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Karen

Melissa

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Posted on behalf of Melissa....

 

I had a  bleeding  stroke (Subarachnoid hemorrhagic stroke) on June 28 2017, After 5 days in ICU and 11 more in hospital I came home.

I have a great support family and I really like my doctor however now that its been a little over a year I am starting to get this uneasy feeling and not sure what to do.

I have been researching and in most cases you have to have surgery to repair the bleed or you have a greater chance of it happening again....I did not have surgery and when I ask about the chances of it happening again I was told that it was very rare.

 

Has anyone had this and did not have to have surgery?

 

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Hi Melissa

 

Was it 2016 you had your bleed?

 

I had an EVD for hydrocephalus but did not have coiling or clipping as mine was non-aneurysmal. I am not worried about it happening again. as the doctors say the chances of another bleed are really rare. I often wonder what caused it but will probably never know.

I am grateful that I survived and although my life is very different now at least I am here to share it with my family.

 

Hope you are recovering well.

 

Clare xx

 

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Hi Melissa

 

i also didn't needn't surgery and was provided no reason for having the SAH. :( three years later I still have a fear of it happening again so I understand you completely. If I have a headache that's worse than normal I immediately go to the ER. The only thing I can say is don't let the fear overtake you as it's what I did for the last 3 years and I feel like I'm finally coming though it now :) 

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Melissa, I had a nasah amost five years ago. Like you I didn't require any surgery. I had follow up care for a few months and was then released for normal activities. And like you I was afraid it would happen again. Anyone would be frightened after going through what we have! Well, for me it hasn't happened again and I think it IS rare.

 

Be kind to yourself. Don't push too hard. Drink plenty of water and stay well hydrated. It really does help. See your Dr. if you feel like something isn't right. Feel free to ask questions on here. We can't give medical advice but someone on here has had the same syptom and can tell you their experiences. Take care and let us hear how you are doing. 

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No Stress Melissa easy to say hard to do !! 

 

I had an SAH and it was coiled, then got Ventriculitis and after that Sepsis.  You can call me Lucky as I feel so lucky to be here.

 

A few on here have check ups on their Anni's  and seem to get on okay, but see what Kim has typed xx 

 

I was told by my surgeon "No stress" so I always pass it on.  I get over stress by singing and my poor family go through it.

So think of happier times and smile (also hard to do when worried)  

 

Wishing you well and All the best 

 

Win xxxxxxxxxxx 

 

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I also had a NASAH almost 2 years ago.  Just an EVD, no surgery.  I was told the chances of it happening again were no greater than it happening the first time.  Slowly, my anxiety over it happening again has subsided.  Now I think of it this way, before it happened, I had a weakness that I did not know about waiting to happen.  Now I have survived that and the weakness did it's best and is gone.  So I am now stronger than before.  So I chose not to live in fear.  I am different, but here.  Should it happen again, I will fight it again, but I don't fear it.

 

I hope this helps.  With time comes confidence and peace for you I hope.

 

Chris

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Oh WOW Thank you so much .....it has taken me some time to find these replies and I am so happy that I did.

 

I am coming up on year 2 after my bleed and life is still different and for the most part I'm ok with that.
I am Thankful to be a live and Thankful to be improving as time goes on.

I still have headaches some bad and some not so bad.

 

Since the bleed I have been back to the ER twice scared that I was having another one to find out that it was just a migraine that I could not get under control.

I am truly hoping as time goes on the fear will continue to get less and less. However some nights when my head hurts I am afraid to go to sleep because I'm scared I will not wake up.

 

After reading these post I do feel better because this is the first time anyone had said they had one without surgery too.

So THANK YOU again

 

Melissa

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Hello Melissa, great to hear from you and thanks for sharing your thoughts with us.

 

You certainly are in the company of many members who have experienced a bleed without the medics finding the source of the bleed, and you are not alone in being so fearful of another bleed. Instances are very few on BTG and you are right in saying that over time you will find yourself accepting this and being less fearful.

 

This link will give you immediate access to the NASAH Forum

http://web.behindthegray.net/forum/16-non-aneurysm-sah-or-perimesencephalic-sah/

 

and this link will enable you to find this forum

http://web.behindthegray.net/topic/6062-melissa/?tab=comments#comment-124679

 

Please continue to keep us informed as you recover, and in particular make a comment on the SAH/Stroke Anniversaries form when you reach 2 years.

 

Best wishes

 

 

 

Subs

 

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I am 2 years (June 28,2016 was when my life changed) out now from an non-aneurysm-sah. I am truly Blessed and Thankful for the life I have.

 

With that being said I still have days that I am scared that it is happening again but not as often as in the beginning.

I am back to work and I have adjusted okay with it. I am a staff assistant at a community college and have a great bunch of people that I work with. They have helped me relearn who they are and what I do. :)

 

I wish I could say that life was back to normal but as my Nero doctor says that was the old me and the new me is still healing. 

I have do not have the headaches like I did before and I am not on any meds for them except every now and then when the flare up, I have changed my diet to help get off the meds because I felt like it was hurting my memory and I am already having a problems with the short term memory as it is. So I did away with soda and I am watching my carb and sugar intake this seems to be helping now for 8 weeks.

 

I am having some problem with my joints aching and being really tired all the time. I am 51 but I feel like I am 90. Does anyone else on here feel the same way and what have you done to help. I do good for about 4 days than I crash if I push myself thru a few more days I feel terrible for about a week. 

 

I have spoke with my doctors and they tell me this is something that I can not push thru that I don't need to get stressed and that I need to get plenty of rest still.

 

It has been 2 years and I'm still struggling with the emotional roller coaster too and I keep it to myself a lot more now because everyone "sees" me as I am doing great.

 

Any suggestion and comments would be greatly appreciated.

 

Melissa 

 

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Hi Melissa ,

 

You sound like you are making progress...I see my progress as slow, not measured in days or weeks, only can see it when I look back over months...sometimes I need someone to remind me that I am a bit better now than I was in the fall etc...

 

Like you I had a non aneursym SAH followed with vaso spasm...I did not have surgery...my MD also told me it is highly unlikely to happen again, but with no cause found it did leave me very uncertain...I am finding as time marches on, I am 15 months out, I am able to spend less mental time on it. 

 

Trust me, this doesn't mean I am over it or the fear of it...but...it is getting better.  I sometimes don't think of it for several hours or half a day.  It surprises me as I went to bed everynight thinking of it and woke every morning thinking of it and did throughout the day.It is lighter these days and I am hoping it continues..

 

It is difficult when others see you as doing great...and I bet you are for all you have been through.  This is an invisible thing to some of us...others can't see how we feel or feel how we struggle.  

You are not alone Melissa, I hear you and I am sure many of us here do..

Jean

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Hey Jean

 

I am making progress and I agree sometimes I need to remind myself how far I have came with my recovery.  I am so glad I found this site and all the kind people on here. 

 

I hope you continue to heal and the fear gets less and less for the both of us everyday.

 

Melissa 

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Melissa,

 

So good to see positive post on here, thanks for coming back and letting others know how you are getting on, I think you are doing really well 

Regards

 

WinB143 xxxx alias Win xx

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