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Stroke Survivor - male
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Everything posted by scottm

  1. scottm

    Sounds like a variation of a TENS unit. I have one I used to use but it doesn't mix well with CPS.🤣
  2. I had an appt. with my neuro yesterday who like most of my doctors I really like as both a doctor and a person. Then he said the thing that everyone of my doctors has said at some point that just really upsets me. "You shouldn't be alive, not many would survive what you went through yet here you are and you can walk and talk, even if you don't always feel lucky". I know that they think it is supportive but it really disturbs me. For some reason having that pointed out to me is both unnecessary and insensitive, I was there and lived it in real time. I embraced the fear and pain and made it a part of me to drive me forward. Believe me, I'm aware of how bad I was and how far I've come, don't make me remember that dark road. Please?
  3. 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.
  4. scottm

    Awesome Becky. I just got mine cut to 1/4 of the dose I've been on for years after I lost 25 pounds.
  5. scottm

    Will2, Not something I often discuss but while I was in a coma I remember having to make a decision to go on or go back, I chose to go back and woke up shortly thereafter. What that means I don't know.
  6. scottm

    We can accept where we are and move on taking our victories where they come or just be resigned to it admitting defeat. I prefer the former over the latter.
  7. scottm

    Will2, My surgery came about because I took an antibiotic the dentist gave me that day, somewhere along the line I had acquired a severe allergy to it and went into full anaphylactic shock. Note: being intubated while awake and throat is swelling shut==not fun. Anyway, it so stressed my heart and triggered afib which made clots. Off to the cath lab where they found my arteries mostly closed off. At some point in the surgery they knocked some plaque loose and it went to my brain. This is what I've been told as my memories end before EMS even got me into the ambulance. They restart vaguely about a month later. I'm that 3% chance of bad outcome they talk about during informed consent...
  8. scottm

    I can sorta see their point as my case was unusual in that my stroke happened while I was having openheart surgery so it wasn't until the next day when I hadn't woken up that they realized something was wrong. By the end of the week and I still hadn't woken up my survival chances were rated < 10%. I came back but it has been a long road I'd just as soon not relive. Thanks for understanding everybody.
  9. 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.
  10. I know having to pee can raise it 10 points.
  11. I have CPS so the neuro and my primary and I have some extended discussions about sensations. They both describe that as rerouting issues trying to get around the damaged areas. In my case they reroute to the pain center due to damage to the central routing area, the parietal lobe and thalamus. They are actually harmless if a bit annoying in our general stroke population. That said, in the beginning they used to be upsetting but I've learned to just accept it, especially the numbness in my torso which makes me sometimes think my midsection is missing. Pain is a relative thing and we all perceive it differently, sometimes I would expect to see a pool of blood around me feet from the lacerating sensations in my calves, but I know it won't be there. I tend to think of all those as phantom sensations that tend to undergo subtle changes over time and some fade away.
  12. When people tell me that I just laugh, they have no idea what the inside of my head looks like, all cobbwebby and honestly, just vacant at times when the fog rolls in. They'd be terrified if they ever saw it.
  13. You didn't mention the mail client you are using but in Outlook right click on the email > select junk email > select never block email from this domain.
  14. scottm

    The first 3 months were fairly quick then much slower. My wife, PCP and neuro all say they can see improvement over time. But they still feel weak.
  15. I sometimes refer to my self as a 3 percenter, The odds of having a stroke during that surgery are 3%, the odds of having CPS after a stroke is 3-5%. I should change my name here to skim milk. I'm basically the one they warn you about in the informed consent.
  16. I was told by my wife when I woke from a week long coma that I had a stroke during heart surgery when I asked why I was in the hospital and what happened. Several months before the event are forever gone so I only know what I've been told about and the after is quite hazy for a month or so. Doctors tell me it is better that my memory is gone because I apparently tried to die several times and they had to take measures to keep me alive both before and after the stroke. Note, you can dream in a coma but it was based on corrupted input from the things going on around me...not exactly pleasant but I do remember right before I woke up having to decide if I would go on or go back...I chose to come back. My wife spent that whole week in ICU reading to me. I now always tell people it was the doctors who kept me alive so the techs and nurses could fix me. That is a blur of pain and fighting to make my body respond, I remember the first day I got my fingers to move a little and how happy we all were with that little twitch I could make happen by concentrating. I'm still fighting and healing 5 years later, it never stops.
  17. scottm

    Learning to run again... It went like this, I sprayed a wasp nest outside and they were of course angry and wanted to take it out on me. I tried to run and realized I completely lacked any form of coordination for quick movement. I did however have the ability to fall and availed my self of it since I was next to the pool. Use the tools you've got.
  18. scottm

    I just give them the list of what I want with a note on the bottom that no substitutions accepted. Usually I was developing large complex systems long before they were born. A couple years ago post stroke I developed a boating simulator and did it with my parietal lobe tied behind my back. It just took longer.
  19. I do have occasional sensations of wet, both warm and cold. Always make me check... The knife in the back of the calf leaves something to be desired.
  20. 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.
  21. Most of my taste preferences now are based on my hyper-acute sense of smell.
  22. 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.
  23. 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.
  24. 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.
  25. scottm

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