Great news for you!!
Over the past 6 years I have battled this horrible condition. During this time, I had 2 very painful bouts but now am pain-free, so happy to say!
Acupuncture treatments worked initially to quell the pain; I’m also taking tegratol, 200 mgs 3x daily.
September 2023, after a rough summer, I discovered colostrum (a supplement) in powder form! 2x daily, I whipped it up with 4 ounces of water and drank it. 2-3 days later, the pain dropped from level 7-8, to 1-2, thank the Lord!
February 2024, I discovered Lysine, a supplement, 500 mgs, 3x daily! Since then, I’ve dropped the colostrum. Now I’m only taking lysine and tegretol——ZERO pain, really! My plan is to slowly titrate down the TEG, then take only lysine (my sister has the same thing; she has successfully done the above)!
For me, cutting way down on sugar, dairy, and wheat also probably factored into the pain leaving. ALSO, daily praying helped for certain.
Despite your pain, there is great hope for you and I am a witness!! Try my approach - you can get normalcy back! And pray! Lord help you!

Thanks for the news about medicine.
I'm new - just diagnosed this past Tuesday by my PCP .

I'm trying to learn as fast as I can. I'm stunned, and have asked myself why did I get this?.

I've had sleep apnea for 20 years now, and use a bipap machine.
Also, I've had allergies that require me to get a weekly shot.

I don't deserve another disease! whose name I never heard of, and is fairly rare - I think about 180,000 in the U.S. have tic douloureux.

Now I'm trying to find a specialist in my area (of SW Virginia)

JP

What is taking my PCP so long to find a doctor who treats TN? Its been over a week now and no referral has been made. I'm getting impatient.

I think I will look online and find a neurologist who TN treats and see if can get an appointment. I know, from reading posts here that the first thing they will do is to prescribe tegretol. I need to get started before my pain gets worse!

At present I'm not having too much pain, but I know it will get worse, according to what I've been reading. Remember, I'm very new at this.

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