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HostTracy

Staff - Stroke Support
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Posts posted by HostTracy


  1. Darrell you are welcome for my little input earlier (not sure if anything I have or am confronted with fits but I do share very similar things to those who have had posterior circulation stroke even in the brainstem). I whole heartedly agree with my other friends here. I know I definitely am not the same as after my stroke. Many things improved, went away, or I learned skills to deal with them (usually through therapy - physical and mental). The intricate way in which the brain accepts, processes, and sends new info out to complete an action, a response to those is just so complicated. It some times takes a long time for new connections and work around that can be helpful to us that have had an acquired brain injury. I will tell you that the brain is remarkable though. It wants to win. Impulses travel on pathways or highways and any disruption in that can cause so many things to not communicate correctly. I'm not sure of any specific answer but time is your friend. Keep the faith and all the blessings for you guys. ❤️


  2. My stroke was bilateral cerebellar stroke in the PICA region so not a brainstem stroke. The brainstem and cerebellum are fed by the same posterior circulation (I believe that is correct). I have what is called Cerebellar Cognitive Affectice Syndrome (CCAS) for short. 


  3. 16 hours ago, Ctcook said:

    Hello Tracy. Ive gotten so much info in 3 days. Im happy i found it. I plan to see you there in the future.

    👍🏻👍🏻🎊🎉AWESOME!!! 🎉🎊👍🏻👍🏻 It was great to see you in chat earlier today! Hope to see you back soon! 


  4. Hey Carlton! Pleasure to meet you. This is a really great group of people. Looking forward to seeing you more. I saw that you joined chat today. I am also a chat host (Mon & Wed 3-4 EST) come visit some time! ⌨️💬👍🏻 We have a lot of fun. 


  5. Blessings to you and don't you worry a moment about communicating with each of us. Your response is very clear and very much is all inclusive. 🙂 Problem solving is also an issue for me and especially when I'm "extra strokey" that's what I call a bad day haha. I think I gave an example of year round anxiety trigger instead of Anniversary trigger. I had my stroke 7-5-2015 - one day passed 4th of July and this day has brought me anxiety every year since. It doesn't help that it is legal to set off fireworks in our neighborhoods... That starts a few days before and continues for a good week after. Nothing like dropping a glass of drink or doing the crazy dance at random times during this. I'm a bit of a nut the whole time... My anxiety is very high then. 


  6. Thank you Becky for putting light on this subject. I know I am in the high risk group (asthma, stroke history, diabetes, well controlled high blood pressure) so I have been vigilant and at home for at least 2 weeks now. It's important that new survivors get the info that they may be immuno compromised especially so early in the journey. Just to add something (I am only passing on what I have read in recent reputable posts on Covid-19 but it is still totally 3rd party) several persons from a medical perspective have relayed that the worse cases have all shown ibuprofen in their system probably self administered med when starting to feel ill. More than a few have said to avoid ibuprofen for the time being and use acetaminophen/paracetamol only. Thankfully, I'm not allowed to take ibuprofen and only use Tylenol. Just a possible precaution. Stay safe, wash your hands often, and inside is best. ❤️


  7. These are all great answers. To answer the question sort of... I definitely have these moments or pieces of time. First.. Taco Bell... I ate Taco Bell the night I stroked. I absolutely can't eat that ever again. I can't even stand to smell it. That night I threw up (massive projectile v that truly didn't stop for weeks/months) and just thinking or seeing Taco Bell is like complete PTSD for me. I don't think that will ever change. I suffer many psychiatric issues from my stroke. I tend to have cyclical bouts of depression, Sad (this winter has been my worst and I experienced a huge amount of Cognitive decline. Still not 100% but feeling it lifting). I, like Becky, now have a pretty severe anxiety disorder with panic attacks... This makes me regress when I'm not controlling this well. I also have overstimulation of all my senses. So any time I go through things like that I regress. I do get back to myself but at times it takes a bit. This seasonal Affective disorder depression has set me back since November. I have a very difficult time talking, communicating, controlling emotional lability (I have continued PBA), severe fatigue... It is disturbing every day. I do have Cognitive Behavior therapy every week and also see my Psychiatrist every other month. There are many types of therapy and I find myself looking forward to it. It can be scary to feel so out of sorts and to feel regression. Be kind to yourself and you may really receive help from talking to a therapist. Always keep your neurologist/PCP up to date of your concerns and times like you are speaking of. They can help decide if there is something that may help and it adds a measure of reassurance for yourself. Take care and I hope you are feeling better soon. 


  8. Deigh thank you for that positive update. I too understand the comfort of the chat room and if I were to try the very same conversation face to face of either one or several people... I would have certain issues. I would probably have something to say but I know from experience that even after trying multiple times to speak out I hesitate especially if I start to say something but then someone starts talking. Sometimes I feel my physical self letting go of my thought because it's easier I think. I freeze. I stutter. I sputter. I ramble trying to center on my point. I can go into a panic attack I'd my anxiety of the situation becomes too much. Yes... I've learned to avoid things at times. I promise you though I type 100% better than I talk or execute communication verbally. There are a few people I can comfortably talk with. My brain trips me up when I am verbal. I have good control when I'm typing. I so much relate. 🙂


  9. Ed hugggs forever!!! I so understand in my own way. It's weird I have struggled this week as I have a million other times in the same way (I mean my own same way scenario). My daughter and I really struggle...hard. I am a mom... I'm always going to be a mom. I lost my mom MOJO... Many will say "nooo you are a great mother". I don't think I am a bad mom but I have lost my mom MOJO. I feel this strain, no matter how accepting of today's me I am, I still try to be mom. I FAIL HARD! I have worked since I was 16 but I was always a very involved mom. My feelings and how I relate to me... Always makes me forget what happens when I forget today's me. I am a mom. I will always be a mom but I no longer do I slay at momming. I am shocked every single time my heart breaks and I feel that loss so hard. My body but mostly my mind fails me each time. I'm not sure if any of this makes any sense. I digress... Can I say it's been a hard few weeks haha (she's been staying in my 2nd bedroom for about a month and a half). I will say that though each "reminder" is heartbreaking... I am still growing forward... Well sometimes 2 steps forward 2 steps back but sometimes 2 steps forward 1 step back. I am learning my worth each step at a time. May I add "You, I, and you all have always been worth it!!!". Even today. 


  10. 7 hours ago, PaulNash said:

    What I have learned over the past four years (how time flies when you are having fun :-)) is that these things come and go.  So when I am down, I focus on making it through the next minute, then the next two, then the next five, then the next 1/2 hour, and so on.

     

    It's a technique that I learned in the days when I used to run seriously long distances.  If you focus on the finish line, it gets overwhelming.  Instead, air for the next lamppost or tree or whatever.  Once you get there, aim for the one after that.  Lather, rinse, repeat. 

     

    Still works for me.  Keep on for another 5 minutes; 10 minutes; then 1/2hour.  Next thing I know, it's bed-time.  And tomorrow is usually brighter.

    Paul I very much agree with you. I am now in acceptance that I am on a sort of roller coaster going up and down. I know I will make the climb and reach the top. I keep myself busy my mind mindlessly busy and bear the descent until the next ascent. It becomes a kind of recipe, routine. A sort of key to getting through. 


  11. I can honestly say no you are not alone. For 2 months after the stroke I was undiagnosed yet truly on a different planet. That was the very worst time and I contemplated ending it somehow. I would talk to myself (out loud or in my head I'm not sure) and say "I just can't live like this". During most of that 1st year I was on a different plane (felt like planet) alone. So alone and scared. It was like my mind and body thought and moved through jello and it was devastating. It took me a while to connect with other survivors... It saved me from myself. That is when I began to want and have the will to go on. It is difficult to think about... Truly tears me up inside but I made a decision to reach out to others and to hopefully help another who may be feeling that way now. I give that pain to God every day. Thank you Lord! 


  12. I too agree with everyone. Kelli I have the same issue with smell. I seem to have super human smell now and sometimes maybe even smell hallucinations (is that a thing). I smell things WAY too much and too strong. It also makes me nauseous and physically ill at times. Walking in a grocery store or big box store I am attacked with all the smells. Best of wishes to you Vortex it's true many things are just off especially so early after an acute stroke. Can't say that it 100% rights itself but it will definitely settle into "new" you. 


  13. BTW I am fascinated as well reading about all of everyone else's experience. I'm so glad you are all here. You are all miracles. I am in awe of every stroke survivor i have met and/or spoken with. Sometimes you don't even need words to understand another. I never want another person to ever have a stroke. But I learned I am not alone... At first I felt more alone than I could even comprehend. Then I found this site, then my local support group and so many others. We all have an unspoken bond. 


  14. 18 hours ago, will2 said:

    Tracy, I am amazed that the hospital discharged you in 48hrs. No CT scan, no MRI??? Though my situation and condition may have been slightly different, I can't imagine a hospital being more thorough and checking everything, especially with those conditions you mentioned. You may have died without proper treatment and at the very  least considered personal harm given your condition with the dizziness, lack of mobility, etc. With the correct diagnosis you could have been given stroke preventative medications as a precaution in the event of a bleed...unbelievable!

    Will I was given a head CT but again I had a very rare weird stroke. Even though I was in the middle of an acute massive stroke the CT showed nothing. It's due to where my stroke was, the Cerebellum. Very dense thick skull bone covers it and a stroke is very often not seen on a CT for several days. An MRI would have found it though. The hospital stopped at the CT. You are very right... Ive learned a lot about the Cerebellum and stroke in the Cerebellum over the past 4.5 years. It is so rare to have a bilateral cerebellar stroke it's almost unheard of (due to how the blood flows into the area), it is the least known about and the least studied part if the brain, many very skilled medical professionals know very little about it. It can be a very deadly stroke due to its misdiagnosis alone. FAST never included my kind of stroke. It's not so rare to survive the first 5-7 days but if untreated it can cause mass edema in the Cerebellum and can cause it to push into the 4th ventricle and effectively cutting blood supply to the brainstem and that is deadly. So seemingly OK for 4-5 days a d then rapidly declining. I was very lucky and very grateful that somehow my clot dissolved on its own. I think it is because the 911 operator told my daughter to give me a 325mg aspirin and chew it up. Not standard in possible stroke calls but the operator felt it the best thing. I will never know. I just thank God that my daughter (19 at the time) was in the same room. Good news... My Psychiatrist said there is a stir in the medical field around the Cerebellum even though much has been learned in the past 25 years. It's like uncharted territory and people are starting to get curious. That csn mean a world of difference to future stroke survivors of this type. 


  15. I had a bilateral embolic infarct in the PICA region of my cerebellum. So a clot that came from another area in my body and caused a weird very rare stroke. There days leading to my stroke I had something kind of like a migraine or maybe it was one. I had an annoying headache that didn't respond to motrin and it affected my vision... The sun seemed way too bright and I did have wavy rainbow lines (aura). The stroke hit like bomb... One you can see but not feel for a moment. I fell and my thought was "oh I fell I better get up". When I tried to lift my head that is the moment the bomb impacted me. My world turned into a vortex and my head was like metL to a giant magnet, my eyes and my head hurt so bad I can't explain it. Then I vomited so violently and never stopped...for weeks. I have no memory once in the ambulance. It's just gone. So the hospital did not diagnose my stroke. I was sent home in less than 48 hours. I couldn't speak a sentence just a word "sometimes". I couldn't walk (I hz  a walker but it was impossible for me to use it really. I had a potty chair next to my bed. I basically crawled my way to it. I had pretty much 100% vertigo and vomited all the time. I think I slept 18-20 hours every day. My daughter tells me she would make me food and lay it beside me in a covered container snd I usually tried to eat it each day (no memory). Since the hospital said I was having a strange migraine or it was labrinthitis everyone went about their daily schedule... My daughter would come home on her lunch hour and check on me. I finally saw my PCP and he did 1 reflex test and immediately sent me to a Neurologist. I finally had a brain MRI and I think about 2 months after my acute undiagnosed massive stroke was found. My Neurologist said that I was lucky that what saved me was the clot had dissolved on its on. A year of PT, ST, OT and vestibular therapy helped me get to where I am today. I have disequalibrium issues, anomic aphasia, general all over weakness, ongoing severe fatigue, a slew of psychiatric issues (due to cerebellum), cerebellar cognitive affective syndrome, Cognitive decline, ongoing PBA, proprioception issues, pretty severe anxiety with panic disorder, my fingers don't work properly, I have trouble processing info especially emotional info or I don't know abstract thinking. Pretty bad defecits in executive function and working memory. In general my memory is crappy! I do remember past things sometimes but better if I have a reminder. It's like so hard to make a new habit... It takes a lot of repetition... A LOT. I used to be the social butterfly but quite the opposite now. Having the stroke woke me up in many ways. I realize that my best advocate is me. I see the beauty in things around me. I have found an inner peace with life and death. I don't fear death and I pray to always strive to see the beauty the awe in life. 

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