Successful Treatment of a Resistance Trigeminal Neuralgia Patient By Acupuncture

I have been pain free for more than a

month now. Try to stay free of stress and sweets (especially sugar). Had TN for 3 years. 

Get well soon,

Mark

Based on my (limited) understanding of acupuncture, there are 2 treatment routes - 1) treat the symptom 2) treat the root of the problem that is causing it.  One way to screen your tcm is to ask if s/he has experience with TN/GN etc. Other is to find out the years of experience they have. Nice if they can treat symptom first (stop the pain) and work out other lifestyle change requirement (healthier diet, sleep well, less stress etc). There are acupuncture sessions to promote overall well-being.

I hope his helps,

Mark

I was initially diagnosed with glossopharyngeal neuralgia and then a second neurologist said it was actually trigeminal.   I underwent MVD in August 2016 and it did nothing for me. I feel my symptoms are more aligned with GN rather than TN. I have extreme pain in the side of my tongue; I’ve never had facial pain. 

May I ask what your symptoms are?

I also went to see a TCM doctor last week and he is well known for helping patients with fibromyalgia, however, I did not get the sense he really understood Trigeminal Neuralgia. Mark, may I ask where he stuck the needles please? I want to get a sense of whether this guy is even remotely in the right area!

Thank you both of you in advance. 

Hi rsw,

Sure, I can describe what's going on with me. For 3.5 months now (as of early October 2017), I've had a constant deep ache on the left-side base of my tongue and it radiates up along the side of my tongue. It sometimes feels like it's at the back of my throat (left side). Sometimes I get deep left ear pain. So far it's never the stabbing type -- just a constant pain that sometimes rises. It fluctuates from a 2/10 (seldom) to 4/10 (seems like most days) and even up to 6.5/10. I believe these symptoms are related to glossopharyngeal issues. Concurrently, I seem to have a recurring (but not continual?) deep ache over my top left molars (coming and going for over a year, probably much longer) that seems to exacerbate the left ear pain.

In the past week, I've started to notice strange sensations in my face -- mostly on the left side, but occasionally on the right too. Very vague pangs, zips, subtle numbness -- and I'm desperately hoping these aren't precursors to more intense pain of the more "typical" neuralgias. They seem to be all over -- under chin, in cheek, above top of hairline. I'm hoping it's just that I'm "looking for" any mildest sensation and perceiving as maybe more ominous than it is.

What about you -- what are you symptoms? Have you had steady pain on the tongue for years, with no change? When you had your MVD surgery, did they say they found arteries etc causing the pain? 

Can I ask where you are?

rsw, I should have clarified this messy sentence of mine: 

"it fluctuates from a 2/10 (seldom) to 4/10 (seems like most days) and even up to 6.5/10" means that the pain is constant, but most of the time it's around pain level 4; rarely, it's low as 2, and occasionally it's 6.5 (or even possibly a bit higher) but this tends to subside again within hours. 

Also I just saw in another thread you're in BC Canada. I'm in Ontario!

rsw, one more thing: has your tongue pain been steady and constant, have any meds worked for you, and have you had any surgery? Have you ever tried wearing a mouth nightguard? 

Hi Stella,

Thank you for your detailed reply.

My pain comes and goes, although it really is hard to tell because I am highly medicated so for the most part, the pain is under control.  However, I do get breakthrough pain despite the meds and that just means I have to increase my dose.  When I do have the pain, it is never less than an 8 or even 9, and it really is unbearable.  I've been going through it in the past week or so, I had a breakthrough pain, and not even an increase in my dosage has helped.  My pain has only ever been in the right side of my tongue, although sometimes when the pain is so bad, it radiates upwards behind my ear.

My neurosurgeon said he did find the offending artery when he performed the MVD, but he said it was not as bad as he had expected, and perhaps I just had  a low threshold for pain.  I am 90% certain that the reason it didn't seem as bad as he expected was because it was the wrong nerve, and that they should really have been looking at the glossopharyngeal nerve. Don't get me wrong, this guy is supposed to be the best for MVD not just in BC but in Canada.  It's just that I feel that he and my second neurologist had just decided that the first diagnosis of GN can't be right because it is so rare that someone actually gets diagnosed with it.  I should have advocated more strongly for myself, knowing my symptoms were never aligned with TN.  I've now asked our family doctor to find me another neurologist for a second opinion.  

My miracle drug has always been carbamezapine, but when I got to very high doses and my pain would not subside, I was put on a cocktail of Carbamezabpine, Lamotrigine and gabapentine. After my MVD, I had two months where I was able to wean off the lamotrigine and gabapentine and get myself down to 800 mgs of carbamezapine.  That was short lived.  I am now back to 1200 mg carb and 200 mgs lamotrigine.

What drugs are you on, and has a surgical procedure been suggested to you? 

Thank you for sharing your story.  Since I joined this forum in 2016, I had been looking for someone with or any thread on GN and never found one.  I hope we can both find our way out of this horrible thing. 

Hi rsw, I'm sorry to read about what you've been through. It sounds like you've been managing reasonably well despite the hardship -- this is an inspiration.

I haven't received a diagnosis yet. I'm waiting to see a neurologist. In the meantime, I'm trying to get as informed as possible without obsessing too much or letting my spirits plummet. I find connecting with others and sharing information can really help.

I'm hoping we can connect but can't find a way to send you a private message. One work-around would be for you to join the Living with Facial Pain forum - 

http://www.livingwithfacialpain.org/ 

My ID there is Canada2018  and you can send a private message. Let me know if that works. There are others with GPN there as well, by the way, and have shared quite a bit of their knowledge/experience in various posts. 

Wishing you a good Saturday night.

I started with TN2 in year 1 (visits to dentist etc) It gradually became TN1 (constant pain with jolts) in year 3 with jolts every 15 mins (lack of quality sleep with chronic pain led to depression). It took me under 6 sessions of acupuncuture to get rid of 80% of the pain. After that, it takes time for the body to heal for the remaining 20%, 10%, 5% etc. Zero sugar diet helps the process. It took me 3 tries to find the right doctor. If you look at the peer reviewed medical journal article, the impact is felt by the 3rd to 6th session (for a total of 15 sessions or so as reported in the studies).

I hope you will find a good doctor soon!

Warmly,

Mark