Wondering if anyone has had any luck treating the more “neuropathic” aspects of some of our conditions, either medically or surgically. While most surgeries or medications aim to get rid of the most painful neuralgia like pain, I’m hoping some have had success as well with burning, tingling, crawling sensations. So has anyone who had these sensations get complete relief of them?
Main reason I ask is I have been using capsaicin cream and it seems to help a little with the pain, but the aforementioned strange burny buzzy crawling things on my face 24/7 drive me relatively insane. Might not be incredibly painful, but if there is hope of one day waking up to a face which feels, well normal, that would be the greatest day of my life!
I’ve had the burning reduce with medication.
I am heading into winter (australia) so it will be interesting to see if it stays controlled. Last year was miserable but I’m hopeful that the burning won’t return as strong.
I also hope there is that one day with no kind of pain. I have all of the above symptons plus more. Left eye and feeling os swollen lips, sore gums, etc. along with your same feelings. Is there any hope for someone with AD. Apparently that is what I now have after MVD> I guess I'm in that 3# that is left with Anesthiesia Dolorosa. I hate it. Last night I cried myself to sleep which hapens several times a week. No one understands it. I'm just plain tired of all this after 13 yrs. I don't even think my husband understand anymore how bad it is. I guess he is just tired of my complaining. But who else is there. My grown children aren't even aware of how I suffer. I have become good at covering it up. Maybe that is why it is so bad at night. Still having all those crawly feelings as you do. I only wish someone could help us. But I truly have not much hope anymore. Good Luck. I hope it is not as bad as mine.
I’m so sorry that you have all those sensations on your face which are driving you crazy. I have a lot of burning and other weird face and scalp “events” as well. Nortriptyline is somewhat useful.
I don’t know of any other medications to help with your sensations but I am wondering if you’ve been to a pain clinic that has a MBSR program. Mindfulness Based Stress Reduction is used in pain clinics and hospitals all over the world now. MBSR will help a person cope with chronic pain. I think you can also download many free intros online. But guided courses are wonderful and have a high success rate.
Thank You, May I ask what dosage you are on? I have tried Elavil (another tricyclic ) in the past, but I only got up to 25 mg for a week or two and quit because it wasn't doing aything.... I might ask to try again at a higher dosage and a longer time.
I checked out MBSR, sounds interesting.... The pain and sensations can be a mind game, if I keep my mind busy I tend to not notice them as much... so that might be right up my alley! I've also looked into Biofeedback which sounds a bit similar.
I've actually been off any meds for a while and just trying to deal, but I am going to the Cleveland Clinic Headache and Facial pain center next week. Trying to get a feel of what has worked for some here and I should bring up.
Bellalarke said:
Hi JoeE
I'm so sorry that you have all those sensations on your face which are driving you crazy. I have a lot of burning and other weird face and scalp "events" as well. Nortriptyline is somewhat useful.
I don't know of any other medications to help with your sensations but I am wondering if you've been to a pain clinic that has a MBSR program. Mindfulness Based Stress Reduction is used in pain clinics and hospitals all over the world now. MBSR will help a person cope with chronic pain. I think you can also download many free intros online. But guided courses are wonderful and have a high success rate.
I just added the nortriptyline recently and am at only 10mg. I take anywhere from 2700-3600 gabapentin as well. I tried adding trileptal but had to ditch it because of complications. I think what needs to be remembered is that our body size can make a difference in dosage. I am 5’5" and weigh 128 pounds. And am really sensitive to the serotonin re uptake inhibitors (SSRIs and NRSIs like cymbalta) and have had wild complications with them so that is not an option for me. If you’re a fairly big guy, you might need more than 25 mg of amitriptyline to get to therapeutic dose.
The MBSR kind of thing has been really useful to me. It simply helps teach you not to get too interested in what is happening with the sensations.,this does mean that you ignore them, that’s out of the question, they must acknowledged, but then not dwell, not heap sensation with a too much emotion, because the more worked up we get the worse the pain and sensation gets. It is not a cure, it is an aid to coping. And yes, like biofeedback in a way.
If you check it out please let me know how you’re getting along with it.
Good to hear you’re going to a pain clinic. As much as we hate being on the meds, they are most often a reality we need to learn to live with while searching for other solutions or waiting for surgery or for medicine to come up with something better.
Thanks all, good info…. I’m a fairly big guy (6’5” 270ish lbs) so I’m guessing the 25 gr amitriptyline wouldn’t have done much anyway.
Also interesting to see Nortriptyline being prescribed more than amitriptyline arounf here. Found a study they both relieve pain about the same, but the Nortriptyline seems to have fewer side effects. Probably makes more sense to go with that. Guessing amitriptyline is initially more popular because of more controlled studies.
I hope to have surgery to decompress the peripheral nerve where my injury was at (I have Trigeminal neuropathic pain than classic TN). I’m hoping they find compression or something and are able to free it. Guessing there would be some damage from being compressed for so long, and figure it might be good to be on medications if that happens to calm the pain down and help regeneration … I saw topomax can actually help regeneration , so I might ask Nortriptyline/ Topomax combo for the time being if it's possbile. B vitamins couldn’t hurt either!
While on the subject here is that very recent study on Topomax/ Toprimate could help restore nerve function after after decompression of the nerve (Note-this is peripheral nerve decompression after facial fractures). Wonder if the same could possibly help with MVD's
I am trying Hydroxyzine 25mg 3 x a day. It has multiple treatments. It treats my anxiety, my itching and tingling, as well as my vomiting. So far I am impressed that I might be able to trade in 3 meds for one. I still burn but I don't feel the crawling as much.
So yes, I’m just guessing that 25 amitriptyline wasn’t hitting the mark at all.
I’m having some extra dream activity from the nortriptyline but it is settling down. That was the big drawback for with amitriptyline when I took it fifteen years ago for a different pain condition, I couldn’t tolerate the second nighttime life I got with it.
I will check out the topomax. Thanks.
JoeE said:
Thanks all, good info…. I’m a fairly big guy (6’5” 270ish lbs) so I’m guessing the 25 gr amitriptyline wouldn’t have done much anyway.
Also interesting to see Nortriptyline being prescribed more than amitriptyline arounf here. Found a study they both relieve pain about the same, but the Nortriptyline seems to have fewer side effects. Probably makes more sense to go with that. Guessing amitriptyline is initially more popular because of more controlled studies.
I hope to have surgery to decompress the peripheral nerve where my injury was at (I have Trigeminal neuropathic pain than classic TN). I’m hoping they find compression or something and are able to free it. Guessing there would be some damage from being compressed for so long, and figure it might be good to be on medications if that happens to calm the pain down and help regeneration … I saw topomax can actually help regeneration , so I might ask Nortriptyline/ Topomax combo for the time being if it’s possbile. B vitamins couldn’t hurt either!
Funny you mentioned the dreams….Stared on nortriptyline, 10MG at night but will go up every week or so. No benefit so far (way to early) Only side effect so far is mild dry mouth at night, and strange weird dreams. I’m guessing it has more or less to do with the sedation factor, and possibly knocking me into a deep REM. Not that tired during the day, but I wake up feeling rather strange and agitated because of the dreams.
Side note, I don’t think the capsaicin is really working. Seemed a bit at first but it might have just been nice weather/ low pain cycle. Bummer. I’ll give it a few more weeks.
Funny that there's more people mentioning strange dreams on medication! I had that side effect from Lyrica...I had nightmares daily although I wasn't able to remember them when I woke up. I also sweated heavily during night when on the Lyrica, but I never found out if it was because of the medication or the dreams. Both sweats and nightmares stopped very soon after I weaned off the Lyrica.
Capsaisin cream sent me over the edge with pain. I hated nortriptyline every second of it, and I gave it a year. Klonopin helped me a lot but really addictive and turned me into a zombie. I was up to 4mg and saw my body crave it so much. But it helped the nueropathic part of it. I decided to come off it slowly over the next 2 months for more energy. I now have dreams of smoking cigarettes.
Capsaisin is strange, when I first applied it would burn like crazy bring the pain up high (7), but once it got absorbed I’d get knocked down to a 2. Now it seems it just does nothing but burn for a few minutes. Maybe my initial “success” was just relief from the burning sensation.
What’s maddening about nerve problems is what meds works very well for some people doesn’t work at all on others. I realize everyone is different, but from a scientific standpoint you think there would be more of a solid middle ground….. It’s almost like the bell curve on overall medication success is either flat or inverse.
That buggy feeling is unsettling. I had a lot of strange feelings in my scalp that drove me nuts. I also had this strange feeling around my right cheek. Neuro upped nortriptyline to 50 mg. and it has helped. It seems like everyone has to find their own mix of meds to maintain sanity. Best wishes for a resolution.