I'm sorry to hear about your pain and frustration. I had similar situation when I saw only a neurologist...I was allergic to Tegretol, then went through all the others - neurontin, amitrip, etc. I didn't get significant relief from pain until I went to see a pain management specialist. He worked in conjunction with my neuro initially to figure out what was best to control the pain. I hear a lot of people say that opiates do not work on nerve pain. I disagree. There is a point for me when the pain is so outrageous that nothing works. If you consider working with a pain management specialist, they might be able to find a med or a combo of meds that give you considerable relief. It changes from time to time, but right now I'm taking a low dose of venlafaxine, klonopin as needed (1 to 2 mgs), hydromorphone (Dilaudid, 4 mgs as needed), oxycodone, and hydrocodone (Lortab/norco). With the heavy pain meds such as Dilaudid, I take 4 for bad pain...when I'm having regular (hahaha) pain i can take the Lortab. I also have promethazine (Phenergan) on hand because the heavy pain always comes with nausea and it stops me from barfing.
TN pain varies so much for me...to the sensation of a toothache or just having a tooth pulled to suicidal, blinding explosions that put me down for days without food or movement. I drink Ensure a lot to avoid chewing. My neurologist helped me as much as he could. TN requires the big guns though, and your neuro can probably recommend a pain specialist that can take your treatment to a level that you need.
Good luck. No one can tell you something doesn't work for you. Even if it's not designed for that intention, if it lessens your pain, then it works for you. I would eat dirt if it made me hurt less, and who cares if someone else didn't think it was helping me.
I have been on Klonipin for over 3 yrs. .5 twice a day. When I have slowly gone off my pain was a 10. In the book Striking Back, is states how that drug is used more out of the states. Yes it’s addicting, however we are not the group of patients abusing the drug. Yes, your body becomes dependant on it. Like any other drug if you come off of it, you must go very slow and be supervised by your doctor. Its the one drug I can take. I have tn2
I found that clonazepam (Klonopin) was very effective for “burning strips” type pain. I much prefer diazepam (Valium) for general achy, dull pain. It is quite effective when taken orally for me, but I don’t want to take it very often as benzo dependence is not a good thing. So I only use it on very bad days.
Currently I’m using diazepam as part of a topical med and it works okay. I would encourage anyone who get results from an oral benzodiazephine to try it in a topical formula.
I’m also trying very hard to get a topical formulation of carbamazepine. My doctor is willing to give me the oral form, but not so much the topical–go figure!
I get a compound cream from a specialty pharmacy. It has 6% gabapentin, 10% ketoprofen. It used to have ketamine 5% in it. But after 16 months of usage I had a lot of side effects. I did some research on Ketamine and withdrawal,
And it was very scary. I got my doctor to take it out of my cream. I had severe burning skin, muscle pain, tightness in back of head. Pain in back of head. Insomnia. Lost weight.
I wish I had research this drug before using it long term.
3 weeks later my symptoms are gone.
I am sure ketamine worked on the pain a lot, but I did not like what I read about it.
Also, the speciality Pharmcy never gave me any info of this drug like a regular Pharmcy always does.
Actually the sides effects were really withdrawal side effects from not increasing it when it stopped working on pain from
Atypical TN from dental work. **
I had to get my compound cream changed this July 2017 after 16 months of using it, I was doing great until 3 months ago when it stop working on pain and I started having withdrawal symptoms- insomnia, loss of appetite, increased anxiety, and burning skin.
These were the same symptoms that I had in 2014 withdrawing from Lyrica.
However, this time was a lot milder than the Lyrica withdrawal.
I had my doctor increase the Gabapentin but I had him take out the Ketamine.
I got the compound cream from others on this forum. My doctor went over the different mess for compound cream. He said that Ketamine was a numbing agent,
However, I was very upset when I tried to research the withdrawal from Ketamine. It was very frightening.
But I made it through by tapering the old cream and increasing the new cream.
My main symptoms were anxiety and burning skin. I was surprisingly better in 2 weeks.
I am very pleased with Gabapentin and
Ketoprofen compound cream.
Less side effects and easier withdrawal.
I also take Doxepin (trycyclic antidressant) 25 mg. 3 times a day.
I also use capsician cream(otc) morning and at night in front of ear and back of ear, and I use lilocaine (otc) on face and sometime directly on teeth when pain is very bad. But I try not to swallow any.
I hope that I can continue using gabapentin with slow increases over the years. If that quit working, I am afraid to take any antiseizuure mess since I am super sensitive.
Your imput on the forum has help me a lot. I am not in much pain and I am still working. The pain this second go round has never been as bad as the first year I experience. I pray it doesn’t get worse.
I keep looking here for new ideas how to treat this.
Xanax always helps my ATN pain but my doctor only want me to use it occasionally. I understand him, and I don’t want to have to go through another withdrawal.