From what I’ve researched, this is caused by the brain sending out false signals to your extremities due to trauma brain suffered during AVM bleed and subsequent surgery. Got a Rx from my Dr. for this condition,“Lyrica” 100mg 2xday. Does not work as well as I would like, probably would if dosage was increased. I worry about liver/kidney damage from all the other medication I take, so I don’t really want to increase dosage. Does anybody else suffer from this condition too and what do you do for relief? HELP
Hello
I had this many years prior to my avm/fistula
I have a b12 and b1 deficiency get tested
I have leg hamstring pain and weakness from a stroke that was a few months prior to my avm/fistula
and this is due to the brain sending messages.
Angela
Hi - I don’t have burning, just tingling. It’s annoying but I can live with it - I probably couldn’t handle the burning, though. No new suggestions but Angela’s are interesting! Just wanted to chime in and say if the Lyrica isn’t working well for you consider if it’s worth taking at all. A doctor suggested Lyrica for my pain issues but I declined since its in the same family as another drug that gave me side effects. If it worked well for you I wouldn’t mention it, but I’m a fan of minimizing the Rx’s.
Is it in both sides or one?
The symptoms ?COULD? be what's known as central pain syndrome, CPS.
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
IF it is CPS, patience of 'trial & error' w/ various anticonvulsants are the norm for treatment.
Lyrica is among the 'common' meds given for CPS.
Lyrica never did help me, but I've discovered you may want to re-try meds in future.
I'm presently re-trying Lamictal/Lamotrigine. Initially it seemed to help, but now am not so sure. Time will tell. :)
You may want to check out my CPS vids, as I've been on a 'soapbox' to help raise awareness.
http://www.avmsurvivors.org/video/video/listForContributor?screenName=35xpfanrqpejk
Best wishes,
Patti
Central Pain Syndrome as Patti says. Entire left side burning and tingling pins and needles with me.
What's working best for me is:
Gabapentin (neurontin)various dosages through the day. 300mg x 6 or 8 or more.
Lamotrigine (lamictal) 50mg/25mg daily helps, but nothing has been a cure or kept it away 100%
Vimpat 100mg x2
Wishing you well. Keep trying the anticonvulsants in combinations with other ones.
Thank you
Thanks for the advice/comments. Not sure what to try yet. Chip
Thank you
I’ll ask my doc next visit, thanks
That is my goal also, to minimize meds. The burning is very uncomfortable and keeps me up at night. Do not know what to do without increasing dosage. I worry about my liver and kidneys !!!
It is in both hands and feet. I’ll check out your videos ! Thanks
I appreciate the comments and suggestions from everyone, sometimes it is all I can do to keep from going to the kitchen/drug cabinet and loading up on pain killers / Valium type drugs just to sleep as I lay here in bed reading y’all’s comments and my hands and feet feel like they are on fire. It could be worse though, I could 6’ foot under and not feel anything ! Prayers to all !!!
That sounds like CPS. Pain killers have never been offered to me, as the doctors know it won't do much good other than get me addicted to something.
I load up on gabapentin, put on thick socks and go to bed. Only way I can get sleep, keeping my foot from rubbing on all the sheets/blankets. Even in summer. sucks.
Cool breeze makes the burn worse, I have to keep covered up with a blanket and socks/slippers to keep all of it bearable.
Burning pretty good right now, about time for some gaba and sleep.
Keep working with the doctors and medications. Anti-epileptics are the route.
What is CPS and the slept med that you are taking?
Central Pain Syndrome. (CPS)
No specific medication for sleeping. I use heat to keep the pain calm and wear specific clothing to keep the bedding from causing more pain. (like extra thick socks)
CPS is caused from damage to the central nervous system.
NINDS has a good description & '101 basics' re: this @
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
My entire left-side is numb, w/ constant burning, tingling, & bizarre, unimaginable sensations & symptoms.
Extremities are worse. My left hand is the 'epicenter' of pain, burning extra & feels like razor blades while holding hands, petting our cats, & overall usage of hand. My vid best describes my experience... http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp