My results, alas, have not been very conclusive. But I suspect it is because of the glue I used to stick the cloth on the mouthguard - it wasn’t glue, but porous medical tape as Dr. Spencer suggested… and it didn’t seem to work too well. So if you can find some non-toxic glue to use, go for it. Denture glue doesn’t work either.: those wouldn’t stay in place because of the salivating and the capsaicin solution would be washed away too soon. I did however feel an almost agreeable tingling after a few days, it reminded me of when you would fiddle with a soon-falling infant tooth. But the tN didn’t go away. Anyway, I wouldn’t be ready to conclude that Dr. Spencer’s system doesn’t work. I have been in contact with him, he’s a very kind chap who always answers your emails even if it might take a moment. I am in a blissful remission right now and I am using that time to get registered access to medical cannabis edibles.
I have been fortunate enough to find a gentleman in Canada whose company makes sports mouthguards for athletes: he agreed to help me, mailed me a soft clay mix to make my own imprint which I mailed back to him; he used it to make a cast, then a half mouthguard. I too feared the imprint process (I confess having drank 2 pints to gather the courage). It hurt a bit, but far less than I expected. Depending on where you are, I can provide you with their info, or you may want to look for one near you to avoid back-and-forth expensive shipping fees. It was less frightening to do this at home than to a dentist who wouldn’t necessarily get the gist of TN…
So very happy for your remission! May it last for an extremely–years long–time!!
Please do send me the gentleman in Canada’s contact information. If it’s okay, can you share your costs for his services?
Thank you so much for your reply, and explaining your process so far. I will try to find a non-porous medical/surgical grade tape/glue. I agree that the drooling wash away would greatly interfere with the need for the Capsicum to stay in place. I’m still willing to give it a go with his concept.
If I may explain why… I had my first ever Shingles outbreak a little over 2 years ago. It was the result of double, simultaneous exposure to chicken pox when both my children got it at the same time as children (and they’re now in their 30’s). I read about capsaicin being very effective; and wanted to avoid the weeks-long cycle. Found a SALONPAS-HOT capsicum patch, and applied 1for 8 hours daily, for 3 days. It felt really warm, tingly but feels nice itchy sensation. After the 3 days, the Shingles sensation, and capsicum feelings stopped. The Shingles did not progress to the intense pain, welting level, and I had zero post neuralgia pain. I haven’t had an outbreak since. So this helps me to personally consider Dr Hughes, and his own TN self-experiment may be onto something. I’m sorry for such a long post…just grateful for your help, and wanted to offer something that may be encouraging, in return.
Thanks for your wishes! Despite all we hear about remissions never lasting, one can’t help but hope, especially since everyone is different. What reassures me now is that I now have access to medical cannabis which I will take in edible or vape form when the next flare strikes.
The company who made my half mouthguard is Guard2Win. You can contact them on facebook at www.facebook.com/guard2win or by email at ■■■■■■■■■■■■■■■■■■■
The gentleman’s name is Rami. He is very kind and compassionate, so even if he specializes in sports guards, he was most eager to help me. His service was quick and efficient. The whole cost approximatively $125 CDN (that includes 2 s&h fees back and forth). Oh, you can also look up to his video on youtube.
Do try to get some glue. The tape is not easy to remain shaped with the mouthguard and really comes off too easily, which leads you to manipulate your mouthguard cloth filled with capsaicin… I breathed some and nearly choked.
It’s such good news that capsaicin has been helpful to you with your shingles-related TN: if the Salonpas patch helped you, it is indeed extremely likely that Dr. Spencer’s method will do you some good. I persopnally had chicken pox at age 8, not a severe bout, at the same time as most of my elementary school class. Dr. Spencer happens to investigate about the relationship between chicken pox and TN.
Don’t worry about the long post: aren’t we here to help each other as much as we can, not only to share helpless pain stories?
Do keep in touch and let me knows how it goes whenever you feel like doing so.
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Thank you for the Guard2Win information. I’ll explore it–sounds good.
Your recipe experiment also captured my attention. I’m wondering if this might work on TN1. Some questions, if I may…
Where do you get your Capsaicin cream and lidocaine gel? Do you use cotton balls/tissue to hold the mixture in place? Is it painful? Is there any drooling of the saliva/mixture? How has your progress been since March?
I’m happy to talk about my recipe. I’ll come back when I have more time…
I get the both the capsaicin cream and lidocaine gel OTC at a drug store. The cream is “Capzaisin-HP” (for arthritis pain relief) and the gel is a 4% lidocaine roll-on pain relief–I just pop out the ball and pour out what I need. I get a diazepam prescription from the doctor, and just crush a pill or two into about a teaspoon of mix. The gel has polyethylene glycol, so the diazepam dissolves into it fairly well.
I’ve used different application techniques. Started with q-tips and swabbing, sometimes holding the end in my mouth for a while. Currently I use GUM brand rubber tooth picks, and apply it between my teeth. This seems to get to the nerve better.
The capsaicin is hot, but it is not unpleasant at all (at least at .025%). It does make me drool and spit, not attractive, but it soon passes. I’ve tried going without the capsaicin lately (got a little burned out on it, ha ha), but I may go back, it seems to help.
After a month or so, my progress seems to have plateaued. I’d like to get better. I’ve been working on a prescription for topical carbamazepine, and I finally got the prescription today. I’m still evaluating it and working on application techniques, but I would say it is very similar to the diazepam as far as effectiveness.
If your neuralgia is close to the skin (rather than in your mouth like mine), you might have fairly good luck with the lidocaine patches that are made for arthritis, etc… Not attractive in public, but I’ve heard good results from those.
Hi. I also use a compound with lidocaine, Amytriptline, and clonidine, I use a q tip to apply to my sore area. My pain is also from root canals And extractions. It does help me get through the day along with .5 klonipin twice a day
Ajb, I’m curious about how you got that topical prescription–a neurologist? or dentist? Have you tried any type of topical benzodiazephine?
Carbamazepine turned out to be a bust after all that effort, my original recipe is much more effective over time. But I’m still looking for new ideas for topicals to try.
I got it from my facial pain doctor. Different combos have been tried, some with capsaicin, gabapentin, he wanted to try lyrica in it, but the cost would have been 200. I pay 67 and it’s good for about 2 months.
And i didn’t know a topical benzo could be in a compound.
We might say that, at least temporarily. It isn’t because it might not work though, but more because I lacked one accessory, namely the glue to stick the bit of cloth with: Dr Spencer has advised me to try porous medical tape, but it didn’t remain in place very well due to the salivation, so the capsaicin was mostly washed off after ten minutes. Then I would accidentally breathe some of it and choke half to death, which triggered more pain. So… medical tape doesn’t work. We really need to find an efficient, non-toxic glue. Right now I’m in blissful remission and I also have access, from now on, to medical cannabis which I haven’t tried yet. I will advise with the next attack. How about you?
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I am delighted to hear about your remission. May it be extensive.
I’ve yet to get to try. My product went missing once it got to my part of the world. I’m awaiting a replacement. Hopefully, I can discover the right tape, and have my custom mouth guard. Regrettably, I’m still actively flaring. But the pattern has changed somewhat. I’ve cried, and trying to remember there is a light at the end of the tunnel…remission, cure, something!
Please tell me, do you have a way of knowing that remission is close-at-hand? Or do you just awaken that day, and experience no more pain?
So sorry to hear that you ave to deal with yet another delay. God knows I know too well the distress we feel with every added day of delay - especially an unnecessary one like that. I sicerely hope you will get some rewarding relief from your explorations.
You’re right, there HAS to be a solution, a cure better than what is being currntly offered by conventional medicine.
In my case, the path to remission is a long one. The pain has been very slowly decreasing feom the end of last February to one month ago, with slight peak episodes in the spring. It went from the 100 or so unbearable electric shocks changing into burning stabs, each one lasting approx. 45 seconds, from my trigger zone in the palate to the nose, upper lip and cheek, all the way to my eye (it would twitch and fill with tears sometimes) to a sensation of cold on the top of my head; that was at the worst; then, improvements gradually became needle pricks to my upper lip and pain when I would attempt to chew even soft food; that very, very slowly went away… 50, 35, 22, 17, 9 pricks a day, going slowly duller and lasting less… until, to my utter relief, I was surprised to be able to bite into a soft toast again!
Personally, the weather seems to play a major part in my remission. The parttern seems to be that flare-ups occur more in winter.
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Alderville first nation has a 4 direction medicine shop that just opened up.
Lots of marijuana product .
You will find that there are not a heck of a lot of edibles available with a legal script.All dried and oil-unless you know different.