I’m just wondering what causes us to go in to remission. I’ve had a couple of remissions since I was diagnosed 5 years ago. One of those lasted a year and the pains started back again a few months ago. I’m just very interested why the pain goes away like that. Thanks.
I have heard of remission, but I have no idea. I didn't experience it. Unfortunately, there is no where near enough research going into TN. Its not a killer like cancer. So the killer diseases or disorders take priority. Email Red directly and see what he says.
I think stress plays a large part in the level of pain and if you meditate and exercise it can help..Prayer as well!!
I agree with StephenLMT. Stress always...always seemed to make an attack occur. I'd start to feel an attack coming on and I'd notice my muscles around the back of my jaw were tightened. I didn't even know it. I'd have them tense and unaware. Forcing myself to relax them seemed to help. I agree with StephenLMT also on prayer ! Sometimes I would earnestly...and I do mean earnestly ... pray that the pain and sensations be taken away. I'd pray with much more seriousness than a prayer I would otherwise do. In short time I'd be asleep.
I have been very curious about this as well. I had a 10 year remission after my first bout of TN 1, which was very very intense, but responded immediately to Tegretol. Gradually weaned off the Tegretol and pain was completely gone. Year and half ago had a fairly moderate bout, which also sort of faded away after about a month with using Tegretol. This time around it feels like it is not going to go away. Very high dose of Tegretol, but still have constant twinges. The only thing I can guess, is that the vein or artery’s, must somehow get pushed aside or changes position or something, and then they go back to compressing the nerve again. But I still can’t figure out how it is so intense, and then goes away completely. Please keep this discussion on the forum, so all can benefit, thanks.
Hi, I had about 9 months of horrific TN pain on my left side. Then, in the same week, I did homeopathic remedies and medical hypnosis with a "blood flow" specialist. My TN lessened dramatically and was pretty much gone within a week. I had a light attack maybe 1-2 times a month. This remission lasted 14 years and I had lots of stress during that time with moving, work, other health issues, etc. Then, earlier this year I got the signs of more frequent light to moderate TN pain again. At one point my tooth pain was severe. I have been doing various homeopathic remedies for it and am able to keep the pain levels low so far. So, I am not sure why it comes and goes. However, I believe the hypnosis really helped. Hypnosis can deal directly with stress--subconscious stress included. My hypnotist has retired, so I am not sure what I will do if this flares up really strong again. And, of course, I am just guessing at what has been happening in my life. I have plenty of other pain that distracts me. :) Good luck to you! I hope that remission happens for everyone. It's a blessing.
I just found this. It's worth looking into for more information on remission. It's a study where remission was caused by use of a TENS unit. Interesting. There must be more information out there! I plan to keep looking and hope you will keep the faith and also search and share. Thanks to all!
Interesting article dreamtree! A somewhat similar concept is the basis for the Cefaly band. It is approved for migraine use, but there has been some discussion of its use for TN (though I do not believe it is yet FDA-approved for that use).
http://www.cefaly.us
I have had some remissions and do believe that prayer is what held the pain at bay.
I also am trying to decide what brings on the sharp stabbing pain and I'm beginning to think it's stress as someone said. I do agree with Kathy that even on the higher doses of Tegretol I'm getting twinges constantly. Only the bad or hard stabbing pain very occasionally. And I really don't want to go higher on Tegretol because of the side effects.
We need a cure!!
Thanks.
For those of you that have taken Tegretol for a long time, you should have your pancreas tested as it can cause pancreatitis.
I am in a period of remission currently, after almost a year of TN1 pain unaffected by Tegretol or Gabapentin combined. My remission was brought on by B12 injections, which I still get monthly. They used to treat TN with B12 injections (for pain control) right up to the 50s and a lot of research was done on it. Unfortunately after they discovered anticonvulsants (and pharma companies made money out of them!) they stopped doing B12 research. A great shame as it worked miracles for me (so far!) and might work for others.
It can cause a lot more than pancreatitis, Stephen! It can bring on drug-induced lupus, which it seems to have done for me. It can cause thyroid problems, destroy your white blood cells and generally produce a lot of nasty drug-induced illness. It's a life-saving drug, but not a kind one.
StephenLMT said:
For those of you that have taken Tegretol for a long time, you should have your pancreas tested as it can cause pancreatitis.
I had a three year remission before mine came back in December of 2014. When Infirst was diagnosed I had lives through seven years of insomnia and three years of intense, excruciating stress. Weeks before I had gone to a naturopath MD doctor about my insomnia that my regar doctor kept throwing pills at that did not work. When Ambian and other sleeping drugs actually make a person hyper, something is wrong.
This doctor found my cortisol levels were sky high and my adrenal glands completely depleted. I had dangerously low Vitamin D (healthy should be 50, I had a 2).
Two weeks later I had my first TN pain.
This time around in December — stress again. Not at the levels of 3 years ago, but it was pretty excruciating.
I am sure there is nothing scientific to back it up, but that is my common denominator.
I think I’m in remission right now. I still have tingling and some pressure but no pain at all. I took my last dose of Tegretol yesterday but I’m still using some topical creams, which I will slowly discontinue as well.
After over two years of having this continuously, it’s been miraculous. Like a lot of people, I wake up with no pain but it starts up within minutes. One day a few weeks ago, the area only felt slightly tingly but the pain never came, and it’s stayed away ever since. I’m feeling hopeful but also scared that something will happen to make it come back.
From my experience, I do not feel stress has anything to do with my bouts of T.N. or my remissions. When my first attack hit into 2004 and with my other bouts of TN, I was not in any particular stressed mode in my life. During my 10 yr remission, I had several periods of extreme stress in my life with no TN. I practice yoga, prayer and meditation, and it does not seem to help in anyway with reducing or eliminating attacks. In fact, I got a very bad attack near the end of a wonderful yoga class, where I was very relaxed in the Shavasana pose. Meditation did help me endure the 45 minute long attacks I was getting this time around before my Tegretol levels got to where they needed to be. I am not discounting in any way any body else’s experience, I am just sharing mine.
Hi Kathy. DO you have any theory of what might make you go in and out of remission, if it's not stress? Have you noticed any kind of pattern, or trigger?
Kathy said:
From my experience, I do not feel stress has anything to do with my bouts of T.N. or my remissions. When my first attack hit into 2004 and with my other bouts of TN, I was not in any particular stressed mode in my life. During my 10 yr remission, I had several periods of extreme stress in my life with no TN. I practice yoga, prayer and meditation, and it does not seem to help in anyway with reducing or eliminating attacks. In fact, I got a very bad attack near the end of a wonderful yoga class, where I was very relaxed in the Shavasana pose. Meditation did help me endure the 45 minute long attacks I was getting this time around before my Tegretol levels got to where they needed to be. I am not discounting in any way any body else's experience, I am just sharing mine.
Thanks for everyone’s input on this topic. As someone above mentioned I too wonder what causes the excruciating pain and then just stops suddenly? Everything about this disease is so confusing that we might not ever understand it all.
My dad developed TN in high school, so 50+ years ago, but wasn't diagnosed until his 30s. He has had off an on flair ups for for the whole time, and I think they have increased with age. Tegratol is the only medicine that works; his docs check his liver enzymes regularly. He says he has not figured out any specific triggers, including stress. I know he has been able to get off the Tegratol numerous times, but goes back on it at the first sign of tingling. A major flair up last fall had him going in for his second balloon compression in December. The surgeon said the surgery "failed" due to unexpected swelling, but amazingly a couple of days after surgery, his pain went away and hasn't returned.
Amazing how everyone is so different... My TN started in 2004; came with Winter and disappeared with Summer for 6 years.
I used Tegretol at different amounts, depending on the pain levels. Then the 7th year it did not come at all. The next four years it came on and off Summer & Winter, whenever it felt like it; but cold always made it worse.... Last year I was on Tegretol most of the year, sometime 800mg/day for months. Any higher I get drug induced Lupus. But I had also started taking B12 1000mg/day and it really did help; as it built up the pain lessened.
Then in December I starting sniffing some essential (anfi-inflam) oils, when the pain started - it seemed to relax me, so I did not tighten up the face muscles and it get worse... I have lost about 7kg in weight (now 60kg) - have been trying to do this for several years, but with the Tegretol and eating to have something on my stomach before taking tablets did not help me lose weight.
We got 3 very hot days in February and it just went away... you can feel the relief when it does.
I still take my B12 1000mg but now 3 times a week ... TN has not returned and we are in mid Winter and its a cold one too. I am keeping warm, using my hot water bottle, staying out of the cold winds, etc
I am sooo delighted and hope its not just a passing whim and comes back next month, next year or so...
One can hope!! But I have all my energy as I do not have to take the tegretol and I am enjoying it & hoping it lasts...
I still get little twinges, (both sides of face & on my nose) but they do not become a full attack..... wonderful..
It is like the nerve is now not touching the blood vessel...
I too have had some very stressful times, but TN I cannot associate with these stressful times...
But I do keep very busy and I am good at blocking out the pain, because I have other things to do and concentrate on them. My neurologist said when you can concentrate on something, your brain can actually block out other things like pain... that is how I have been able to manage it. But I do admit that I know from past experiences that I do have a very high pain threshold, which can help.
Regards
Yes stress is a huge factor for remission!