Trigeminal Neuralgia*

Hi @richj8,
I'm glad to see that you joined this discussion. I forgot to mention that Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections http://mayocl.in/1Mz18C8. There is also an older discussion that you may wish to read where Connect members @cagon @jwhite64 @calebba @jenkob @zane @omlee @nomore are talking about their experiences with treatment http://mayocl.in/28SOKk5

What is SFN?

@mamajomclane, SFN is small fiber neuropathy

Botox injections have been very helpful. It takes 7-10 days to kick in. And because doctors are only allowed to inject them every 3 months, 2 weeks prior to the next injections the shooting pains will start up again. 10mcg Butrans patch worn 24/7 with a pain medication helps right away. Best of luck.

It took 8 years for me to finally be diagnosed with SFN. 8 years of horrific nighttime neuropathy. The 10mcg Butrans patch worn 24/7 with Percocet stopped the nighttime neuralgia instantly. The pain I have in my left ear is still a daily problem. I believe it is caused by Trigeminal neuralgia not SFN. When the Trigeminal nerve shoots it shoots thru the ear into my mouth and down my throat. Botox injections are a must for TN.

Thanks Krissy. That’s exactly what I feel In my right ear. The pain burns in my right ear, right side of tongue, and right side of throat. It makes speaking difficult when the pain is at its peak. But, the pain is also in other areas, including left leg, right arm. And there’s random muscle twitching, including constantly at rest in both calves.

I truly can’t understand it, and my docs can’t figure out the cause. Finally getting a small fiber neuropathy diagnosis is helpful, but it’s seems only a piece of the puzzle. And no one can tell me why this has been going on for 1 1/2 years. And there’s definitely a progression in how badly i feel.

Hi Rich,
Have you ever Googled that question/topic under holistic medicine? Especially Functional Medicine. They are the most knowledgeable for troubleshooting and finding the cause of most illnesses. In the last year functional medicine has advance dramatically. It’s not anything like the holistic medicine of the last 20 years...
I have found solutions to life long health problems that no doctor could help me with (more in the last year than in the last 20 years).

I have to say that the CBD/CBDA oil I take has been a godsend also for my health and seasons of pain. There are few side effects (like lower blood pressure and some get dry mouth). CBDA is more effective than CBD or THC for pain (particularly nerve pain) and the NCIH website says this:
“Currently there is growing amount of evidence to suggest that the psychoactive ingredient in cannabis (THC) and individual cannabinoids may be effective in alleviating neuropathic pain and hyperalgesia. Evidence suggests that cannabinoids may prove useful in pain modulation by inhibiting neuronal transmission in pain pathways.”
It may not be a cure all but it helps me with so many issues.
Praying you will find answers and relief.
—kim

I get what is called trigeminal neuralgia or ice pick headaches. I've read everything I could on it and it seems a lot of folks over 50 get them. Excuse my language, but they are hellish. It's a sharp, stabbing pain on the left, or right, side of my head, usually somewhere over the ear or right behind it. It's as if someone stabs me with a hot poker. I take Rx Motrin and since I started taking Lamictal, they are much less frequent. When I've tried to tell my family about this, they just blow it off like it was nothing ….. well, if they got them they'd soon feel differently.
abby

Hello, @amberpep - I'm sorry to hear you are enduring so much pain, not only physically, but from your family members not understanding what you are going through. As you mentioned trigeminal neuralgia, I moved your post here to connect you to others talking about this condition so they can empathize and offer support. Please click VIEW & REPLY in your email notification to find your post and to read previous posts in this conversation, "Trigeminal Neuralgia*."

I'd like to invite some of those involved in this discussion to return and offer some input on the "hellish" sharp pain on the side of your head, as if someone was stabbing you with a hot poker. @kim_o @krissye @lauren123 @johnbishop @richj8 also may have some input on your family blowing off this pain like it was nothing.

You mentioned taking lamotrigine (Lamictal), @amberpep. If I understand correctly, this is helping decrease the frequency of these stabbing pain incidents? When they do occur, are you taking the prescription ibuprofen (Motrin) at that point, or how are you managing these pain episodes?

Hi Abby @amberpep, I'm sorry to hear about your family not understanding how much pain you are in when you have one of the headaches. That adds even more stress on you which I'm guessing makes things a lot worse. Would it help to educate them a little?

Here's a good description of the headaches. Maybe you could print it and make a copy for each of them?

What to know about ice pick headaches
-- https://www.medicalnewstoday.com/articles/317234.php