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Stroke Survivor - male
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Everything posted by scottm

  1. scottm

    My stroke was caused by bypass surgery, I'm the 3% they warn you about when they do the potential bad outcomes speech to get consent. I had never has afib prior to the surgery but did after and they couldn't control it for about a month or so. They finally put me on amiodarone and you don't want that if you can avoid it, nasty to your body and takes months to get out of your system when they stop it once you have a normal rhythm. At this point I'm considered a coumadin lifer because of the combined cardiac and stroke issues and they are never sure if I might go back into uncontrolled afib even though it has been almost 5 years.
  2. Most of my taste preferences now are based on my hyper-acute sense of smell.
  3. scottm

    Prayers sent.
  4. scottm

    My neuro and primary sort of shrug their shoulders but agreed with my rationale for not wanting to use it 1) No formal dosing is available, how do I know if I'm getting 5 or 50 mg. 2) Their is very little high quality evidence from clinical trials about its efficacy. 3) Still illegal under federal law which can introduce all sorts of potential complications.
  5. So far it seems the Carbamazepine is working without all the side effects. No fog most of the time, no sleepiness or lethargy, fully intact cognitive function. The pain is mostly reduced to a sensation not unlike that produced by the neuros tuning fork when he places it against my body, sort of a buzzing sensation. A little annoying at times but compared to the ice/fire it is a blessing. Only place it isn't really working is my face for some reason. I do have moments where the pain reasserts itself to remind me it is there, but I have practice coping with it. Clothes still sometimes a challenge but overall it feels better. I'll take this as a win. The doc wants an update in 2 weeks after this has reached a stable concentration in my system to see if it needs adjustment. The dose is so low that the pharmacy had to special order it twice as the manufacturer sent the wrong dose the first time thinking the pharmacy made a mistake and nobody takes it at this low of a dose.
  6. scottm

    I haven't updated this recently...We are now backing down the amount of the medication due to it causing visual disturbances. It sometimes feels like both eyes are focused on different points in space so I am seeing 2 entirely separate images. Very disturbing and led to a very hard fall from about 3 feet to flat onto my back. As the dose goes down the pain is ramping up slowly. We just have to wait and see, but I can attest it was working well until the side effects started.
  7. scottm

    The wife and I are ecstatic to see our new grandchild and they only live 30 miles away. Seems I've caused a problem with the DIL though. She wanted me to hold the baby (1 week old) but I have declined since I can't predict how my arm will function and general weakness. She is offended and I am afraid of dropping or hurting the baby. I had expected that as a nurse practitioner she would understand that I have to live with certain deficits one being that I don't want to chance injuring him. Love the little guy but his safety comes first.
  8. scottm

    They know not what they say or how it affects us. Like the "You must be all healed up by now".
  9. scottm

    When I get overstimulated visually my eyes tend to lock onto a single point as a coping mechanism to cut out all the 'noise' in my field of view.
  10. 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.
  11. scottm

    Looks nice, I would have expected girly pink on the bed covers.
  12. scottm

    I got selected for one of those studies but rejected at the final review when imaging showed that my stroke was diffuse with no single point for them to try. So watershed type strokes are not viable.
  13. scottm

    I had right hand shakes for the first year but I kept forcing myself to use it and it slowly settled down. I still have moments but it did get much better with use.
  14. scottm

    Looks nice. My wife collects red viking glass, we have a room full.
  15. Nice looking place and you'll be all settled in no time I'm sure. Congratulations.
  16. scottm

    I prefer to refer to us as dedicated.
  17. scottm

    When I first struggled to open my hand and move my arm it was a long fight. Now that I can ,mostly, several times a day I take time to stretch them and always go out of my way, even if it hurts to use them. They would love to go back to a fist over my stomach but I'm not going there.
  18. That is my approach. I know I don't want them to say something to 'make me feel better' I just want them to be quiet and listen for a minute. More people should do tht.
  19. scottm

    Well I had a good visit with the neuro yesterday. He was pleased with my progress in general but when we got to the part about the pain I asked if he considered me a problem patient since nothing has worked or had bad side effects. He reminded me that he had warned me this is difficult to treat and some people never find a good solution. So starting tonight I'm now on Carbamazepine XR 100 mg twice a day. I'll check in with him in 4 weeks for a status update, unless I start having side effects like hepatitis which apparently this can cause. Also need t notify the cardiologist since this can mess with my INR so back to weekly blood draws for a while. So we have this to try, he said he decided that morning that he would suggest it to me. We'll see what we see. Now the good part. We had a really pleasant visit and he said he enjoys when I come in because I'm always trying to improve and being successful to varying degrees. He said he has a lot of stroke syndrome patients who never really improve, but that's the nature of the beast for him. I'm apparently a rare exception who has improved a lot since I've been seeing him. I was surprised that he laughed when I mentioned that my gait was improving but I still walk like Oswald Cobblepot, he knew who the character was (the true name of the Penguin of Batman fame). There is something nice about knowing my improvements mean something to my doctors and I'm not just a manila folder.
  20. scottm

    Thanks ladies, first stumble is they have to order the drug at the pharmacy. Apparently they never get requests below 200mg and usually 300+. When I told them he wasn't sure how it would work and wanted to titrate me up they understood. Maybe I should change my sig to be the penguin...🐧
  21. scottm

    I'm in west central FL.
  22. scottm

    One step at a time and don't let someone who hasn't been there talk downhill to you, they just display their ignorance. I started with just concentrating on getting my hand to open, took about a month but one day the fingers moved a little, I celebrated that small act with the nurses in rehab and it set the ground work for what came later. 4+ years later I have a lot of function back in my arm and hand, can walk and mostly think and talk. Still a work in progress. Set yourself a goal and strive for, if it doesn't work today there is tomorrows efforts that may do it but just never surrender. I know people who surrendered and there is nothing good down that road.
  23. scottm

    FWIW, if you like fantasy and characters with a droll sense of humor I can recommend the Belgariad and Malloreon trilogies. These are by David and Leigh Eddings and both the wife and I have read them more than once. They move right along and once you start they have you. I used to read nonstop, now a lot less and not for extended periods because my eyes aren't still, they bounce.
  24. scottm

    I don't know what test for plavix, but the neuro will but they are typically concerned with the actual neurological effects and how to treat that. They will perform a series of tests that test your ability process sensations like touch, vibration, temperature, gait, movement, etc. which help them determine how your brain is working. From all the tests they determine what medications you may need and they may suggest PT or other therapies they think will help.