When I saw Taurine, I thought I'd read this as I just had an experience with Taurine. On a suggestion from a friend on the FM/CFS group I've been with many years and here is what he suggested:

Taurine 4-5 grams twice daily. Taurine is vital for reducing microglial activation. It assists in reducing neuropathy and in improving muscle function.
Vitamin B12 1 mg, Methyl Folate (MTHF) 5 mg daily, acetyl-carnitine 500mg twice daily, CoQ10 150mg daily, Benfotiamine (Thiamine) 100mg twice daily, magnesium (any form) 300mg twice daily. This set of supplements is used widely in the mitochondrial diseases to assist the optimal functioning of mitochondria.)))


So what I did was buy 1000mg caps and started one a day in the AM on empty stomach as amino acids do best on empty stomach as I've read over the years....well, after about 6 days I was falling over with debiliting fatigue. So I sent a note to my friend who deals with CFS and she deals with high cortisol and I with low cortisol, well she found taurine lowers cortisol....so I did stop taking it and I'm back to my normal.

The above suggestions are really high taurine dosing. Quandry, how much taurine are you taking?

You also mention Dilantin and years ago, back in late 80's long before I had my thyroid addressed and FIXED, I was dealing with depression and after reading Jack Dryfus info on how Dilantin helped him for many years of depression....I convinced the doc I saw back then for Dilantin for depression and I had ONE GOOD GREAT DAY...clearity, great feeling, etc. and never again. So I stopped with it.

I had the great feeling after 1 day on LDN .5mg and never again. Had a horrible constipation issue with the low low dose of LDN too....tried to work with LDN for 6 months thinking I could avoid a hip surgery....I was trying about everything.

It's amazing how some things can work and not work in our bodies. Glad you are finding help with taurine. Sure is innocent and affordable. C

I'm taking 500 mg 3 to 4 times a day. I'm staggering it with another pill, Huperzine A for Myasthenia Gravis, just to make sure there are no adverse reactions. There's just not enough information out there for me to really analyze how the two will affect me. So if you are taking other meds, I hope you can find more info about it.

Hi Quandry,

That is interesting, as MrsD says. I could find nothing on the Net either. I take Topiramate for chronic Cluster Headaches, and it has the beneficial side effect (with Lidocaine Infusions and Ketamine) of reducing the intensity of my TN attacks - yes, I suffer both for my Sins.

May I ask, what is the cause of your TN?

Dave.

My TN is atypical, and unusual because it occurs on both sides, but not at the same time. The pain has progressed to the point that if I were to go without taking anything I would be in pain all the time. My pain has spread to all the branches of the trigeminal nerves and I'm guessing that it must have something to do with demyelination and possible blood vessel problems combined. So it's important that I take something that works. I've had MRI's etc... and there's no evidence of Multiple Sclerosis, so I'm as confused as my neurologist about the cause. I'm just happy that I found something that works, and I hope that maybe it can work for someone else. This is the most horrible pain I've ever experienced and I've given birth to four children. I hope that Taurine might possibly help others out there. I think there should be some studies done on Taurine, for TN, so that more people are aware of its effectiveness.

Hi Quandry,

While I am pleased you are getting relief, please beware that this is not a co-incidental, natural respite, which can happen for any length of time before it returns with a vengeance - not that I wish that upon you.

Double-sided TN IS rare, I feel for you. You speak as though yours is chronic, as is mine (caused by arterial knot round left nerve, before branching), I also have permanent Neuropathic Facial Pain/Paresthesia. As for pain levels, childbirth is supposed to come in between 5-8, TN is way over 10 - and you don't give birth hundreds of times an hour, day after day during a triggered Bout. Really, the only thing worse - because of the constant duration of the pain - are Cluster Headaches.

Let us hope that, whatever the cause of your relief, it is long-lasting, if not permanent.

Dave.

Here is the Wiki article on Taurine:

https://en.wikipedia.org/wiki/Taurine

Mentions enhancing cellular membrane stability (a factor that may be helping TN)
and also its actions on magnesium and potassium, which may be helping the nerves also.

The only warning I am finding is that it should not be used with lithium (as in the treatment of depression and bipolar disorder)

As it really helps for my gall bladder issues, I will continue to take mine. 500mg a day on an empty stomach.

Hi MrsD,

I have no doubt as to the multiple benefits of Taurine, in fact the more I read, the more I feel I should be taking it (heart, etc) subject to contraindications. I scanned (eyes and headaches today) many papers regarding it's use in the treatment of diabetic neuropathy.

I just know how evilly sneaky TN can be. Twice I have had a respite co-inciding with the start of a new med, only for the Beast to return at the same intensity and back to the same frequency within a month.

For anyone and everyone who suffers I wish for the pain to go, it is no fun feeling as though your face is wired to an electrical socket which a sadist is constantly flipping on and off. It is just that, from personal experience and from reading about third parties I have been ground down to being pessimistic - which is ironic as I have just advised Canagirl on the PN Forum to be optimistic I should listen to myself, damn my mental issues.

Dave.