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ATNispartofme
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Member Since Apr 2017
Location: Everett WA
Posts: 1
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Thumbs up Apr 17, 2017 at 11:28 PM
 
Quote:
Originally Posted by shezbut View Post
Does anyone here have any experience with this illness?
I do, I am 26, I started having ATN (atypical trigeminal neuralgia) 2 and a half years ago. If you haven't heard of it, Atypical sufferers usually have constant crushing, aching, and/or burning pain, rather than the sharp shocks. It is still severe, and it NEVER gives you a break.

I have officially tried a variation of every medication for treating TN, because many of them don't work well on atypicals, we get to try more before we find one that works. Technically I just started my last option so I can't give a good review of that one yet.

There are several medication "families" that treat TN.

Carbamazepine (and sister drug Oxcarbamazepine), Gabapentin, and Lamotrigine are all anti-seizure meds that I have tried. The first made me dizzy, the second caused me severe short-term memory loss and did nothing for my particular pain, the last I am still in a trial on but so far I have had no side effects, but also no pain relief, I am waiting to get to a higher dose before I pass judgement.

Lyrica was the only Fibromyalgia med I tried, but I know there are one or two others. I had the most AMAZING pain relief with this one, but within 3 weeks I was dangerously depressed and suicidal as a side effect, so I had to get off it fast. It also caused increased appetite so I gained a little weight, but after 6 months of not eating much and not sleeping that wasn't a bad thing, but it could have been long term.

Nortriptyline and Amitriptyline are old anti-depressants that sometimes dull nerve pain. I am currently on a medium dose of Nortrip. It makes me sleepy, and "hazy" mentally sometimes, but it has been the best relief for the least severe side effects so far. If my new drug works I might transition off it though so I can feel fully awake again. These two tend to work better for Atypical, but are still an option for regular TN patients.

My best advice is to talk to your doc, there are enough options that you shouldn't have to live with a bad side effect until you have tried several of them. Then, you can decide what level of pain, and what side effects you can live with. I had to try a new med every 2-8 weeks until I got on my 5th try, and decided I could live like that. Then it took 8 months to find the best dose of that medication. It may feel overwhelming, but I am sure it will be worth it!

for a lot more advice head over to Livingwithfacepain.org (I think that is the address, searching living with facial pain will get you there) It is a site dedicated mostly to supporting TN patients, and it was a life saver when I started out.

Good luck and I wish you pain-free days!

-E
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