I have atypical TN. and now I think I have added type 1 as I the shocks have been increasing on the left side of my face where the burning and numbness is. I have tried pretty much all the meds available. I am concerned about MVD having been given low success rates. My neuro suggested Namenda. I read an article that said Namenda has been shown to be helpful for some in the study. Has anyone had experience with Namenda? I'm starting a low dose tomorrow morning. I also have chronic migraine, left side along with TN. I think one triggers the other. Feeling pretty isolated and hopeless. 7 days of pain, burning, numbness and migraine. some relief with migraine med for headache. Xanax at night just to help me to not care. Feeling hopeless right now. But, I'll be up and at work tomorrow...thanks, Camia
None of the surgical procedures generates a lot of success with Type 2 TN (aka trigeminal neuropathic pain). One large scale review of MVD for this category of pain indicated about 35% success for a period of three years average. RF Rhizotomy is also used against the burning, achy 24-7 type of pain, but I'm uncertain of outcome stats.
Namenda is primarily used to treat Dementia in Alzheimers Disease. This is the first time I've heard of it being prescribed for chronic neurological face pain. Level of side effects appears to be moderate. See http://www.rxlist.com/namenda-drug/side-effects-interactions.htm. Certainly a trial period seems appropriate if advised by your doctor. The most commonly prescribed meds for Type 2 TN are Amitriptyline and others in the class of tricyclic antidepressant meds. These meds appear to have a cross-over action at low doses, which is effective in neuropathic pain.
Many people have both migraines and TN pain and report as you do that they seem co-morbid and interactive. The mechanisms involved are still uncertain. Xanax can perhaps calm you somewhat and help you sleep. But I would expect you to be prescribed something specific to migraine, not generic as Namenda appears to be.
Go in Peace and Power
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst, LWTN
My headache doctor tried me on this drug for my ATN V1 pain with associated chronic migraines. It did nothing (sorry) to help the pain, and I do not remember any side effects.
Thanks, as I suspected. Lots of pain today. Feeling really hopeless. Hard to work.
Me too. Just got a massage :) to try and alleviate my neck and shoulder tightness due to the never-ending pain. It sounds like you and I have a lot in common. Friend me on Facebook so we can correspond. It is nice to find someone who truly understands. Lora Smith Romney
Hi. I’m sorry, I don’t go onto Facebook. I can email, though. ■■■■■■■■■■■■■■■■■■■■■■■■.
Flute and Camia. If you friend each other here at Living With TN, you can correspond here. The search engines don't have access to our mail archives.
That’s a good idea. How do we friend on this site?
Look up the person you want to friend on the Members and Mods tab. Go to their personal page. There should be a "friend" tab on the left side of the page. It will send a message, which the other person can accept. Thereafter, that person will appear in your address list when you open a compose window from your mailbox.
Regards, Red
Camia said:
Thanks, as I suspected. Lots of pain today. Feeling really hopeless. Hard to work.
Dennis A. Dore said: I can only sympathize Camia. I have a bilateral ATN within the nose following bilateral turbinate reduction surgery within the nose almost 8 years ago. Only those who suffer this condition can know or understand the isolation, depression and pain the condition causes. I have had 3 micro-vascular decompressions over the course of my lifetime with no beneficial result. I've tried all the SSRI's with no benefit. In the last three weeks I've tried the St. John's wort herb with significant results. I've been able to lower my Fentanyl patch dose from 175 micro-grams per hour to 125 mcg. I'm using an herbal pill made by GAIA herbs. I'm taking 3 doses per day (2 pills in each dose of approximately 1350 milligrams per pill). I'm also using a topical preparation made by a local herbalist of the same herb in olive oil. I apply the drops with in my nose. The effect has been significant. Though my pain is still a 4-5 on a scale of ten, I'm managing better. Sending to you an email hug from a fellow sufferer. Dennis
Camia said:Thanks, as I suspected. Lots of pain today. Feeling really hopeless. Hard to work.
Hi Dennis
Thank you for the information on your medications and alternative medical approaches. I started taking namenda, titrating up slowly. When I started it, I was in another remission, and so could not determine whether or not the remission was due to the medication or not. However, I did develop a head tic, which I feared was parkinsons. My neurologist suggested that I stop the namenda and see whether the pain returns. I stopped it, and my head tics have reduced to almost none. The little shocks are still there, but are very manageable. I believe that the medication did not have an appreciable effect, just another remission. I will consider trying your regimen during the next flare-up. Wishing you less and less pain.
Camia