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Stroke Survivor - male
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Everything posted by scottm

  1. scottm

    Wow, 300 of Gaba and I was too messed up to function, sedation effect. Cymbalta had a minimal effect at 60 but at 60x2 it left me in a mental haze but still in high levels of pain.
  2. scottm

    Good luck Ken, hopefully he has some answers for you. That ice-fire is one of the worst sensations as it is sharp and biting. I tend to refer to it as a brittle sensation. My neuro gave up and declared me refractory to treatment months ago, That description follows me now. I have an appt. with him in May, can't decide if I should bother.
  3. scottm

    It is February March here but being in Florida we have 4 seasons...Pollen, lovebug, hurricane and summer.
  4. scottm

    Not since, the last one I had caused my stroke. I'm that 3% they talk about in the informed consent...
  5. I think about trying the chat from time to time, but my typing is so slow anymore that the conversation has moved on by the time I hit enter.
  6. Here is a report that covers a lot of stroke statistics. https://www.saebo.com/stroke-statistics/
  7. scottm

    I sometime do off by one typing. dohj
  8. scottm

    A lot of my memories around the time of the stroke are missing or scrambled. 3 months before are just gone and 6 months before to about 3-4 months after are tangled and jumbled at times.
  9. scottm


  10. scottm

    The thing that sets me off since my stroke is the ice dispenser on the fridge. The sound of the ice falling triggers me instantly. Everyone has learned to let me know before they start if I am in the kitchen.
  11. Now the Institute of Neurological Recovery in Boca Raton is peddling their injections for Thalamic pain syndrome (CPS). Another use for the wonder drug entracept, I'm pretty sure my neuro would be all over this...Last year it was ataxia it cured if I recall correctly.
  12. Yes, this is the guy that cures stroke paralysis and movement issues by injecting an arthritis drug off label. Not insurance covered and it can take many injections of course.
  13. scottm

    I take coumadin everyday and have a monthly blood test when it is nice and stable which is usually. Much cheaper than those new ones. My neuro and cardiologist both have different views on that but the cardiologist is the expert on things blood so I go with his view.
  14. scottm

    I have wondered about that but with my CPS I can't imagine it being a good therapy for me. I'm interested in what others think of it however.
  15. scottm

    I set myself a challenge to take the advanced navigation class I hadn't had a chance to take before the stroke. I'm on my 3rd week and struggling but moving fprward. It's all based on basic math, no trig or advanced math but I'm having the hardest time framing the problem before I start solving it. 90 - 22 turns into 5 minutes of refreshing myself what the numbers mean and how to apply the -. Then I can start. It's hard to explain to someone how hard it is...well also knowing I used to do some pretty advanced calculations. I was just working a time distance dead reckoning plot and I came away feeling like an idiot, it is a trivial problem. I think I need a dunce cap.
  16. YEA, bunny suit! Merry Christmas Kelli
  17. scottm

    Too much noise, visual stimulation, etc will put me into a state of neurofatigue like Tracy said. Once there I am good for sitting and staring off into space with an empty gaze and no thought process going on. Sort of like being asleep but my eyes are open. Freaks my wife out when that happens. She just puts me to bed.
  18. Got a call from the neurologist an hour ago to stop taking the new medication as it was sending my blood pressure into the 160's. We've now gone through the suite of tools he has and there is no pharmaceutical solution that doesn't either do nothing or has unacceptable side effects. We went through every antidepressant and anti convulsant and they either put me in a fog, screwed with my cardiovascular system or did nothing. I'm apparently in the group of people they consider essentially untreatable with medication. Neuro says call in 3-4 weeks when my system has completely flushed to discuss,
  19. Tarina, 'Be the duck' is a phrase I have used for many years but it took on new meaning after the stroke. It means just let things roll off like rain on a ducks back. A corollary to don't sweat the things you can't change they'll still be there.
  20. scottm

  21. scottm

    I was wondering when you got into Lego's when I first saw the picture. What a great idea 🎖️, I may see if I can 3D print something like that.
  22. Time is your friend with this as with everything stroke. It will take time but should improve. 4 years here and still improving my memory abilities. Yes, I have a period which is gone forever but I slowly recovered my ability to hold things in my memory mostly because of the memory skills they taught me in speech therapy. A good speech therapist is priceless for recovering memory abilities.
  23. scottm

    I ask myself this often. I told the doc I was broken once, she corrected me that I am injured. Being disabled is a state of mind to me. Sure, I could get a hang tag and park in the blue spot but there are people out there who have injuries that make those few extra steps worse for them than me. I'm able to work so don't try to collect disability. It isn't always easy and everyone tells me I should including my docs but at the same time approve of my still working to stay active.
  24. scottm

    I'm right there with you and pray this works for you. Keep us up to date.