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Fri Sep 15, 2017, 10:44 AM

Trigeminal Neuralgia?

Anybody with experience? My ENT suspects I have it but needs to clear up a massive sinus infection before addressing it. I was devastated to learn on the internet this morning that it's a chronic condition. The shooting, lightning-strike pain is damn near unbearable.

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Arrow 12 replies Author Time Post
Reply Trigeminal Neuralgia? (Original post)
cyclonefence Sep 2017 OP
voteearlyvoteoften Sep 2017 #1
cyclonefence Sep 2017 #2
marigold20 Sep 2017 #3
cyclonefence Sep 2017 #5
marigold20 Sep 2017 #6
cyclonefence Sep 2017 #7
Warpy Sep 2017 #4
RGinNJ Sep 2017 #8
cyclonefence Sep 2017 #9
bucolic_frolic May 2018 #10
cyclonefence May 2018 #11
bucolic_frolic May 2018 #12

Response to cyclonefence (Original post)

Fri Sep 15, 2017, 10:52 AM

1. My MIL had it

Controlled with Tegritol. She had brain surgery for it, but that did not help and incision did not heal right. Thought it might have come from bad dental work. She learned to live with it but it looked bad. Good luck to you😽

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Response to voteearlyvoteoften (Reply #1)

Fri Sep 15, 2017, 11:06 AM

2. Thank you

I don't know how I got mine, but it's sure awful. I'm glad the Tegritol worked for her.

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Response to cyclonefence (Original post)

Fri Sep 15, 2017, 12:15 PM

3. Yeah - painful is an understatement

I've had one bout with TGN fifteen years ago. I was prescribed Tegretol and I took lots of ibuprofen and tylenol. I don't think the painkillers helped at all. The pain was intense! My pain triggers were cold foods, cold air on my face, etc. The tegretol made me lethargic but eventually the pain went away (about four months, I think). I at first thought it was an infected tooth and went to my dentist. Everything was fine. In the past, sufferers would have ALL their teeth pulled in an attempt to stop the pain.

I've had two children and would rather go through that again rather than have TGN. At least in childbirth there's a reason for the pain! I hope you also have just one episode.

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Response to marigold20 (Reply #3)

Fri Sep 15, 2017, 05:54 PM

5. Oh glob bless you

Your story is the first ray of hope I've encountered. Thanks so much. Mine is triggered by chewing, touching my nose or glasses, chewing, moving my head (no discernible pattern) and more. Since it began with this massive sinus infection, maybe it'll go away with it.

Again, thanks for the hope!

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Response to cyclonefence (Reply #5)

Fri Sep 15, 2017, 06:09 PM

6. Another thought

I've read that some people can get relief via botox injections to the pain area. When you're over the sinus infection, you could ask your doctor about it. If I have a recurrence, that's what I'm going to pursue. Good luck to you!

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Response to marigold20 (Reply #6)

Fri Sep 15, 2017, 06:10 PM

7. Again--thanks

I'll let you know what happens.

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Response to cyclonefence (Original post)

Fri Sep 15, 2017, 01:51 PM

4. I have an online friend with it who's had it long term

She says a combination of Tegretol (an anti seizure medication) and capsaicin cream keeps it under control so that she can still work full time.

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Response to cyclonefence (Original post)

Sat Sep 16, 2017, 02:35 AM

8. Please see a Neurologist for this.

It may also be cluster headaches, fall and spring are the usual times for it to appear. Either way I feel for you as I have my Trigeminal nerve hits me much more often than I'd like.

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Response to RGinNJ (Reply #8)

Sat Sep 16, 2017, 10:22 AM

9. That's on my list

Trouble is, I have chronic sinusitis and have had dozens of sinus surgeries over the years. This has left my sinus geography unusual to say the least. I can have a terrible sinus infection with no symptoms--my nose is clear, no external drainage, no pain in the jaw, nothing but a weakening of my voice. I had polio as a child and my throat was paralyzed, so sometimes my voice is very weak anyway. The only symptom I had this time--and this is a first--was pinkeye.

I had a CT scan of the sinuses which showed a massive infection, and that's what *might* be causing the pressure on my trigeminal nerve. I hope I hope I hope. So *maybe* when the infection clears up--I'm on a high taper dose of prednisone and clarithromycin, *maybe* my nerve pain will go away.

Thanks for your suggestions and concern.

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Response to cyclonefence (Original post)

Wed May 9, 2018, 07:24 PM

10. In the 1990s

the doctors I went to were not accustomed to seeing "alternative" illnesses like this one, or there was no such diagnosis.
I'm sure I had it, related to fibromyalgia and metal toxicity. Painkillers, not opioids but the lesser ones, mostly made it worse.

Detox helped. MSM methsufonylmethane helped a bit. Things that helped the liver - dandelion root, milk thistle - helped too.

Yes the pain is severe. Even light was painful. I only found one doctor who had a clue, and he didn't really have a solution.

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Response to bucolic_frolic (Reply #10)

Thu May 10, 2018, 04:00 PM

11. I just got back from my ENT

My TN is "activated" by sinus infection, and I've found that being aggressive with sinus care has reduced the really bad attacks. I snort salt water from a bowl twice a day, and I use Nasacort to keep swelling down. He has given me prescriptions for Clarithromycin and prednisone for when it's really bad.

I also ended up with a neurologist, and he prescribed Trileptal, which is a seizure medication, and that works well as long as my sinuses aren't acting up. The idea is that the oversensitive nerves which cause the pain are kind of like the oversensitive nerves involved in epilepsy and the med has a sort of numbing, or slowing down effect. As I say, it's been pretty helpful. In fact, I wondered why epilepsy drugs wouldn't be used in fibromyalgia. I agree with you that there's probably a connection between the two conditions.

I'm with you on pain control--nothing, not even oxycontin, controls this pain. TN isn't known as "the suicide disease" for nothing.

It sounds like you are more of a "natural cure" person than I am. I'm actually in the "whatever works" camp! Good luck to you, and let's keep in touch if we figure out anything.

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Response to cyclonefence (Reply #11)

Thu May 10, 2018, 04:08 PM

12. Yes feel free to IM if you want to compare notes

Systemic conventional meds failed me, there were just too many long term side effects to use them. Short term they made things worse, mostly. My doctor was an environmental allergist. He did everything alternative and was more inclined to look for root causes, and use organic remedies to enable the body to cure itself. Cheers to you, hang in there!

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