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Trigeminal Neuralgia -- an update

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May 19, 2022 - 9:30:54 AM
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banjoy

USA

10269 posts since 7/1/2006

I thought I'd make a post here to update folks on the Trigeminal Neuralgia condition I have been dealing with for about two years now. I'll keep this as brief as I can.

I first posted about this in late 2020 I think, when the condition first hit me like a ton of bricks out of the blue. Intense -- and I mean INTENSE -- facial pain which first started at the roots of my teeth but would move around every few days, always in the same areas of my face, from my scalp to my forehead, behind my eyes, temple, and jaw. It was sharp electrical pains ranging from slow intense sizzles to powerful zaps like static or lightening. Sometimes I would get reprieves, a few hours at a time with no pain, to pain all night and day long with only a few seconds in between zip-zaps. My initial attempts at help brought me to my dentist, then to my doctor, then finally, to an acupuncture school up in Sugar Grove, NC.

The dentist and doctor at that time were very accommodating and I had a series of x-rays taken, CT scans and an MRI which all showed nothing. The only relief I got was through acupuncture.

So that's where it was at when I first shared this experience here way back when. I made a few videos on the topic but stopped updating those videos because it was a lot of work and almost no views so I didn't bother any more with that.

But after 18 sessions up in Sugar Grove -- with its ups and downs (the path to wellness is never a straight line) -- the pain finally subsided and was 100% gone, nothing, nada, zero, for about 5 months. So I discontinued therapy which in hindsight was a mistake. Last November 2021, it started coming back again but this time very slowly, incrementally, and before I knew it it was fully returned, but this recurrence was nowhere near as intense as the first bout. To be clear, it's INTENSE no matter what, but this time was not on-my-knees-crying-in-pain intense. This was bearable intense. By mid-December last year it was fully back, kicking me in the the forehead every time I touched there, and finally moved back to the roots of my teeth where it would change from a sizzle to intense zaps every time I moved my jaw. So from about mid-January until a few weeks ago, it has been very difficult to talk or eat without a lot of pain.

With the recurrence I re-visited everything with teh dentist and doctor. The dentist took another series of x-rays and found nothing. The doctor I see had originally prescribed an anti-seizure med called Gabapentin which I declined at that time, but decided to try with the recurrence. Holy crap, after taking that stuff for a few weeks decided there was no way I would continue with that, if was making my brain come unglued from my skull and did nothing for the pain. But it was worth a try.

I resumed therapy up in Sugar Grove and took 4 sessions in February. Because of the pandemic I had to wait for some sessions but finally got up there. I would go every three weeks to take two more sessions at a time but this was really getting costly when the gas prices rose. The student clinic up there is only $15 per session but with gas and food added in, was costing me $100 to $120 every visit so every session was in reality costing me $50 to $60 out of pocket. And it was clear that I needed more sessions not spread out over that much time but dang, I could not afford to go any more than that.

So I checked locally here in Spartanburg and sessions here cost $75 to $120 each, way out of my ability to pay. I was getting a little desperate. So on a fluke I googled "affordable acupuncture in Spartanburg" and actually found a clinic nearby, a 45 minute drive away, called "Affordable Acupuncture by Joan" where they offer sessions from $25 to $35 and package deals where buy 5 sessions get one free. Five weeks ago when I first contacted them I could not even talk for more than a few words before pain would shut me down ( blessing to folks who know me, I guess LOL!!). I could not talk on the phone that was just out of the question. So I wrote up a narrative and emailed it to them and they had me in that same day. What a godsend, let me tell you. As of this last Tuesday I've completed 7 sessions with them and the pain is nearly gone. It only zaps me just a little when I eat, and this morning I ate breakfast totally pain free. Thank God. This clinic has three very talented individuals who know their craft and art very well and are more interested in helping people than in the almighty dollar.

This new clinic shared with me some interesting information I though I'd share to anyone experiencing chronic pain or other health issues. And that is, acupuncture is not some strange unknown thing. It seems that science has studied acupuncture extensively and scientists know exactly which areas of the brain fire up with every single acupuncture point (and there are hundreds) as well as knowing exactly what chemicals are released by the body. That was interesting news to me. Also, acupuncture has been swallowed up by some neurologists who use the techniques but call it by other names, such as needle therapy, e-stim therapy, etc. It's still acupuncture but without the philosophy and eastern approach to wellness which backs it all up.

It seems that this is becoming more and more mainstream too. Last Friday I was at a jam session in Chesnee, SC and the after-hours jam is always better, so I was sharing my experiences with the late-night (after 10pm) crowd about why I had not been attending lately. The 76-year-old guy who runs that jam told me he had never used acupuncture himself, but that his wife swears by it. That was interesting. Old codgers like that...

Anyway, I realize at times I can be a bit testy and sometimes that shows up in threads here on BHO. I see that and understand it and have tried to mitigate that on my own by simply staying away from here for weeks, or months, at a time. I've recently gone back and looked at some of my posts made while I was in pain, posts that in hindsight (which is 20/20 afteer all) had I not been so clouded in intense pain, I would most likely never have made. So to anyone here on BHO I may have offended in the recent past, all I can do is apologize and ask for your understanding, and compassion, and that may be a tall ask, I know.

Anyway, that's it in a nutshell. Today I feel relief, again, but will continue with acupuncture therapy for the rest of my life (probably every once a week or three) because it sure as hell has restored a quality of life that I honestly thought had gone forever. As of last Tuesday I've had 34 acupuncture sessions since about December 2020. It's been worth it every step of the way, this journey I never wanted or asked for. But is sure has revealed a lot about me, to me...

For anyone else suffering from this or other chronic issues, check this out, it's non-invasive, won't hurt you if it does not help you, but can help. I know. I definitely know.

Well, I tried anyway, to keep this brief. But I yam what I yam...

Thanks for reading. Many Blessings.

Edited by - banjoy on 05/19/2022 09:44:41

May 19, 2022 - 9:43:26 AM
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STUD

USA

35825 posts since 3/5/2008

Very sorry you half to deal with that stuff..

Glad you have found some relif...

I knew an old guy who had that... not fun..
N ..no one can see..yer ..pain..

May 19, 2022 - 9:44:38 AM
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OM45GE

USA

115396 posts since 11/7/2007

Thank you for sharing Frank. That’s quite a story. It’s also timely for me. At the end of the month I’m starting several months of radiation therapy for prostate cancer at a leading cancer treatment center here in Boston. Part of the service they offer is acupuncture therapy which is supposed to help with many of the potential side effects. To be honest, I was a little skeptical but your experience has caused me to rethink that and I plan to give it a try.

Thanks again and I hope your relief continues.

Cheers,

Bill

May 19, 2022 - 9:46:31 AM
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11145 posts since 8/22/2006

Did you try a tens unit?

research Gamma Knife treatment to the Trigeminal Nerve. My wife has experience with Gama knifes. 

Edited by - 5B-Ranch on 05/19/2022 09:53:59

May 19, 2022 - 9:50:41 AM
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banjoy

USA

10269 posts since 7/1/2006

quote:
Originally posted by 5B-Ranch

Did you try a teans unit?


I don't kn ow what that is, never heard of it. Do you mean electrical stimulation?

The clinic I'm going to now didn't want to do e-stim until they brought it back under control, they said it could do more harm than good while it was flaring up so bad. This past Tuesday they used e-stim on 4 of the needles in my face. It helps.

If that's not what you mean, let me know? I'm definitely open to this stuff, way more than I would have though a few years ago.

May 19, 2022 - 9:54:04 AM
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chuckv97

Canada

64286 posts since 10/5/2013
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Thanks for posting, Frank. I’m glad you found a solution.

May 19, 2022 - 10:02:02 AM
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11145 posts since 8/22/2006

neurosurgery.pitt.edu/centers/...neuralgia

My wife says this is a good option although it may be expensive it’s a one day procedure and people have good results. After the treatment it takes a while for it to take affect but if you been suffering as long as you have six months may be a drop in the bucket for you. Wife said she seen patients come back pain free after one treatment . But she says everybody is different some have better results than others. If the term fiberknife comes up avoid it it is not as precise as gamma knife. Her credential. Director of radiation oncology/gamma knife LSU Medical Center Shreveport La. she worked with a leading neurologist surgeon knows nationwide but personally I didn't like his bedside manner to arrogant. 

Edited by - 5B-Ranch on 05/19/2022 10:08:42

May 19, 2022 - 10:02:09 AM
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13205 posts since 1/15/2005

The main thing Frank is that you are feeling better. Each and every one of us could go back and visit posts that were probably unadvised. I have always considered your posts as having a lot of value even when I may not agree with the content. Just keep getting better!

May 19, 2022 - 10:13:17 AM

11145 posts since 8/22/2006

M U S C health
Medical University of South Carolina has a Gama Knife center. Should be located near you.

May 19, 2022 - 5:28:44 PM
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rinemb

USA

14615 posts since 5/24/2005

That is quite a horror story. If acupuncture works, and I believe it does-with skilled experienced technicians, I would keep that up. Chronic pain is a terrible thing. I dealt with in my back decades ago. My SIL is currently dealing with your level of pain from an accident involving her head and neck. for about a year now. she suffers, been to specialists all over the country, they even clipped some nerves recently, running out of options-surgery and more.
I know enough about the gamma knife, to know a bit of its history and applications (from a layman understanding.) I would only advise be very careful with the gamma knife, and fully understand the doctors that would recommend it and their experience with its use and applications. I am not a doctor. Brad
I hope we here better news soon. and you get better soon!

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May 19, 2022 - 5:39:03 PM
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rinemb

USA

14615 posts since 5/24/2005

There is also the popular "cyber"knife that competed with the gamma knife. I have heard a number of treatments done with it. These things often require your head be bolted to a cage of steel so you can't move your head during a treatment. But beats no other options . Brad  (did I mention, I am not a doctor or even a medical practitioner of any kind...beyond once certified first aid tech with REdCross and Boy Scouts.)

Edited by - rinemb on 05/19/2022 17:41:17

May 19, 2022 - 5:54:07 PM

banjoy

USA

10269 posts since 7/1/2006

When this first hit and in August 2020 I did some homework on it and quickly found that there is no cure for this condition, it seems it will be with me the rest of my life. I also learned that any pain killer out there has no effect on it, which is fine because I hate pain killers and won't use them anyway (unless it's smokable, not really an option where I live). In extreme cases surgically severing the trigeminal nerve is the only solution. I'm not there yet.

I did have a few zaps today as I was eating lunch but not even on the same scale as a month ago. Not even close. At best I hope to contain the pain, knock this electrical gremlin down again to where it was before, which was no pain at all. That's an amazing result, to me anyway.

When I first approached Jung Tao School of Classical Chinese Medicine up in NC about this condition they didn't even flinch and were unequivocal. They told me yes, they had lots of experience with this condition and yes, they can help with the pain. They never had any doubt about it. They were right.

During an average session they will have anywhere from 20-30 +/- needles inserted and for my condition the areas have been consistent: needles in my facial area which can include my face, scalp, ears, etc ... in my hands, and in my feet, from the soles to ankles to shins. It varies. The actual specific points will change depending on the therapist but always in those areas. The worst needle so far was in my tear gland in my eye but even that was a cake walk for me. No problem. Just close my eyes and let them do their thing. The needles are relatively painless and the ones I do feel, are nothing compared to the pain they're knocking down. You then relax and they leave you to cook for 30 minutes. This has been consistent from the school to this clinic I stumbled into last month.

The results are not immediate -- sometimes it takes days for me to notice positive changes -- nor are they consistent. Sometimes the changes I notice are in the wrong direction, but it does change. As I said, the path from here to there is rarely a straight line, but this is true of any type of medical condition or therapy. Overall, it has been a path towards wellness.

I quickly perused 5B-Ranch 's link and was a little amused at the registered symbol of Gamma Knife® ... can't say that with acupuncture® it just doesn't look right LOL!!! But from what I can gather, it too seems to be a solution when all else fails, kind of in-between step before severing the nerve completely. But acupuncture, no matter what you think of it, has a track record going back about 5,000 years and an entire worldview alien to our own which supports it. There is a lot there to consider.

I observe that what is noticeably absent in that link is any mention of acupuncture as one of the therapies for conditions like this. That omission stands out to me. But, I will print that out and give it to my medical Dr. at my next appointment as it was she who first identified and named the condition when all this started.

I've learned that acupuncture can also successfully treat mental issues like depression and anxiety, as the needles not only stimulate electrical activity, but also release specific chemicals in the brain depending on what point they hit. As one of the therapists at this new clinic I'm seeing was telling me, this has been well studied and documented by science. I have nothing I can point to to validate that, I just trust I am being told the truth.

They also successfully treat chronic hereditary conditions which for the life of me I can't recall the names of, but the NC clinic was telling me about some of their other patients with chronic conditions that other avenues of treatment have failed.

Anyway, for me, it works. If it stops working for me, at that time I will probably look at just severing the nerve (or the Gamma Knife® first) and being done with it, but that has its own drawbacks, too many to mention, but it always remains an option of last resort.

Edited by - banjoy on 05/19/2022 18:01:46

May 19, 2022 - 6:25:19 PM
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3980 posts since 9/9/2010

Good to hear you are feeling better, Frank. Will insurance cover it? My husband went to an acupuncturist and our insurance covered it. I was surprised that they did.

May 19, 2022 - 6:43:45 PM

banjoy

USA

10269 posts since 7/1/2006

quote:
Originally posted by JMalmsteen

Good to hear you are feeling better, Frank. Will insurance cover it? My husband went to an acupuncturist and our insurance covered it. I was surprised that they did.


Thanks Jen. I have no insurance at all, it's all on me, but I have been pretty healthy all my life. I only take one medicine to control blood pressure and that's it. It does not surprise me that insurance will cover this therapy because it's a proven thing. Not having insurance, though, makes things like the Gamma Knife® out of reach, I don't even need to dig, I know that will be outrageously expensive because it's not just the procedure, but the fact that I would have to go through a series of neurologists and tests before i can even get there. Living without insurance is a real dance, a balance between what is out there in a world where money is no object, and what is realistic when it is.

It's been a real education for sure. I just hope someone can get something positive out of this experience, and from the post I see from Bill above, it seems it already has. That one post alone makes this thread worth it to me. I feel like I've done a little good for someone, kind of what makes the world spin.

May 19, 2022 - 6:57:34 PM
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slammer

USA

3646 posts since 12/30/2008

Hey Frank, I remember your story and so glad you are getting relief for the affliction with trigeminal neuralgia!!! Being an MRI Technologist for longer than I can remember, I have performed scans on many people with TN !!! Sadly, we usually don’t find the answers they are looking for , and many times we find anomalies that cause the symptoms, but end up being far worse than a facial nerve condition. Not that we take that lightly, but sometimes it’s something really nasty causing TN like symptoms.
My best buddies wife has had TN for quite some time. She weighs about 92 lbs now as she has had so much pain for the last year that she can’t eat without excruciating pain.
She finally had a procedure done about 1 month ago. She is not in the medical profession and doesn’t explain things well, but sounds like she had some kind of radiation treatment to the facial nerve and surrounding area. She has gotten some relief and I believe will be having a few more treatments in the future. I know how miserable she has been and have seen many patients with TN, and I feel your pain buddy!!! It’s a real thing and most people just don’t understand!!!
I’m so glad she and you are getting some relief!!! Each case is different and each treatment works differently for each case.
As far as posts made in the heat of the moment…………trust me when I say you are not alone!!! Granted , I myself have never done that……LMAO, but I know many here, and I have names, that have done what you have described!!! Still LMAO !!!
I won’t mention any names at this time, but they know who they are!!! Just sayin!!!
I truly hope you continue with your positive treatments , (and attitude) and hopefully some day soon you will be pain free!!!
Slammer!!!

May 19, 2022 - 7:26:26 PM
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banjoy

USA

10269 posts since 7/1/2006

Wow, slammer, that's sad to hear about your friend's wife. I don't mean to suggest that this therapy is a one size fits all solution because I hear ya buddy, it's not. But for everyone, I would say it's worth a try when nothing else seems to help.

One mini story I omitted here is last Thursday morning I was laying on my couch resting and when I rose to stand it hit me like a tone of bricks again, but this time the nature of the pain was different, it was a low level sizzle but excruciating pain that went from my upper jaw to my lower but the main difference was ... in lingered and did not stop, for about maybe 30 seconds. Never in the two years of this crap had it behaved like that. And never before in my lower jaw. It sopped after those few seconds but man oh man, it knocked me to my knees during that time which felt like forever.

I had already planned to go that day for a session (which incidentally, are all walk-in, no appointment needed) and did the usual session. But when I went to stand up, again, it hit me. Just leaning over to put my socks and shoes on, was very VERY painful. But I've been here before and figured it would pass. But once I left the clinic it got worse and worse, and did NOT stop. I got about 1/2 mile away before I decided to return to the clinic and try for another session right then.

Instead, the therapist had me sit in their community area in a nice leather recliner and try to calm down. Another staffer did some hands on of my skull, just working the energy, so to speak. They gave me a few gummies which have anti-inflammatory properties and I just stayed there for about 30 minutes. Every time I stood up in pounded me hard. And I mean HARD. And it did not stop, no moments of let-up, just constant nonstop pain. That was really rough let me tell ya.

Finally I decided I needed to drive home, it was letting up just slightly. This time, about 10 feet out the front door, it suddenly stopped, like turning off a light switch. But I was totally spent, exhausted. It then returned to its normal zapping of my teeth and hurting when I moved my jaw.

I am glad the therapist got to witness this, honestly., She told me, as did the school up in NC, that changes like this indicate a positive movement towards wellness and as silly as that might sound to someone not familiar with this pain, it's true. I told the therapist I was used to this, this dance, and sure enough, the next day the pain that has been my new "normal" for months was drastically reduced, again.

So I've learned that with this particular gremlin, it likes to kick my butt on the way out the door as it has many times. It seems to get a little worse, then significantly better. Just this time, it got a LOT worse for about 3o minutes, then was back to the old new normal, then almost gone in a day.

This stuff will wear ya out. Some folks like your friend's spouse have it way worse and there are YouTube videos out there of folks who suffer terribly from this stuff. There is a reason that this is called the "suicide disease" ...

I'm just soooo thankful that a good friend of mine is an administrator up at that school, I would probably not have ever thought of acupuncture otherwise. I don't mean to go on and on about this, but your post helps validate how excruciating this can be. And that's the right word for it.

Part of the trip has been emotional no doubt, pain like this f***s with your emotional well being. Thanks for your kind words, and everyone else too. That's part of healing, too. A very important part.

Edited by - banjoy on 05/19/2022 19:29:47

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