Hi, im currently being weened off tegretol retard due to suffering really bad from the side effects, and these electric shocks which started about a week ago i thought may be one of them but now im down the 200mg a day from 800mg and im still getting them while all the other side effects are disappearing, (when i was at 200mg initially i didnt have any side effects until i reached the higher doses)
has anyone experienced these type of pains? they last for only a second and start in my neck and radiate down my back and into my arms and fingertips, they are really painful and feel like beds of needles! or electric shocks
I did some online searching and found something called Lhermitte's sign, and when i looked at the description it was exactly the same, all down to the pains happening when i bend forwards,
has anyone else had these type of pains while on tegretol retard or standard tegretol? or could this not be a side effect of tegretol? :S
I certainly get this as well, nut have assumed mine was due to my TN. when I am having the shock like TN pain, I have that accompanying it. Even when I am only having throbbing background pain, most often when I lean forward or backward, I have a sharp electric shock like pain that starts in my bottom molar area ( on the same side affected by TN), radiates down my neck on that side, around my shoulder, down , my back, my butt,and finally all the way down my leg. Including my arm fingertips and toes. I am on 800 Tegretol as well
Blue Eyes and Wolfe: I would recommend that each of you report your symptoms to your neurologist immediately. Pain in the arms and back is not symptomatic of TN or of Tegretol side effects. This involves other nerves. I would be concerned that you may be having a side effect involving low levels of Sodium and/or Potassium in your blood stream. Alternately, Lhermitte's sign is considered a classic indicator for MS. Please both of you, get this checked out.
Got it Red. Thank you so much for the overseeing you do. I am waiting to get approved ina special prigram to see Neurologist. But i do see my PCP wednesday hopefully. Any suggestions as far as what to say?
Oh I didn't see the back and neck shocks that Blue eyes and Wolfe have. Sorry. I would only get them in my arms, mostly and legs , occaisonly,with Tegretol.. now with Trileptal, mostly, in my arms. This is different then.
No worries, Min. I miss details some of the time too.
Blue-eyed girl, suggest you take a short list of symptoms with you to your PCP appointment (on paper). Discuss the symptoms with the physician. Then ask one question: "what is accepted medical practice for positively determining whether these symptoms may be side effects of the medications I am on, versus some other neurological problem such as MS, or a mineral deficiency due to suppression of the Sodium channel?" Then let your PCP explain the course of action to you.
Let us know how your appointment comes out, please.
Many thanks for the advice, I must admit i had seen that it could be linked to MS whilst researching the cause and i started reducing my tegretol as soon as it started so i could say to my neuro "its not because of the tegretol, Im no longer on it", as ive mentioned before my neuro wasnt the most helpful last time and now it appears that if this is a sign of MS my MRI that i had last friday was useless as it was without contrast, even though i questioned this when i got there they said we dont have a Dr onsite to prescribe the contrast therefore cannot use it :|
Today is my first day without tegretol and the shocks are still there and becoming more frequent so i will mention this on Monday when my Dr is back from holiday, unfortunately I cannot get in contact with my neuro I just have to wait until they contact me (UK NHS) I can only talk to my home Dr but he is very good and il see if he can get me referred again.
Im wondered whether i should switch on to gabapentin or just stay off med and control my pain with painkillers? just so the neuro cant blame it on anything. as she tends to do.
Wolfe, it's generally a very bad idea for patients to take themselves off medication on their own initiative without substantive doctors' advice. And worse for them to start taking other meds, not knowing the schedule that a doctor would use to taper up on dose. I think you need a doctor's advice and prescription planning on a priority basis (like this WEEK). The same list of symptoms and the questions I suggested to Blue Eyed Girl would seem to apply in your case.
Thank you for your reply, do not worry, before my docter went of holiday we did discuss me coming off the medication and how to do it and thats all im following, also i am going to see another tomorrow to discuss going on to another medication, hopefully gabapentin, and where to go next with regards to this new electric shocks symptom.
Many thanks for your expertise on this, you have pushed me to make more of a noise about this symptom :)