Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search


(1,164 posts)
Tue Mar 15, 2022, 09:50 PM Mar 2022

Trigeminal Neuralgia/MS- Anyone w experience?

Hello all. My sister suffers from MS (43). But it's been decently manageable.
She now has developed Trigeminal Neuralgia.
A friend of mine had it 25+ years ago, and I was quite active in his treatment. (Eventual surgery). My aunt also had it, also ultimately had surgery.

The gap in time between these other people treating it, and the current agony my sister is experiencing--- is a lot of years.
I know surgery is still very common.
The drs have her on gabapentin. And then, today, tapered steroids--for the week.
Has anyone here had exposure to:
This condition.
These kinds of therapies?
Any 1st hand knowledge is very much appreciated! Im heartbroken for her. Such an awful disease.

Trigeminal Neuralgia/MS- Anyone w experience? (Original Post) leighbythesea2 Mar 2022 OP
I'm not really sure but my condition revolves around the Trigeminal nerve. Twoflower Mar 2022 #1
Interesting leighbythesea2 Mar 2022 #2
I do not suffer from Trigeminal Neuralgia Mugu Apr 2022 #3
SO interesting leighbythesea2 Apr 2022 #4
I started out mixing about one oz. of Tabasco with 11 oz. of V8 once a day. Mugu Apr 2022 #5
This is so helpful leighbythesea2 Apr 2022 #6
I am so very sorry for my slow response. Mugu Apr 2022 #7
Oh so sorry to hear leighbythesea2 Apr 2022 #8
The mouth guard was the biggest obstacle for this procedure. Mugu Apr 2022 #9
Good advice leighbythesea2 Apr 2022 #10


(1,015 posts)
1. I'm not really sure but my condition revolves around the Trigeminal nerve.
Tue Mar 15, 2022, 11:40 PM
Mar 2022

The Doctors are always trying to keep my bp as low as possible so the blood vessels do not put pressure on the nerve. I really feel for your sister turning on that nerve is excruciating.


(1,164 posts)
2. Interesting
Wed Mar 16, 2022, 08:38 PM
Mar 2022

That makes sense. I will ask her about her blood pressure. Thanks. Our family tends to run low normal, but she's pretty stressed. I don't know her bp.
Watching others deal w this is seared into my memory.
She said so far the steriod is helping. Weans off over 5 days, so we shall see.


(2,886 posts)
3. I do not suffer from Trigeminal Neuralgia
Fri Apr 1, 2022, 02:03 AM
Apr 2022

and I realize that this is going to sound really odd, but she might consider capsaicin.


Be sure to read the comments after the video.

I have severe/unrelenting/crippling neurological pain in my legs. Capsaicin has given me back my life.


(1,164 posts)
4. SO interesting
Mon Apr 4, 2022, 07:33 PM
Apr 2022

Thank you for this. I read the comments. Im definitely showing her this!
How do you take capsaicin?


(2,886 posts)
5. I started out mixing about one oz. of Tabasco with 11 oz. of V8 once a day.
Tue Apr 5, 2022, 01:57 PM
Apr 2022

Last edited Wed Apr 6, 2022, 02:41 AM - Edit history (2)

I now mix .5 oz. of ghost pepper sauce with .5 oz. of Tabasco in my V8 twice a day. I also use over-the-counter .025% (1 quarter of one percent) capsaicin patches every other day on the back of my knees. 8% patches are available by prescription, but the doctors inform me that these patches can only be offered to people whose nerve pain is caused by shingles or diabetes, neither of which I have. Consequently, I am now looking at making the patches myself using DSMO as the solvent.

The main thing to keep in mind is that no matter how unpleasant the capsaicin might be, it's not causing any actual harm. In fact, it's actually good for you. It's a great anti-inflammatory agent as well as being a vasodilator and the LD-50 (lethal dosage in 50% of the population exposed to it) is something like 47mg per kilogram of body weight.


(1,164 posts)
6. This is so helpful
Wed Apr 6, 2022, 07:20 PM
Apr 2022

Good information. So glad you found this and it has worked!

and I am positive my sister would try anything.

And cool that you are making you own patches. If it works as you like, can you write me a message?

Bc they probably wouldn't prescribe it for her either.
I sent her the video, the best part is its natural---she doesnt like taking gabapentin but the pain is such, of course she does.


(2,886 posts)
7. I am so very sorry for my slow response.
Tue Apr 12, 2022, 12:42 AM
Apr 2022

There was an unexpected death in the family, so I had other places that required my presence this last week.

I have also been down the Gabapentin, Pregabalin path. Unfortunately, neither provided any noticeable pain relief and the Pregabalin made me stupid (even more so than I usually am), so that didn't last long.

I've gone through several iterations of thought since my last posting. I still very much like the idea of capsaicin dissolved in DMSO, but I'm thinking of applying it using a spray rather than a patch. One unexpected obstacle with this plan has been finding a pump sprayer that is made of materials that can withstand DMSO.

But, I believe my biggest problem is going to be the local anesthetic. Lidocaine powder dissolved in DMSO would be perfect, but I'm guessing that pure lidocaine powder will be impossible to obtain legally.

I have an appointment with my GP doctor scheduled for later this week, so we'll see what he has to say.


(1,164 posts)
8. Oh so sorry to hear
Tue Apr 12, 2022, 08:14 PM
Apr 2022

Of the death. My sympathies.
I told my sister and she is absolutely willing to try this.
She has a mouth guard type device already so would not have to do that step.
The gabapentin is working enough, but shes taking 9 pills a day. That can't go on forever.

I told my daughter and she immediately knew about capsaicin. She took a community class in natural remedies once.

Sounds challenging with the spray tincture. What is DMSO? And why the lidocaine powder?
Have used lidocaine patches before. The lidocaine works in conjunction with the capsaicin sounds like?


(2,886 posts)
9. The mouth guard was the biggest obstacle for this procedure.
Wed Apr 13, 2022, 03:16 AM
Apr 2022

Now it's just a matter of procuring the capsaicin. In the video he uses a 40% mixture that he then diluted to 10% with isopropyl alcohol.

I have no idea where you might purchase such a tincture, but with all the hot sauces available today from mild to crazy insane, why bother?

You don't want her to have a bad experience on her first attempt, and even a tiny spill of 10% capsaicin could be a very intense experience for somebody that has never experienced hot before. I thinking that some practice with something mild like Tabasco would allow her to perfect her technique and I'll bet that after just a few days she'll notice some slight reduction of the pain. From there she can pick just how hot she wants to go.

I'm buying capsaicin powder and I need a organic solvent to dissolve it with. For that I've decided to use DMSO which I will then dilute with ethanal to the concentration that I want. DMSO is a great solvent, but it also has the ability to jump through skin to deliver whatever chemicals are dissolved in it deeper into the underlying tissues.

My target area is about 6" above and below the back of my knees. That's some pretty tinder skin and I'm thinking that a 8-10% capsaicin dose for 30 minutes will be somewhat unpleasant. The lidocaine is to lessen the unpleasantness.


(1,164 posts)
10. Good advice
Fri Apr 15, 2022, 06:09 PM
Apr 2022

On trying hot sauces to get used to intensity. I dont think shes inherently into hot foods.
Good luck with the patches. Let me know how it goes.

I've done some more research, and just knowing this is a way to treat pain is truly eye-opening. I had no idea, it's really very encouraging. Pain meds have the fun side effects of drowsiness etc. Thanks so much for introducing me to it!

I will let you know how my sister does.

Latest Discussions»Support Forums»Chronic Health Conditions Discussion and Support»Trigeminal Neuralgia/MS- ...