It has been a while since I commented on the site. That is basically because I have been in a stage of remission for almost a year. I noticed a few weeks ago that I was beginning to experience more and more TN experiences.
The oddity is that since the onset of my condition , about 2012 or 2014, the condition always seems to wriggle out of the remission state every year in the fall of the year. . Its like an unpleasant anniversary of sorts because my condition started as a result of a dental procedure in the fall of the year.
As far as relief of my condition, which was neurologically diagnosed at its onset years ago, I rely solely on CBD and cannabinoids for relief. It works for me! I also have come to believe and rely upon mild exercise. I am fortunate to be able to walk and ride a bike. At its most extreme distress,I use a heat pad on the area of my lower left jaw and that side of my face. Also, I highly recommend NURAGEN cream.
I hope others with these TN experiences can find something to work for them. The drugs never did for me and the neurologist (I used to have) did not believe I could find any relief except the pharmaceuticals.
I also would like input as to those who have experienced remission and if there is any significance, scientific or otherwise as to the “anniversary” issue of my condition starting back up at a certain time .
I have started using a very tiny amount of Ashwagandha oil.
I will deep my finger into a cap only once to put on the back of my neck. It works great. But you can not use It all the time because you can build a tolerance, I will apply at bedtime and no pain at all the next day. Must take a few days off .
Research it. It does make my heart race and raises my BP especially a few days off. My came from dental work in 2013.
Also, start very slow. It could give you a headache if you don’t start with a tiny amount. I got one the second day so reduced the amount and I was fine the next morning.
I bought mine from Amazon called Banyan Ashwagandha Bala oil - it is organic. 12oz. Bottle,.$26.99
Congratulations on doing so well with your TN! I had “anniversary pain” every February at first, a mystery as to why, until I learned it was due to the cold temperature of Colorado winters.
My pain was also exacerbated by having severe TMJ at the same time, which I didn’t realize was part of my problem. I tried OTC meds and even medical marijuana, which didn’t help, nor did CBD.
I ended up in the hospital after a very bad episode of not being able to eat or drink, and I started prescription medications then, some good some bad. So eventually, I had Gamma Knife radiation. The combo of all this helped quite a bit, yet it was adding duloxitine that took the pain fully down. That was in 2017. Now I’m trying to see if I can come off the duloxitine because of some possible side effects, we’ll see…
I still do worry when the weather starts to change, in anticipation of winter. And February never goes by unnoticed. It’s a kind of PTSD that comes over me, and that I hope one day to overcome…
And now I see you wrote “remission“ anniversary. Oops! Never mind…
You’ll see in some of my other posts research that links the cause of TN to a viral infection in the nervous system. As the cooler fall weather comes on and cold and flu season moves in, your immune system goes down slightly and the dormant virus activates causing the flare up. To avoid, I’d try immune boosters throughout the fall and winter. Check my other posts for more info. I’ve been grateful to be able to completely eliminate all TN symptoms without drugs, and stay 100% pain free for years. Wish that for everyone on here…
Blessings!
I too went into remission after drugs(Trileptal and gabapentin ) and several months of acupuncture. It was a great feeling to wean myself of triletal and tremors with it… However it was much more difficult with gabapentin so I ended up with just reducing the dosage. I am reluctant to go back to acupuncture because of covid. Anyway after last visit to neurologist I felt a ping after I left and telling him how great I was doing. Maybe it started a few days before. Now I have been medicating myself and back to same level of both drugs but as I said reluctant to go back to acupuncture… This time it has presented differently than before with a long burn in my right ear and jaw. I have repeated the steps with my dentist and ENT with no problem noted from them. I hate this stuff as it seems to wear me out physically… I am also using tramadol HCL 50 MG. I really hate the Drugs and I am not interested in surgery because they can not seem to offer a decent rate of full healing. So as soon as I am able to overcome the hesitation to return to acupuncture I am hoping to stumble back into remission. I am 73 years old and overweight. Staying busy helps and my wife is being nicer…
The same thing is happening to me. 2 pills an night, i slept through the side effects and I was fine. No I’m under a great deal of stress and it’s getting worse and worse and I’m taking more meds. I could hardly drive this morning. I’m going to have to start taking Uber!
My neurologist told me in the beginning of my TN journey seven years ago, to expect flare ups as the seasons change (all four in our State). The flare ups settle down as the day by day weather becomes more consistent. Good luck!
Hi Linda99! I’m glad that you’ve found something that seems to work for you. Here at Ben’s Friends we focus in on research based treatments. One of the most important pieces of using any alternative strategy is to consult with your doctor about this. Some seemingly harmless alternative treatments can be quite harmful. As a matter of fact, only knowing what you have written here about Ashwagandha oil, it doesn’t seem harmless to me at all. You need to build a tolerance to it, and it raises your heartbeat? This is not something to try out, and sounds potentially quite harmful. It also sounds as though it may interact with some other meds.
I will repeat clearly. Any herb or supplement should be used ONLY in consultation with your doctor, not based on any recommendation here.
I used to be able to purchase the cream as well as the tincture by the same name from the local pharmacies. No longer. I purchase it on line now. It is to be used externally only, as a cream and/or tincture.
I do agree with you. I don’t plan to use it long term.
I misspoke about the rapid heartbeat and high BP.
I actually experienced this on the second and third Day when I did not use the oil. It was actually withdrawal after using it 5 Days. I am trying to use it less but it does give Me the best relief I have found. I am super sensitive to all the drugs I have been on. I can handle the constant pain but not the horrible jabs. I am on Gabapentin now at low dose compound cream which helps but I keep reaching a tolerance on it. I have had some bad reactions to Lyrica and Trileptal. Terrible withdrawal from Lyrica. PAWS. I am in my 7th year of atypical and Classic TN on both sides - bilateral.
Hi coachjt - I too am in remission. My original onset was fall as well, then meds for a year, followed by remission and ability to stay off meds. Since then, I have had very, very minor flares each fall. My neurologist told me that this is a thing that happens, and that they don’t really understand why. I am experiencing it now, and it always worries me that it will turn into something bigger - but so far I have been lucky. Good luck to you as well!
Nuragen…cream and tincture. I apply it externally to the area on my left cheek or jaw. CVS and Walgreens used to have it but I get it online now. Good luck.
I have been suffering from chronic TPN since 1994 on the left side of my face, tried meds, then I found a great chiropractor and as long as I went once a month I could live with the pain, about twice a year I would have a terrible flare and go on a steroid, and I have kept off daily drugs. I thought that would be my life until I died. Then by chance I read about Ashley Black, and the face blaster. It has to do with facia in your body. I was scared, but thought what the heck. I watched the video, warm up my face, put some cleansing cream ( you can use any lubricant) and lightly, went up and down quickly about 20 times on each side of my face. I swear to you I woke up the next morning with the pain decreased 80%! Now there are still bad and good days, I still see the chiropractor, I still have flares, and still go to the neurologist once a year, but this little device is a game changer for me. I even have hours with no pain at all. I just wanted to share.
My neurologist told me the same thing about seasonal flare ups. I have found it takes a couple of days of consistent weather conditions for my TN symptoms to settle down.
