Patc

Exactly, Tecumseh....it’s the “activating” that I find the hardest! I didn’t realize this was associated with my bleed. I’m 4.5 yrs out, and mostly recovered. Like some here, fatigue is always lurking around a corner waiting to pull me back. Luckily I’m not too bothered with headaches, but I get “fuzzy head” What I noticed since my bleed is my lack of motivation. I push through, but some days it’s so hard! I wonder why there is such a lack of research in this area. This community has been a life saver! ~Pat~

Hi Pascal! Welcome! I don’t exaggerate when I say that this group has been a Godsend to me- especially the first year of my brain bleed. I’m coming up 5 years, and someone in this group wrote something that has always stayed with me. Let me share it, and I hope it will be as encouraging to you as it was to me. We tend to compare ourselves to what we were like prior to our bleed. The reality is our brain has gone through a change, and the comparison should really be between what we were like right after our bleed and what we are like now. I’m not like I was before my bleed, and many of the things you describe I still feel, but I’m nowhere as bad as I was 4 years ago! When I look at how far I’ve improved from early days post bleed, then I am encouraged and feel blessed. The weird feeling you describe in your head, I experienced that too at the beginning of my recovery. I would get this sensation like water was being poured from the top of my head. I would get a swishing sound in my head, and feel lightheaded. I would definitely get that sensation when i was overtired. 4.5 years later, i can’t remember the last time i felt like that. You are early in your road to recovery- listen to your body, get the rest you need without feeling guilty! It takes time and patience. We get it, we’ve all fought this battle. Take care, Pat

WoW Weedrea! Once this crazy world is back on its feet, you should make the trip out here. It is a beautiful province💜

Hi Deborah Happy New Year! Can’t say I’ll be sad to see 2020 gone. Like you, I also had a small bleed, actually 2 small bleeds and no aneurysm. I didn’t pass out, don’t remember having the thunderclap headache but I did have vasospasms afterwards. I live in BC Canada, and my stay in the hospital was 28 days. The meds I was on for 21 days was to stop any seizures from happening. During 25 of those days I was in a « quiet room ». Absolutely no stimuli. i wasn’t allowed to get out of bed for the first two weeks ( that was pleasant!). My experience sounds worse than it was. During my hospital stay, I didn’t have any discomfort, just mild headache. I was lucky. My struggle came once I got home and realized the severity of what had happened, then the anxiety kicked in. Deborah, the panic is real and I can venture to say that we have all experienced it. I’m 4 years out, and my anxiety can run wild, especially if I’m overtired. I am more sensitive to noise and lights and I do tire more quickly than I used to. I’m a preschool teacher supporting children w disabilities. My return to work was done very slowly. Eventually I decided to modify my work environment, as the classroom was too loud and too bright. I am working, and I am healthy, my life is pretty much back to normal, I am grateful💜 This group is a Godsend. It really helped me put things in perspective. I know you will come to love it as I do. Like everyone before me said, it’s a slow recovery. Don’t be too hard on yourself and listen to your body because it will tell you when enough is enough. Be safe and stay healthy💜 Pat

Hello everyone! it’s been awhile since I posted, but I can’t let an anniversary pass without checking in. My anniversary date is actually tomorrow, October 26, but I wanted to post today as the opportunity presented itself. October 26, 2016 is the day that defines my life as before the bleed and after the bleed. I have been one of the lucky ones because other than the occasional headache, « fuzzy brain » and some fatigue, I’ve done pretty well. I am an Early Childhood Educator (30+ years) and I had to leave the classroom, as it was too chaotic for my brain. Today, I work with children on the Autism Spectrum as a Behaviour Interventionist - in their homes. Same field, just tweaked a bit. Personally, my main struggle has been the toll it’s taken on my mental health. When needed, i can count in friends, family and you! I have had therapy and that is always a big help. At the end of the day, this site has been a validation of my feelings, my fears, and has provided me a community of of generous, kind hearted people who have walked a mile in my shoes. For that I thank you. So, on this anniversary, I want to wish all of you continued good health, and most of all, laughter💜💜💜 Much love, Pat

Hi Rajdeep i do hope you are feeling better. I know you posted last month, but I saw this thread and was curious as to what is happening in your life. Have you been able to go back home? i had my bleed 3.5 years ago, and felt all the feelings you were describing. I was hospitalized for one month, but other than slight headache and fatigue, I wasn’t feeling sick, but my brain was. I had vasospasms and put on medication that corrected the problem. My memories of what happened during that time, and before hand are vague to non- existent. At first that bothered me, but in time I have learned to let that go. I didn’t have young children at home at the time ( I was 57), but I was a preschool teacher. I had to give the preschool classroom up after 30+ years. I still work with children, but on a one to one basis. Change is good ( another thing I had to embrace on this journey). Though everyone of us recover at a different pace, I have learned through this wonderful site that we all, at one time or other, have the same feelings, fears, and questions. Most importantly we all feel a sense of gratitude to our higher power( for me God) that we have come out of this knowing that our bodies did not fail us. We have learned to adapt to our new normal, and that is a good thing! Personally, I have learned to listen to my body. After 3.5 years, I still feel fatigued if I’ve over extended myself. My short term memory has been affected, as well as my retrieval of words. These are predominantly evident when I am tired. I have learned to say “no” without feeling guilty. Self care is a vital part of your recovery. If you are struggling with depression, anxiety, fear- please talk to your physician. I strongly believe that there should be a mental health check in as part of our recovery. Please keep in touch, keep well and stay healthy😊 Pat

Hi and welcome to BTG! Like everyone before me has commented, this is a great place to be for support, asking questions and in general feeling connected to people who “get it”. I had my bleed 3.5 yrs ago, and even though I had a good recovery physically, my mental well-being went through a battle of it own. I was in the hospital for one month mainly because I was having Vasospasms. Honestly at the time I had no idea what this all meant and it wasn’t until I was home recovering that I did my own research and fell into the “google” rabbit hole. I have always suffered from mild form of depression and anxiety - and had therapy to deal with it, so I recognized the signs. What helped me, was talking it out with my friends, my physician and finally coming to the realization that I had gone through a major trauma and was dealing with PTSD. One massive help in recovery was finding this site. It was telling me that I wasn’t going nuts for feeling the way I did. That was a major turn around in my mental well being. I gave myself permission to feel down some days. It was ok for me to feel tired and wanting to have naps. It wasn’t a cop-out to say “No” to events because the thought of being around noise, lights, and people was just too much at the time. The next day is always there to conquer one thing you couldn’t do the day before! As time passes, these moods are less and less, but I still get them. I recognize them for what they are, acknowledge that I might not accomplish all the goals I had for that day and say to myself, Tomorrow is another day! I believe that the mental health aspect of surviving something like this isn’t fully addressed by our physicians. I live in Canada and although my care did not cost me anything, I wish along with the physical care I received, there would have been some mental health follow up. Hang in there, you are so early in your recovery and it sounds like you are doing well. You have found yourself a very caring, and knowledgeable community. We have all been where you are right now, and everyone here will support you in your recovery. Take care, stay safe, stay healthy! Pat

Hi Skippy What is a V pillow? 🥴Pat

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 !???!

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!

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

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

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

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

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