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Stroke Survivor - male
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About scottm

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  • Birthday 06/05/1958
  • Age 62

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  1. The docs often get it wrong for stroke victims. I wasn't supposed to survive the coma but I did. Walked into my neurologists office and he did a double take because I was not only alive but walking and somewhat lucid. Every doctor who reviewed my hospital records has told me I shouldn't be alive, let alone as aware and active as I am. They aren't deities they make bad calls just like us. Maybe she will, maybe not. None of us have that insight. I wish you and your sister well and a good recovery.
  2. scottm

    Heathber, I take Pantoprazole because the doc says the heart medication (carvidilol) will mess with my stomach so she errs on the side of caution. I have a neuro appt. tomorrow, kind of dreading that as it looks like we have exhausted the medication list for CPS and I may just be left hanging. Can't fault him, he has thrown everything at it with no result or bad side effects.
  3. scottm

    My younger brother who is almost 60 now still races flat track on a Suzuki 400 on the weekends..
  4. My damage was diffuse in many areas but mostly in the parietal lobe and thalmus. The parietal causes perception problems such as auditory and visual overstimulation as well as some aphaisia. The thalmus is the brains switchboard for routing sensation, this causes me to feel things that aren't there and not feel some things that are. Sensations like cold and touch are misrouted and perceived as pain.
  5. scottm

    I was on it to control my CPS but it had no effect for me.
  6. scottm

    Indeed. Just came back from the docs who discontinued a medication due to side effects being worse than the symptoms.
  7. scottm

    Deigh/W2, We were married on New Years Eve. I do have a set of kevlar knife proof gloves I wear around knives that I got from Amazon. They've saved me many times.
  8. scottm

    I survived the day with no blood loss or stitches thanks to our son who got to be the turkey carver for the first time. The grandson (his son) was a delight and we all had a great time. Now back to the wife as today is our 25th anniversary of her putting up with me.
  9. scottm

    Doc called this morning after my blood draw yesterday to tell me my INR of 4.7 is more than twice my therapeutic range of 2. So no coumadin for 2 days and under doctors orders to avoid anything sharp that could cut me, if I hit my head go straight to the ER for imaging, blood in urine got to ER. Apparently they are concerned with my blood being so thin I could have internal bleeding from most anything. Guess who isn't carving the turkey tomorrow...but I get to spend our grandsons first Christmas with him.
  10. scottm

    I seem to recall that ended badly for him...
  11. Been a bit but seemed like a good time to check-in. The neurologist has discontinued all my meds for pain a few weeks ago. Too many side effects or they were ineffective. I've had 8 different medications trialed and all discontinued mostly as ineffective, 2 had very bad side effects, one had me end-up wearing a cardiac monitor for a month after it made me severely tachycardic. I know he is doing his best and he has expressed to us that this is very hard to treat to begin with and I'm an edge case in that my response to brain meds is atypical and I react at very low doses. There are still some things that could be tried like ketamine or high dose opiates but those have there own baggage and would destroy my independence, such as it is. So for the moment I savor the days like yesterday when my pain was very low. But we solider on because next week may bring a new breakthrough and treatment. I cover my legs in flannel pants or scrubs in public, a sweater sleeve on the right arm but for the face I'm kinda stuck because covering one side would be kinda creepy in a super-villian sort of way.👀
  12. FWIW, I shed 25 pounds and the cardiologist cut my BP meds to 1/4 of what it had been because my BP was too low. My primary told me a couple weeks ago she may soon recommend another reduction or elimination. My wife lost 45 pounds so far and is completely off BP meds now.
  13. I know having to pee can raise it 10 points.
  14. 4.5 years in I still get the fatigue, but not as bad as it used to be. Check your possible medication side effects as I found these made it much worse to the point where I said no to certain ones and the doc had to find alternatives. Worst are the actual neuro drugs but sometimes lowering the dose and accepting the consequences was the better option. YMMV.
  15. scottm


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