[jessicaann0707]

My mom suffers from TN. She's tried Lyrica, Neuronin, and Tegretol. Tegretol was the most recent and the side effects were so bad at 200 mg that after a week she said she physically couldn't take it anymore, so she stopped the Tegretol. She was getting no relief from the meds. She has a very high sensitivity to medications, in general, so it's no surprise that this is an issue.

I try to be there for her as much as I can; I'm 29 and live on my own-although only 30 min away. But I just wish there was more that I can do.

I'm hoping I can get her to register on this site for some support from people who have experienced TN; I feel like it might be real theraputic for her! She's very down, and at her wits end. This "episode" has lasted several months without letting up, and she's saying that she keeps having to think about me and my brother to give her strength to even go on.

Anyone have any advice on meds? Any known meds out there that have lower side effects?

Also, does anyone have any experience with TN in the Shreveport, LA area? I really wish she could find a neuro dr in this area that was familiar with TN, instead of diagnosing her out of his book.

I think its so great that this site exists; God bless you all. You might see me around more

-Jessica-

[Burntmarshmallow]

hi Jessica. What A great friend and daughter you are to come here seeking help for your mom. Bless you.
I am sorry for your moms pain and all that she you and your family are going threw.
I know there are many ,medications that help...sometimes it is a combo of meds that help control this. You named the 3 most common ones but there is plenty others so do not give up hope!
You should get the book "striking back" you can get the info on how to order it from the t.n.a. site ...in the stickies at the top of this forum..there is TONS of good info in the stickies too.It would be good if your mom got on, joined here and could connect with others who are dealing with this too.
A site I go to just for T.N. has a list of neuros and doc for t.n. it has many states on the list I will see if I can find one for your area and I will pass the info to you.
Know you ,Your mom and family are in my thoughts and prayers. I hope your mom finds her way here. it is a great place for support info and meeting kind caring people.
low pain and sunshine to everyone on your end.
PEACE
BMW

[Jeanc]

Hi, Jessica,

Good for you for trying to help your mom with this - hard to do this kind of research when you're in pain.

Below are my notes from a TNA Conference presentation on Meds used for TN. Several TNers I know are on Trileptal, a cousin of Neurontin, that has lesser side effects. Also read through the sticky threads at the top of the forum and see if there's anything in there that helps.

As for neuros in your area, there are two TNA support contacts in LA who may be able to help you. Check under Patient Support at www.fpa-support.org

Or, Dr. Henry Gremillion is dean of the LSU Dental School and is the former Director of the Facial Pain Center at Univ. of Fla. and he would probably know any good TN-knowledgable neuros in your area. Just call and say you found his info on the TNA Web site and your mom has TN. His contact info is on the TNA Web site under Medical Advisory Board.

If you have any trouble getting through, let me know and I'll see if I can help.

Good luck to you both!
Jean


List of 20 Meds used for TN -

These are my notes from a National TNA Conference (Portland in 2006) presentation by Dr. Joseph Vaughn, a pain management doc, on Medical Management of Trigeminal Neuralgia. In 25 minutes he covered more than 20 different meds! As always, check with your doctor about anything that interests you, including dosages and combinations!

"He recommends patients keep a pain diary, and he acknowledges seasonal variations in pain. He'll use adjunctive narcotics until pain is under control and then avoids them unless necessary again. He'll adjust to test for remissions and taper to the lowest effective dose to reduce side effects if unable to discontinue them completely. Prefers monotherapy (one drug at a time) but will go to polytherapy, esp. with Baclofen (as adjunct).

Meds he discussed and my notes (which are very incomplete - for more info check your favorite drug website, or the one at the top of the page (above the flowers) Drug Info) -

Carbamazepine/Trileptal/Tegretol-XR/Carbatrol - felt to work in 70-80% of TN patients, with 90% experiencing significant relief within 48 hours (!). Note: this was where he said he rarely uses generic meds due to the variation in strength - which he said can be +/- 40%! (Could explain why some people don't get relief until they get to higher doses...just me conjecturing.)

Dilantin (phenytoin) - can be effective if Carbamazepine doesn't help (but not if there's a rash in reaction to CBZ).

Neurontin (gabapentin) - very effective, well tolerated, can titrate rapidly, take 3-6 times/day and up to 2400 mg./dose.

Lyrica (pregabalin) - New, longer-lasting than Neurontin and as easily tolerated. Good results for TN and ATN.

Baclofen (lioresal) - good booster, 2nd line med. Can be used at >300 mg./day.

Keppra (levetiracetam)- not usually front line, yet. No drug interaction so good in combination. Well tolerated.

Lamictal (lamotrigine) - slower titration. Easy to tolerate. Good if nothing else works. Don't use with Depakote --> rash!

Zanaflex (tizanadine) - good for sleep; adjunctive.

Orap (pimozide) - more effective than Tegretol, but more s/es - adjunctive?

Depakote (valproic acid) - sodium blocker, weight gain, drug interactions.

Topamax (topiramate) - good for migraines and so for TN.

Zonegran (zonisamide) - "remains to be seen" - watch for rash.

Gabitril (tiagabine) - good for 6 mos.; adjunctive.

Klonopin (clonazepam) - sedating, addictive, difficult to taper.

Clonodine - adjunctive, lowers BP, patch? Polytherapy.

Tricyclic Antidepressants (Elavil, Pamelor, Desyrel, trazodone) - sedating - use at bedtime. Adjunctive.

Selective Serotonin Reuptake Inhibitors (SSRI antidepressants) - Prozac, Lexapro and Celexa are rarely effective in treating pain and could make worse. Cymbalta, he said was disappointing in his practice except for some for severe, lancinating pain. Zoloft and Paxil sedating - good at bedtime.

Namenda (memantine) - Calcium Blocker. New one - very exciting, he says, but remains to be seen how good for TN.

Campral - New and untried, but exciting.

Cytotec (misoprostol) - no serious side effects, easy to use.

Topical Capsaicin - can be effective and used with oral meds but messy - requires gloves. "

There were also talks on Compounded Transdermal Delivery (custom formulated creams) and Botox injections. So there are more and more things to try, folks. Do your research and if something looks good, bring it up with your doctor.

[jessicaann0707]

Thanks so much for the responses. We're still struggling......even more now. Things have gotten considerably worse. Mom was forced to resign from her job and now doesn't leave the house unless it's for a Dr's visit. She's got a multitude of other issues now, as well....which we think may be all related, but the Dr's she's seeing are trying to treat the issues individually. And there's been no forward progress....

I hope things turn around soon.