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Stroke Survivor - male
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Everything posted by scottm
  1. 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.
  2. scottm


  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Is this the start of a trend in Florida or just an outlier? I suspect a trend now that people realize smoking is not allowed nor is MJ with THC. I've yet to see a doctor who is at all interested in getting certified to recommend MJ to a patient. http://www.tbo.com/news/California-chain-of-medical-marijuana-clinics-downsizing-Florida-operations_163783806
  9. 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.
  10. YEA, bunny suit! Merry Christmas Kelli
  11. 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.
  12. scottm

    Took me a while to realize what I kept smelling until I mentioned it to a chemist friend one day. I smell trace amounts of hydrogen sulfide (rotten eggs) caused by the very slow dissipation of the zinc anodes in the hot water tank. They all have them and no one but me smells them.
  13. 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,
  14. 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.
  15. scottm

  16. 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.
  17. 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.
  18. 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.
  19. scottm

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

    Rest, sleep and speech therapy are probably your best assets to use. Speech therapy is more of a cognitive therapy, it helped me a lot with my math deficit. I asked the therapist why it was called speech instead of cognitive therapy and she said it was because speech is the basis of a great deal of our cognitive ability's. Slow and steady...
  21. The neuro says he wants me to wean off the Cymbalta and see what happens. My fatigue level is off the scale, I just want to sleep.The medication has been helping with the pain but the fatigue is a real issue. Sleep study when I'm weaned in a month. I have to admit to more than a little concern about the level of the pain when it starts ramping back up. Steady state now is 4-5 with peaks to 7-8. 10 for me would be a bear eating an arm... We wait and see, if it gets crazy I can always restart and take the trade-off of fatigue.
  22. scottm

    The cymbalta trial is now officially over for me. While it did have some effect, like all the other antidepressent, anticonvulsant, etc. drug it put me into a fog that left me struggling to wake up and stay awake with worse memory. The withdrawal from cymbalta was the worst, hot/cold flashes, sweats, thunderclaps in my brain. Lasted several weeks and is still around a little. One advantage of coming off that is that I can pee again. It was a struggle. Neuro wants to move to effexor to trial. Side effect profile is similar but you never know. Not looking forward to going back down the rabbit hole and making my cognitive deficits worse but doc says that after this he is out of options. So soon I have to decide which is more important, thinking or some minimal level of comfort. I already told him that making my cognitive deficits worse was not something I would consider a win. He's tried his best but as we've discovered some people do not respond well. Last visit he said that some nontrivial number of patients do not respond to treatment for CPS in a meaningful fashion and I may end up in the population of people who classify as being refractory, essentially untreatable by any conventional treatment.
  23. It is not just you Tarina, many of us suffer with over stimulation problems. My worst is sound, all sounds blend into one but lots of movement around me can cause vertigo. Bright colors, etc. there are many forms it can take but over time you can find some coping mechanisms. Just ask and we will try to share. The neuro should have a copy of the MRI and be able to discuss it and what it means for you at least in general terms.
  24. scottm

    It was as gradual a taper as can be done based on available dosages. Mostly past it now but not looking forward to more of the same with last resort medication. We wait and see now. I'm not in a hurry to be put in the intractable category which is sort of the discard heap for failed patients.