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Showing content with the highest reputation since 11/07/19 in all areas

  1. 2 points
    Hi Yun, definately Try the salt water , it will Help I think, I did that like Win after my EVD and then later Shunt surgery, helped with the healing which took ages on the scalp. I also used to give myself (and still do) really gentle head massages with oils around the scar site...didn’t want anyone else to touch my head but happy to manage myself. I used an oil I like the smell of, rose oil, but a plain grape seed one will work just as well. You look like something off the muppets after you do it but to be honest I felt like I was like something off the muppets ( that newsreader eagle maybe? ) I was so out of sorts back then. roll on the years to now and I still have really tender points around my surgery scars and get get odd tingling but sensitivity is far less, oil treatment still what I go for if that happens. Daff
  2. 2 points
    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
  3. 1 point
    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
  4. 1 point
    Mmm warm salt water sounds nice. Yeah I can wash my hair, I am going to try tar shampoo to see it helps with itching. Stupid little thing but so annoying. I can’t really brush my hair properly yet. Good thing I used to have pretty messy hair anyway.
  5. 1 point
    Hi Yun I never had clipping either but had drill holes in head, when I awoke my head felt creepy crawly and itched so I remember me and Daughter pouring warm salt water over my head, most which trickled down back ha ! Sounds daft but wanted to keep scalp clean where I had shunt put in. Don't know if you can wash hair after clipping as like Daffs was coiled. Wishing you all the best and it helped the creepy crawley feeling !! Keep well and hope you get better soon xx
  6. 1 point
    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.
  7. 1 point
    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
  8. 1 point
    Hi and welcome! It’s been 2.5 years since I had my bleed, and though I am doing well, I have had to adjust my life. You will find this group a great help and wonderful place to share your feelings. The hardest aspect of recovery for me has been my mental health. Anxiety and fear seem to lurk in my psyche. Time, friends, family and this community, have been a big part of my recovery. You are still fairly early in your journey to recovery and it is very normal to feel anxious. I honestly think that along with the physical help to recovery we receive, we should be able to receive some counselling for our mental well being. Even after this time has passed, I can still get caught up with the “what if’s”. I wish I would have discovered this group earlier in my recovery, I would have realized that my feelings were also shared by others. Visit here often, and don’t be afraid to share your feelings, especially if you are needing reassurance. Chances are somebody here has experienced what you are struggling with at the time. Take care of yourself, rest is your friend😊 Sending you healing thoughts. Pat💕
  9. 1 point
    Hello Yun, and also a very warm welcome to BTG. Glad you are feeling positive nine months after your bleed, and well done for getting back to full time employment. Always be watchful for early signs of fatigue as you go about your daily work and home life. Listen to your brain and body as stress and over work can hinder your recovery. Don`t be afraid to take that `time out`. The following links may be helpful and to find further threads concerning `itchy scalp` simply key `itchy scalp` into the search option at the top right of the welcome page. https://web.behindthegray.net/topic/5917-strange-feeling-over-my-head-3-months-out/?tab=comments#comment-109687 https://web.behindthegray.net/topic/5917-strange-feeling-over-my-head-3-months-out/?tab=comments#comment-111004 https://web.behindthegray.net/topic/6138-questions-about-head-tingling-and-eye-pain/?tab=comments#comment-113464 https://web.behindthegray.net/topic/3057-after-a-subarachnoid-haemorrhage/?tab=comments#comment-41898 Well done so far and please keep in touch about your progress. Subs
  10. 1 point
    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
  11. 1 point
    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
  12. 1 point
    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
  13. 1 point
    Having a really tough day. I'm over 4 years out from my MAJOR 7cm bleed. Still no job, still lots of mood swings where I feel out of control, my family still complains about how hard this is on them...husband and an 18 and 16 yr olds! what do you do to turn a bad day around? How do we ever explain how very difficult this journey is to family? No one can understand unless they've been thru it, and I don't want my family members to ever go through this! i just need something to make my life seem worthwhile again. I can't work as an EMT anymore, so I'm going to start volunteering at a local hospice. I'm also trying to raise money for a missions trip, but everyone seems to want to tell me what I can and can't do. As far as I'm concerned, I have a second chance and don't want to waste my life living in "what if's?" Thd Sky is the limit as far as I'm concerned...my Sky, my limit! thanks for reading this! Mandie
  14. 1 point
    Hi, I just wanted to briefly say where I am 1 1/2 yrs out. What made me think of it is, I spoke with nurses who have known and worked with me forever and this is what THEY see. Firstly, i am happy and doing great. I am working almost full time.But again, it is best to let Others tell you how you are, because like most men, I am in some denial and want to push forward. Here goes: 1)I am more laid back about life. This has been the best gift of this thing. I fly and visit family, play golf, run, and dont work so hard. My ICU doc told me all young people he sees with this are uptight workaholics and that was me. I was kind of a miserable workaholic before and not now. YEAH!!! Thank you!!! 2)I cannot learn some things. I read a lot and am learning spanish. Why???? Bcz i am trying to prove I can do it. But the other night, i went to a salsa class and just could NOT learn it. 4 steps, could not do 4 steps. I can learn on my own (ie:learning spanish) but if someone verbally shows me, i can not learn it. simple things.Frustrating. 3)this is funny, but i put things in particular places and they MUST be there or I get angry. This is all after the bleed. I had a rentacar the other day. And immediately after getting in, I rearrange everything to where it "lives" in my home car. Things must live in their place!!!I have some fear of losing things. My mind cannot remember where i put it. So i always put it one place only. When parking the car I always park in same spot. Each place i go has one spot. Or else i will never find the car. 4)I am more adhd now. So say my coworkers. "we have to keep you on track" they say. 5)my emotions go up and down. This is a tough one, because I do stupid things and people blame me. I think the emotion center of my brain was damaged. This causes me trouble because noone wants a doctor with emotion issues, right?? 6)I meet people, then remeet them. Funny. 7)I repeat myself a lot. This annoys people. They tell me all the time. "you already told me that". I get that a lot. (just reading this post, i noticed i have repeated the "learning spanish" thing 4 x already, jeeeeesh!) 8)My short term memory is TERRIBLE. What were we talking about??? Just kidding. But seriously, if i am in a restaurant and get up to grab a fork, half way there I have no idea what I went there for. So I say to myself "fork,fork , fork, fork" and then the person near me says "what did you say??" And i say "fork". And they say "why are you saying fork?" It is daily comedy in my life. 9)I have eliminated toxic people from my life. Another gift of this experience. I used to be polite to them out of politeness. No longer. They have been deleted. I also remember , very clearly, who came out of the woodwork to help me through this crazy ordeal, and I remember very clearly who abandoned me and pretty much left me to die. My deficits are comical to me. They show something of how the mind works. I can memorize the past preterite tense of spanish of an irregular verb, BUT cannot remember where the car is! I have strengthened my relationship God thru this ordeal and thank Him every day for my recovery and new life!! I am probably more glad that im not paralyzed then dead. I was very lucky to be alive, not paralyzed, back to work. So you will never hear me complain about my deficits. To me, they are comedy. I thank God every day for my new life!
  15. 1 point
    Thank you Crazy. I will definitely let you guys know when I have my big moment. Could not have survived without this site.
  16. 1 point
    As we all know, this experience isn’t always fun. It can be extremely difficult to wake up one day and everything in your life has been turned upside down. If I had to take one thing from all this: never stop trying. There will be victories. There will be more tears but those wins will be all the more sweeter. So what’s my recent victory? Before all of this PMSAH/CVST stuff I was a ultramarathoner. Loved it. Now the thought of it scares everyone who loves me. But we, the survivors, have to keep moving forward. Have to keep living, for if we don’t, what do we have to live for? So 2 weeks ago I did my first marathon back. Absolute glorious day and although there was no personal record, there was a huge victory over my illness. It felt so good those final metres of the over 42000 I’d plodded out. I’m lucky and I know it. I’ve recovered well but I still struggle at times, physically and mentally. I don’t expect I’ll ever recover completely and there’ll be hard times ahead. I’ll get through them tho, safe in the knowledge that if I stay strong and keep swinging, those little victories will be there. Good luck to us all and may the little wins be the sweetest ones of all!
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