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Everything posted by Patc

  1. Hey Gillian, Hope you are feeling better, and isn’t it peculiar that we only seem to feel these weird head sensations at night. I wonder if it has to do with being horizontal !???!
  2. Hi Charlie Our brains are so interesting, and so weird. It fascinates me that we pretty much all had the same medical emergency, yet we’re all left with different after effects. Your sensation sounds a lot like mine, except I don’t get a burning sensation. I do however get that feeling in my tummy. I’m not wiped out afterwards, and end up getting out of bed because I feel anxious. A couple Gravol settle the tummy and have bonus effect of making me drowsy. You are right, it is good to know that other people experience the same things we do. Sometimes I wonder if I’m going nuts🤪I just had My 3 year anniversary since my bleed happened and I am so thankful to be able to say that! Good luck in your recovery, you’re still pretty early in your recovery....get the rest you need and take care of yourself!
  3. Hi i knew I would get some answers here. Daffodil you are lucky you get annual scans. I live in Canada, and even though my hospital care was superb, the after care was non existent. I saw my neurologist 2 weeks after discharge, again after 6 mos. and had a CTScan. That was the last of it. I will check to see if, like you I see some improvement after these weird episodes. I do look at the bright side though, I’m here to complain about it😉😂😂. thank you Subzero, for the references, that did help. Hugs everyone Pat
  4. Hello everyone! I’m coming up 3 years post bleed at the end of the month. Other than the usual fatigue, forgetfulness and anxiety - I’m doing pretty good. i’ve made necessary changes in my work life to accommodate my new reality, and I’m good with that! I know we all have different experiences post bleed, but I’m curious if anybody else has had this particular one. Every once in a while, I get this feeling in my head, like there is water pouring over it. There is no pain, just a weird sensation, and it has always happened in the middle of the night. If you are a woman, it almost feels like a hot flush. It only last a few minutes, but then I get the “butterflies” in the tummy and I usually get up for a bit as I’m too anxious to get back to sleep. This isn’t a regular occurrence, in the last 6 mos, it’s happened maybe 3-4 times. My doctor doesn’t seem too concerned about it and I was just wondering if anybody else has had this “feeling”. I decided to keep track of it, just to see how often it happens. Once again, this web site has been a life saver. Happy weekend everyone! Hugs, Pat
  5. Hi, and welcome! This is quite the journey you have embarked on! You are on the right track. I had my « episode » like I like to call it, almost 3 years ago. Still dealing with head fuzziness, memory problems and word retrieval. It can be frustrating at times, but like previously mentioned, these things happen more frequently when I am tired. I am lucky that I don’t have the terrible headaches people talk about. As a matter of fact, I can’t remember having the « thunderclap » headache 🤕 Let us know how you are getting along. Remember this is a community filled with helpful people, ready and willing to listen.. You are not alone!!! Best Wishes, Pat
  6. Welcome Jo-Anne, from another Canadian! I live in the West Coast, Vancouver area. My journey started almost 3 years ago (Oct 28, 2016). Recovery is a long road, be gentle with yourself. I am still feeling the effects of my brain bleed, and just realize that this is my new reality. I am lucky, in that I don’t suffer from the bad headaches that people comment on, but I certainly get « brain fog », difficult time with my short term memory and the ever present fatigue. No use fighting it, when I’m tired, I nap🤪. I needed to modify my career, but you know the saying « when a door closes..... » I’m just thankful to still be able to walk through those doors 😊 You will find some much needed support here, I find myself returning to this web site when I need that bit of confidence and encouragement. Good luck in your recovery, be kind to yourself, and remember to listen to what your body is telling you it needs! Miles of smiles, Pat
  7. 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
  8. 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. Hi Melissa, I had my bleed 2.5 years ago (Oct. 2016). I don’t remember much either, and it truly drives me crazy. I’m slowly learning to let it go, but it is hard🤪. I was in the hospital for one month- 26 of those days in a “quiet” room. No stimuli whatsoever ( no lights, no reading, t.v. and was only allowed to get up to go to the bathroom, after 2 weeks) I also ended up with vasospasms, but had no idea what that was. It wasn’t until I was at home and reflected on what could have happened to me, that the anxiety kicked in full force. That is when, by the grace of God, I stumbled on this site. I found out I wasn’t imagining my symptoms, and I wasn’t alone💕 I’m still having memory lapses, difficulty retrieving words, fatigue and I think that is my reality now.....but I am alive to experience these things. I have had to redefine my career ( preschool teacher/ special needs support worker-36 years) still working with preschoolers, but in a different capacity and less hours. At the end of the day, know that we all “get it”. There is immense support here, because we have all walked in each others’ shoes😉. I am looking for a therapist, to deal with some of this anxiety and I really feel that part of our medical treatment should have a mental health component to it. Sending you big hugs, Pat
  10. Hi Trish i know how you feel. Some days are better than others. I also battle with anxiety and depression ( have for many years, but it’s a little more now). What I find most frustrating is that I don’t remember much of what lead to my bleeds, and how I was feeling at the time. My husband tells me that I was complain8ng of a bad headache, but I don’t remember any of that. A lot of that time has been erased from my memory. I tend to revisit that time in my head, but it’s blank and there goes my anxiety level. I have to learn to let it go.....easier said than done. Lol! I feel truly blessed to come out the other end of this fairly unscathed❤️ We do need to be stingy with our time, and listen to our bodies. If that means afternoon naps, then so be it!!!! Congratulations on your 2 year anniversary, and wishing you all the best. Hugs ♥️ Pat
  11. Congratulations on your one year anniversary!!! I just had my second anniversary on October 26, and I still get overwhelmed with places that are too loud and busy. It is much better than it used to be, that is for sure. It will get better for you too, and slowly but surely your confidence will build up😊. Main thing is to listen to your body, and respond accordingly. Wishing you good good luck with the procedures you are waiting on. Don’t forget to let us know how you are doing. Sending you positive energy. hugs, Pat 🤗
  12. Hi Jojo - Welcome! I am 2 years post SAH, and I’m still trying to piece things together. I wasn’t given much information when I was discharged after being in the hospital for 1 month. I developed vasospasms, and spent the month in a “quiet room” - basically no stimuli at all. Once i I began my recovery at home, I started questioning why? I began doing my own research, but still had many questions unanswered. I’m slowly working through some stuff, and decided to see a therapist. I am no longer under my neurologist’s care, and my GP can only do so much for my anxiety. I listen to my brain, when it lets me know I am tired, then I nap - or take time for myself. I am basically dealing with fatigue and some memory/processing issues. Nothing that anybody else would notice, but I know the difference. I returned to work 5 mos after my bleed, on a reduced schedule. I have since modified my work situation even more. You will find this site to be a god send. We have all “been there” and understand each other’s anxieties, fears, frustrations, but also the gratitude we have for recovering from our bleeds. Life may be altered somewhat, but we are here to enjoy it! Wishing you all the best in your recovery?
  13. Thank you ladies, for your kind words and wishes! ♥️Pat
  14. On this day 2 years ago, I had my “episode “ as I refer to it. Lol! I am feeling great, I am working, albeit in a different capacity and much less hours, but I decided a while ago that I need to do what is right for me! I have had wonderful support from friends and family. Having said all that, I still am not 100% of my old self. I still deal with fatigue, fuzzy head, anxiety and depression. This site has been a god send to me. Let me take this opportunity to say Thank You to all of you. We have all come out the other side of this, and for that I am thankful♥️ Hugs, Pat
  15. Hi Charlie. I know how you feel, and I gather everyone can understand how you feel because we have all been there! The advice you will get here is a soothing balm to your mind ( it did wonders for me). I found that at 5 months out, I still couldn’t work my regular hours ( I am a preschool teacher). What I learned is that it takes a long time for the brain to heal. You will get stronger, but you need to be patient with yourself. Know that it is normal to feel anxious. I tend to feel more anxious close to the anniversary date of my bleed (2 years on the 28th of this month). I had to change my job as I found the classroom too stressful, and that was difficult after 30 years - but I am so much happier now, Different can be good too ? You are still healing, and learning your new normal. I am pretty much back to my old self, but I know that there are times when the fatigue and fuzzy head will creep up on me, and that is fine too. I just rest that day and if I need to nap then I do! I found visiting this community has helped tremendously. I am sure you will discover this too. Good luck in your continued recovery!
  16. Hi, i returned to work 5 months after my bleed, but only 3hrs a day, twice a week. I work as a support worker with preschoolers who have disabilities. The work is physical and exhausting mentally. I remember my first few weeks back, I needed to take many “bathroom breaks” just so I could have a few minutes of peace and quiet. My days off were spent resting and napping. I eventually decided that returning to the classroom was too much, and I now support children one on one, in their home. I am a private contractor therefore control my hours and days of work. I never thought I would need to change work after being in the classroom for 30+ years. My doctor told me, when I asked him when would I be back to my normal self, , “When you are able to do everything you used to do, and not need to spend your days off recovering”. I’m almost 2 years post SAH, and there may be a few days a month where I still need to have a pj day, and nap. You are still early in your recovery, but you will eventually get there. Don’t rush, take care and listen to your body. Good luck with your return to work! Pat
  17. Welcome Simon. I, like you, have had a fairly easy recovery compared to some in this group. I have come to realize that we all have our stories to tell, and none are better than others. My bleed came out of nowhere, as well, and I may never know why. I’m almost 2 years post bleed, and I still struggle with fatigue and some memory/word retrieval problems - especially when I am tired. I have to say though, for me, the worse challenge I faced ( still face) is the anxiety, depression and mental health issues that creep up every so often. Is this “the headache?” Is this feeling normal? You get the idea. This group has been a god send. People here get it. We’ve all been through the same challenges. This is a safe place, where no question is too dumb, or feeling too silly. This place has given me reassurance that I am not going nuts, there are many people feeling the same as I do, or experiencing the same symptoms as I have. You feel validated, and that lifts your spirit up. i trust you will find many suggestions/answers to your questions. Visit often, it will help you have an awesome day! Take care, Pat
  18. Thanks Skippy for that suggestion?. Much appreciated ! On a brighter note, today I worked with a little fellow in his preschool class. I loved being back in the classroom! It was the first time in almost two years that I have been back. When I returned to the classroom 6 mos into my recovery, I wasn’t ready. I had to make a decision as to whether I would continue in the class or leave my career. I decided to leave the class, and become a private Support Worker. Today’s work in the classroom showed me how far I have come in my recovery. I was able to stay in the class for the whole 2.5 hrs, without having to go to the “washroom” for quiet time. Lol!!!! I did need a bit of a rest afterwards, but all in all it was fantastic. Sure miss the classroom environment. Mind you, this is my first time ....I’ll let you know how I feel after a few months! I will only be in the classroom 1x a week, for 2.5 hrs. Perfect!!! Cheers Pat
  19. Wow! I can’t believe you are being treated so unfairly. I’m so sorry you are going through this. Personally speaking, I was in the hospital for one month. I didn’t go back to any kind of work until I was 3 months into recovery and then it was only 2 morning classes a week. I’m a support worker for preschool children in their neighbourhood preschools. I worked 20 hrs a week prior to my bleed, then 5 hrs a week for approx 3 weeks, then 10 hrs for 2 weeks, then back to my regular hours. My work was very supportive, and my doctor basically followed my lead as to how tired I was after my sessions. I can’t imagine having to go through the stress you are while recovering ?. I do hope you are able to find some relief. Keep us updated.
  20. I know exactly what you all mean when you say how frustrating it is when everyone around you say you are fine. They say that there is nothing wrong with your memory, or that they always forget stuff too. “It’s a sign of getting older” is another favourite saying. I know that this is something different, more than just getting older (I’m only 59 for Pete’s sake!!!). Thank you so much for all your suggestions, and your coping strategies. At this time the only medical advice I would receive would be from my GP since I have not been under my neurologist’s care for over a year. I would need another referral, and that may take forever to see him. Furthermore, even though my specialist was quite respected in his field, he had absolutely no people skills. My follow ups would be a total of 5 min max. He would be ushering us out of his office, as I was still trying to ask him questions. I doubt he would be of any help. Not sure if anybody else is this way, but I feel that I’m wanting to know more details now, than I did at the onset of this journey. I haven’t made an appt yet with my doctor, but I think that is where I need to start to see what my options are with regards to some counselling. BTG is an enormous source of support and understanding. Thank you!
  21. Thank you Skippy for this article. I read it, but none of the recommendations have been applied in my case. I am not on any kind of medication ( not even aspirin). I was on aspirin for a little while when I came home, but then my neurologist told me I could stop taking it. My last MRI was year ago, and no follow up was required, other than getting the results from the neurologist. Seems like after care is very different, my doctor reassured me that I am at no greater risk than normal to have this reoccur. He felt that this may have happened because of a congenital issue. I find myself asking more questions now than I did when this first occurred. My hubby is of no help, because he hates talking about it, and never really asked too many questions. I need to make an appointment and get this all figured out because it’s driving me insane lol! I focus on the fact that I feel pretty good, except for the fatigue and short term memory. I just need to know that I’m not blowing things out of proportion. This group has really helped, knowing that I am not the only one feeling this way. Seems like the psychological effects of this happening is the biggest side effect of It all. By the way, happy return to school ? cheers, Pat
  22. Hello everyone, I’m coming up 2 years post brain bleed ( without cause) and after reading some of your posts, I feel pretty lucky that I’m not suffering from the daily headaches a lot of you are. I do get what I call “fuzzy head” and I do have the occasional headaches, but they are quite minor. That is one thing I never really suffered from, even during my one month hospital stay. One thing I would like to ask, is do any of you still have the memory problems? I also have a difficult time retrieving words. This is especially true when I am tired. It drives me crazy. When I mentioned this to my doctor, he just said that since I didn’t have a stroke, there were no brain cells damaged. I say BS - I know I have difficulty with words, and my memory. I also have days were I am absolutely exhausted. I work with children who have autism, and even though I only work part time, there are days where I hit a brick wall. Just curious to know if some of you still have these issues two years out Thanks!
  23. Hi Ian, i am 17 mos out, and never did get an answer or reason why I ended up in the hospital for one month. Specialist was never able to find what caused my brain bleed. I am one of the lucky ones, as I haven’t experienced any lingering headaches, but like you whenever I do get a headache, I tend to go on panic alert. I wish, along with the hospital care for the physical healing, there would be a counseling component. Honestly, I found that my mental state was worse than my physical one. I work in Early Childhood Education, so I was off work for most of the school year. When I did go back, it was very gradual. The fatigue was astounding, but I would be awake at night wondering..... i did have a cerebral angiogram before I was let out of the hospital, and 6 mos later - everything was back to normal. I keep saying I’m ok, and 95% of the time I am, but there still are days when the anxiety strikes. It does get better, but it takes time. This group is a great place to “talk” things out. Good luck in your recovery! YOU GOT THIS.
  24. Thank you everyone for your kind welcome. I look forward to making new friends!!!
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