Diane b - NASAH

[Dianeb]

Hi there,

 

I am also so glad to have found this forum!  

 

I am a 55-year old fit female with no health conditions and great blood pressure, and had a NASAH on 9/26/19.   I was driving over the Bay Bridge in San Francisco (literally going through the toll booth) when I had the thunderclap headache and terrible stiffness in my neck and some numbness in my hands.  

 

I managed to call emergency services and an ambulance met me on the other side of the bridge and took me to the ER, where they put me on the CT and told me I was bleeding in my brain.  

 

As others, my CT scan, MRI and angiogram showed no aneurysm--I was in the hospital for 8 days on the Nimodopine regimen and an angiogram at 8 day mark was clear and I was sent home with 2 weeks off work, which was not enough time (I suspect I would have been put off longer if I lived in the EU).  

 

I am a public agency attorney and my work load is quite heavy, so going back into the stress of that environment so quickly with 10 hour days was difficult.

 

In addition, I have a lot of stress at home as I have a son on the autism spectrum with mental health issues, and a daughter with a mood disorder.  

 

Since the NASAH, if I try to drink any alcohol socially I feel awful and the headaches intensify.  I feel like I need 10 hours of sleep a night to feel good.  I feel lucky to be alive and have the same anxiety expressed by others here that I will have a re-bleed, although I was also told that the chance of that is slim to none.  

 

Not knowing the source of the bleed or why it happened is difficult for me, as I feel like there must be an answer.  I do wonder if inflammation in the body and brain can be a factor in causing vessels to leak.  

 

The neurologists at the hospital said stress was not a factor, but the nurses said otherwise--the hospital where I stayed is in Silicon Valley and the nurses said they were seeing an uptick in NASAH in younger people who had large amounts of stress.  

 

Anyway, so glad to have found this forum and to be able to connect with others who have had a NASAH.  

[Swishy]

Hi Diane,

So glad you found this forum.  I have said this before but I just felt like I fell into their arms.  So much support from people who understand what i am talking about. 

 

I had my event 2 years ago, first my SAH then Vasospasm, two different hospital stays 8 days in ICU with an additional 3 days then 2 weeks of rehab as my core strength was gone. 

 

I like you feel lucky to be alive...we are survivors but we still need to understand and digest what has happened to us.  

There is much written on this site from survivors that are way more eloquent than I (haha) but I did want to welcome you to BTG.  

 

I am from the USA also, couldn't find a support group that related to me as this one does.

Jean

[ClareM]

Hi Diane welcome to BTG  glad you found us. Out of interest when did you have your bleed? 

 

As Jean says we are all survivors and coming to terms with what has happened to us is one of the hardest things to accept. The changes this forces on your life can be difficult to process and adapt to but you will with time. 

 

My bleed was 4 years ago and I still daily have to think about the changes it has forced on me. Work has never been the same it’s different now. Not worse but different and not what I ever imagined I would be doing.  

 

However many changes I have been through I feel that each one was meant to be and all of them were post the bleed. I too was in a very stressful job and do wonder if that played a part. I know I can’t deal with stress now and avoid it if I can. 

 

Take it slowly and don’t rush into working too many long hours. You’ll get there! 

 

Clare xx

[Dianeb]

Hi Swishy, 

 

Thanks for your reply.  I had my bleed on 9/26/18, so almost 10 months ago. Like you, I don’t feel like I can deal with stress anymore, at least not at the level I was managing (or managing poorly) before the bleed, and my energy level is not the same and the headaches are daily.

 

I didn’t have other deficits, so outwardly I think I look “normal” so family, friends and colleagues think I’m the same as before the bleed.

 

I have 3 kids who are dependent on me (I’m remarried and my husband cannot support all of us) and live in the costly SF Bay Area.  I need to keep building retirement funds, so leaving my work isn’t an option for me.  I tell myself to do what I can each day and try to make eating a nutrient-rich diet and sleep a priority.

 

It sounds like you were able to dial back from a stressful job and that’s great.  I hope you continue to avoid stress!  Thanks for your support.  

 

Best, 

Diane

[Swishy]

Hi Diane,

I know exactly what you are talking about, friends and family thinking I am the same as before the bleed. I share this with you. 

 

My husband does get it but I think he is the only one and it has taken him time.  Perhaps part of this happening is that they really want us to be the same. 

 

I am trying to understand their perspective, I am hoping all of us get it at some point.

Invisible disabilities....It is difficult...I feel like I am walking on a boat all the time, I cringe when people walk too close to me or too quickly past me, many changes. 

 

We are still the same people, just struggling trying to find a new normal.  Time does help.

 

Sleep and knowing when to rest is so important and we have to be the guide for our loved ones.  We have to say it, I need a break or let me sit for a while, not always easy.  

 

I am trying to work as long as I can, like you building retirement, hoping not to run out of money, everything is so expensive.  You like me live in an expensive area.I did cut some hours and don't go in extra any more.  I work at a hospital and I am sure they don't like it but I will have my doctor back me if I need to.

 

I am fortunate to have all of my children launched, I am older than you 66 now, ugh don't know how that happened haha...

 

One day at a time Diane, we have to be gentle with ourselves, no option.  Brains heal slowly, I send you my very best wishes to you and your family as you navigate your path. 

xxJean

[Patc]

Hi Diane,

I’m 2.5 years post bleed, and I still deal with the fatigue.  You are right, it is difficult, at times, for others to understand that our lives have changed.  We need to make accommodations for our new reality.  It takes a very long time for our brain to heal, and honestly it heals but in that healing, we change.  

 

I was in the hospital for one month ( 29 days). I had a couple small bleeds, but also had vasospasms.  I was home for another 4 months before I was able to return to work, and then I was on a reduced schedule.  I am an Early Childhood Educator, in the field for 35 years.  I now work 14-16 hours a week, and it is perfect.  There are some days ( though less now) where I feel like I’ve hit a brick wall and need to nap.  That’s OK, I am stronger than I was a year ago, I feel lucky to be here.  

 

This is is a wonderful place to ask questions, vent, realize you are not going crazy, that there are other people who feel the same as you do!  Keep popping in, and learn from all of us.  Take care, and be kind to yourself!

 

Smiles and hugs,

Pat

[Louise]

Hi there

 

warm welcome I had the full blown SAH, but know that non is just as hard to recover from, understand ect.

 

keep hydrated as much as you can, it helps, pace yourself as much as you can...

 

I think we all wonder why??? I don't know I've never known I've just learned to live with it...

 

take care

[Winb143]

Hi Diane,

 

We have a green room on here just type message and peoples answer you.  I found this site via my Daughter after having an SAH and I feel so lucky to be alive.!!! Poor family went through it. 

 

Keep typing as a problem shared is one halved and what helped me was knowing I wasn't alone in this...I was a bit whacky when I woke up as I sing a lot and it keeps me happy..Someone could be typing about how ill they had been and I'd break into song.  I blame the SAH lol.  People were a help on here and to know you are not alone in this helps us.

 

Good luck on recovery and keep a spare smile at hand for those down days  xxx

 

All the Best xxxxx and get your Mojo back xxxx

[Chris G]

Welcome,

 

I am so sorry this happened to you.  Alcohol still affects me differently than before the NASAH and I am almost at the 4 year mark.  I just learned to go easy on it.  It mostly just makes me forget things, repeat myself, etc.  I send you best wishes for a recovery.

 

Chris