Hi guys I hope your all having pain free days , can you tell me what dose of carbamazepine your on that stops the electric shock pains ? So far I’m up to 400mg a day which I hear is fairly low , but I’m still getting the shocks ! X
Sorry to hear you’re still getting shocks on 400mg. I know for me I would dose escalate by about 50mg a week every time I had an attack until I was on a dose that I would be pain free on. This would normally be 600-650mg. However if it starts to get quite high (800) and you’re not getting any relief, I would see your doctor for maybe something else to add. When I got to 1000mg carb with no relief whatsoever, we added Gabapentin which I ended up dose escalating to 600mg before being almost pain free. On the flip side, you then have added side effects to deal with.
Hope this helps…
I am currently at 1600-1800 mg per day and I still get random electrical pain. It subsided quite a bit after about the 1000 mark, but after that it was slower to decrease.
Note:
This is a hell of a drug. Take it slow! In my experience I had double vision, shakes, stumbles, basically looked like I was drunk to everyone at work :)
Once you get at your target dose - after about 2 weeks I felt "normal" again.
Hope that helps.
Smash
I am on 800/day. 400 in the AM, 400 in the PM.
It did take me two weeks to adjust to it as well. After upping the dosage, I did not have the initial side effects.
After a year on it, I am starting to have flare ups again.
my PA says I am on the max dosage, I have heard others on a higher dosage here.
She has added an extended release opiate to try to mask my pain
Thank God I am seeing Neurologist April 4th.
All in all, it has provided me very beneficial effects.
Hi Gemma,
Tegretol (carbamazepine ) needs to build up in your system slowly, and this takes time.
The side effects tend to lessen and can disappear once your body adjusts, but each time you increase your dose ( under doctor supervision) your side effects will be present until your body adjusts again.
Each one of us reacts differently to the med and has found relief at different doses.
In my experience, the slow release version worked better for me, 800 mg allowed me to function pain free. 400 mg in the a.m and 400 mg in the p.m.
Since my TN became resistant to meds I am now on 1600 mg of Tegretol .
That is MY max dose. While on Tegretol it is important to have regular blood tests to check for toxicity to your liver. My Neuro does these every 3 months. That’s how we know that 1600 mg is my max.
You will see everyone is on different doses, the key is patience ( which sucks!) and good communication with your prescribing doctor.
Usually 600 mg - 800 mg is when people find relief. But again it’s individual…
Hope you find relief soon,
((Hugs)) Mimi
I am on 1200mg a day but had to split it into 3 doses to keep from being drunk and sick. I still get random shocks with this level, but so far it's doing ok managing my pain.
LOL, when I first upped to 1200 a day, it was to be split as 600 twice a day. I was soooooooo drunk and sick at work! I really shouldn't have driven that day :-D But I made it home and decided to split it into 3 doses and it helps me function. I still get random shocks too. Sometimes more than others.
smashagnome said:
I am currently at 1600-1800 mg per day and I still get random electrical pain. It subsided quite a bit after about the 1000 mark, but after that it was slower to decrease.
Note:
This is a hell of a drug. Take it slow! In my experience I had double vision, shakes, stumbles, basically looked like I was drunk to everyone at work :)
Once you get at your target dose - after about 2 weeks I felt "normal" again.
Hope that helps.
Smash
Unfortunately, I don't think there are any rules when it comes to individual medication. Everyone has to find their own level. Before my MVD, my daily medication consisted of 1600mgs Carbemazepine, 1800mgs Gabapentin, 50mgs Baclofen and 50mgs Amitriptyline and I was still suffering from the most horrendous pain. Been fine since MVD, no pain, no meds.
i take tegretol retard (brilliant name -_-). it wasnt until i wa on 1200mg a day that my pain was almost gone. sadly now fter a year i am getting some pain coming back ...i have been told by a few people that your body can become used to the drug and metabolise it faster making it lesss affective but, there are many on this site that i read have taken it for years with very good sucess too :).
I, like Donna, take 1200mg a day broken up into 3 doses every 8 hrs. (plus neurotin and baclofen)
i hope you find relief soon...
~Mistee
Hi all thanks for all your replies I’m now up to 500 a day no relief it’s just horrible I’m going back to dr tommorow to beg for some stronger pain killers for the mean time , what do you guys take or think I should ask for? I have heard about the patches mentioned before but apparently my doc won’t prescribe those ? Xx
i've been on 1200 carbo for months totally pain free lately I've been having pain. I am so depressed I remember how life was before. I almost committed suicide. I am getting ahold of my doctor he only come here once a month. Kind of a special clinic. I have alot of side effects dizzyness. Some days none others I'm dizzy constanly. He says well you must choose dizzyness or the pain, I choose the latter. He won't do surgery doesn't beleive in it. Hes the only one to go to here I live in a really small town. It never gets easier sorry