Have I missed anything in the last three years?

Welcome New Member Introductions
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Hi. I’m old, but I’m back. I was in remission, still on meds, for about three years. Went to visit my in-laws, took a bite of a bagel, and BAM, out of the blue, a giant ZAP on the left side of my jaw. This was in October and the pain has been slowly creeping back until I’m finally forced to admit that I’m back in the TN game. Damn. I had really begun to think that my 3.5 years of TN pain were a horrible, but isolated event in my life. Realizing that it came back is more depressing than I ever could have imagined, especially because it means that even if it goes away again, it can always come back. That I’ll have it in the back of my head (no pun intended), forever.

The very first pains I ever had were on the left, but they quickly moved to the right where they stayed for years. Now, all the pain is on the left again. I am confused about what that means about the origins of my pain. I have a lot of research to repeat.

I was on 1600mg of Tegretol but I managed to dial it back to 1100. I was about to drop to 1000 when this happened. Now I’m back to 1200 and I’ve added 400, then 800mg of Gabapentin. But it’s not working and I’m thinking about upping my Tegretol to 1600 again. I’m reluctant to do that because if it doesn’t work, I feel like I’m out of strategies. My doc says no more Gabapentin, which confuses me bc I know that I’m on a very low dose.

Having trouble eating, even soft foods, licking my lips, brushing my teeth (mostly the spitting part), talking, and last night, I was getting zaps while I was sleeping. That really sucks, I think. I definitely feel the stress component. When I’m talking and I’m stressed, the pain increases quickly.

I am curious to hear from people whose pain has switched sides and what that means. I’m also curious to hear what’s new, what’s working, what’s not working in the past few years. I admit, once I stopped having pain for a while, I stopped reading too. It was so much easier.

I can’t say I’m glad to be here, but I’m certainly glad that there is still a HERE to come back to. There is no group of people like the people who know this pain.

Time to sleep.

My best -
Faye (outside Boston, MA)

1 Like
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I don’t like to say ‘welcome back’ but you know what I mean. I’m sorry the pain has come back after such a good remission. Sorry, unable to help you with bi lateral pain issue but just wanted you to know we are all here for you.

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Thanks, Mary. You are right. It is hard to be back. But I’ll keep plugging away…

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Hi Zapgirl, I have nothing to offer you but the fairly typical news that nothing much has changed on the TN front while you’ve been gone. There’s always a lot of talk about research and such like, but basically, we’re all still on zombie-making medications or locked in cycles of surgery if that’s not working! I am currently in remission, and like you, I don’t read the site (I just get the odd digest and occasionally comment, like I’m doing today, if something is of interest or I think I can help). I live in big fear of exactly what you are going through right now. I’ve been in remission for about a year, I think, and I like to delude myself that mines isn’t coming back, I’ll be the miraculous exception, but I don’t doubt I will join you some day, hopefully later rather than sooner!

Strangely, or maybe not, I have more fear of not being able to cope emotionally with the return of TN. I fear being overwhelmed by depression. I found the combination of the disease itself, along with the meds’ side effect of increasing “thoughts of suicide”, made me… well, suicidal quite a lot. Worryingly a lot. How have you coped with the return emotionally and psychologically? Do you reassure yourself that it may go again and you’ll get some more pain-free years? And did it really come back that suddenly, or was there some warning, lead-up, minor kind of pain first?

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I have nothing to offer really other than to say that I am glad this group is still available.
I hope you are able to cope & get help.
I am nearly 5 years post MVD & continue to be pain free & I am grateful EVERYDAY.
I, too, wonder if the TN monster will strike again.
I wish you courage & strength.

1 Like
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Hi, I hope the following is somewhat helpful. I recently switched from Gabapentin to Gralise, which is the extended version of Gabapentin. I find that it gives me longer pain relief, no new side effects and on low pain days I’m able to cut back on Methadone, Oxycodone, Nortriptyline, which is good bc my goal has been to get off these meds that are killing me. I’m also going off the Celebrex.
My daily prescribed meds are:
Gralise 1800mg, Topamax 600mg, Trileptal 300mg, Celebrex 200mg, Nortriptyline 75mg, Methadone 60mg and Oxycodone 30-45mg. I hope you find relief.

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Thanks
I will mention gralise to my doctor and see what he says.
This is a super helpful community.

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You’re welcome. Depending on your insurance the Gralise may or may not be on your formulary. Gralise was not on my insurance co formulary and my neurologist went thru 3 appeals before the insurance co finally approved it. At the onset my neurologist told me he’s been known to go to court to fight for his patients meds. After the first denial I knew I was in good hands. Not all Drs fight for their patients. Years ago I tried to get Gralise and of course my insurance denied it, end of story, my dr at the time never mentioned appealing it and I just continued on with Gabapentin, and I thought he was a great dr!! smh

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Thanks
i so love this site.for the first 8 moths of me being in pain I was looking up so many places and posting and nobody,I mean nobody,ever got back.It seems some sites are to leave a gripe and that’s it and some sites are ask questions and get answers.
Even if the answer is,I don’t know-but I care-it is enough to keep me going another day.
I think because I was always told atypical odontalagia ,GOOGLE never came up with this site.Or something.
Anyways-I was just looking up medical marijuana for my marijuana doctor appointment tomorrow-so I get strains that work for someone else-and your response came up.
You have an awesome doc.I hope younger than you so you can keep that doctor forever!
Thanks

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Gralise is not available in Canada. We have gabapentin, which is the same active ingredient but you have to take it three times a day because it’s not slow release.

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Thanks
I might need to take it multi times a day.The 300 mg sends me to bed.200 mg I can handle.To get my dose up higher I guess I will need to talk to my doctor about prescribing 100 mg capsules and popping them all day

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Have you tried 1000mcg vitamin B12. A day. I have been in remission 14 mths now take it twice a week. Also he Tumeric root 1/2" grated on food each day. 'Tis is a powerful anti- inflammatory but tell your doctor you are using it as it is also a natural blood thinner. I have had TN since 2004, wanted to eliminate meds which play with your energy levels & your head too

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Hi
Congratulations.
14months is bliss.One day would be lovely.The odd time I might have 10 seconds without burning.That happens maybe once a month.
I am a silly toothless old woman.

Trying to figure out the first two sentences
Yes I am taking sublingual B12
I can’t deal with the fresh turmeric but have been taking high end capsules a few times a day.I was drinking powder in milk but got turned off of it for some reason
Also Ginkgo
omega 3
You know the list better than me.