Has anyone been prescribed Namenda for TN pain? I have a Titration Pak sitting on my night stand but have not made the final decision. I hate the idea of yet another medication to make me unproductive and still be in pain. My doctor suggested adding 20 mg of Namenda each day. This would be in addition to 600 mg of Lyrica, 100 mg of Nortriptyline and 6-8 10-325 Percocet each day. I also take other medications for other issues. I have had so many bad experiences with medications in the past two years for TN. If you have tried this regime, whether it worked well or not, I would appreciate any feedback you can offer. Thank you. - Richard
Richard, I've taken 14 different medications and am fairly active on 2 forums and have never heard of that drug for TN. I did a review of it on drugs.com and the common side effects are enough to steer me away from it. I am interested in what others have to say about it.
Hi Richard, I've not taken it or heard of it, but life is a question of trade-offs. If you're suffering enough (for your own assessment), you will try it. It may be what you need. The problem of course is how long to continue if you have any side effects, as they may be short lasting while your body adapts, and the drug may need to build up in you. I'm sure you know this anyway. I'd try it knowing that I can come off it if I choose to. But, if you approach it full of anxiety you may well feel worse but not due to the drug! Good luck whichever you decide. Dove
I am curious as to why the Percoset? The leading literature states it would have no affect on Tri-Geminal pain.
I've found opiods to be helpful at times, despite what the literature may say. It doesn't act on the nerves themselves but does have pain-relieving properties.
Othellocop said:
I am curious as to why the Percoset? The leading literature states it would have no affect on Tri-Geminal pain.
After all the other meds (trileptal, gabapentin, lamictal, amitryptilene, dilantin, etc, etc, etc) have failed to help with my pain (recurrent after 2nd MVD and failed Gamma knife) and caused horrific, life-altering, personality-changing, suicidal-thinking, relationship-destroying side effects....I now only take a low-dose long acting opioid. Despite what the literature says, it DOES take the edge off and make me want to continue to exist on this planet.
Othellocop said:
I am curious as to why the Percoset? The leading literature states it would have no affect on Tri-Geminal pain.
This drug is an NMDA receptor inhibitor primarily used for the treatment of Alzheimers. But I have seen some recent articles that it is being studied for treating neuropathic pain. As far as I know though, that would be off-label usage. http://www.ncbi.nlm.nih.gov/pubmed/19196860
i have a narcotic as one of my three meds or cocktail if you may and it is one of the components that i need to keep pain under control. maybe because when you are pain from tn it cause your muscles in head and neck to all tighten up but dont rule opiods out. finding the balance of different meds seems to be what works for a lot of us. along with a procedure if meds dont let you live a semi normal life.
I can understand the anxiety about a new med being added to the mix. I always get anxious when the neurologist even hints about a new med, but I give it a try and if I do not like it I let them know and stop taking it. My MVD worked on the TN, but opened a new can of worms with post-op headaches and other pains in the mastoid/ear area and my surgery was in August of 2012. I am using Lidocaine Ointment behind my right ear now and get Botox injections for the headaches, but neither makes the pain go away 100% -- it just makes life a little more tolerable. I had to take a class 2 narcotic today for the first time in while, but it is because the Botox has worn off while I wait for approval from my new insurance company. So, my Rx narcotics are still here to take the edge off when necessary because there is no "pause" button for me to push here. Best of luck and think positive. HUGS
I would also like to know about Namenda, Grecio
I am hoping the FDA approves Botox for TN. I read where in Europe Botox has already been used for TH with considerable success. Grecio
Mary N. said:
I can understand the anxiety about a new med being added to the mix. I always get anxious when the neurologist even hints about a new med, but I give it a try and if I do not like it I let them know and stop taking it. My MVD worked on the TN, but opened a new can of worms with post-op headaches and other pains in the mastoid/ear area and my surgery was in August of 2012. I am using Lidocaine Ointment behind my right ear now and get Botox injections for the headaches, but neither makes the pain go away 100% -- it just makes life a little more tolerable. I had to take a class 2 narcotic today for the first time in while, but it is because the Botox has worn off while I wait for approval from my new insurance company. So, my Rx narcotics are still here to take the edge off when necessary because there is no "pause" button for me to push here. Best of luck and think positive. HUGS
It looks like it’s for moderate to severe dementia in Alzheimer patients
Thank you all for your comments. I made it to day 16 of the Namenda. The side-effects were hideous and become more frequent and stronger each day. Most of my symptoms intensified and I was feeling very "off." The side-effect that made the decision for me was a loud shrill ringing in my ears that never stopped. I couldn't fall asleep, take a nap, or relax. If I woke up for a second in the middle of the night, the ringing was so loud I never made it back to bed. It was't for me. My doctor was so sure it would help but he also felt that for an Oxytocin Nasal spray that was helping almost all of his patients. I have nasal issues which make nasal sprays a bad idea. I went to the Nose Doctor and he said I have a major issue but that fixing it would make the TN so much worse. Namenda is a new medication that many doctors are using for it's off label pain benefits. As for the Percocet, why not! It's a trade off as opiods cause migraines so it depends on what is hurting the most. When my nerves are burning out of control and I care barely move, Lyrica and Nortriptyline help along with breathing exercises and for me, lying down in a cold, dark area for an hour. I take Xanax if I am in extreme pain because the anxiety can trigger more pain. The Percocet works wonders for the boring, gnawing, piercing pain, just not the burning. It helps with jaw pain, the pain caused by so much facial contortion, etc. When I have a seizure, triggered by the pain, it rips my body apart. Pain medications can make bad day manageable and decent days almost enjoyable. Everyone tells me to smoke weed. I have an RX, this is California, but I just can't see that happening. I have already gained 40 pounds and barely leave the house. I don't think high-quality medical marijuana is going to perk me up!
I have. The pain specialist I saw has made facial pain his specialty, and he says it has shown good results for atypical TN.
Namenda is a drug used to treat Alzheimer's. I have not heard of it being used for TN...that is probably off label usage...but then so many of the things we try for our pain are off label use. I too have had horrible reactions to all of the meds I have tried...and none of them really controlled my pain. I now just take a long acting oxycodone 10 mg twice a day (had to stop percocet because it was starting to affect my liver from the tylenol in it) and 0.5 mg clonazepam at night. All the tricyclics (like nortriptyline) give me such a hangover fog that I can't function the next day.
Good luck...I hope it works for you.
Richard, I've never tried marijuana, but, I thought it didn't just 'perk' you up but actually altered your body's interpretation of pain, thereby reducing it? Your pain level sounds similar to my first three months,( I'd have tried weed given the chance!) Best wishes, Dove.
Weed just made the pain worse, and my weight go up due to the munchies.
thanks for the advice. I am changing the times and dosing of my current medications as I have nothing else to do with my time!! I realize I am in so much pain for 50% or more of the day that screwing with the dosing can't make it worse. I bought some weed from my local store. they take it much too seriously. there are different kinds for different outcomes. i threw them all on the to-do pile and will experiment one day this week. with two kids and two dogs i rarely have the luxury of a lazy day on the hammock. i have the weed, the hammock and the time, i just have to tell the four animals to lay off for a day!
Richard, I seem to have accidentally deleted your own comment about taking weed! But, now you mention your responsibility for two children and two dogs, I wonder if you should be trying it unless you have some-one responsible around or to take them off you for a little while? I really do not know what other effects it can have on individuals as I've never tried it. Best wishes and really hope you can find much improvement asap..
richard_scott said:
thanks for the advice. I am changing the times and dosing of my current medications as I have nothing else to do with my time!! I realize I am in so much pain for 50% or more of the day that screwing with the dosing can't make it worse. I bought some weed from my local store. they take it much too seriously. there are different kinds for different outcomes. i threw them all on the to-do pile and will experiment one day this week. with two kids and two dogs i rarely have the luxury of a lazy day on the hammock. i have the weed, the hammock and the time, i just have to tell the four animals to lay off for a day!
I jjust started namenda 15 mg at bedtime. I was surprised that it works. after only 2 days The problem was that I had severe dizziness even worse than with my meds. I wish I could have continued it.