was hoping trileptial - iforgetitall, would of helped,instead gma just lost her mind over the last year.She’s on phenobarb now and doing some better(so cool ) she’s been on just about everything and uses all kinds of stuff. Any ideas PLEASE? She can start cymbalta anytime but only wants to try one at a time. Thanks for any input. Wishing all a good day!
I wish I could offer some help, but I have tried everything and the only drugs that worked on the constant buning pain left me almost zombie-like. Morphine and other narcotics dulled the pain, but I could not function. In order to resume working I dropped the hard drugs completely and just decided to put up with it as long as I can. If someone does have a solution, I would also love to hear about it. Blessings to all my fellow TN people.
noritriptyline 75 mg is supposed to help with the chronic pains... I was taking 50mg of it and it helped with the chronic teeth pain, its a tricyclic antidepressant from the older days that is known to help with neuropathic pain. I'm not sure about burning pain specifically... there is always the topical stuff like lidocream creams
So sorry, like Bob I wish I could help, because I suffered that long long terrible burn for years, way before neuros differentiated the types of pain. My only solution was to up my Tegretol to an absurdly high dose, and even then it didn't totally mask the pain - and of course, suffered all the horrible side effects from the high doses. In the end, like Bob, I tried to just tough it out, but it's very, very difficult. My burning pain was particularly in the joint of the jaw, and I remember thinking that the nerve must have got trapped in there, so I used to try open the jaw as wide as possible, slowly, and then close it again slowly, thinking that perhaps a fraction of a millimeter movement might release it if it was trapped in there. I think it might have relieved the burning pain a time or two, but I wouldn't recommend it as my memory is a bit foggy, I'm just putting it out there. Desperation tries everything, doesn't it? I never took the morphine, I was too chicken, thought I might get hooked or something!
My husband has tried EVERYTHING! Anticonvulsants, tricyclics, lyrica, Cymbalta, narcotics, topicals, you name it. He was getting some relief from ketamine infusions for a while.
The ketamine helped sometimes for months at a time for the constant dull throbbing pain but not the electric shock-like pain. After cyberknife and RFA failed we were referred to a specialist who recommended a MR neurography. I’d never even heard of one. Apparently they only do them a few places in the country. That study showed he had multiple skull fractures at the base (he was in an MVA 5 years ago) with nerve impingement. Finally a source!! He’s had multiple MRIs and CTs in the past but those studies don’t light up the nerves.
I've been on 900 mg of gabepentin, but it stopped working, so the neuro is upping it to 1800 mg. I've been titrating up, and I start 1800 today. So far, I feel stoned, but the pain is still there. This is such a frustrating disease. I don't have health insurance, so I can't get an mri. I doubt that it'd be helpful anyway, given there isn't much they can do surgically to alleviate type II. I'm feeling a little bereft about this. I'm not working right now and need to get a job with insurance, but I have really bad days a couple of times a week, and I don't know how I'll function on those days. I'm also embarrassed because I rub my head a lot, and people just don't understand this disease.
Here in the states, I had a TN facial pain specialist suggest Numenda for my TN2. It is actually used to treat dementia, but in small doses works for TN2. Thing is most insurance will not pay for it. I got it through a drug grant from the company that makes it. It did not work all that well for me, but I have heard others have had great results with it.
I don't know if trying meds one at a time is the best way to test how well a particular drug will work. For many (including me), no one drug alone works but a combo does. I take Lamictal and Hydrocodone, neither of which worked alone. Not nearly as out of it as I was on 3200 mg of Neurontin.
Note: For anyone without insurance, since drug companies had to lower the amount of acetaminophen in painkillers, they can get away with calling them "reformulated" and charge $150 for vicodin instead of around $40 as they did before. Ask your doctor to prescribe Vicoprofen instead. Only difference is it has ibuprofen instead of acetaminophen. It's still around $40.
I totally feel for you. I missed a few doses of my Tegretol and had this pain for about 3 days. It was NOT fun. I have not had it since, but take my meds ON TIME. My dad has had Neuropathy pain for some time and is now into selling a natural pain patch. I would be happy to send you one to see if it helps? I have kept them on hand for a "just in case" and have never used them. I will send them with all of the info so you can see that I am not sending you something crazy. Or I can send you his email and he will send them directly from the company ( he sends the first few for free so that if it doesn't work you are not wasting money). I can't say if it will or won't help, but would be interested to see. Let me know and good luck!
Gabapentin helped me for a long time with the burning and breeze sensitivity. However, I agree withMary L - combos of drugs are better than one at a time. Sometimes thats the only way they work. Good luck!
I actually use Trileptal, zanaflex and gabapentin. I had to work up my doses but narcotics help zero for me… I do much better with Toradol which is actually an anti-inflammatory
This is my dad's email if anyone is interested in trying the free samples of the pain patch. His name is James (Jim) Hatland. ■■■■■■■■■■■■■■■■■■■■ The patches are all natural and have been fda approved. I don't know if it will help as I have not had the opportunity to try them yet on my burning pain.... but they are free, so if they don't. You are not out anything. He will give you all the details about what they are. It is a ligit company. Hopefully I am not breaking any rules by posting this and I hope that it is able to help someone. Kristin
Dear friends,
I’m taking now GABAPENTIN 2,800mg and LYRICA 600mg !!! It’s took me 4 years and very very carefully to try, replace, combo and up and I still fill the electrical current bbbzzzzzz from my right ear through the jaw to my tooth all day. When I have electric shock I’m taking drugs Oxicode.
Hope someone will find cure for all of us .
Dalit - Israel
Lidocaine patches to the face x
Just posted this in another thread as well:
Wife has T2 TN going on nearly 5 years now. I don't know that tramadol would work well for T1 and/or breakthrough pain, but tramadol and clonazepam have helped her more than anything else, and she has tried nearly every option short of surgery. Gabapentin seems to work fairly well, but the side effects of the max dosage (I think 6000mg daily) are much more of a burden than going with the tramadol/clonazepam.
Currently, she takes 200mg of tramadol twice daily, and 0.5mg - 1mg of clonazepam three times daily. It doesn't get rid of the pain, but it makes it more manageable and the side effects aren't terrible.
Thanks for all the suggestions,as most have been tried in different combos 3 or 4 times over the last twenty plus yrs.now trying a few old with newer again.the phenobarbital and lyric rica seem to be helping the most still far from do able.trileptial has not been helpful and side effects tooooo bad! Has anyone heard of vimpat especially for the burning? Thanks for all ideas! We have the tn bible out and will continue our research as to what’s next.gma likes her neuro and surgeon dr. Casey. No more surgeries etc. wishing all pain free days.
Oh... completely forgot about her pain cream. She gets a cream from a compounding pharmacy. 10% ketamine with tetracaine, gabapentin, diclofenac, and maybe one other drug. It seems to help, although a bit expensive and not covered by insurance. Also, it helps to spike it with some extra ketamine if you can manage to get your hands on a few bottles.
I have listening to nerve regeneration music on you tube before going to bed.
Headbands with heat therapy patches,meditation and biofeedback.I try to avoid known triggers.
Went gluten free and milk free.
topical cream (lidocaine and prilocaine 2.5 per cent) put on back of ear,across forehead,around whole TNA area. Heating pad.
Vicodin for higher pain levels. Other drugs only scrambled me but does not help with constant burning pain. Not worth the side effects.
I have RSD with constant burning in arms,legs and feet. Have to push through it. I do not want the pain to control me!
When pain levels severe, I allow myself to shut down until it reduces to tolerable level. I try to focus my mind on sleep,reading,watching a movie,meditation,etc. I try to focus on the things I CAN do not what I can no longer do.
I've been dealing with Type 2 in my lower right jaw (burning, buzzing pain) going on 2 years now. Started with dental implant surgery that injured the IAN nerve located under the bottom teeth. I'm on Gabapentin 3 x 300mg, Cymbalta 1 x 60mg, and Baclofen 3 x 10mg daily. My pain levels are more manageable now, although I still have some really bad days about 5 or 6 times month. The rest of the time the pain is still there, but allows me to function ok. Is much better than before the meds, but I've got a good tolerance for dealing with the "foggy feeling".
I was also taking Tramadol for awhile and I really think it was helping make those bad days much better, but my MD took me off it because it was reclassified as a narcotic and he was afraid i'd get addicted to it.
I need to find a "Real Pain Doctor" that understands Type 2 TN. I live in Memphis, TN and all I can find around here is pain specialists dealing with back pain. I don't mind traveling if needed to find the right person. Any suggestions are greatly appreciated. Maybe Dr Casey in Michigan is the right one, but I'm wondering if Type 1 might be his specialty instead.
Good luck to all. I hope you're having a pain free day!