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Trigeminal Neuralgia
#1

I have had lower right facial pain for the past 4 years. The doctors think it is Atypical Facial Pain and not Typical Trigeminal Neuralgia. I do not get the Electric Shocks. My pain is constant and feels like it is coming from my teeth and gums and radiates into my face and ear. I would describe my pain as a very deep ache ranging in intensity from day to day. The only time I get any relief from the pain is while sleeping. My pain never awakens me from sleep either. I have tried Effexor, Neurontin, Klonopin and all have lessened the pain to a degree. But never takes the pain away. Does this sound familiar to anyone? I am hoping to connect with anyone who has this facial pain condition to share stories and find out any treatment options that may have helped.

Thanks,
Lori

1 Like
#2

I had shocking pain in my face for over a year. I was told I needed root canal which did not work, and finally had the tooth pulled. The pain did not go away and after many visits to neurologists I was finally diagnosed with TN. On the TN website I searched for alternate treatments (not wanting to take any drugs if I could avoid it). They said some people got relief from chiropractic adjustments. It seems the C1 and C2 vertebrae are right next to where the TN nerve begins. I figured it could not hurt to try. My Chiro took X-Rays and I could see how crooked my neck was RIGHT AT THOSE TWO Vertebrae.

I began the adjustments in May of this year. It took 2 months to get relief but the pain is GONE!!! I implore anyone who is diagnosed with this condition to seek Chiropractic adjustments. It saved my life!

#3

I haven’t tried Upper Cervical Chiropractic because there doesn’t seem to be anybody in my area that does that treatment. I am going to try Acupuncture however. I am keeping my fingers crossed that it will help. Has anyone ever tried Acupuncture for face pain?

#4

Then the docs in your area probably aren’t using the correct
procedure. It takes a really talented caring doctor and they are
hard to come by but worth their weight in gold. Portland Oregon
doesn’t seem to have any doctors like Dr. Wagner in Silverdale WA,
but my hubby (who has TN) can’t handle the 6 hour round trip drive.

Denise in Oregon

#5

To find a chiropractor that was certified in Upper Cervical adjustments in my area I would have had to travel 3 hours each way. I was not willing to do this. I found a Chiropractor near me who was well respected. I told him all about Upper Cervical adjustments, and found he was very familiar with this type of care. While he may not use the exact same maneuvers to adjust my neck, he did make adjustments that released the nerve pressure and took my pain away. That is all that matters to me.

I suggest finding a reputable chiropractor in your area and talking to him/her first about your diagnoses and decide if he is the doctor for you. There are many different theories on Chiropractic procedures. Make sure you have the doctor who believes he can help.

#6

Perhaps look here for a doctor that specializes in this type of adjustment.
National Upper Cervical Chiropractic Association

See below page for information on the Trigeminal Neuralgia Association’s info on Upper Cervical Chiropractic care.

www.tna-support.org/newlook/uppercervical.htm

#7

I should also note that I have many of the risk factors or "precursors "associated with osteo necrosis, High blood pressure, smoking, and a clotting disorder which leaves me more prone to clotting than normal … not to mention a history of major dental work and long term low grade infections in the jaw and teeth area. just to mention a few.

#8

I hope this is okay, a link to look at and discuss with your doctor if you want:

http://facial-neuralgia.org/conditions/nico.html

#9

Well, I cannot speak on chiropractic adjustments, although I do have neck pain that might very well be coming from c1 and c2… I will look into that at a later date.

My experience… well in a nutshell I got alot of mnnnn, that sounds strange and my pain was not considered typical by my neuro, long story short… I needed major dental work anyways so while I was having it done the surgeon removed a fair amount of dead and diseased bone in my upper jaw… 90 percent of my pain went away. It was in the area I always called my trigger teeth…

I am totally off all medications and what pain I do get now is more sinus and fades within an hour entirely on its own. There is something called NICO or osteo necrosis, described as quackery by some, however it seems to fit the best in both the pain I had and its dissapearance… nothing was ever verified as far as what I may or may not have had…

I just know that after the oral surgery that I am almost pain free and what is left is nothing worse than an occasional minor sinus headache. Something to look at and discuss with your doctors.

#10

Thanks for all your responses. Maybe I will give Upper Cervical Treatment a try. Also, to voiceintheshadow what kind of pain were you experiencing? I have heard of NICO. and have mentioned it to some doctors and they just look at me like I am crazy. I sometimes wonder…what if? What if that is what is going on. Unfortunately, I live in MA and I cannot find anyone who believes in that theory. Also, how did your doctor diagnose that for you? I have been to the hospital and have had a bone scan done and the results were normal.

#11

Hi Lori,When I was reading your post, It was so close to what has been going
on with me, that I thought I was reading my post. I have lower left pain
though. I’ve been diagnosed with TN though like you feel it is atypical. I
am on so many meds: Lyrica 300mg 2x a day, Pamalor 75 mg, oxycontin,
percocet when needed for breakthrough. Nothing seems to take the pain away.
I have had acupuncture, but felt it actually made the pain worse. I’m
desperate to find something that will work. The oxycontin does dull the pain
quite a bit , but it comes back within hrs of taking it. With out the pain
meds I am miserable. The burning, aching, and pulling in my mouth gets very
intense, by the end of the day it is pretty bad. I also have little kids 2
girls 5 & 2. Stress makes the pain so much worse. The pain varies , but
never goes away. I am also able to sleep. It never wakes me up. I’m not
totally convinced it is TN. I have been to about 12 different doctors ,
ranging from dentist’s , endodontist, facial pain experts, 2 neurologists,
my GP, Rheumatologist, and Columbia pain clinic in NYC. (not sure I spelled
them all correctly) I’m at my wits end. Our pain sounds so much alike. What
are your thoughts? I’m not glad you are in pain, but am happy that someone
out there may understand what I’m going through.

:slight_smile: Beth

#12

Hi Beth and all,

If you are ok with going the pain killer method and you currently are
using opiate derived medications, then I would highly recommend
checking out methadone. My husband had similar short term results
with percoset and morphine however he kept needing higher doses and
increased frequency with them. Then he saw a pain specialist who
switched him to methadone and now he has round the clock relief on
one set dose for 2-3 years now. Even better is that he has better
mental and physical clarity than when he was on neurontin/dylantin
and all the other anti seizure drugs that he went through. Plus with
methadone they have tons of research already done on the long term
effects and it really is much less harmful to the body. You just
have to know that you will have to withdraw from it carefully if you
find you need or want to.

Chris has recently decreased his dose by 5 mg a day ~ from 80 to 75
mg and so far is having no problems.

This may not the best path for everyone, but it is good to know that
it is at least an option you can choose for pain relief.

Denise

#13

Beth,

Your story is so familiar. I have been down the same path. Going from doctor to doctor. All the doctors keep telling me is that it is some kind of nerve damage along the trigeminal nerve but it is not Typical TN. Did the doctors tell you that you have Typical TN? The pain that you describe sounds more like an Atypical form. Do you get the Electric Shocks?

I keep wondering if Atypical Facial pain is what I have to? Have you ever read about Atypical Odontalgia? It is described as a constant burning, aching in and around a tooth. Is that what your pain feels like? Sometimes I wonder if that is what I have. I have had teeth pulled only for the pain to remain. However, my pain is in my gums and radiates into my face. So, I don’t know. All these Atypical things sound so alike. It can all be so confusing!

Mine, like yours also gets worse as the day goes on and stress definetly plays a factor. I have just started Acupuncture because I am 16 weeks pregnant and I need to find an alternative solution since I cannot take any meds right now. I am really hoping that it works for me. I am sorry it didn’t work for you. I too am miserable and just hope that the anxiety and emotional stress I am under is not affecting the baby. I just don’t know what to do anymore…

Some things that help a little are …an Icepak, tens unit, and chewing gum. Have you tried any of these things? If not give them a try. You can get a tens unit from your doctor. I just place the pads over my face where it hurts and it helps. But of course the pain always comes back as soon as I take it off. How long have you had your pain? Do you know how it started? It must be so hard for you with such little ones. I guess I will be dealing with that soon too :slight_smile: What state do you live in? I live in MA. Please keep in touch. I am glad to have found someone else like me to share stories with. Of course I don’t wish this pain on anyone either!

Take care,
Lori :slight_smile:

#14

Hi Lori,

I live in Croton on Hudson NY. I visit MA all the time. My father has a Bed
& Breakfast in the Berkshires. My pain started about 2 months after the
birth of my second daughter. I was having tooth and gum , and face pain. I
had a root canal done on one tooth, and the one next to it I had an apico (
extracting the root tip from the bone up). Then the pain didn’t go away, so
the oral surgeon suggested that I have an apico on that tooth. After that
the pain still did not go away, so I had that tooth pulled. Then another
tooth went through the same 3 things ending in an extraction as well. So 2
pulled teeth & an appico on another tooth, about $7,000.00 later, I’m out of
the really bad burning and aching. I still have some uncomfortable pain, but
a bit better, I think it was about 6 months since the first sign of pain
now. Then 2 months later another tooth on my left side starts to hurt. I go
to a new dentist tell him my story, and he says I need a root canal on that
tooth. So I do that, and the pain gets sooooo bad now. I’m in constant bad
burning, and pulling, aching pain. I get another apico. Now I’m crying in
pain all the time. I keep going back to the dentist, oral surgeon. It cost
me about another $4,000.00, so $11,000.00. I’m on Percocet every day.
Finally I am visiting my sister in NJ and go to her dentist in pain. The
dentist mentions TN. I have never heard of it. I went home and googled it,
and started crying to my sister. From there the rest of my story that I have
written about happens.

It has been almost 2 years for me. I hate taking the pain meds, and had a
pain clinic tell me to go on methadone. I even went as far as to fill the
prescription, but just can’t do it. I want to get off the pain meds.
Methadone is too scary for me. I am going to try acupuncture again. I have a
really awesome GP ( my regular doctor) He is working with me to try and find
an answer. Have you ever heard of NICO ? I have heard of the other things
you mentioned. They also sound exactly like my pain as well. I do not have
electric shocks. I may see an oral medicine Dr. My new dentist mentioned
that it may be something to look into.

It must be so hard to be pregnant and going through this. Have you ever
tried yoga? They have prenatal yoga. I do find that that helps to distress
me. I have Prenatal beginner yoga tapes if you want me to send them to you.

I will keep looking for an answer. If I find anything I will share it with
you. Please feel free to private message me on my profile. It is
good to finally have someone who understands and to talk to about this. I
think my family is sick of hearing about it. I have even lost friends over
this. I guess they think I’m not telling the truth, or just looking for
sympathy. I had a very good friend tell me that I need therapy. That I am
trying to get attention. I guess other people just do not understand how
this effects everything you do, who you are. Anyway, is this your first
child? It can be hard with kids, but at the same time they take my mind off
it. They also are so cute, and lovable. My girls are the best!!! My husband
is also very understanding. I guess I’m lucky to have them and him.
Where do you live in MA? Are you working now? I left my job when my first
was born. I am a stay at home mom, but I teach Hebrew 3x a week. I hold a
teaching degree, and used to teach Kindergarten. I also make jewelry, and do
photography.

Please keep in touch.
Also I wrote to Lori, but I appreciate everyone who answered my post. I just
realized I didn;t thank anyone for that.

:slight_smile: Beth

#15

Please consider the Chiropractor approach. It is drug free and you have nothing to lose. I had all the pains you are talking about. It started as a dull aching pain, I had the root canal, then the tooth pulled, then the pain came back, always felt like it was in the tooth that was no longer there, then the electric shocks along with the hot, muscle ache type of pain in the jaw and behind my ear, etc…

The chiropractor showed me the crooked atlas of my spine (C1 and C2 vertibrae) on the Xray. It was there for me to see! He fixed it and my pain, shocks, hot achey feeling, etc. is gone!

Try it, you may find it works and it is DRUG FREE!

When I went to the neurologists (3 of them) they diagnosed me with Atypical Facial Pain, and/ or TN. They instantly brought out the perscription pad and began writing. When I suggested the Chiropractor they looked at me like I suggested a witch doctor. I went anyway, and am cured. I promised myself that I would share this story with anyone that I could find to tell them that Doctors do not know it all. Search for a NON-Medicated cure.

I am sure there are some people with a true diagnosis of TN. For them and this Horrible, horrible disorder, drugs are their only saving grace. But please be sure this is what you have by trying the chiropractic approach and removing the pressure on the Trigeminal nerve that is causing TN like symptoms.

#16

Hi NHM,

How long were you in pain before you started getting the electric shocks?
(I wonder if my pain will change into that) How many times a week did you see the chiro? You said in your above message that it took 2 months to see results. Is your pain completely gone now? Do you have to keep seeing the chiro to maintain this and how often? Do you know if upper cervical chiro is covered by medical insurance? I actually got a name of someone that has helped others with TN. I will give this a try most likely.

Thanks for your story. If upper cervical chiro works, I will have my life back!!

Thanks,
Lori

#17

Hi Lori,

The pain began like a toothache that would come and go for about 4
months. Then slowly increased to a sharper, then sharper paid until I
felt like I was getting electric shocks in the right side of my face.
The pain ran like lightening down my jaw and across my lip.

I had to see the Chiro 3x a week for the first 2 months - and looked
forward to it because he was so sure he could help me. While
traditional doctors only wanted to medicate me, he took the time to
explain how the spine effects all parts of the body and showed me on a
model how my spine was pinching the nerve.

After two months I had significant improvement and knew it would
continue to improve. I continued to see him 2x a week for the next 2
months. Then once a week for one month. The idea is that he puts your
spine back in place and your muscles need to be trained to hold it
there. You go often in the beginning because it keeps slipping out of
place quickly when you first begin the adjustments.

I know that the source of my misaligned neck was STRESS. I tend to
hold my stress in my neck and tighten my shoulders (someone else’s
reason for the misalignment could be entirely different, ie and injury,
environmental, etc.) I was pain free when I stopped seeing him. (that
was 6 months ago) I do sometimes begin to get the achy feeling and
toothache feeling, I even had one relapse where I felt a few shocks.
But I know that I then need to De-Stress and relax the muscles in my
neck. My chiro taught me excercises to do (neck rolls) and when I get
lazy and don’t do them, the achy feeling creeps in. But doing the
exercises again usually makes is go away again in a couple of days.

I am entirely convinced my neck is the source of my pain. My insurance
co allowed me to go for over 40 visits. Then they cut me off. The
Chiro wanted me to continue to come in once a month, but I have decided
(for now) to go it alone and continue my exercises, knowing that I can
go back to him if I need to. Call your insurance company and give them
the name of the doc and see if it is covered. Also check with the doc
they usually know what ins cos willl pay them.

I pray this helps you and you too can remain drug free.

-Nancy

#18

Hi Nancy,

Thanks for the info. So do you have TN or is it a pinched nerve in your neck causing TN like pain? So I am assuming if I had x-rays done that would show the doctor if upper cervical care is what I need and if not I guess I really have Atypical facial pain. You must have been so relieved in a way when the doctor showed you the x-rays and you actually had a reason for this pain and now something to possibly help you. I am glad this worked for you. I hope if I try this it will work for me.

Good luck to you,
Lori

#19

TN simply means Neuralgia (A sharp, shooting pain along a nerve
pathway) of the Trigeminal nerve. For me, I believe the solution is
finding your own personal cause of the Neuralgia of this nerve. Some
people get this pain as the result of a sinus infection, or TMJ, or
deterioration of the Myelin covering the nerve, or as in my case, a
pinched nerve.

I just believe that we should always look for the source of what is
ailing us and not simply medicate the symptoms. Keep searching (but
also take whatever meds you need to be out of pain in the meanwhile)
and I hope you will find YOUR cause.

Let me know how you make out with the Chiropractor search!

#20

I was just diagnosed and am in still alot of pain, I also have more constant pain but still have the shocks but they come and go, sometimes I can go a week without them and then some days it is nonstop. I have tried klonopin but it didn’t. I am sorry that u haven’t found anything to help with the pain and it scares me that after 4 years u are still in pain. Hopefully ur pain free days are soon!