I just started seeing a chiropractor for upper cervical care because I am currently pregnant and having a terrible flare of TN1. He also does accupuncture and seems very knowledgeable and willing to be aggressive in trying to get my flare under control and give me some relief. I am just curious to see if chiropractic care or acupuncture works for those of you with TN1 like me? (My Pain is in my 3rd nerve, running along my jaw, and I take Gabapentin 600mg 4x daily)
Chiropractic may help, as may physical therapy of any sort if properly directed. Suggested you had a vascular compression? so why the remission, it wasn’t because your nerve spontaneously remylinated. This always bugs me, after MVD you have a less successful outcome if on waking your not zap free???
What is the neuro suggesting if they honestly believe that demylination of the nerve is an issue, it healed within a day. Remission is likely due to personnel circumstance, stress no.1, diet, neck trauma, and above all else stress and more stress.
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Just fair warning, I had acupuncture treatment and it WORSENED my pain (atypical TN). I think it “worked” and thus allowed the nerve to flow more freely, and because the nerve is causing pain, it thus started causing more pain. In fact, it created, where I never had them before, two spots (on at bottom lip area, and one at ear), of EXTREME hypersensitivity, after only 2 acupuncture treatments, such that if a feather brushed the spot, I literally jumped from the hot searing pain. Six weeks later, I find those spots have calmed down a bit, though other pain is as it always was and did not otherwise reduce from acupuncture. I just got prescribed gabapentin 300 mg 3x a day and will be trying that starting tomorrow, and fingers crossed that this CONSTANT pain in my right side tongue, jaw, ear, face will reduce at least a bit. Anyway, I know for others I read that acupuncture works, but for me, I regret having gone, as I now have these hotspots to contend with.
alexsmom – gabapentin 300mg 3x a day is a HUGE starting dose, check with your pharm about it before leaping into it. You may want to consider starting 300mg 1x day for two weeks and titrate up to higher dose as-needed. You may also want to consider starting at 100mg and working your way up.
Keep in mind gabapentin can initially cause drowsiness also. 900mg straight away could knock you out cold.
I really am glad that you are on this site. You are very knowledgeable on medications due to your Pharmcy job,and unfortunately from this disease.
I always look for your comments.
I recently tried oil of oregano, it worked better than the peppermint oil I was using. Just a tip for readers.
I applied to my teeth and got almost instant relief.
You have help me a lot; and I hope you will keep helping us. As you know a lot of doctors don’t understand our condition.
Thanks, Linda
Indeed that is what I am doing. Thanks!! Pharmacist told me to ignore my doctor’s script of 3 a day, and to take 1 at night for a couple days, then add 1 in the morning for couple days, and then add the lunchtime one. Perhaps I’ll extend the “couple of days” to more than that, just to see what 1 does, then 2, and only if necessary 3. I have a friend who takes it for back nerve pain, and while prescribed 3, only does 2 frequently. I took my 1 last night, and don’t intend to take another until tonight. I can’t start at 100 mg cause it is a capsule that is 300 and I am not about to empty it and try to measure out smaller quantities. Thank you again for your care and concern. I hope you are doing well!!
I have had success with UCC. I go for months at a time without pain, usually need to go back from time to time when pain returns. I hope you have success, my pain runs along my jaw as well.
More abt gabapentin… you may want to stretch “a few days” to at least a week, gabapentin does need time to titrate up into your system and because you’re already dealing with entrenched pain it will take longer to get ahead of it again, you want to give your body time to use the medication you’re giving it before you up the dose. When I started with it I went two weeks between upping the dose. Not that I’m saying that’s medical proof of anything, just offering my experience.
This is also largely word of mouth, but, it seems that it’s easy to over shoot your lowest effective dose with gabapentin. And, gabapentin seems to work LESS the higher over your personal effective dose you go. As an example: I started at 100mg 1x day, moved to 100mg 2x, then moved to 200mg at night, 100mg in the morning (I personally don’t do mid-day dosing if I can avoid it as I tend to screw up the timing on mid-day doses or miss them completely). For about 10 days I was doing 200mg 2x but didn’t get anything but drowsy from it. I backed the dose off to 200mg at night, 100mg in the morning and then was able to back it off again and have held steady at 100mg 2x for about two years now with no change in effectiveness.
Keep in mind, currently the max effective dose of gabapentin is considered to be 3600mg day split over three doses. Anything over that gives every indication of being ineffective. For some reason rather than starting people at 100mg and moving up from there, which was basically the standard for years, offices have been doing what was given to you, 300mg 3x a day for about the last 18 months. I don’t what caused the changed other than a study for fibro that stated effective dosing for that condition seemed to settling at 300mg 3x day. But none of us have fibro so why are we being prescribed that therapy?
I am a huge fan of lowest possible dosing at all times and of titrating up as slowly as possible. You’ll hear me saying it over and over again: LOW AND SLOW for all meds at all times.
accupuncture has helped me alot, so has the alpha stem unit she prescribed and herb infused essential oils
It seems that I have had success in dramatic lessening of pain with my TN after chiropractic treatment. As others have stated, you never know exactly why the pain is lessening. A decrease in pain has happened at the same time as I started chiropractic treatment.
Sorry to hear of your TN-1. I am a Support Group Leader here in Sacramento, Ca. People in our group have tried almost everything. Depends on the patient. UCC has worked very well for some but not others. Acupuncture has a lower success rate but some have had success. I also had TN-1 in V3, had a MVD and was pain free for 4 years when pain returned. Went on meds for years and was taking , daily, 1500mg Tegretol, 900 mg Gabapentin and 30mg Baclofen. Only affected me when I got to the 1500 of Tegretol. Some 10-11 years ago I went into remission and, with a few minor breakthrougs, I am still there. I attribute this to the 5000 mcg of V-B12 I take, sublingually, on a daily basis. Good luck with your TN-1. After you give birth you may want to consider a MVD but, if so, get a neurosurgeon that does this more than “once in awhile”.
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Never tried it myself, but my aunt has TN1 & she has found acupuncture helped hers.
I love my acupuncture, can’t live without it. definitely doesn’t hurt to try.
Considering MVD prior to everything else is madness, scrap that shouldn’t even be considered. If anything ask them to prep you for surgery, give you the anaesthetic , and call it a day, suspect the results would be comparable without the risks of brain surgery.
'moth – perfectly said! that’s exactly how I feel about MVD and, really, any other invasive procedures. Regardless of what it is, be it facial pain or something else, I believe you should do everything else before considering invasive work.