badlands
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badlands, August 27,  2020  2:29pm EST

Post Stroke Pain

Hi, I've posted on here a couple of times since my stroke 11 months ago. While my motor control is pretty much back tonormal, I have had a continual increase of post stroke pain, which from what I have read, affects only 15-20% of stroke survivors. As such, there has not been as much research done in this area of stroke recovery as it has with others. Due to that, the primary first attempt at pain relief is usually through seizure, depression, etc. type medications. Basically, if it's available out there, my doctors have tried all of them with no success. I have also tried rTMS (repetitive transcranial magnetic stimulation) which is not FDA approved for pain yet, only depression, so is not covered by insurance. I have tried acupuncture. No success. Recently, I have had a stellate ganglion nerve block done. Again no success. All of these tried at some of best hospitals in Boston.  One pain specialist at Brigham and Womens' Hospital wants to do DBS (deep brain stimulation) where an opening is drilled in your skull and a small wire is inserted into the damaged area of the brain and snaked down your neck to an implanted device near your collarbone which provides an electrical charge to stimulate the brain. With a 50% success rate, it's not high on my list.

I was wondering if anyone on here has experienced post stroke pain or has a friend/family member who has, who might be able to suggest any other ways people have dealt with such pain and found some relief. I'm not looking for complete pain relief, just enough so it's not dominating every moment of my waking houirs. Currently I'm on oxycodone which does take the "edge" off the worst of the pain in my hand some of the time, and other times really provides no pain relief. Thanks for any advice anyone might have.

6 Replies
  • JOAQUIN
    JOAQUIN, August 27,  2020  5:36pm EST

    Hi badlands!

    I know we all grieve for you having to endure that kind of pain, a-n-y kind of pain is terrible.

    My wife suffered a pontien stroke in November, 2018. I learned through reading all that I could about her condition, that there are parts of the brain that respond to certain types of pain and/or discomfort. So, I went out and bought as many jigsaw puzzles as I could find. Started off slowly [number of pieces] then gradually work up to 1,000 pieces. I read a great quoite attributed to Lady Bird Johnson, Pres. Lyndon B. Johnson's wife. She said, "Become so wrapped up in something you love, that you forget to be afraid." I have substituted the word "afraid" with pain. It works! My wife's back and left arm pain is almost gone today. Was it just the 21 months that she had to wait before the pain left? I am my wife's sole caregiver. I can tell you this from my heart...that within a few weeks of doing puzzles [word puzzles, find-the-word puzzles, crossword, etc] my wife immediately said how little pain seemed to have remained. Now, this was our experience, so, as they say on tv, your mileage may vary. But badlands, what have you got to lose? Give it a try and see what happens. Find something that you love and immerse yourself in it.

    The other suggestion that I have to offer is canabis. This article says that Boston is very close...https://www.boston.com/news/local-news/2020/05/11/marijuana-delivery-massachusetts-applications

    You could purchase it from a local dispensery or through a retail outlet. I can't imagine that any one of your attending physicians would prohibit you from trying it. God Bless and please keep us informed.

  • axnr911
    axnr911, August 27,  2020  5:56pm EST

    Well, this may not work, but may be worth a try.  I suffered from anxiety and leg spasms (so bad I couldn't sleep). from my stroke.  The nurse in the hospital suggested CBD oil. Doctors can't prescribe it as it has not gone through all the tests, but both my gp and cardiologist were ok with me taking it, and my gp said many of her patients do.  It seems to calm nerves.  It is non hallucinogenic and non addictive (unlike oxocodone).  You'll have to research dosages, etc.  It is expensive and you must find a reputable place on line to order it or else from a health foods store. I get the oil as it is absorbed faster than the pills.  I get 1000 mg bottle.  The dropper holds 40 mg.  So a half dropper under the tongue (I hold it there as long as I can) if taken 1x each day would last me about 1 1/2 to 2 months. I liked chocolate mint the best. It cost me about $100.  Needless to say, insurance doesn't pay for it. I found that at first, If 20 mg didn't work, I'd use 40 mg. Pain may have a different dose. At first it was almost every day.  Then after a couple of weeks, every other day.  Soon 1 or 2 times a week. Than just occasionally.  Now I almost never use it.  So, really, over all it ended up not costing that much.  And it was all natural and had no bad side effects for me.  Hope this helps.   And I hope you feel better soon.  Love, Jeanne

  • Ilovedogs
    Ilovedogs, August 27,  2020  6:15pm EST

    Hello Badlands,

    I had experienced pain after my 1st stroke somewhat like you describe.  Acupuncture did help me but I had to have it done for several months.  I feel for you; it is hard to live with chronic pain.  My suggestion before submitting to DBS would be to research it thoroughly.  Have you been able to find testimonials from individuals who have had it done and found success in it?  If so, look into how much relief it has provided to those who have had it done.  

  • JOAQUIN
    JOAQUIN, August 27,  2020  6:18pm EST

    Hello Jeanne!

    Thank you for the post. The canabis works for my wife. It helps her sleep and keeps her anxiety in check, much of the time. I am so happy that it worked for you; we began using it simply because we did not want the side effects that opiates can inflict. May it work for badlands too. It's worth a shot.

  • badlands
    badlands, September 2,  2020  9:04am EST

    Thank you all for your suggestions. I am going to look into canabis and/or CBD. My potential problem with that is that being on warfarin creates issues with various foods, medicines, etc. and unfortunately the use of canabis. However, I am going to talk to my doctor(s) to see if I can try canabis with a close watch on my INR levels while on warfarin. Thanks Jeanne, CBD could be another option. I tried it for anxiety prior to having the stroke but I am also aware of its potential to help with pain. But again, like canabis it will require close watch of my INR as some chemical present in both CBD and canabis affects the ability of warfarin to do its job. Joaquin, I can see the benefits of getting your mind to concentrate on something like a puzzle as I have found myself that totally immersing yourself in something doesn't make the pain go away, but helps your brain to ignore the pain to some degree while you are busy concentrating. Ilove dogs, while I have tried acupuncture, perhaps I have not given it enough of a chance as I only did it for a month. Maybe, like you, I have to give it more of a chance. I have looked into the DBS quite a bit, and with only a 50% chance of success it seems to be a pretty extreme and risky treatment with only a flip of the coin chance of success. Personally, I like better odds than that. :)  Again, thank you all for suggestions. It will be an interesting road ahead.

  • JOAQUIN
    JOAQUIN, September 2,  2020  5:56pm EST

    Badlands,

    Before you go, something that you said in your last post clicked. "I love dogs". I know just how ludicrus this suggestion may sound now, but...have you ever thought of volunteering at an animal shelter? There are "K-9 Companions" that offer service dogs for "special needs" individuals, veterans with a variety of physical/ social/psychological needs. The dogs need rearing and training; the recipients need the animals love, care and concern for their master. There are so many animal shelters and places that need help so desparately! When you can see yourself as this being a possibility, please consider it. The benefits that you can offer to the animal community are substantial!

    The benefits derived from such voluntary service to the animals that you love can save your life too. Thank you!

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