Swishy

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 Tracy, Welcome to BTG, so happy you found this site. I also had a SAH and also was very afraid of it happening again. My doctors assured me it was unlikely but It took me time to feel safe again..Time seemed to be my key, the brain is slow to heal. I found this to be unlike any other illness I had, it insisted upon being given time. With time and learning to be patient with myself I began to see things get better... The head hurting...well there is a lot written on this site about head aches and pain. I encourage you to look through what others share. I personally never really had post SAH "headaches" but did have a thunderclap headache when it all began but...I do have some head pains which were worrisome to me but after 4 years I try to not give them too much attention... Tired, yes yes yes...but again time made it get better...I would walk in and out of the kitchen making a meal to sit and rest....I have gotten so much better... As Jess wrote time, relaxing when you need to and yes the water does help.. xx Jean

Thanks everyone for the continued support...This site has been so positive for me. I feel I can come and learn and vent and learn some more haha... xx Jean

Ann I think the zoo thing is a dream also...We have a pair of zoos near me one is about 20 minutes away, Franklin Park and the one I am going to be at is Stoneham which is in my home town of Stoneham...It is the smaller of the two but still a lot going on so I am excited...They are sister zoos and have both been open for about 100 years...I am going to be an ambassador, haha sounds important but it is just learning about a particular animal and chatting with zoo visitors about that animal...Right up my ally, I love to chat

Hi All, This is the week 4 years ago that my life took a bit of a turn. SAH with no explanation...followed a few days later by vasospasm which was worse. Intensive care rehab and thankfully home. Today I am still bothered with what I call my feeling of being Swishy (feels like I walk on a boat).have not fully regained my core strength..but I tolerate it ok...feelings of being mixed up a bit pops up now and again but again I can deal. I think I have gotten use to the feel of my body. I am of course aware of how I felt before for 64 years but I will say this and I say it loud...I am so very very thankful for surviving this and realizing that being patient with myself has been the key to how I feel today. I realized at year 1 that I had for sure improved but truth year 2 was remarkable. I really could see clearly that I had to measure this journey in months not days. It was a very helpful discovery for me. I also went for mental health therapy for a bit and found it to be very helpful as well. Today, I am excited that I am awaiting the birth of a grandson and my son just got engaged, so we are planning a wedding...Since my event my husband and I have enjoyed traveling and enjoying our friends and family. I recently signed up to be a zoo volunteer and am trying to learn Spanish. I am trying to make everyday count. So friends I wish you all well and I ask you to give yourself patience and time, the human body is an amazing thing... 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.