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Tue Mar 15, 2022, 10:50 PM

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.

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Reply Trigeminal Neuralgia/MS- Anyone w experience? (Original post)
leighbythesea2 Mar 2022 OP
Twoflower Mar 2022 #1
leighbythesea2 Mar 2022 #2
Mugu Apr 2022 #3
leighbythesea2 Apr 2022 #4
Mugu Apr 2022 #5
leighbythesea2 Apr 2022 #6
Mugu Apr 12 #7
leighbythesea2 Apr 12 #8
Mugu Apr 13 #9
leighbythesea2 Apr 15 #10

Response to leighbythesea2 (Original post)

Wed Mar 16, 2022, 12:40 AM

1. I'm not really sure but my condition revolves around the Trigeminal nerve.

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.

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Response to Twoflower (Reply #1)

Wed Mar 16, 2022, 09:38 PM

2. Interesting

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.

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Response to leighbythesea2 (Original post)

Fri Apr 1, 2022, 03:03 AM

3. I do not suffer from Trigeminal Neuralgia

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

&t=409s

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.

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Response to Mugu (Reply #3)

Mon Apr 4, 2022, 08:33 PM

4. SO interesting

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

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Response to leighbythesea2 (Reply #4)

Tue Apr 5, 2022, 02:57 PM

5. I started out mixing about one oz. of Tabasco with 11 oz. of V8 once a day.

Last edited Wed Apr 6, 2022, 03:41 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.

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Response to Mugu (Reply #5)

Wed Apr 6, 2022, 08:20 PM

6. This is so helpful

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.

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Response to leighbythesea2 (Reply #6)

Tue Apr 12, 2022, 01:42 AM

7. I am so very sorry for my slow response.

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.

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Response to Mugu (Reply #7)

Tue Apr 12, 2022, 09:14 PM

8. Oh so sorry to hear

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?

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Response to leighbythesea2 (Reply #8)

Wed Apr 13, 2022, 04:16 AM

9. The mouth guard was the biggest obstacle for this procedure.

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.

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Response to Mugu (Reply #9)

Fri Apr 15, 2022, 07:09 PM

10. Good advice

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.

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