Atypical medications

Hi everyone-

Wondered what medications have helped others with atypical-burning, aching, cramping, pulling and tingling pain. Gamma knife made worse if anything. Currently trying trileptal and pamelor--anti seizure meds may not work for this? Anyone used baclofen or Gralise(time release neurontin) or other meds? Any input certainly appreciated. Than ks.

Bob E.

With Type II TN pain (or trigeminal neuropathic pain, whose symptoms overlap those of Type II), many patients get the most relief from the tri-cyclic antidepressant meds. That would be Amitriptyline, Nortriptyline, and a few others in the same class. Some folks are aided by one of those drugs plus Baclofen (an antispasmodic), Flexeril (mild muscle relaxant) or low-dose Valium (tranquilizer). Others report positive outcomes with Lyrica or the opioid meds. Methadone while hard to get prescribed, has a legitimate role to play in some patients.

For follow up, you might do some reading in our Face Pain Info tab, Bob. Theres a lot there for you.

Regards, Red

Red--

Thanks for your reply and very helpful information.

Bob E.



Richard A. "Red" Lawhern said:

With Type II TN pain (or trigeminal neuropathic pain, whose symptoms overlap those of Type II), many patients get the most relief from the tri-cyclic antidepressant meds. That would be Amitriptyline, Nortriptyline, and a few others in the same class. Some folks are aided by one of those drugs plus Baclofen (an antispasmodic), Flexeril (mild muscle relaxant) or low-dose Valium (tranquilizer). Others report positive outcomes with Lyrica or the opioid meds. Methadone while hard to get prescribed, has a legitimate role to play in some patients.

For follow up, you might do some reading in our Face Pain Info tab, Bob. Theres a lot there for you.

Regards, Red

Hi Bob,

I tried Balcofen. For me it did not do anything, but made feel like I needed to be admitted to a psych ward; as I started hearing and seeing things that were not there. It was awful. I just finally got weened off of it. Currently I am on Lyrica (slowly building up to 400mg a day at lest) and 30mg a day of MS-contin. My pain level has dropped down from a 1000 down to a 4. Although I have notice I have break through pain a few times a day. In all though it’s easier to deal with a few time verses crazy pain levels 24/7.

I use gabapentin at1200mg/d, but it hasn’t completely controlled it (can’t eat, etc). i tried 600mg bfore witj no help. however, when increased the dose it greatly reduced my symptoms to the “less than suicidal” threshold. some weakness & fatigue, but otherwise tolerable effects.

you can also join the group called "atypical atn" under "groups" page!

Hi everyone-

Lots of burning face pain from eye down to jaw after having gamma knife one year ago. The neurologists treating me have left the area. Anyone know of a doctor in west Michigan that treats atypical facial pain?

From our Find a Doctor page, the following physicians are noted in the state of Michigan. I don't believe any are in the western part of the state.

Detroit:

Dr Zmaorano

Wayne State Univ

Dr. Cohen, pain for management,

Dr. Seid Cosovic, MD.

Royal Oak, MI

Beaumont Hospital

Dr. Pieper.

Trenton:

Oakwood Southshore Hospital

Dr. Ken Casey [Chairman TN Association Medical Advisory Board]

University of Michigan Hospital

Dr. Upton

Dr. Cooper

University of Michigan School of Dentistry

Oral Facial Pain Clinic

Dr. Lawrence Ashman

I also suggest that you run the term "Gralise" in our search window at the upper right. It has come up in discussions before. What dose levels per day are you on? I also advise you that the term "atypical facial pain " is gradually falling out of use, given that it is merely a diagnostic lable by elimination, not a positive medical entity of itself. Given that you've had Gamma Knife, a more accurate description would probably be iatrogenic facial neuropathic pain.

Regards, Red

I recently got TN after my stroke. I have tried Lyrica, Neurontin, Tegretol, and Trileptal. I was so desperate that I am having acupuncture including 12 needles to my face 3X week but to no avail. How long must we suffer?

You may want to ask your doctor(s) if you can try one if the tricyclic anti-depressants, such as nortriptyline. Many type 2 or atypical members are having some success with this class of medications.

I tried many drugs before finding relief with amitriptyline. Everyone is different, but It has been a lifesaver for me.

Already tried Neurontin, Tegretol, & Trileptal, all anti depressants. Still using Trileptal but little help. Lyrica no help as well.

Have you tried any of them together at the same time or do you just try one at a time? It look me almost a whole year to get the right meds/ dosages to even get any relief. Currently trileptal gabapetin and kolonopin. Kolonopin is a life saver for the burning.

My doc won’t let me take more than 1 at the same time. If you take 3 meds at the same time, how do you know which is helping? Currently taking Trileptal which helps a little but not much.



Kari said:
Hi Bob,

I tried Balcofen. For me it did not do anything, but made feel like I needed to be admitted to a psych ward; as I started hearing and seeing things that were not there. It was awful. I just finally got weened off of it. Currently I am on Lyrica (slowly building up to 400mg a day at lest) and 30mg a day of MS-contin. My pain level has dropped down from a 1000 down to a 4. Although I have notice I have break through pain a few times a day. In all though it's easier to deal with a few time verses crazy pain levels 24/7.
Hi Kari, What's MS contin?

Hi Kari,what’s MS Contin ?Thanks!

I’m assuming MS Contin is OxyContin . And I’ve never heard of a dr saying only one drug speedy bird . Most of the time just one medication is not enough . It takes a combination to help. I didn’t start off with all three I slowly added one to the other.

Thanks Jennifer! Will look it up…how are these days pain wise ?

I’m very greatful to not be in excruciating pain anymore but I’m still in daily 24/7 sensation… It’s always there… Just more of a lower intensity . I stay around a 3 if I keep myself busy but I still have my days where I’m around a 4 or 5?. But that’s miles better then the twenty I was at . I try and remain positive … Still have a few days where I want to break down and hate the world … But I cannot I just cannot let that happen. I learned crying sndbeing upset doesn’t help one thing… It actually if anything makes it worse. At one point I wanted surgery so bAd in the beginning and now I’m so glad I didn’t. I get scared and fear one day meds won’t work anymore and ill have to have surgery and the surgery won’t help but make me worse( letting my anxiety get to me) but for the most part I’m great… Actually decided we are gonna start trying for a baby after the good news from my obgyn , so that’s very exciting! I realized if I don’t take this opportunity 100% now I might not ever get the chance again… Like I said I’m always scared I’ll be worse . Who knows though? What if it goes away? Highly doubt it :frowning: just sad to think I have at least 40 or 50 more years of this to go. I always say though God will make sure to give me a pain free life in my next one!! How have you been??!

There are over 70 medications and combinations of medications that doctors may try you on, Speedybird. If your doctor doesn't know that, then it is seriously time to find a more knowledgeable doctor. Be advised also that MS-Contin is extended-release Morphine Sulphate. Oxycontin is extended release oxycodone hyudrochloride, a very different drug. When you deal with opioids do not ASSUME anything. Assumptions can put you in your grave. Self-medication can do the same. You need management of your meds by a knowledgeable licensed physician.

Regards, Red



speedbird2 said:

My doc won't let me take more than 1 at the same time. If you take 3 meds at the same time, how do you know which is helping? Currently taking Trileptal which helps a little but not much.