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Hi everyone - I had a perimesencephalic sah May 2017. I was told I would be fine and to get back to my life......

I have been able to return to work and driving etc etc, however, everyday is a struggle.

 

My biggest issues seems to be related to my thinking process but I don’t hear many people talking about having that as a residual symptom of their bleed. This in turn makes me quite nervous because I worry it’s something worse - like maybe they missed an aneurysm, or maybe I’ve had a stroke since my sah that was undetected because I’ve had no follow up.

 

so my question is, does anyone else feel jumbled at times? As if your thoughts are mixed up and you can’t think straight? It’s almost as if my mind goes blank and the words arent there - or my cognitive processing has been interrupted. 

 

Also have just recently started having issues with my equilibrium - like the pavement is moving underneath me when I walk - it comes and goes. 

 

Its hard for me to accept these symptoms are from the sah as the doctors who released me from the hospital told me I was perfectly fine.

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Hi,  I am one year out from my SAH and Vasospasm......even typing this I have to keep checking to see if I am writing in a sensible fashion....

 

.Sort of feel my self going back and forth in my head as to what I need to do next ie butter the toast or turn the egg...seems worse for me when I am in a small space...I did do some things in Rehab that made me aware of this mixed up thing...I still do it but to a lesser degree now...Old familiar things are easiest for me .when I am out of my own space as I said especially in a small space (horrid if someone else is in it with me) . 

 

Never feel like you can't go back or call your doctors for advice...that is what they are there for..I kind of see this as an unseen disability...nobody knows except the person struggling with it...unseen or not it can make for long tiring days..I send you all the best as you continue on your SAH journey..

 

 

Jean

 

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Hi Dbc

i know exactly how you feel,  Welcome to the club. This is almost definitely a symptom of your bleed. I still get those confused feelings now 3 years on. I got stuck talking today , couldn’t think of the word I wanted. 

 

Sometimes I think it should be part of a Neuro doctors training to join this site and see the problems people have post bleed. It seems very common especially in NASAH to be told you’re fine you’ll get back to normal. 

You will get there but it will be a new normal which may not ever be exactly as you were before. 

 

Do bear in mind that you are really early days post bleed. Things hopefully will improve but maybe you should step back a bit. Fatigue and stress will make your cognitive ability weaker. 

 

Drink plenty and take rest time. Did you phase back to work?  

 

Good of luck keep us posted and don’t hesitate to ring the hospital where you were treated if you are worried. 

 

Clare xx

 

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Hey there

 

Nearly 12 years post bleed and there are still days when I struggle to think straight and lose a word between voice and brain - normally when I'm over tired - I work 37 hours a week in a very very busy school office and by the end of the day I'm usually shattered and struggle to connect thought to mouth and end up really quite irritable because of it.

 

I had the feeling of the ground coming towards me in the beginning but found with plenty of water and rest, that it got better.

 

Make sure you listen to your body and rest and get plenty of fluids.

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Almost 3 years now and I still forget words sometimes.  My overall memory is poor (but it was not great before), especially peoples names.  I have started putting names in my phone so I can look and remember them.  I still feel a little removed from reality where yesterday seems dream-like.

 

I also get the equilibrium thing from time to time, but it only lasts a few seconds and is not very often.   So it sounds like what you are experiencing is in line with typical survivor-mode self.  However, if worried, I would always suggest having it checked out.

 

Best wishes for continued healing.

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Hi there it has been 16 years since mine and I still stutter and cannot find words when stressed or tired xxx

 

And the moving thing I feel like my brain is shaking in my head I have been told it's labarythitis, vertigo and ear infection not sure what to believe but I know it is worse today and I feel really really thirsty nothing seems to be quenching it that's what leads me to believe it is more likely dehydration (I never drink alot of water mostly cappacinno caffeine won't help either) xxx

 

Try not to worry and drink plenty of water rest when you need to and see how it goes (but see doctor if it is a new symptom or if it gets worse) xxx

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Agrees with others, for years after I was using words like "Watchamcallit,  and you know thingymebob lol 

 

My hubby used to be so patient with me but I say "Did I tell you this Al?" He goes "only 5 times Win" huh men lol  xx

 

My short term memory is getting better but it takes a while and more.  I can remember all the words to songs much to somes dismay xx Keith lol

 

We will get there eventually but if worried always see Doc xxxx We need calm and no worries ..Good luck 

 

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Buddy, you are still very early!!!! you are in the "wow, it just happened" phase. Relax. Of course there is brain damage, you had a hemmorrhagic stroke! of course there will be brain damage. GOOD NEWS though, after around 4 months, I improved immensely. I still cannot multitask like before, but you know what???? Who cares. I dont WANT to multitask anymore.

 

Life is too short to spend it performing 3 functions at once to please someone else. Just this morning, i cut up some vegetables, spent 30 min cooking, added some eggs. Made some egg burritoes and spent 40 minutes eating them. I did nothing, i mean nothing else. No checking phone, no talking, listening to music. And it was great!!!!!!! before my bleed, i would have done 17 thing in that time period.

 

Mindfulness has helped me a lot. Helped me do one thing at a time. Dont be so hard on yourself. I say, im 45 yrs old. For 45 yrs i have lived on autopilot, multitasking to please others , getting nothing out of it other than a brain bleed!!!!! no more. Accept your limitations and you might enjoy them!!  But if you are really worried about the memory loss, good news. I had similiar problems and they really improved after 4 months. You will likely improve, im sure of it. 

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Well it s good to know that mindfulness is helping you FM,  I think it s like eating sugar and it will give you the same taste no matter what race/ religion/ background/ gender you are. I spent the last weekend away at a retreat away from the phone and it was wonderful. Husband is still there . He s doing a whole nine days and I m proud I haven’t texted him all this time. 

I m doing a full nine day in oct and this time I won’t have my phone when I sit.

 

Unfortunately, I multitask every single day/ all the time/ get interrupted by everyone. We are a very busy group and I have been here too long and don’t even know what to do without this job. I do hide my iPad and carry it on vacations. My job is the opposite of being mindful so I think it helps that I m doing meditation outside work for years. I have sjogren s only and age related pain and gray hair. I think meditation can help with one s health. 

 

I haven’t pay attention to friends and recently and just found out my friend has colon cancer stage 4. That scared me a lot. that someone who looks after themselves can get really sick and that things are not permanent. May be I m having mid life crisis but I m just thankful to be alive. Good luck to you. 

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The symptoms you describe are some of my classic ‘early warning’ signs That I need to slow things up, pace myself more and rest up. I push through at my own cost and rarely would I ignore them now but I know I did often early on and still do on occasion, No one can tell you what’s right for you, you have to find your owns signs of what’s too taxing for the brain in it so healing right now but ask yourself honestly how you feel.

 

Have  you tried to pick up at the pace you were pre bleed? now ask yourself is that realistic and sustainable right now and if the answer is no then slow it all down and drop stuff. Sometimes just slowing it all down and practising the  art of paying attention to any given moment, that task, that person can be the best gift you can give yourself when healing from a brain bleed.

 

I did mindfulness pre bleed and have continued it since and it’s allowed me I think to get to acceptance of where I am and my limits but had also taught me that actually I do better when I just pay attention to one thing at a time. Regulars to the site know that I am a big fan of becoming excellent at uni tasking. Multi tasking is a misnomer and more research is showing its actually a less efficient way to get things done.

 

 Mindfulness helps do just that, it’s  not about tuning out but tuning in to where you are, or how you feel or what’s around you and can help slow down the racing brain. So in summary how you feel is not unusual post a bleed be it aneurysmal or non aneurysmal based on probably 95% of the experiences shared here. The docs will say you are ‘fixed’ because you lived but your brain still has to heal from effects of having blood where it had no place to be. Think of sand getting in the engine....

 

 

 

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  • 3 months later...

Hi DBC

 

its been 15 weeks since my SAH I thought I was doing well went back to work at 8 weeks  doing 3 days, still no driving but walking most days.

 

Lately I’ve been having similar symptoms the floating when walking, lost for words sometimes, and fighting this confusing/ stressed/ unsure feeling quite often. Today I wanted to turn my vacuum cleaner off but tried turning the kitchen tap off instead ( laughed at myself).

 

Im also find my patience isn’t what it use to be and I don’t think I am as good at my job as I use to be some days I’m really struggling, I work in childcare toddler room, which I’ve always been passionate about. 

 

Im so glad to hear others are having similar issues 

thanks for your post 

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Hi All,

 

As others will tell you it is such a slow process when getting better, and they discharge us and all we have is each other to talk to about it.  This is when BTG comes in, a trouble shared is a trouble halved.  

 

We see all of us have been or going through the same and it helps so much to have a name on screen say "I had that"  and they are laughing now or happy.  We all get our Down days but  a girl didn't like me saying keep smiling, but I believe thinking happy thoughts and good times  with a smattering of some happy songs helps us get through this.  So we will get there but we need patience and a smile even a moody one when getting better will do xxx Now face the world all us Survivors xxxx  Don't forget your water  lol xxxxx

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