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Everything posted by Swishy

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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.
  6. Thinking of Win today...I felt like I could almost hear her singing...What she wrote often made me smile...miss her.. xx Jean
  7. 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
  8. 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
  9. 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
  10. 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
  11. Hi Rosie, My doctors told me to live my life... I laughed in my head when it was said ....I am coming up on 4 years...I don't think about it as much especially this last year and truth I didn't ever think I could stop being worried about it. Time seemed to lessen it for me. I agree with Tina about this year making things harder. It can be hard to understand all the things that contribute to how we feel. I did some counseling about a year ago and I did find it helpful I am glad I went. I hope my words are helpful in some way to you...We are all here for you. xx jean
  12. Had the Moderna , no effects after first shot but head ache and body aches after the second dose...lasted through the night into the nest day and around 4pm it started to fade and by eve I was feeling better...I am so happy to have gotten the shots I didn't even mind it.....My husband had same shots and only sore arm, different for everyone I guess..
  13. Hi Pascal, Welcome ... I am coming up on 4 years from my event. My morning brain and my evening brain are very different now. I have been learning Spanish during the pandemic and it has made me aware of the differences. I make so many more mistakes when I start to get that brain fatigue feeling. ..So I try to do it more in the morning...I keep thinking to myself if I have opportunity to use the Spanish if anyone talks to me at night hahaha...let's say I will be missing a lot I have found the recovery to be slow but I will say each year I feel improvement. I also feel changed but the old me is still here and has become very friendly with the new me. You sound like you are doing a good job moving forward...so happy you found us. xx Jean
  14. 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
  15. Hi Kathy, Congrats on your 3 year SAH anniversary. I am coming up on four years in a couple of months. We are doing it Sounds like your life is full with loved ones. 4th grandchild, congrats, I have only 1 but have a 2nd on the way yea... Sorry reading about your husbands fall, that is a long recovery, hope it all goes well for him You say you find humor and joy admidst it all...well that is what life is all about... I send you all the best wishes for many more years xx Jean
  16. Hi Keyo, I hear you...I was shaken too, it takes time to take it all in. I had some sad but struggled more with reliving the experience. I did do some mental health therapy, I learned to relax, sounds crazy right haha...but yes I needed to Breathe and also do some visualization, which I now find very relaxing. So Keyo, what I guess I am trying to say is that we all have our own path to find our way back. Our brains follow I think, but time is key. Sending you well wishes as you continue to heal. xx Jean
  17. Hi Debbie, I am so happy you found this site, it has proven to be a wonderful resource for all of us. A lot of people have written wonderful, hopeful stories about their journeys. I also was able to read things from people who had a very similar experience to me, this was so helpful to me. As much as we all want to get back to our selves, the brain takes time to heal. Be extra specially kind and gentle to yourself. xx Jean
  18. Glad I read this...just actually landed 2 appointments for me and hubby for March 4th and 5th....Happy reading that it seems to be impacting us in a similiar fashion as everyone else...of course...realizing everyone is different...I think i was so worried about not being able to get a spot I didn't think of anything else...I had 3 friends work on it for us...not easy..
  19. Wonderful news for you Sallios, very happy for you. Yes indeed just go on with your life and enjoy
  20. Claire congratulations on 6 years and also congratulations on finding what I see as vital to getting on with life...being able to see that it is different, not better...not bad ..hope your run was amazing and hope you hopped over that spot that your headache began....Wishing you all the best and thank you for your wise words... xx Jean
  21. 17 years SM...well done getting on with and enjoying your life...and being such a great source for all of us here on BTG... As for FB, nah over rated....surviving a brain injury, now that is an accomplishment xx Jean
  22. Daffodil, that is wonderful you are a trainer of mindfulness.. I think the most wonderful thing about it, is it gives me (or anyone) the ability to quiet and calm ourselves...my younger son is a mental health therapist and he is taking additional training to offer this to his clients, as he sees it as very helpful...
  23. Hi Gam, I have some buzzing in my left ear. Hearing was impaired at first but that came back...buzzing is tolerable for me, I am thankful...I am on board with Daff's words about mindfulness and breathing...I was not, haha, really not at all but did seek out a therapist who practiced with me and now I realize there is help within myself...I just sit quiet, no TV, and breath slow taking myself to something calming, enjoyable what your special place or thing is... I realize this is not everyone's thing..My daughter likes to color, seems like a big no to me but she loves it, says it is quieting...So I guess what I am trying to add is that Daff has some great suggestions ... Daffodil, your words sound so calming like my therapist, glad I read this thread and Gam I hope you try singing as well....:) xx Jean
  24. Hi Saleh, We are here for you.... xx Jean
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