Neuropathic Face Pain and Trigeminal Neuralgia Tip Sheet

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.

My pain intensity and frequency has lessened since I have been taking Collagen and Co-enzyme 10 in capsule form.

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.

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.

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 TNA 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 have both classicl 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.

Tips for an Exceptional, Superb & Powerful Life!

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 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!

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.

Noxzema soothes and eliminates tingling nerve sensations.

I have been a TN patient for at least 10 years. Recently attacks seemed to occur more frequently. One of these occured 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.

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, migranes, 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 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.

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.

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.

See Someone who is active in the treatment of neuropathic facial pain
You can ask for a referral from your primary care physician.