I wish I could find lasting relief. The best meds I've found all weaken over time. Some faster than others.
I take 125mg nortriptyline, 60mg cymbalta, 150mg effexor, and 40mg oxycontin per day. I'm in the process of switching the cymbalta for effexor, I've taken 120mg cymbalta for 8mo+.
Nortriptyline and effexor seem to help the most for me. I've tried oxcarbazapine, neurontin, endomethacin, etc with no benefit.
Pretty disappointing. I've been seeing a pain specialist for a few months and he hasn't done anything. I get my meds through the doctor who passed me off to the pain specialist. I wish I could find a pain specialist who specializes in atypical facial pain. Every doctor he's sent me to has said it appears to be related to the trigeminal nerve. duh.
Hi Shindig, What is endomethacin?? I just started taking nortriptyline, did you go up in doses of 25mg each? I was on 50mg but felt to out of it after 3 days , so I went back down to 25mg. I am not the most patient person when it comes to being a zombie... I know everybody says, it goes away in time, but who has a couple weeks to a month to put their life on hold so I can be in zombie land? I know I don't. Did you gain any weight on the nortriptyline? I feel like taking Topamax with it, because Topamax makes you lose weight and nortriptyline makes you gain weight, so I thought together it would be a wash, lol. That's a lot of meds that work on serotonin there... I hope your dr knows not to give you to much and not to give you serotonin syndrome.
Shindig said:
I wish I could find lasting relief. The best meds I've found all weaken over time. Some faster than others.
I take 125mg nortriptyline, 60mg cymbalta, 150mg effexor, and 40mg oxycontin per day. I'm in the process of switching the cymbalta for effexor, I've taken 120mg cymbalta for 8mo+.
Nortriptyline and effexor seem to help the most for me. I've tried oxcarbazapine, neurontin, endomethacin, etc with no benefit.
Pretty disappointing. I've been seeing a pain specialist for a few months and he hasn't done anything. I get my meds through the doctor who passed me off to the pain specialist. I wish I could find a pain specialist who specializes in atypical facial pain. Every doctor he's sent me to has said it appears to be related to the trigeminal nerve. duh.
Yeah I've gained 50lbs since my MVD last april from nortriptyline! I was a beanpole before so now I look normal, but I wonder what 10 years will be like...
I started on 10mg, then 20, 30, 50, 75, 100, 125, 150, then back to 100 and added cymbalta and lately been at 125. I split the dose half at night and half in the morning.
Increasing it was the best relief I've had. But after a month or two I need to bump it again. Lately Ive dropped cymbalta by 60mg and added effexor, and it seems to help almost as much as the nortriptyline. I've been on 40mg of oxycontin for 4+ months and it's not nearly as effective. I work full time, it's hard, I had to work an all nighter this week, 35 hours straight, and slept for 20 hours yesterday and today.
I've had the face pain for 2 years and 5 months now and it's hell. Doctors are worthless and I've been to A LOT (dozen+), spent thousands and thousands of dollars and haven't gotten anywhere at all.
I saw Dr. Casey once, drove 7 hrs to see him and he deals with both type 1 and type 2 stuff. In his video that I watched again, he even says that MVD's can help with Type 2 pains... He is awesome.
Jturn49 said:
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!
Yes I remember Shindig, you work so hard at your job , only to burn it away with having to pay the bills for all these xrays and testing , that never even led to any med changes.... and then you have to see so many providers and have so many follow up appts,,,, yes, I remember, your story is very moving because I could feel how frustrating it must be for you. I am lucky in a way because I am poor, lol, and I have Medicaid or state insurance, which is actually a pretty good insurance, 3 dollar co pays, who can complain about that. I am concerned about the weight gain from noritriptine because unlike you when you started, I am not a bean pole, lol, I am already 10lbs over weight and I don't want to gain anymore weight, I am only 5'1. So it sounds like the MVD didn't work in your case, or only took some of the pain away? Can you get it again??
Shindig said:
Yeah I've gained 50lbs since my MVD last april from nortriptyline! I was a beanpole before so now I look normal, but I wonder what 10 years will be like...
I started on 10mg, then 20, 30, 50, 75, 100, 125, 150, then back to 100 and added cymbalta and lately been at 125. I split the dose half at night and half in the morning.
Increasing it was the best relief I've had. But after a month or two I need to bump it again. Lately Ive dropped cymbalta by 60mg and added effexor, and it seems to help almost as much as the nortriptyline. I've been on 40mg of oxycontin for 4+ months and it's not nearly as effective. I work full time, it's hard, I had to work an all nighter this week, 35 hours straight, and slept for 20 hours yesterday and today.
I've had the face pain for 2 years and 5 months now and it's hell. Doctors are worthless and I've been to A LOT (dozen+), spent thousands and thousands of dollars and haven't gotten anywhere at all.
I had an MVD even though I have atypical pain because they saw compressions on the MRI. It helped 100% for 8 weeks, but I'm sure some of it is shock from having a serious surgery. Bill to insurance was $74k initially lol cost me a couple grand.
I'll go just about anywhere if I could find an atypical guru. My current pain specialist specialized in neck and spinal chords....doesn't know squat about faces. Had a follow up with the tmj specialist the pain guy sent me to and once again he said it seems to involve the trigeminal nerve and not the tmj muscles. He'd given me muscle relaxers but I couldn't feel anything from them. So we both agreed it's not muscle pain. He didn't schedule a follow up.
Currently I don't even have a follow up with the pain specialist. I'm just in the air, I have a follow up with the shrink, and in 6 weeks I'm supposed to see a physician assistant or something. But I'm just being pushed around and nobody has had anything to try differently or anything.
where do you live?? I would go see Dr. Ken Casey in Trenton, Michigan. I am very surprised they saw compressions on your MRI, do you know if it was a fiesta MRI ? with or without contrast? I am not even sure what all that means, I have just read other folks saying that stuff..lol. I know Casey does the MVD's on folks even if he doesn't see anything on the MRI. I really liked him. He actually cares. So rare to feel that in a dr. now a days. Dr. Casey even talks about how dr's like to push their pain patients away to other drs in his video that is on here in the video section. you should watch it and see if you like him. My only problem is that Dr. Casey was my very first dr. I saw for TN and then he told me to get another dr. locally and he could consult with this new dr... well, since I saw the best, the rest of the dr's I have seen since suck big times... I will be meeting my 3rd neurologist in a couple wks because I fired the first two. The first 2 didn't know anything, but the only way I realized they didn't know anything, was because I met a dr. that did know what he was doing and now I can tell the difference. And there are Huge differences...
I'm in Seattle. I've fired neurologists, my first neurologist came to a diagnosis of "Tolosa-hunt syndrome" but the treatment didn't help, the ENT said Eagles syndrome, almost had surgery for it, nobody will actually say anymore. We have agreed on neuropathic pain, but little else.
The compressions were noticed on my 3rd MRI...basically an artery and a vein were wrapped around the T nerve strangling it. They decompressed it and things were good, but then I ran out of my meds for a month with my bullshit mail order prescriptions, similar to my recent situation with them, and I never got back to the level of relief after I began taking the meds again.
I've had 3 mri's of the brain with contrast, a CT of the brain, a 3d CT of the neck, an MRI without contrast of the neck, and Xrays through my mouth of the back of my throat. I also had a spinal tap, and thousands of dollars in blood tests. And no answers or even potential answers.
wow, that's crazy...so if you were decompressed so to speak, and they moved the artery and vein away from your Trigeminal nerve...doesn't the dr. tell you to go off all your meds now and see if this was successful??? I don't know, I have never had an MVD. But some folks on here get the MVD and go off meds and they are pain free. ah man, as I type the pain in my teeth came back with a vengeance and the dull buring starts in my cheek..God Bless Ameica I am so sick of this and I have only had this for a yr... I cant imagine yr after yr of this crap...Why does it always get worse at night?? sorry, going off on a tangent here. What the heck is toloso hunt syndrome?? or eagles syndrome? and why does every disease have something to do with an animal or hunting??? Yeah, Seattle is kind of far from Trenton, Michigan isn't it. but heck with all the money you can save by not going to all these other yahoo docs that don't know what they are doing, and paying for xrays that r a waste of money, you could pay for a plane ticket to Michigan and back... Dr. Casey is willing to consult with your local dr. after your initial visit with him, if you can find a dr. whose ego will allow them taking advice from another dr... I haven't found a local dr yet who can set their own ego aside , but I am still searching....