillers in there, though. 

 

I'd cry out of the blue, but was told that was very very common in traumatic brain injury. I found that odd since I (I insisted) did not have a TBI. I also had these strange tremors and spasms. I thought it was the meds. I couldn't talk without seizing up. It was so strange. Fortunately that lasted only about a week or so. I didn't want anyone to see me during that time because I was in so much pain. It felt like I was having charley horses throughout my entire body. 

 

All of this, Ms. Denial assumed, was due to medication. I fell a lot when I got out because I was clumsy...went through physical therapy for about a year. It's all gone now, just the headaches and the imbalance! I always was a dizzy blonde, though. ;)

 

It does get better, though. I promise!

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