Hi, to all of you reading this!
My name is Deidra, and I recently have been diagnosed with Atypical TN in August. I’m 26 now, and I have been experience this pain since I was 15. I was told it was TMJ all these years. So now that I have been getting medications that actually address the pain, I’m having issues with what is work and what isn’t. I just want to know from you all, if you experienced these symptoms when taking Gabapentin (neurotonin). I was taking Carbamezapine for atleast a month, but I had to stop immediately because it lowered my white blood cell count drastically. Unfortunately, for me this medication did work. I then started taking Propanolol, which really helped with the Migraines. (For those of you who may not know, migraines are usually associated with Atypical TN) I literally got Migraines EVERYDAY, and didnt understand why. It got to the point where I couldn’t drive or function, just sleep with a pillow over my head. So the Propanolol 10mg (morning and evening) has worked amazingly, I have not experienced a migraine for the whole duration of taking it (2 months straight) until I started taking Gabapentin 300mg. I have been taking this atleast 2 weeks straight now, and have recently started taking it twice a day. Instantly I felt a headache creeping in this morning and has lasted all day, that did not happen before. Also, my pain has changed. Instead of been lingering, long lasting searing burning pain (with intense pain triggered by touch/wind or sound) it has evolved to “climax pain”(my signature phrase for this). It has been happening every 4-6 days, possibly triggered by stress, and without any triggers. I feel the wave of pain coming, and I can’t stop it. I just clinch my fist and try to stay as still as possble. I screamed for the first time last night, and cried a little. It may only last a couple of seconds and then is completely gone afterward. I don’t like the frequency of this pain and I’m afraid it will become worse. Has this happened to anyone taking Gabapentin?
A huge relief is Turmerac. I take this, EL- Carnatean (I buy these 2 @ Puritans pride online. They run a buy 1 get 2 free) & also Glucosamine (Buy at the dollar tree) This stops the pain in minutes & lasts for 10-12 Hours All theses are over the counter. & no side effects.
I searched on youu tube & found Dr. Berg. He said if your pain is on the right side of your face tap on the left side of your face in the same area. The pain was gone in 2 minutes. This has to be repeated if it comes back.
To many side effects from the prescribed meds.
Hope this gives you some relief.
I am going to check into surgery this week. I want permanent relief not temporary!
Hi Deidra,
My name is Eloise, I’m 34 and have had TN since i was 19 but only diagnosed at 28.
I’ve had microcascular decompression surgery which I was pain free for 9 months before slowely coming back to the point now where it’s the worst it’s been and I’m considering a second surgery.
I’m currently taking neurontin 600mg 3 times a day and still get pain but it’s the best I’ve found with the least side affects.
The pain every time I get a recurrence is different every time, burning stabbing, sharp, slicing you name it and that is what I️ find so frustrating, you never know what your in for day by day.
You can take a mixture of meds in doctors care of course so it’s a matter of tinkering and find what suits you best, if anything.
Hope this helps, good luck x
Yeah, I’m starting to realize this. Another lady I know has tried the Gamma knife surgery, but it ended up making her pain worse. She’s also tried many cocktails of medication, and has narrowed down to taking Amitriptyline and acupuncture, which work for her. I’m going to completely stop taking the Gabapentin, as I feel it does nothing for me. I will continue with Propanolol as it is a beta-blocker and helps to lower blood pressure. I strongly believe anything stressful (a very minimal irritant) will cause the tinge to start which could eventually turn into an episode , so anything that cause my blood pressure to go just a little, sets off a signal to my nerves somehow.