Happy thanksgiving, Connie. Happy Thanksgiving Deidre who has given us this opportunity to frankly advise and report to each other about what can help this most horribly painful condition.
I am back on a Homeopathic remedy which does seem to help in about 3-5 days. I am also on 2 injections per week, until I get tests to see why I can't hold or absorb the B vitamins like most people.
I need to find a way to take sublinigual Methyl B12 and the B complex vitamins orally, instead of the expensive injections. I am very terribly afraid of needles and don't seem to be able to do it myself. Even giving it to myself, it would cost about $100 a month from a safe and reputable place I trust. It only costs about $20 for 2 months for the oral Methyl B12.
The doctor can't figure out why this form of B12 )dibenzocide)hurts my nerves more and wonders if it is something else in the product. But 2 different products with the same version of Active B12 hurt my nerves, so I am staying off it.
To report: my nerves are better, much better today. Only feel a little symptoms, nothing worse. When I stop feeling any symptoms, I will get off the homeoathic remedy (which has almost saved my life this past year-but doesn't really heal the problem-just masks the symptoms)
SO I need to find a sublingual B-complex that doesn't have PABA in it. I am allergice to PABA and find alot of people are as well. IT can almost put me in anaphylactic shock, so I have to not buy the same B complex you use. My doctor says to try to get a sublingual form of B complex-yeah, good luck without the PABA.
Any way, also, my doctor says it should be safe to augment my injections with 4000-5000 mcg of the Methyl B orally a day, and a B complex, when I don't get the injections that day. It can't hurt you since your body gets rid of any extra B12 it doesn't need.
I would advise people to try the Methyl B12 who have any nerve, brain, problem to help them, cause it is pretty safe.
It lease I haven't had a full=blown attack since I used the homeopathic remedies. My last full-blown attack was when I was diagnosed with TN almost 2 years ago, (in Feb)A day I will never forget.
Hope this info helps others. If anyone wants to buy homeopathic remedies that help with the pain safely, until you can figure out what med plan works for you best, then others can log into: biogetica.com. Try the $55 kit-it should last about 2-3 months--it is safe and it really takes the pain away.
Have a wonderful holiday,
(Calgary, Alberta, Canada)
Hi Pat ; Thank You! I'm not a professional practitioner, I'm someone who has had many conditions over the years, and has tried a great many substances to alleviate them, like folks here. I came looking here in my searches through the internet a couple of years ago, and found what I consider to be one of the great inventions of this century, really. Deirdre has designed this forum so that people can report their findings, positive, negative, inconclusive, etc. , so that we may better understand their effects. We are specimens in the best of ways, who share this information with each other. This is a very intense theater of the real, and it takes a lot of bravery for us to reveal our conditions to each other, but it can be most healing. ( I admit to feeling a lot of embarrassment after I post). I see these qualities in your posts, and I look forward to reading your results with whatever you find in your ventures.
Even though our posts are anecdotal, we can learn so very much from this. So again, Thank You Deirdre for creating this marvelous forum!
You mentioned you have been taking B12 for Trigeminal Neuralgia. What kind of B12? Is it sublingual and is it methylcobalamin and what is the amount? do you take it orally or thru injections? It sounds good if it can help you back to being pain free in 2 weeks.
I need to buy some of this to have it on hand to take myself. I am also thinking of chiropractic care with the neck, since I have heard that this helps too.
I do not know what words I can say to let you know how much I appreciate your help. My doctor will not be in til Wednesday, and I have been having quite a few short shocks today and worried that they will get worse. I will have to wait for an injection and am not sure if I can keep affording them. They wind up being about $200 a month, so for the short term it is ok, but long term it is hard.
So I went to our natural supplement store. I did not buy what you take, since I am new at this and thought it would be hard to divide and break them apart. (the 5000 mcg) But I did get B12 Methylcobalamin, 1000 mcg that you place under the tongue and it melts pretty fast. I have taken 2 of these and will probably not take more for today.
I also got a peppermint flavored Coenzymate B complex with only B6 with 10 mg only a pill. It also contained folic acid at 400 mcg and also vitamin B12 from dibencozide (co-enzymated) and some other Bs such as ribloflavin, niacin, thiamine. I think I have enough Bs for the day and will see how I feel tomorrow morning.
I have acquired 4 auto-immune diseases since I contracted drug induced lupus a few years ago. So the no-gluten diet is helping to free me from these symptoms, but obviously not the TN. I got the lupus from an allergic reaction to Osteo-Biflex. Can you imagine that? Yes, I also have knee arthritis but have found some naturopathic remedies to heal this as well. I am a work in progress, but have learned alot about health and supplements on my road to a life with less pain. You have helped immeasurably, because lets face it, what is worse than Trigeminal Neuralgia?
Sometimes the B vitamins don't get absorbed as well because of low stomach acid. So supplementing carefully with hydrochloric acid and pepsin can help --and can aid in your body carrying the Bs to places it needs to be. Sometimes citric acid and vinegar is an alternative to the hydrochloric acid route as well.
My doctor feels that one shouldn't have to supplement the rest of their life for Trigem Neuralgia, but with Trigeminal Neuralgia, well, let's face it, vitamin Bs ain't a bad thing such as the drugs that disable your other organs. And you can know that your myelin sheath is healing in the process, which is a good feeling in itself.
I hope these oral Bs help me. I was really needing some help today and I am so thankful to God that I found this website, with someone as knowledgeable as you. Are you a Naturopath or something?
God bless you,
The trigeminal Neuralgia has been coming back since my injections dropped from 2 a week to 1 a week. Trying now to determine if I have a malabsorption problem (I am on a gluten-free diet now-only 2 weeks) and also going to be tested for metals. ) I guess the no. of injections I have had have put most people in remission, except me.
I also found that vitamins that have high amounts of the B12 ((adenosylcobalamin), another active form, seemed to cause me more pain just yesterday. (I couldn't figure out why my pain was so much worse yesterday, until I checked out the B12 ingredients and reread your online info) So I am stopping this now.
If I start the sublingual B12, I will probably need close to as much as you do. (is that about 4000 mcg? daily-what are the mgs dose equivalence?) I wanted to ask you for the brand name of the Subliminal Methyl B12 and the B complex you take. Is the B complex subliminal? Also how long have you been taking these?
Do you have malabsorption issues too? Have you tried a gluten-free diet? Been tested for metals? Or have you tried Milk Thistle, which enhances the body's liver to absorb nutrients? Have you ever tried Homeopathic remedies for the control of symptoms? I have also heard that Ashwagandha (east indian herb for stress) greatly benefits people with this nerve disease. I know it helps me a little. It is an actual ingredient in the formula, Trigical, which I think is from Denmark and marketed that it stops the pain of Trigeminal Neuralgia.
Where did you come across the knowledge to try subliminal B12? Hope some of my comments can help you too. Is there a way we can get each others email privately?
It is good news knowing that there is hope to heal these nerves. Most traditional doctors can't agree on the cause of this most painful horrible condition. Most MRIs don't really show it and only rule out a possibility of it being a brain tumor. Who wants to go for brain surgery with so many risks and little, if any, long term relief?
Looking forward to your comments. They have given us all hope.
I have been getting the injections and the last 2 have seemed to irritate my nerves a little. they did help with the Trigeminal Neuralgia and I wonder and am so thankful that I came across Connie's entry about B6-be careful that this can irritate the nerves if overdosed.
I am off all shots and meds now and feeling pretty good so far. Time will tell. I don't know if the injections of B12 and the B complex vitamins put people in remission or not. I have had 19 injections so far and probably only needed 17. After the last 2, is when I felt some nerve irritation. I am concerned about it being a slight overdose.
People can go indefinitely without any other meds or shots for Trigeminal Neuralgia or in the case of a few, just need a maintenance dose-only 1/3 of the cases need a maintenance dose of once a week, after 2-8 months from stopping the injections. 2/3 need nothing more indefinately, I am not sure what part I will be.
I go to my Naturopath later to talk about this. I wonder about the subliminal B12 and B6 and if you are supposed to take them everyday forever?
Hi Pat ; It's great that you've found relief from TN, as it is one of the most shocking of pains... Now, you've reached another hurdle, the question of whether to maintain nerve health with supplements. It's true that too much of one can disturb the balance of the others. I can only guess what you personally may need, but I'll try to help you with a method of finding this. If you have had no other signs of B12 deficiency, particularly ones such as balance problems, numbness with tingling, vision disturbance, incontinence, etc. , then you may need less than other people (such as me).
If the cause of the TN was a mechanical injury, such as dentistry, then you may be fine by continuing good dietary practices alone. If there has been chronic exposure to heavy metals, such as mercury, or to noxious gases, there may be more of a need for regular supplementation. If there is a malabsorption problem, that so many of us may have, then regular supplementation can even be a lifesaver. Although many people can take large amounts of the B's and have no problems; they excrete the excess, I have to take them in a more measured way. I take a smaller amount with each meal. I'll divide a cap of , say a B-25, and take 1/2 of that with a meal. Some of the B's, such as B1 and B6 can be helpful to nerves in the right amounts, but irritating with high amounts. I have a high need for B12, so I take extra, 5000 mcgs. of sublingual methylcobalamin every day, or I begin to suffer nerve damage. Even though there are people that need much more than I, it looks like many more people need much less than this to maintain nerve health. Some people thrive with 1000 mcgs daily, and many may find that they need B12 two or three times weekly or less. I suggest that you watch for the return of symptoms, even the slightest twinge may indicate a need for more regular supplementation.
Hello. Searching different ways to treat and/or cure trigeminal neuralgia. I see on your site that people are praising vitamin b12 for this. However, when I go to supplements and search b12 on your site, the benefits of taking this vitamin do not list TN at all. I am recently diagnosed with this and am trying to see light at the end of the tunnel. Why is that?
Hi Anna; Since I posted in both the TN and B-12 sections here, I feel I should write. When I search Earth Clinic for info, I check ailments sections, but I also use the search box because there is so much of an overlap with conditions and treatments here. I duly respect the Editors here, and I feel a little sheepish because I have not made filing easy for them. I also want to elaborate more about B-12 for you that you may best benefit from its use.
There are several ways and types of B-12 to try, and I haven't tried them all, but I'll suggest what has worked best for me. I haven't tried injectons. Some people require them even weekly. Cyanocobalamin is most often used, but it must be converted to active forms by the liver. Methylcobalamin is an active form of B-12 that is most often recommended for neuralgia. I take sublingual Methylcobalamin now daily. I divide a 5000 mcg. Lozenge into 4 parts and take a wedge 3 or 4 times daily. Even though B-12 is supposed to be stored in the liver and tissues for use by the body, mine doesn't do this. B-12 is also easily destroyed by gases and pollutants. This method doesn't make scientific sense, but it works for me. I did try another form of B-12, dibencozide, (adenosylcobalamin), another active form, but it increased the pain in my nerves, especially the mouth. I do recommend also taking a B-complex with sublingual Methyl-B-12, but try a smaller dosage to see if it is agreeable. Some of the B's can irritate nerves if the amount is too high. I don't have any more than 25-50 mgs. of B-6, for instance, as I've experienced nerve pain from it. I tried the "P5P" form of B-6 and also had pain. This may not apply to other people, but I caution people with any sort of nerve pain.
After trying several regular treatements for trigeminal neuralgia in all 3 branches on boh sides of my face, like antidepressants and anti convulsion medications, I ended up with no less pain and a truely scary list of side effects. Not wanting to undergo surgery due to the amount of my face involved and my still young age, I was about 18 when it started, I decided to start looking for alternatives without having to resort to iffy branches of alternative medicine.
In cooperation with 2 friends of my parents, a doctor and a physical therapist, we did a lot of research and ended up with a combined treatment of stimulating and strengthening my facial and neck tissue and high doses of B12 vitamins and omega3.
In addition I started on an extensive, but non straining exercise program to regain my overall health wich had suffered from years of severe pain that often prevented me from doing anything for days or sometimes weeks on end. I also dropped the regular medication since the side effects were so severe they were a problem in itself. Although my recovery was not speedy, I started to notice improvement after about 3 weeks. The pain was still a prominent factor in my life, but was less and less out of control. After about 2 months, I had a virtualy painless period that lasted for about 2 weeks and a half. This may not seem like much, but to me that was the first real painless period in 2 years. The pain came back, but from then on periods were shorter and the pain didn't peak as often. After about 6 months, I had gotten to a point where I could start picking up my life again. severe pain periods only occured about once a month or less and only lasted 2 to 3 days. Verry mild background pain was still present though. I continued the treatment and am now virtualy pain free, not needing the facial stimulation treatment and on far a lower dose of B12 and omega3. If I do feel pain comming up again, it is never as severe and it is enough to up my daily dose of B12 for about 2 weeks to be completely free of symptoms.
(Cape Coral, Florida)
(London, United Kingdom)
(Saint Helena Island, S.c.)
(Fountain Inn, Sc)
(Fountain Inn, Sc)
(Saint Helena Island, S.c.)
I disagree with Oscar on the B12 issue. The synergy between BHT and B12 was independently conformed by Ward Dean decades ago. BHT is lipid-soluble, B12 is water-soluble, so they work in different compartments in different ways. But both are classified as antiviral (catabolic, aerobic, acidifying) by Emanuel Revici's metabolic schema.
I had a shingles outbreak in my 40s due to allergic/toxic exposure to urethane adhesive. Trigeminal outbreak, two of three nerve paths, which responded quickly to BHT and B12. At 24 hours, the redness was dramatically reduced. By 48 hours, it was almost natural skin color. BTW, my outbreak was highly atypical in not being in any way painful. No pain, no itching, no neuropathy, only skin lesions. I had natural chicken pox as a child, so this outbreak was likely shingles. It was diagnosed as shingles by visual inspection by MD. And no shingles outbreaks since despite 25-30 years of aging.
I've been dealing with TN for over a year now. During a recent episode, I downloaded a free binaural beats app to my phone that included a pain killer/healing track. It has been incredibly helpful in easing the pain enough that I can function. I don't know whether it really works or if it is a placebo effect, but as long as it lessens the pain I'm willing to keep using it.
I have been following this subject for nearly a year, when my Trigeminal Neuralgia (TN) began. I was only on Gabapentin for 2 weeks before I really got help with homeopathy. It was temporary, but it started me on my course of natural methods for fighting/living with this condition. I am virtually pain free now (though I am still nervous about it coming back). I attribute my help to 3-4 things that I do daily. I take 3 T of coconut oil a day plus 2 t. Fish oil - but I think the important thing is to get enough 'good' fats in our diet. (I ate low-fat for years... Thinking I was helping my body, but I now know we need good fat). I take 600-1000 mg of magnesium a day. I have discovered Magnesium with SRT, which is timed release and doesn't cause the problems with loose bowels. And I take sublingual B12, 10, 000 mcg daily. But what has really helped me the most is Cell Salts. They are homeopathic in nature, and it simply works. (For me, at least). I take Cell Salts, 12X strength and I take this mixture once a day for 10 days. The basic rule is to take them until your symptoms stop, and then don't take them again until they start again. My formula is: 2 Kali Phos, 2 Mag Phos, 2 Calc Phos and 2 Fer Phos - I take all 8 tablets first thing in the morning - you should not eat or drink anything within 30 minutes before and 30 minutes after any homeopathic remedy. I also visited a laser center in South Carolina. I think it helped, but I am sure my regime has helped me more. It's worth a try... I constantly research this, as I don't want to take the hopeless medical route and I have met people who have had the surgery and it didn't help.... I hope this helps someone.
(Lahore, Punjab, Pakistan.)
Trigeminal Neuralgia - I had a form of this. Neck pain with electric like shocks up to my head. Sometimes one at a time, sometimes 3. It would stop me in my tracks! This happened each week for the last couple of years.
For a month I have taken 2 tablespoons of COD Liver Oil, and have NOT had ONE nerve pain sense!! I take it every single morning. They have a lemon flavor one on Amazon I take, but the pills should do the same thing. COD Liver Oil does so much good for the body, but the relief I have is amazing. Try it!
i have been following the many remedies people have listed and tried for Trigeminal Neuralgia since May 2013, when I myself developed symptoms on the right side over my eye (V1) which then progressed to cheek and upper lip area (V2) after a dental implant. It was confusing because the implant was on the left side however, stress such as an invasive procedure like a dental implant especially when associated with other life stresses can cause a herpes/shingles outbreak. Like many of you I too was debilitated with extreme pain episodes lasting 1-3 hours with intermittent shock-like hits of pain in between. I could not eat, brush my teeth, talk, move my upper lip without distress and sometimes simply moving from one room to another could trigger pain. My sisters left their homes in a neighboring state and took turns caring for me.
I began many of the strategies suggested by many of you on this site: Biogetica, increased magnesium, diet, Vit B, bolstered my immune system, prayer, meditation. I think these strategies were all helpful as I believe in a holistic approach and I am grateful, for that reason for this website.
Now it is I have some important input to add. There has been mention of cold laser therapy, and especially for those of you suffering from a form of TN referred to as Post Herpetic Neuralgia there may be good news. I have researched Cold laser therapy which is also referred to as, Low level laser and found that although there is some dispute as to the efficacy of cold laser there is growing agreement as to its benefit in pain reduction with specifically nerve pain. The Trigeminal Nerve is the chief sensory nerve of the face which is why it causes so much havoc many of you report but the good news is that it is relatively superficial- which is to say easy to get at. It does not hurt, it has a slight warming sensation. The probe does not touch your face but rather is held 1/4 to 1/2 inch off the skin. It cannot harm you. With a class 4 laser you wear protective eyewear.
So, here is what I did. Using a protocol I heard about as a baseline that treats an hour a day, 5 days a week for three weeks (total 15 hours), I found a nearby Chiropractor who was willing to treat me with a Class 4 Cold laser following the nerve pathways of V1 and V2 . ( I printed out a schematic of the Trigeminal and took it in.) His laser machine runs 8 minute programs for neuropathy and we did two 8 minute treatments at one session and later added a third 8 minute session for a total of 24 minutes for a session. I went twice a week for 2 months and then tapered off. It has been 6 months now and I have had a total of 8 hours of treatment and I am pain free. If I do have a few 'hits' I go get a treatment. Yes, I still take 600mg of gabapentin but have been able to dose down and hope to reduce more after the cold weather has subsided. I experience weeks as opposed to days without as much as a twinge. I just went to the dentist for the first time in two years for a cleaning without a problem. I can brush, floss, eat, talk and move my upper lip and have not had a major 1-3 hour pain episode for 6 months since beginning the laser treatments. I probably began to feel the more lasting results at the 5-6 hour mark. If I had lived closer I might have gone more often.
According to the current FDA standards, an FDA cleared cold laser addresses 4 main issues: Chronic or Acute Pain control, Inflammation reduction, Increased blood flow and Accelerates healing.
So, if it is you want to give Cold laser a try here are my recommendations based on personal experience:
Locate a Chiropractor, Physical medicine clinic, Dentist etc. who offers Class 4 Cold laser treatments. Some may already have a protocol for TN. Many of you are aware of the M Beach clinic as well- (although I bit pricey)
Plan on having several treatments as I found it is not a magic-wand-one time only fix but rather has an accumulative effect and so several treatments are necessary.
Negotiate a price since you will need several treatments.
Maintain all the things you have been doing. Supplements, homeopathics, hot packs, patches-- whatever you do that provides comfort.
Keep a journal to chart your progress.
Lastly, a resource for those who want to learn more about lasers is: COLDLASERS.ORG The site will educate you about lasers for pain management and how they affect the healing process. Especially for those of you who have had a viral assault or inflammatory process. I wish all of you who are experiencing this painful condition progress and blessings on your healing journey.
To your healing, Lindajb