Hi,
I’m in Israel and the TN it’s very rare disease here, I have I and II TN and I’m after 4 years of suffering !
Unfortunately I’m taking today
2800mg GABAPENTIN !!! And my neurologist ask me to take 800mg more, but I prefer not.
450mg PREGABALIN (lyrica )
10mg ESCITAlOPRAM
And I have all day pain that I can handle with.
When I have “electricity attack” (out of nowhere) I’m taking Oxycode syrup 5mg every 3 hours. And if it continues more than 3 days, FENTANYL patch replace the syrup for 3 days more, and I just want to dye in those attack days.
My feeling is that every Doc. That meet me is confuse and not really meet this TN at all, especially In the worst situation as mine.
Sorry for my English mistakes… I’ll be happy to any idea,
Dalit
Oh no--so sorry to hear of your pain! I don't know if you can find anyone to do the microvascular decompression (MVD) surgery because it sounds like you would benefit. Also-- have your doctors tried tegretol?? A lot of people has success with that. Also some people have success with a pns (peripheral nerve stimulator) it is implanted in your body and interrupts the pain signals... hope you find some relief SOON!!
Thank you for your post, Tegratol was the first drug, I took 800mg and the side effect was awful, the doctors told me that I have no surgery option (after 2 MRI).
Where can I find more about high dosage .?.
I found this. I did a copy and paste from the facial pain TN dna research website. I do not know if he could help you, but he is in Israel.
The team of international scientists is led by Principal Investigator pain research
pioneer Dr. Marshall Devor of the Hebrew University of Jerusalem, Israel.
The award winning scientist has had an outstanding career in pain research.
He has contributed an outstanding body of research, authoring several hundred
papers over 40 years and has been been described as one of those “who view
excellence as a way of life and the fulfillment of human potential as essential
to creating a better world for future generations.”
You poor thing! I couldn't imagine being on that much medication! I hope you get relief soon.