Taurine
 

Hello all, I've been trying out Taurine for Trigeminal Neuralgia and it's working. I feel only faint jabs once in a while but very tolerable. I was on Dilantin and the Taurine works just as good. I don't see anything on the web about Taurine being used for Trigeminal Neuralgia, but Taurine works with seizures and I thought it might work like the Dilantin and it did.

That is interesting. Taurine works on nervous tissue. It also works on sluggish gall bladders. I take 500mg a day for mine.
Without it I get pain in my shoulder and tons of hiccups and burping. It works very well for sluggish gall bladders by complexing the cholesterol in the bile and allowing it to flow more easily with no spasms.

Thanks for posting your experience.

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.

Each person here reading can make their own decisions on the Taurine.

You know, I recall way in the past, it was used by the Tourette's community (and ADHD too).

We always have it here, because of our cats. Vets often recommend additional taurine if cats get human food treats.

I only use it for my gall bladder (I have had 4 tests showing no stones over the years and including most recently). A low dose helps me prevent painful attacks. But that action is different from the neurological actions it has on membrane stability. The nerve impulses travel along the nerve membranes, using the electrolytes mentioned in the wiki article.
In fact there is a supplement, magnesium taurate that I recall Tourette's patients used.

http://www.amazon.com/Cardiovascular...+taurate+400mg

While the mag content of this is pretty low per tablet, the combo makes good sense if used in the proper dosages.

I wish my TN took a vacation, but it hasn't. I can still feel faint pain once in a while, so the TN pain is greatly lessened. The taurine seems to be doing something, but I have my dilantin just in case. So far, so good. I've been taking the taurine for about two weeks.

At one time I tried to wean myself off of dilantin, but the pain came back with a fury. so, I'm sure that the pain would come back to full force without the taurine.

I realize that everyone manages the pain differently with TN because of the various causes, but there might be a chance that the taurine will work for some and that it might not work for all. For me, it was worth the chance to check it out.

I'm definitely going to check into it...read about it, etc. sounds hopeful. Thank you Quandry and glad to hear of someone feeling a bit better. I have Atypical too.

Ironically, my TN pain is every so slightly better day to day of late (crossing myself, lighting a candle, throwing salt over my shoulders, touch wood). It's been a little over three years since I had my dental experience from HELL:(

However, my migraines are a little worse. In fact, I think I had somewhat of a cluster headache the other day AND about ten days ago. WTH?!?! Two within ten days. I've had them before. Doctor calls them "migraine with cluster feature." They come in spurts between my regular migraines, but fortunately not too often.

So, English Dave, I understand.

I take Topamax, but only 50 mgs since more than this makes me dumb as a door nail, which makes me depressed and well... It's just a nasty vicious cycle sometimes.

I use Imitrex and a little coffee when I get a migraine. But doesn't work as well for the ones that have the "cluster features."

I'm not sure why my TN is a little more controllable of late. I'm not going to worry about it though. I did have a horrible, insane TN attack when I went on a bus tour. So, the evil thing is still very capable of bringing me to my knees.

Sorry to be so negative...on the upside, day to day I'm doings little better and the Taurine is clearly something worth exploring :)

mrsD has mentioned taurine and Tourette Syndrome above so just wanted to add on here. Bonnie Grimaldi published an hypothesis regarding magnesium deficiency and Tourette Syndrome. She always recommended magnesium taurate. My undersanding on my very basic level is that the taurine was less "excitatory" than other forms of magnesium so has a more calming affect on neuromuscular excitability.

http://www.ncbi.nlm.nih.gov/pubmed/11863398
Med Hypotheses 2002 Jan;58(1):47-60.

Yes, I read cats cannot manufacture Taurine - fascinating. All our cat food is enriched by the look of it, Brand Names anyway. Sorry off topic, there Quandry.

I will Post over on Vitamins regarding Gall Bladder issues so as not to clutter your Thread.

Dave.

fyi - I found a page with lots of 'taurine' links down the bottom. Nothing regarding Trigeminal Neuralgia specifically but there may be some articles of interest in that *reference* section.

http://www.neuropathie.nu/research-d...europathy.html

Thanks Lara.

Those abstracts are very instructional. I think I will increase my intake daily by 500mg to make 1000mg per day.

What is interesting is that while taking this daily...(the past few weeks) instead of when I get a gall bladder attack, my swollen left ankle has shrunk to normal and hurts less. This is very welcome for me. So it just might be the daily taurine helping it.

I just want to say that the Taurine is still working. I felt some pain today, but it was just because I was late taking it, but once the Taurine kicked in I was pain free. The Dilantin didn't even work this good. I'm keeping my fingers crossed that the Taurine will continue to work this good.

You know, Dilantin used every day...is now listed as a cause of neuropathy. Keep that in mind too.

Anybody else try taurine yet?
If so, results?

Maybe if you post this question in the chronic pain forum too you might find others who have been on taurine . It sounds like a fairly new med . That is good news if it helps reduce t.n.pain or any type of pain. I would be interested in what others say about taurine also .

Taurine
 

A Warm Hello to All,

Just want to share a bit of info.:

In her book, The Wahls Protocol, Terry Wahls, M.D., mentions the amino acid Taurine boosts GABA production. (She also identifies NAC and lipoic acid as GABA boosting supplements.)

If you have not yet heard of Dr. Wahls and her research, please take a look @ terrywahls.com and/or do a search on her. She also did a TedxTalk, etc.

For the earlier poster in this thread referencing "mitochondrial functioning," please also see Dr. Wahls research.
Her first book addressed mitochondrial functioning, as does her TedxTalk: "Minding Our Mitochondria." (Forgive me, I cannot recall your screen name at the moment.)

Dr. Wahls is raising funds to do further scientific studies on her research.
She has an amazing story about her own recovery from progressive M.S.

To Our Healing! :grouphug:
DejaVu

P.S. MrsD- I, too, was recalling the Tourettes Community having used Taurine. Thanks for your reference to this. The magnesium taurate looks interesting. I am doing some research and may be attempting a trial for my PN and other chronic pain, as well as a neuromuscular condition, "myotonia." I may write about this elsewhere on this forum.

We have a fellow poster on PN getting over some form of muscular problem...He calls is Amyotrophy.
http://neurotalk.psychcentral.com/member.php?u=64553


But there are many problems that can happen with
muscles:
http://patient.info/doctor/myopathies

MrsD - Thanks for mentioning this. I will read up on the PN forum!
I am awaiting approval for DNA testing to confirm the type of "myotonia."
Thanks so very much for being you, MrsD!:hug:

I saw this formula the other day at the store
http://www.swansonvitamins.com/jarro...trate-100-tabs

Has Magnesium Malate, Potassium and Taurine 350 mg.

Anyone have any thoughts on this for facial nerve pain?

BTW, I read most of Terry Wahl's book and loosely follow her on FB. I should watch her Ted Talk. On FB, someone recently wrote in who has Sjogrens Syndrome and said they dramatically improved following her diet.

I don't know if this is typical for Sj. syndrome, but I can say that going gluten free, reducing sugar and dairy and eating a lot more veggies has helped me with fatigue AND oddly some days my mouth and eye dryness just isn't too bad. I wish I could zero in on exactly what it is. But previously, I was always parched and my eyes literally scratched. Things are far from perfect, but I sure do appreciate any signs of improvement. This diet I put myself on has some similarities to the a Wahls protocol.

She (Dr. Wahls ) seems to have basically cured herself from MS! Maybe this diet can help with nerve pain. :)

Dr. Wahls
 

Hi Vowel Lady,

You've been a member for many years. I remember you from years ago. It's nice to return to Neurotalk and see some of the same people are still checking in here. :) Have always enjoyed your posts.

There are so many testimonials of people with all kinds of conditions improving on the Wahls Protocol. It's truly astounding!

This protocol is one of the few dietary protocols to have some scientific studies behind it. The Wahls Foundation is raising monies/seeking research funding to do further scientific studies on the Protocol. (As you know, Dr. Wahls is a researcher by profession. Her own story is just incredible. She had tried so many protocols in order to try to heal. She had studied hard trying to find answers within nutrition and supplementation, even when so ill and unable to work.)

Thanks for mentioning the Taurine supplement. I am a fan of "Jarrow" products.

I have been following Dr. Wahls for a few years now. She had started out with "talks" with relatively small groups of people on the internet. I had just happened to have been subscribed to a group which had invited members to these talks. This was quite sometime before this book was published. It wasn't long before her work was recognized as potentially significant and people got behind her and her "science."

I believe she will obtain more funding for studies and her work will be more fully recognized as truly helpful, truly "healing" for many health conditions.
I have heard her interviewed many times. While she is trying to obtain funding to complete studies on healing M.S., she is getting so much feedback/testimony about healing for so many health conditions. She realizes the research has to go beyond just M.S.

As I understand her current protocol, which offers guidelines for three different levels of "intensity," it's meant to help with autoimmune conditions.

Dr. Wahls also offers membership to an online group where members interact and work together to adhere to the protocol, ask questions, obtain support, etc. I believe this particular group membership pays a monthly fee in order to participate in the group.

Dr. Wahls' work offers some hope for people trying to heal from chronic conditions. I am reading up and am slowly easing into the protocol. I have found I have been too tired lately to go into the protocol all of the way, all at once. I probably need to ease in as I detox gently.

To Our healing!
DejaVu

mrsD-
thanks again for these links.
I will check in on the member's posts.

The link for myopathies is a great resource!

I have had extensive work-ups over the years, including nerve biopsies, etc. I have sensorimotor axonal PN and other conditions - autoimmune in nature - and have had these for many years.

In the past 3 years, I have started to show more clear signs/symptoms of an additional neuromuscular condition. Neurologists had witnessed it first-hand in the ER when I had been admitted to the ER one night. Lucky for me I could see a neurologist to the ER -- That came about by my telling the Attending P.A. I refused to leave the ER until I saw a neurologist, even though the PA had already written my discharge note. After a short, yet intense debate, I saw a neurologist. The Neurology resident recognized the neurological involvement and the need for assistance within 5 minutes of witnessing the signs, which were profound by the way. (No idea why the PA could not see anything wrong. Since electrolytes were fine, he wanted to discharge me. I could not walk, could not use my hands, etc.)

We've done more testing including repeated EMGs, NCVs, labwork (including repeated paraneoplastic panels). I have seen a specialist in Muscular Dystrophies. A few MD neurologists have consulted and they all suspect a "myotonic dystrophy." We will be doing DNA testing soon.

I am being treated for "myotonia" in addition to being treated for PN and other autoimmune conditions.

Thanks again, mrsD. I deeply appreciate your insights and your kind assistance.

To Our healing!
Deja Vu

Taurine brands
 

So which taurine brand would be the best? I usually just drink a monster energy drink and that is fine, but sometimes I don't want the caffeine or sugar. I tried Now formula, but they have stearic acid and it doesn't go down right.

Jarrow has magnesium stearate and one formula is pretty expensive for 200 capsules it's $50 on amazon.

I've been taking Spring Valley brand taurine supplements (1000mg). I'm not sure how good they are, since my pain is still just as severe as always (newly diagnosed; my pain started during Nov '19). I also take 250mg magnesium and 200mg turmeric (because I misread the label and thought it was taurine, but I don't like to waste things...) to try to help manage the pain, with no benefit.

Hi archippos

Welcome to NeuroTalk :).

I am sorry to read about your trigeminal neuralgia; I hope that other members will be able to offer you support and good ideas.

You can also use the Search option (https://www.neurotalk.org/search.php) to find threads here which could help you.

All the best.

You may NOT be taking enough Taurine. Most amino acids I've taken over my years says 1000mg 3 times daily.

Recommended Dosage of Taurine | Livestrong.com

Start taking more daily and see, start with 2 daily and then 3 and see, also amino acids need to be taken away from foods.

Also your other 2 supplements you take are low doses. Again we have to experiment with our bodies..I take far more magnesium daily and on the turmeric I take at least 500mg daily and some days I take 2. I've been taking supplements for a LONG time and learn to work with them for me.

I've been working on being my own doctor on my health for many yrs. And if one takes pharma drugs, good to check on interaction issues.

I'll certainly start increasing my dosage of taurine and magnesium, then. I'll probably start taking both of them morning and night and see how that treats me. Do you feel like the turmeric supplements actually help? I didn't buy a new bottle after finishing the one I'd accidentally purchased.

My neurologist didn't seem concerned about the supplements I was taking, but since I'll try increasing the dose, I'll ask her about any possible interactions between them and the Tegretol she prescribed me.