Swishy

Hi Colleen,

I really understand what you say...Tylenol just doesn't do much at all...I just flew to see our son a nearly 6 hour flight and I was almost out of my mind with back pain...My neck is also a problem with a pinched nerve that causes pain down my arm and some numbness in my hand...I was so miserable for 24 hours after getting to our sons house I could do nothing...I dreaded the flight home it wasn't direct and was not good but better.

I would so love to take Ibuprofen but I was advised not to by my neuro.  I had a bleed that they could not determine a cause for.  No aneurysm sac was seen...

So sorry your hand is still numb...10 hour surgery is such a long time...I do hope you are feeling better.

I am thinking of a shot in my neck for the pinched nerve, my back is still a mystery I have sensory loss down my leg, some days I get down about it and feel like no point in trying to get help...but I persist, hoping to make the most of each day...

Again thank you Colleen, your post made my day, having someone who understands...this is why this site is so wonderful.

xx

jean

Hi Claire,

I thank you so much for your advice.  I will for sure be in touch with my Dr. as I am literally miserable sometimes...

I am on vacation at my son's house in Nevada and trying to put on a good face but yesterday was horrible, today a bit better, took some Tylenol but I am off the Prendisone and feeling a big bad difference.

I guess it always comes down to benefits vs risks...I had a horrible flight here,  I know I have to do something.

xx

Jean

Hi Jess,

Such helpful information to me thank you...It helps me in my own head to realize why this may be helpful as the doctor, who I did like very much, didn't explain that to me. I feel like I always leave the doctors office with a bit of fuzz in my head haha....

I am doing my best to live my best life...

xx

Jean

Thanks Jess, I think it is a problem without solution, sad to say.  For all the things out there dealing with inflammation is a tricky thing, especially for anyone with history of bleeding.  I keep searching hoping to find an answer but...

I am sorry you also have pain.  the prednisone is only a very short term solution, I think more of a confirmation that my pain is from  an inflammatory process...

So ice is good still, I do get a lot of relief from it.. Prednisone will be tapered off in a couple of days.

xx

Jean

Hello,

I am 4 years post SAH and vasospasm.  Right now I am working to become more comfortable from chronic back and neck pain.  I have just learned it is causing nerve pain which up until now I have been blaming on my SAH.  I think I blame everything on it truthfully. It is also causing numbness down my leg. It seems to be chronic inflammation, did not suspect this.

So I have been seeing a Neuro who has diagnosed me with a pinched nerve in my neck, part of the problem but also has started me on a short course of Prendisone.  Well the Prendisone has made quite a difference.  I realize it is not a long term answer as it will cause a lot of side effects.  Up until now since my SAH I have only used Tylenol, which I think is not very effective, and lots and lots of ice to quiet my back and neck. I almost never bother with Tylenol.

Any thoughts, or info on post SAH safe meds, vitamins anything that helps with chronic inflammation.  

thanks for any suggestions or thoughts I will continue with my Neuro but I fear I might be dead ended and the pain will return with the end of the prendisone...

Jean

Hi Sarah,

I am so happy you found us.  As Super said this is not like a broken limb.  Our brains heal slowly and it is difficult to wait.  I felt like I could see the difference looking backwards better once I realized that I could see I was making progress....having a little one I am sure makes life so much more exhausting for you, rest every moment you can when your body calls out for it. 

Good you have family, for help.  

It took me months to find this site and it has been such a helpful and kind place for me to come.  

Take care.

xx

Jean

Hi Michelle,

Congrats on 7 years...long time

Your post is wonderfully heartfelt...You have had quite a year ... I love what you wrote about the day you spent with friends on your anniversary... 

I have missed seeing you post often as I find what you write welcomed and insightful...but we all need to step back now and then:)

I wish you a wonderful year ahead ...

xx

Jean

I never saw scans of my head.  I had a SAH no sack was seen.  I also had a very bad vasospasm a few days later which was worse than the original bleed. I thought for many weeks I had had two strokes, I had no idea what a vasospasm was. 
 

I don't remember much from the vasospasm event, in ICU for a week.  I was at a very big medical center in Boston, they searched for a cause and said they could not find one. 

I had no risk factors, except, perhaps a family member. 

Literally months after my event I remembered  my mom having complaints of a sudden tremendous pain in her head.  She said she felt like someone hit her in the back of her head.  She complained for some time after but never did see a doctor.  She often said she wondered if she had a stroke later on but never investigated it.

So maybe I was at risk from that but I can't say as I am an only child and both of my parents are deceased.  This event had happened perhaps 20 years before.  My mom lived to be 85.

I read every bit of my records from the hospital, it was helpful to me as I don't remember much.  No answers though.  I am 4 years out and have basically come to terms with the whole event to some degree. 

I do understand you wanting to know.  

Thinking of Win today...I felt like I could almost hear her singing...What she wrote often made me smile...miss her..

xx

Jean

Hi Ilse,

Another welcome, and so happy you found us...Love your humor, enjoyed reading what you wrote...You seem to already have what took me so much time to find...a positive attitude, That is wonderful.  Your chumbawanba reference made me laugh out loud   

xx

Jean

Hi,   Congratulation on your one year since your event....I am half way through my third,  the first is big...I have found it to keep getting better....feeling more like myself...My best wishes to you..

Daffodil...love your STOP....I went to a therapist who worked with me on stopping and breathing and also visualizing...it was and continues to be so useful to me...helps me feel grounded...

Jean

Dear Sarah,

My deepest sympathy on your loss...Your mom was a source of smiles and comfort to so many here on this site.  I could imagine her singing, and it would make me smile...I am so very sad to read this news...Although we have never met, I live in the USA....somehow some way we connected, she made my burden a little less...

I hope as you read all these words above about her you can find a tiny bit of comfort in knowing she was so loved.   I wish you and your family peace at this difficult time, not being able to be with her must be so difficult...

Hugs to you and yours Sarah.

xx Jean

Julian, I had a similar experience at a baby shower I was at last week...not from the noise ... seemed to be with all the motion (people walking back and forth) and when I began helping to clean up (also walking back and forth)...I was very overwhelmed and feeling mixed up (an old feeling I thought I had left behind)...but I sat and regained my sense of stillness...

I think ear plugs are a good thing to have in my bag...I guess we keep on learning how our new brain works...Sounds like you are making great progress Julian...babies to hug...so wonderful, mine are all grown, I miss it..

Win you always make me smile, would love to hear you sing

Jean

After my SAH followed by Vasospasm I did have a psycological exam in rehab.  Truth I said what I thought he wanted to hear pretty much thinking I didn't want to say anything that would extend my rehab stay.  I can say I didn't even really think about my emotional state for months after my event I kept saying I just want my life back.

I reached back to the hospital and rehab I had been in with no help.  They said their support groups were for people right after their stroke or for people not like me, but people who had more severe physical issues.  So I continued searching until I came across this group.  Now I live in the Boston area USA.  I was treated at one of the best neuro hospitals in the USA....

I am pretty sure I have some PTSD...I am fearful of being out of reach of the hospital that treated me.  I have done it, taken a couple of trips but I worry quite a bit about it and have dreams about it...I thought after the first trip it would lessen...it did not...

I think I could have benefited from a support group if one existed...I am struggling along, making progress but always feeling, I will never be quite the same.  

I am from the US...I was told my state Massachusetts, (don't know what the rules are for other states) is a self reporting state...I was also told that if you were in an accident and your medical history was accessed it could be problematic.  My Neuro told me personally that because I did not have a seizure and did not become unconscious I was good to drive.  I was very concerned about it, wanting to do the right thing.