All tips are in the patient’s own words. These tips are anecdotal only and are not endorsed by FPA. They are intended for information purposes only, to supplement a visitor’s general knowledge. It is not intended to replace or in any way supplement or qualify the services of a qualified medical professional and/or other appropriate healthcare professional or their advice.
I have both classical TN as well as the continual toothache pain of atypical TN. Acyclovir took care of the typical pain in that it reduced the length of time the attack lasted from 30 days to 7 days and also reduced the pain level from 10 to 4 during the 7-day event. The atypical TN pain is a nuisance and can be handled by narcotics if necessary. Mostly, I just deal with it.
It’s not for everyone but perhaps it will be a solution for a few. This disease has always felt like a herpes attack on an internal nerve. I get hints of what is to come, mild attacks that ramp up over time, peak and then recede.
My atypical flares from the air conditioning at work. I have discovered a mix of Abesol (the store brand) mixed in with Lansinoh Diaper Rash ointment (found at Target) give me a little bit of numbness with something that blocks the air somewhat from my trigger points. The Lansinoh has the highest content of Lanolin (15.5%) and Zinc Oxide (5.5%) of any ointment or cream I have found. I first apply a light mix of it with the abesol, then apply a heavy coat of just the Lansinoh on top. The zinc oxide rubs in clear, however, it does show some with the heavy coat, so what if it works! Doesn’t work 100% but it definitely helps take the edge off.
B Complex of Vitamins
I am a nutritional medicine student who is working with a woman with trigeminal neuralgia – she has had an operation which has stopped the pain of this condition. However, she has other health problems including obesity, high blood pressure, and blood sugar imbalance. For this case study, I would like to recommend a supplement which contains the B complex of vitamins (B6 is in the form of pyridoxine-5-phosphate 25mg). The B vitamin contains B3 (25mg), B1 (15mg) B2 (15mg) and B5 (50mg).
I was in remission for several years and found one thing that was a definite trigger to my TN, Vitamin B12 pills at a higher dose.
I have B12 deficiency and have to take Methylcobalamin to keep the levels at a good level. (I can’t take injectible cyanocobalamin because I’m allergic to something in the solution).
I found out that when I take more than 3 tabs, it fires up my TN with a vengeance, so I generally take just 2 tabs. The good news is that the tremors stopped completely and my memory is much better than it was. I always tell people that if they are having those kinds of problems to get their levels checked. It’s made a huge difference.
I even did my own tests to see if it was the B12 that was triggering it, and it started doing the “firing” of the nerve every time I increased it that same day, so I”m very careful not to go over that.
I just wanted to give you some information about my TN problem. I have discovered that if I heat a bean bag up as hot as I can stand it or hotter, and place it on the pain (mine is on my right side kind of in the ear) and sit down for about 10 minutes with the bean bag on the pain area…..IT GOES AWAY!!!!!!!!!!!!!! I think it has something to do with the heat. It relaxes the nerve and it goes away. NO MORE PILLS FOR ME!!!! I have tried pills, rest, crying works sometimes, too. But the heat works for me. Hope this information helps somebody. No more doctor visits either, which at one time I was told I was very difficult to treat and another pill was given. NO MORE PILLS FOR ME. YEAH. NO MORE DR APPTS. I have had this pain for 20 years and it took at least 10 years for someone to finally figure it out. It took a real good friend to help with the pain by saying try this, try this, try this………HEAT WORKS. Just wanted to pass this info to you.
Blue Star Ointment
About the same time I started applying Blue Star ointment to the side of my face and forehead each night before I went to bed, I think this also may be part of the reason for my relief; I don’t know for sure but I am continuing with both remedies.
Brand name Trileptal
My medication (trileptal ) became generic several months ago. At first, I was delighted as I felt it would be a great savings. Now I am back on the Brand name because on the generic I began to feel a great deal of sensitivity and was quite uncomfortable.I spoke to several friends who had problems with generics. I began to think that maybe my problem was a result of generic and apparently I was right for as soon as I went back on the brand name, my sensitivity is minimal. For anyone who is on a generic and may be experiencing problems, please consider going back to the Brand name.
I now put on my cervical collar (purchased at local pharmacy), place a hot (microwaved) bean bag on my scalp, and presto – gone in under an hour!
Collagen and Co-Enzyme 10
My pain intensity and frequency has lessened since I have been taking Collagen and Co-enzyme 10 in capsule form.
Well, Space Mountain seems to be 2 for 2. I was progressively getting worse last week, to the point that I saw a dentist and my doctor to absolutely rule out any teeth/sinus issues. They both ruled out ‘standard ailments’. So we headed to Disneyland on Friday night … since I went on Space Mountain again on Saturday, after the first 1/2 hour after the ride, I have not had the symptoms reoccur. I honestly believe the jarring of ride and not being able to see where you are going to prepare yourself for the turn creates a situation where your neck ‘snaps’ more effectively. If you would like to follow-up with me, please feel free.
FYI – My trigem seems to be ‘unofficially’ triggered by hard core exercise. Both instances when I have had it has come after working with a personal trainer and ‘pushing’ myself to my physical limits. I had just starting working towards a run/walk for a 5K …
Anyway, I hope that someone else will be able to benefit from the ‘Disney remission’ … It is a whole lot more fun the drugs and surgery!
I have been a TN patient for at least 10 years. Recently attacks seemed to occur more frequently. One of these occurred while I was on a tour bus overseas. One of the passengers suggested that I use an ear plug that she had received on the plane to stop any vibrations in my ear. I have since used an ear plug when I am in a car, at a concert, or on other occasions where there are loud sounds or other kinds of vibration. It works like a charm. I would just like to share this simple solution in the event that it may help others.
FYI – I discovered by accident that effexor xr 150 mg was controlling my tn. Last summer I stopped the med in a desire to be drug free and had pain returning after 2 weeks. After months of tegretol, lyrica, and other anti-anxiety meds I went back on effexor 75 mg and have regained control. My brother who had his nerve cut and capped twice, but after time the nerves regrew has recently started effexor and is finding it getting control of his pain. Hope this helps someone.
Elasto-gel Cranial Cap
I use an elasto-gel cranial cap for relief of pain from occipital neuralgia. It is good because my pain starts on the top of my pain and radiates down the back of my head where the occipital nerves are. It sits on the back part of the trigeminal nerve.
Other uses include for pain in your temple(s). If you get headaches, migraines, the cap is wonderful! It also reaches the neck.
It is a good idea to purchase 2 or 3. It takes a while to get cold enough (about 2 hrs.) So if you have another one, you can swap. I also have one at my parents’ house.
I had TN for 7 years. You all know the story, so I don’t need to describe what it’s like, but it was bad.
A friend found a remedy in a 60’s era herbal book; another friend gave me the ingredients, and I made it up. However, you can also order elderberry syrup.
It is elderberry syrup mixed with a preservative such as brandy. I made the elderberry syrup myself like this: take a gallon of elderberries, clean and take the berries off the stems, rinse in water. Put into a pot with enough water to cover the elderberries and maybe another 3-4 inches in depth of water. Boil for an hour or so. Mash the elderberries with a potato masher to get all the juice out of them. Pour first through a sieve and then through cheesecloth to get all the solid particles out. Sweeten with corn syrup to taste (it doesn’t taste very good without being sweetened). Add the alcohol. Probably anything from 10-25% alcohol will do. I use a decent brandy. Pour into a wine bottle that you have thoroughly cleaned and rinsed with boiling water. Cork or cap. It will keep in your pantry for a long time.
To start, take a fairly small amount (remember, this is medicine)– three times a day with each meal. I take about the equivalent of a shot glass or 1/4 cup.
You can get elderberry syrup from iHerb.com or a place called Wyldwood Farms in, I think, Kansas. Both will send it to you. Mix it with the brandy and rebottle. The alcohol intensifies and quickens the healing effect. I have speculated that this works because of elderberries’ antioxidant content, but there must also be some anti-inflammatory effect as well. It has worked for me and my cousin’s wife.
I just wanted to let you know that I have had terrible pain for the last month. New pain started also around my eye under and above. I started taking fish oil in the syrup form, coq10 100 mg. I started on Tuesday of this week and in the middle of the night on Thursday I could blink without any pain. I still have some small face pain but the eye was the worst!
I was taking 3 400mg tablets per day of Tegretol when I read about someone who was getting good results taking Omega 3 Fish Oil. I started taking 1200 mg of Fish Oil every time I took a Tegretol and soon found I could reduce Tegretol to 2 tablets per day and continued to reduce until now I have been four months without medication.
I read the book INFLAMATION NATION by Dr. Floyd Chilton. Bottom line, if you take EPA/DHA with GLA (all fatty acids) you can block the prostaglandins and luekotrienes that carry the pain messages to the brain. Has helped me at least 50%. Folks might want to read the book-available at B&N. It also tells you which foods trigger pain(foods high in AA, archidonic acid) & to avoid them completely. 60 recipies in back of book.
Myelin Sheath Support
I had Trigeminal Neuralgia and tried gamma knife (ok for 3 years), then MVD (ok for 3 years), then it started coming back. I discovered “Myelin Sheath Support” from Planetary herbals on the Internet, felt some relief after 6 weeks, total relief after 3 months, and have not had a problem since. I take 2 pills on an empty stomach in the a.m. and again in the p.m. I have made no other changes at all. Please let your patients know about this and give it a try. It really works (and I had tried EVERYTHING ELSE before I found this)!
Noxzema soothes and eliminates tingling nerve sensations.
I was taking a few drugs that dry the mouth. I started taking peppermint candies to keep my mouth fresh. Read an article that said: “years ago when people fainted oil of peppermint was used to revive them, it made the ganglion nerve more active.” I realized the candy was probably irritating the nerve and made my pain worse.
I and my brother both suffer from this problem and we have found a way to deal with it without using drugs although my brother at times uses Tegretol tablets for pain relief. I wanted to tell the members of your association about the drug-free treatment we use:
Bring water to boil in a kettle (a small one would do) with a spout. Slowly bring the nostril of headache-side to it and inhale the steam carefully. When it is done very slowly, there is no problem of burning. Sit on a stool or chair and continue this for about 20 minutes or a little longer until the pain vanishes quite suddenly. It is more effective when steam is carefully and slowly inhaled through only one (left for me) nostril by closing the other nostril with the tip of a finger. While doing this, blow the nose several times to remove any phlegm that may have got loosened. Applying a small amount of a balm such as “vicks” at the tip of the nostril may help as well but not essential.
Practice Healthy Habits
Get adequate rest, eat a healthy diet and engage in regular exercise. (Ask your doctor which exercises are safe for you.) Relaxation techniques like meditation, visualization, hypnosis, and biofeedback may also help you feel better.
Care for your Emotional Health
People in chronic pain have been found to have an increased incidence of depression, anxiety and sleep disturbances. Your physician may want to prescribe medication or may suggest cognitive behavioral therapy (like relaxation techniques and psychological therapy). It may also help to share your thoughts and feelings with loved ones and to join a support group. (TNA has support groups throughout the country and across the world).
Know Your Treatment Options
There are many options for treating your pain beyond prescription and over-the-counter medicine. Complementary and alternative therapies include biofeedback, meditation, relaxation techniques, yoga, acupuncture and physical therapy. There are also interventional treatments for specific types of pain (like electrical stimulation and injections). Ask your doctor which is best for you.