Now that I finally know what I have... I am busy doing research about all possible treatment options. I would like to hear from anyone who has tried treating TN in ways other than surgery or anti-convulsants. I started a treatment plan yesterday involving facial/cranial massage, acupunture, and advil. My TN was showed up post root canal and has facial swelling involved as well as TMJ. Thank you.
Hi Sharon - My mom tried some alternative treatment therapies and we researched many more. We tried acupuncutre, and it was wierd. The first treatment left her (my mom, the patient) pretty much paralyzed in the face (out of extreme tightness and fear that the slightest move would set of the electrical bolts). This lasted for several hours. She didn’t talk or move the rest of that day and then was very slow the next day. But then it went away, and gosh, she seemed to get a little bit better after that. So we went again. She got tight again. Not as bad. But didn’t really do anything. The acupuncturist then tried Moxa during some of the following visits. Sometimes it seemed to help, sometimes it seemed to not do anything, other times, it made it worse. So the main story is that every visit was different. I would say it is certainly worth a try. We also tried bio-feedback - was told her TN has something to do with my mom getting Lymes disease several years ago. What we probably should have done was found a naturalist in our area who could look deeper into the Lyme’s thing. But we didn’t find one that we felt comfortable with and so we never pursued it futher. We also were in the process of making the decision to have MVD. Hindsight here is still not 20-20. I have heard plenty of good success stories from acupuncture, chiropractic care, a naturalist, a healer, etc. I would highly recommend pursueing it. The challenge is finding them and paying for them. Good luck in your pursuit of alternative treatments! I hope others here can provide some additional guidance as well as to what worked for them.
-Beth
Hi, my name is Bob and I have Trigeminal Neuralgia.
I have been very busy since January 15, 2007.
My Alternative Treatments include, but are not limited to the fact that I wear my ‘Badge’ http://www.livingwith.org with pride and gratitude, as TN is such a life-altering - (fill in blanks) - Nothing ever prepared anyone of us for this.
Life has new meaning when you deal with this PAIN.
Taking the time to get beyond myself; perhaps, having many bad moments, but never a bad day. LOL I’ve lived through a few of those! LOL = isn’t always, but when you can. : )
My treatment plan includes and I don’t always know, or question to whom; I wake and say, “Please, help me”. Before sleep, “Thank you”.
Throughout my day, I take the time to Cherish Anything and Everything. I enjoy Dreaming While Awake.
Virtual Pain Relief is AWESOME! I Rustled Leaves today and that was FUN!
Taking the time to Share and Care…that’s just a real good option!!! ; ) my love to all, bob
To take each day as it comes, I try to be positive. I smile at strangers when out shopping with hubby. Anything to make me feel better inside. Yes the ache in my cheek is ever present, last night was bad, today so far is good. Found heat pads comfort me. Used to love walking in the autumn when the wind was really blowing. Now I enjoy looking through the window at the changing season. Simple things now give me pleasure, my grandsons hug. My outlook on life has changed so much. Material things are no longer are important. I find a candle burning with a nice aroma coming from it relaxes me. In a strange way this condition has made me a better person, now I know what real pain is. To sit in front of a fire reading a book while the wind and rain lashes the window is now my idea of haven. Relaxation is the key. It does not often work when the pain is bad, but I try. Smile today who knows where we will be tomorrow. I just wish I had thought this when I was young and foolish. Love Margaret.
I have had one treatment of acupuncture at noon on Tuesday. I had 7 attacks of level 10 pain prior to the appointment. I have had one attack since then and it was only pain level 7. Between attacks the baseline pain had been a 5, and as of last night has downgraded to a 3. So far I am optomistic. I am starting on a steroid pack this morning to help with the swelling and have another appointment of cranial massage at 11 am (i did that tuesday morning as well).
it’s interesting; your prolonged testimonial is free from any spelling or grammatical errors, including unusual words like “Trigeminal Neuralgia”, yet your brief response has two spelling errors; simple words like “break” and “tired.” could this be because someone else wrote your promotional?
interesting.
vesper
Leslie Carmen said:
Please don't accuse me of preying on people with TN. I thought our heart was going to brake when we saw our daughter suffer so much, and watching her get more and more tiered with no energy and watching her dreams of playing ice hockey for a great college fade away.
I agree with you, it's a shame that there are so many people out there that just do anything to make money. But sometimes you must take a risk and listen to your heart, like we did. I'm sorry you don't want to see that there is a treatment out there that will help you. All I want is to give my positive experience to everyone out there suffering with TN. I can only tell you again, just call!
Stefanie said:This is the third website I have been on in which the exact same story is told about the laser treatments, with the names changed. Please stop preying on people who are sick and desperate for a cure.
It is a shame that there are folks out there that will do anything to make money. The treatment you are speaking of claims to be a "cure-all", for just about every disease imaginable.
Anyone who is familiar with TN can read the website for this and read how the "laser light" clearly makes no sense and has no place in the TN community except to offer false hope to those of us who are suffering.
Thank you Stefanie and Vesper, At first I was taken in when I read about the amazing cure, because there is no amazing cure. We have enough on our plates without these type of people on site. Love Margaret. On a brighter note my 41 year old daughter has just given birth to a beautiful baby boy weighing in at 8lbx 13ozs her first child after years of waiting.
vesper venustas said:
it’s interesting; your prolonged testimonial is free from any spelling or grammatical errors, including unusual words like “Trigeminal Neuralgia”, yet your brief response has two spelling errors; simple words like “break” and “tired.” could this be because someone else wrote your promotional?
interesting.
vesper
Leslie Carmen said:Please don’t accuse me of preying on people with TN. I thought our heart was going to brake when we saw our daughter suffer so much, and watching her get more and more tiered with no energy and watching her dreams of playing ice hockey for a great college fade away.
I agree with you, it’s a shame that there are so many people out there that just do anything to make money. But sometimes you must take a risk and listen to your heart, like we did. I’m sorry you don’t want to see that there is a treatment out there that will help you. All I want is to give my positive experience to everyone out there suffering with TN. I can only tell you again, just call!
Stefanie said:This is the third website I have been on in which the exact same story is told about the laser treatments, with the names changed. Please stop preying on people who are sick and desperate for a cure.
It is a shame that there are folks out there that will do anything to make money. The treatment you are speaking of claims to be a “cure-all”, for just about every disease imaginable.
Anyone who is familiar with TN can read the website for this and read how the “laser light” clearly makes no sense and has no place in the TN community except to offer false hope to those of us who are suffering.
I agree! If there was a cure like this, we would have all alreadry know about it. 4 1/2 years I have been suffering and have never heard of such “treatment” Thank you Stefanie for your strong defense! I hope that our on line advertiser will take it to heart and stop. Best of luck.
Stefanie said:
This is the third website I have been on in which the exact same story is told about the laser treatments, with the names changed. Please stop preying on people who are sick and desperate for a cure.
It is a shame that there are folks out there that will do anything to make money. The treatment you are speaking of claims to be a “cure-all”, for just about every disease imaginable.
Anyone who is familiar with TN can read the website for this and read how the “laser light” clearly makes no sense and has no place in the TN community except to offer false hope to those of us who are suffering.
Interesting happenings here.
I’ll stick with my original…“My Alternative Treatments include, but are not limited to the fact that I wear my ‘Badge’ http://www.livingwith.org with pride and gratitude, as TN is such a life-altering - (fill in blanks) - Nothing ever prepared anyone of us for this.”
I spell ‘CURE’, c-u-r-e. There is no ‘f’ in ‘CURE’! : ) bob
Thank you Leslie. I was the original post on this string asking for info on ALL alternative treatments. I am glad for any information and feel confident enough in my own abilities to make a decision whether or not they would be worthwhile to try. I am currently having great success with acupunture and cranial facial massage and am surprised at many people on this website who have been in pain for 5 plus years, but haven’t even tried acupuncture? I am relatively new to this pain, but if I was to the point of large doses of drugs for multiple years with it the treatment itself causing my life to be out of control, I would try setting my townails on fire (at least once) if I found anyone that said it worked for the pain.
Please stop the this. I simply wanted any and all information about alternative treatments, so I could make some decisions about what I should do next. I appreciate all who have answered my questions. Thank you Pat for letting me know what alternative treatments you have tried and that they didn’t work at all for you. This is what I need to know in planning my treatment. I did not see anyone saying that long term TN sufferers or ignorant, so I am not sure what exactly it was that upset Pat so much. I did say that I was surprised how many people that i asked directly if they had tried any of these things said no. That is no judgement, just a fact of how I have been ansered while asking around. I am here to seek help and support, not anger and judgement of any info people choose to give. Thank you again to everyone who posted on this as an answer to my question. I realize that all people respond to all treatments differently, that is exactly why none of us should be putting down what may help others, just let each other know if it was helpful or not for them. I am hopeful to have my future experiences with this website to be less confrontational and more supportive. I am dealing with this too, please people… try to be nice.
Thank you! I feel I need all the luck I can get!
Stefanie said:
There is a difference between alternative treatments and outright scams. Good luck on discerning the difference.
This has become awkward and I appreciate both sides of this story.
This is Sharon’s thread - I believe Sharon wanted to know what kinds of alternative treatments are out there that members may have had experience with - fair question. I will answer that question myself shortly, sorry for this Sharon!
Leslie and others - From a moderators point of view and a long time sufferer & member here - What everyone needs to remember is firstly this is not a site for promoting anything, we are purely advice and information - promotional stories do not have their place on a support based site. Leslie, while I am very happy that your daughter is currently pain free, you must understand the remissions that trigeminal neuralgia has - so while I am happy for you and your family that Lee is pain free now, you have now made your point and put across your story and that is as far as it should go, fair enough? So for all of our sakes here - please let that part of the story end and no more on this topic from anyone, ok?
We do appreciate ideas and I know many people like following up all alternative therapies they can - and any treatment plan or regime you are considering should always be discussed with your regular health care professional and fully researched on your own before going into it. No one here can tell anyone else - any other member of something they “should” be doing.
If anyone chooses themselves to try an alternative therapy that is their decision alone - and yes, we are still happy to discuss these ideas here - but keep the feedback to what you did and how it helped or didn’t help. Sorry Leslie, it does sound promotional and I respect that you have language difficulties as you mentioned, so just try to amend your feedback on this therapy treatment you’re talking about to more basic concepts. As I noticed you have also started up a new post of your own with the same story word for word, it does raise concerns for me. I will discuss this in more detail with you later on Leslie. And Leslie, I am sorry if you have taken this as insulting, but as I said I’ll discuss this more with you in a little while.
Everyone please remember the most important thing - while each of us share commonalities with our illness (the monster - TN) there are differences. This is why each of respond differently to different medications, treatments and so on and why there are realistically so many differences for us all as well. So what may work for one person, doesn’t necessarily work for us all. Then there are the different variations to TN itself, hence the different groups we list on the main page.
Sharon, I’ll write in a new window after this my experiences personally.
Best wishes to all for pain free days!
Kerry
Moderator.
Ok, Sharon - Sorry!
First up let me explain my situation. I’m 37 years of age, my TN started in my late teens, and four years ago my TN went from being one sided to both sides (called bilateral TN). I live in Australia, so the medical system and available medications here are different to anywhere else in the world. Basically, Tegretol or Lyrica are the only options that can legally be prescribed to us unless we opt for surgical options.
Now, as for alternative treatments - acupuncture was my first, and my treating acupuncturist swore blue he could cure my TN. I saw him weekly for several weeks and always enjoyed my visits to him, felt nice and relaxed afterwards, used to have a great nap when i got home 
but my TN never changed. Then the treatments became too expensive for me to maintain with my job at the time as I was studying at uni also. So I stopped going.
I have tried different massage therapies, reiki therapy (the reiki used to trigger my TN surprisingly so I stopped that after the 2nd session). The last massage therapist I went to refused to touch me at all when I told her I had a cranial neuralgia and she is a masters graduate in massage therapy!
Another GP I went to used a version of Japanase acupuncture on me using positive and negative energy points in the body and like the traditional chinese acupuncture it just used to make me sleepy. Still, I liked it and saw him for months to get treatment, but during that time my TN symptoms actually were progressively increasing.
I also admit i like the idea that a laser using a version of photosynthethis (yes I went and read the website in detail) is a lovely idea, but for myself personally even if I did have access to that technology I won’t be trying it. 90% of causes of trigeminal neuralgia is by compression of the trigeminal nerve behind the ear area, by veins or arteries laying across the nerve or sometimes wrapped around it. I cannot see the benefit myself of something that says helps fix “inflammation” when inflammation is not causing the problem for “most” people. I know myself I am not most people and demyelination is causing my TN.
I am scared to go to any person that manipulates the cranium or spine like that cranial sacral therapy or chiropractors as I also have osteoporosis, so that means weak bones. My last specialist appointment in that area, the doctor there told me it’s possible as my bones were at that time, that I could have a spinal fracture just sitting in my lounge chair at night let alone anything else, so unfortunately I will not have anyone manipulating me though I’ve heard lots of great stories of success from people who’ve done it, maybe they’ll respond when they log in next.
Sorry for the way your topic turned Sharon, I hope you are able to gain some useful stories on this site and through your thread here.
Best wishes to all for a pain free day.
Kerry
Thank you Kerry for the information. I have heard mostly the same from others who have tried acupuncture. Many said it helped for several days post.
I am an RN and have worked in the medical field for 15 years. I have seen too many cases of healing that can’t be explained to have any belief that just because we can’t prove it means it can’t happen. We know a tiny amount about the human body and it’s healing potential. To me, the placebo effect proves that we can heal ourselves if we believe we can. I also have a strong aversion to medications, seeing firsthand the side effects and long term detrimental effects they have on the body. I will use them when necessary, but not unless I am certain I can’t try a less toxic method first. This is where I can coming from in asking for alternative treatments, now for my story so far.
I have ATN with constant pain and then flair ups (I don’t know what else to call them). I started my treatment plan last Monday, Cranial/Facial Massage 2 times a week, Chiropractor once a week and Acupuncture once a week, as well as a 6 day course of tapering prednisone to help with the inflammation. My western med MD, as well as the other ones and I all are working on the premise that my TN is caused from the swelling pushing on the nerve as well as the nerve being irritated from the 2 root canals and bucket loads of novacaine (with epinephrine). I understand my TN or ATN is different that most, or most likely is. I have not had any more flair up since Tuesday evening and my pain level has been below a 4 since Thursday. I am very hopeful. I have acupuncture again today.
Thank you again for your response. I am giving this treatment plan 3 weeks (as long as I can stand the pain) and then either going to “traditional” heavy drugs if I can’t find any other options before then. I will be researching the lasor option as well.
Kerry said:
Ok, Sharon - Sorry!
First up let me explain my situation. I’m 37 years of age, my TN started in my late teens, and four years ago my TN went from being one sided to both sides (called bilateral TN). I live in Australia, so the medical system and available medications here are different to anywhere else in the world. Basically, Tegretol or Lyrica are the only options that can legally be prescribed to us unless we opt for surgical options.
Now, as for alternative treatments - acupuncture was my first, and my treating acupuncturist swore blue he could cure my TN. I saw him weekly for several weeks and always enjoyed my visits to him, felt nice and relaxed afterwards, used to have a great nap when i got homebut my TN never changed. Then the treatments became too expensive for me to maintain with my job at the time as I was studying at uni also. So I stopped going.
I have tried different massage therapies, reiki therapy (the reiki used to trigger my TN surprisingly so I stopped that after the 2nd session). The last massage therapist I went to refused to touch me at all when I told her I had a cranial neuralgia and she is a masters graduate in massage therapy!
Another GP I went to used a version of Japanase acupuncture on me using positive and negative energy points in the body and like the traditional chinese acupuncture it just used to make me sleepy. Still, I liked it and saw him for months to get treatment, but during that time my TN symptoms actually were progressively increasing.
I also admit i like the idea that a laser using a version of photosynthethis (yes I went and read the website in detail) is a lovely idea, but for myself personally even if I did have access to that technology I won’t be trying it. 90% of causes of trigeminal neuralgia is by compression of the trigeminal nerve behind the ear area, by veins or arteries laying across the nerve or sometimes wrapped around it. I cannot see the benefit myself of something that says helps fix “inflammation” when inflammation is not causing the problem for “most” people. I know myself I am not most people and demyelination is causing my TN.
I am scared to go to any person that manipulates the cranium or spine like that cranial sacral therapy or chiropractors as I also have osteoporosis, so that means weak bones. My last specialist appointment in that area, the doctor there told me it’s possible as my bones were at that time, that I could have a spinal fracture just sitting in my lounge chair at night let alone anything else, so unfortunately I will not have anyone manipulating me
Sorry for the way your topic turned Sharon, I hope you are able to gain some useful stories on this site and through your thread here.
Best wishes to all for a pain free day.
Kerry
Hi Sharon,
Just curious - is your MD is that the same as what we in Australia call our GP, so medical doctor / general practictioner? And in regards to what you said - swelling on the nerve? What is it you both believe is swelling against the nerve in that region? Curiousity is a fault of mine and I’ve spent 10 years searching and researching trigeminal neuralgia, to the point I now know more than my neurologist about this disorder, but I’m always still learning more these days, so I’m just wanting to learn what you and your doctor are thinking here Are you able to explain that further? And what does your neurologist think?
Oh and just as an added point, before I had this TN - I was actually phobic to swallow any tablet, if I tried I’d choke and had great difficulty swallowing it before they half disolved in my mouth and I’d have to spit it back out. I still sit there now with my tablets in front of me for around half an hour before i begin to take them, but at least after so many years I can now (mostly) swallow them without any problems
Cheers ~ Kerry
I just had one comment to mention about chiropractic therapy. I went to the TNA National conference in Rochester, MN this last August. In one of the sessions, they discussed the healing benefits of Chiropractic care - but specifically Nucca. It’s a special type that is very rare and there are only about 20 or so doctors that have this knowledge and practice in the US. One of them practices in the Twin Cities and there were 2 people at the conference that I ended up talking to that were treated by him and he was able to help them tremendously and put their TN into remession. We have not tried it outselves because we were having MVD surgery a couple weeks later, but it would be a good questions to ask your chiropractor doctor about to see if anyone in your area happens to have this additional training.
-Beth
Yes, the MD is the Medical Doctor or General Practitioner. Behind my ear and around to the front of my ear as well as my cheek are all swollen visibly, less so now. Unsure as to the cause other than the 2 root canals, and the TMJD flaring up from all the dental work. I am doing alternative care until my follow up on Dec. 7th with the MD. At that time, if it has not resolved, we will make a plan that includes an MRI and a nuerologist. As a note, when my mother had TN several years ago it was after a car wreck and several skull fractures, she had a large amount of swelling from above that ear all the way down the side of her face. Because of the multiple skull fractures and the brain injury (lost vision in one eye), she was already seeing a nuerologist quite regularly. In her case the nuerologist also felt it was the pressure from the swelling that was causing the irritation of the nerve. I admit I can’t explain it any better… just started researching about a week ago. Whenever there is swelling or inflamation in the tissue, your body delivers more blood to the area to deal with the injury, maybe the engorged blood vessels are the actual culprit?
Kerry said:
Hi Sharon,
Just curious - is your MD is that the same as what we in Australia call our GP, so medical doctor / general practictioner? And in regards to what you said - swelling on the nerve? What is it you both believe is swelling against the nerve in that region? Curiousity is a fault of mine and I’ve spent 10 years searching and researching trigeminal neuralgia, to the point I now know more than my neurologist about this disorder, but I’m always still learning more these days, so I’m just wanting to learn what you and your doctor are thinking here
Oh and just as an added point, before I had this TN - I was actually phobic to swallow any tablet, if I tried I’d choke and had great difficulty swallowing it before they half disolved in my mouth and I’d have to spit it back out. I still sit there now with my tablets in front of me for around half an hour before i begin to take them, but at least after so many years I can now (mostly) swallow them without any problems
Cheers ~ Kerry
I managed my TN by acupuncture alone for the first couple years while taking no medication at all. Granted I was living in Canada and would have had to wait a year to see a neurologist anyhow. The acupuncture absolutely made a difference. I had a great practitioner.
Since moving to the US I’ve mostly managed the pain with Trileptal. I’ve tried a couple acupuncturists but haven’t been happy.
I was getting very regular chiropractic treatments and that made a difference as well. I really need to get back to a better schedule for that. My chiro is also into laser treatments as well. I’ve done a fair bit of reading on my own and I trust my chiro so I get a laser treatment every time I’m there. I can’t say for sure if it’s helping at all but it’s covered by my insurance so I’ll take any opportunity to get any kind of treatment that may be beneficial.
I also try and eat pretty healthy with lots of vegetables and low fat foods as is convenient for me.
I try to remember to take a good dose of vitamins and supplements each day. I include B vitamins, a good multi vitamin, solid doses of CoQ10, Omega oils, and magnesium.
When I’m doing all that stuff regularly the TN is very manageable in conjuction with my Trileptal dosage.