Bilateral after Chiropractor?

Back in Oct I was having a major flare up and my gabapentin wasn't helping at all. Someone suggested trying a Chiropractor. By the time I got in to see him, I wasn't hurting any longer, but continued with the visit. He wanted to try 8 adjustments over 4 weeks to see if that helped. After the 3rd adjustment, I had a regular checkup with my PCP and mentioned to her that I didn't think the gabapentin was helping and she switched me to 25mg of nortriptyline. Later that day the right side of my face started hurting, up until this point it had always been my left. At my next appt with the chiro I mentioned to him that the other side was now hurting, he just looked at me strange and asked if I had had an MRI recently. I had an MRI on Oct 7th, basically looking for MS. I have the TN, I believe Type 1 & 2, I also go thru periods where I smell cigarette smoke that isn't there ( I smell it to the point that my eyes burn and I cough from it!!), plus I have moments where my vision blurs ( not black out, just kinda gray out from one side to the other and it's clear in about 30 mins). According to the neurologist my MRI was perfectly clear. I also had an EEG that was perfectly normal. So I was basically told it was just a qwerk of mine!! Anyways, back to the chiro, he kinda shrugged it off and went on. We continued with the rest of the appts with my right side hurting, type 2 hurting, off and on. By Dec 17th the pain had gotten so bad I called the neuro and explained all that was going on. She put me on carbamazepine 200mg twice a day with orders to up it to 400 mg twice a day if I didn't feel like it was helping. Today I upped it to 400!! I guess what I'm wanting to know is what could've happened at the chiro to start the pain on the other side too??!?!?! Is it possible that it's not really TN, something else?!?! My first attack was textbook type 1 TN. Since then it's been more type 2 with only one other type 1 attack(that lasted off and on for 3 days).I hope someone can make any sense of this!!

Thanks,

Jessica

I read a book that said a chiropractor may help tn. I went a few times and
the last time after the adjustment, I was so dizzy I could hardly walk. The pain became unbearable and I wound up in the emergency room. I warn everyone to stay away. I was warned and I did not listen. I will never allow anyone to “adjust” my spine again. It is not without risk. I wound up with a MVD. It is not without its downside but the unbearable pain is gone. I take oxycarmazepine and gabapentin at night and thank God every day that the pain has not returned.

Oh my !! Couple of thoughts-my experiences, TN type 1, 5yrs. my MRIs were also pronounced “clear” by the radiologist and my Neuro Dr. Later on at appt with amazing Neuroseurgeon that is a TN facial pain guru, he quickly identified blood vessels that were impacting my nerve. He explained that the majority of radiologists out there are looking for tumors, lesions, things that don’t belong, blood vessels are suposto be there, so they are not give a second glance. Only someone truly experienced with this would know how the anatomy affects our pain. The Switch in pain sides could be residual pain. Circuits are overloaded on one side, and the brain will actually transfer the pain sensations to the other side of the body. This happened to me, suddenly felt like a bug was flying into my left ear! When my pain was always on the right side. I have learned that the right Dr is a life changer!!! I am so far 6 mo pain free and pill free after an MVD. Surgery is not the answer for everyone, but an experienced Dr is an amazing experience.

So, I’m not sure how to help, there is so much involved, I hope that you can get to a Dr that doesn’t look at you funny!!! And can get you on the right path. Good luck!

Hi, I've got a spinal injury as well as TN and have been seeing a chiropractor for around 10 years. Like any form of intervention or support we seek, its really important to ensure that whoever you are dealing with understands the condition you are being treated for. My chiro regularly talks with both my spinal surgeon and neuro so it becomes a wholistic approach. We're not bits, but a whole - I like to think of them as my wellness team, they all contribute, but most importantly are well informed about my conditions.

I have tN 2 pain started in my teeth....I have an extremely long story which I will skip for now and tell you after many doctors I tried chiropractic also at first it seemed to relieve my symptoms but within a few wks it felt like it was the cause of the spread to the other side of my face 3 months of going 3 times a week I quit although at the time I was having those all day headaches that were the worst pain in my opinion it helped stop those....We all would love to believe this disease is something else anything but this You say you kinda lose your vision or it blurs I had pain behind both my eyes it was also one of the worst pains and scared me bad there are times when I get up from sitting or knealing and I feel like im going to black out it lasts for 30 secs then is gone not sure why this is but I know it is from my TN. I am currently on 75mg a day of nortriptyline the anti sez meds had an adverse effect with me....but these meds I am on have taken a lot of the scary pains away I hope u can find relief soon my friend!! feel free to write me anytime!



tiffanie said:
Oh my !! Couple of thoughts-my experiences, TN type 1, 5yrs. my MRIs were also pronounced "clear" by the radiologist and my Neuro Dr. Later on at appt with amazing Neuroseurgeon that is a TN facial pain guru, he quickly identified blood vessels that were impacting my nerve. He explained that the majority of radiologists out there are looking for tumors, lesions, things that don't belong, blood vessels are suposto be there, so they are not give a second glance. Only someone truly experienced with this would know how the anatomy affects our pain. The Switch in pain sides could be residual pain. Circuits are overloaded on one side, and the brain will actually transfer the pain sensations to the other side of the body. This happened to me, suddenly felt like a bug was flying into my left ear! When my pain was always on the right side. I have learned that the right Dr is a life changer!!! I am so far 6 mo pain free and pill free after an MVD. Surgery is not the answer for everyone, but an experienced Dr is an amazing experience.
So how did you find a good doctor? Would you care to share his name or address? I have been living witness TN for 3+ years, have had Stereotactic Radiation, tried 10 different types of meds and am still living with daily pain. I also have MS which from what I understand complicates my situation but I need to find some other options. I am from NE but traveled to AZ Mayo to treat it so going somewhere else to find a possible alternative is feasible for me if you wouldn't mind sharing the doctor's name and location. Thanks

Of course I would be happy to share his info. Dr Ken Casey, in Trenton, MI. He has vast experience, is brilliant and, compassionate! His book, “striking back” was an amazing resource for me and my family.
He truly changed my life, I have a straightforward compression case, but he is very knowledgable, and dedicated to facial and neurological pain and disorders. I am happy to answer any questions !! Best of luck!!

Hi Awesa,

The first thing to know about TN is that it’s consistently inconsistent.
In my opinion not enough is truly known about TN to be able to answer those of us with TN and our questions.
That being said we all share similarities but no two of us are alike in our experiences…
In my experience I was diagnosed bilateral a few months after my initial diagnosis with TN.
Like you my one side started as classic TN 1 and the other side was more TN 2.
My pain is never on both sides at once.
It could be just coincidental that your other side started TN after a Chiropractor visit, but who really knows?
I was diagnosed in 2002, over the years None of my MRIs showed any signs of compression.
When I had an MVD this past April, 3 compressions were found.

All this to say until a true cause for TN is found, some questions are left unanswered…in the meantime we try and focus on managing our pain…
I hope your pain subsides…maybe keep a journal of how your pain changes to look for any triggers?
(( hugs )) Mimi

have you ever had an mra? these are more detailed. although i habve type 2 and nothing shows on mra either which is common with atypcial. just keep working on getting answers til you feel better. if you arnet doing better than meds and other treatment has to keep being tweaked. this is not an easy condition to deal with at all! year ten coming up for me but i have found some things that help and keep working on the others.

i would try to get to experieced dr who sees lots of tn type patients. my mainteance dose of neurotin is 900 mg a day. so you really arent on a lot of medication. but they start you out on minimal and gradually up it due to type of medication this is. i take three types of meds to control and maintain the pain i am currently at possible adding a fourth but still not on a lot compared to some.

i though i was type one at first too but you can have both symptoms with either one.

blessings for pain free days for you

I just read your post & found some things quite amazing to me!! I have had Trigeminal Neuralgia and Occipital Neuralgia for 14 years. The amazing thing is I also smell cigarette smoke sometimes when I am nowhere near cigarettes. I can be in the mountains far away from anything & smell it. That is really weird you also smell it. I told my doctor this years ago and he just said who knows... I also get blurred vision, kinda like a blurry, cloudy curtain hanging over mi right eye when the pain is bad. I think there is some connection but the question is what? I am 55 years old and I know my mom smoked while pregnant with me. Do you know if your mom smoked while pregnant with you? I am trying to figure out the connection to smelling cigarette smoke??? I never smoked myself.

I'm pretty sure she didn't smoke while pregnant with me, I'm thinking she didn't start until after my younger sister was born. But I was around all my childhood, never since. I never have any of my symptoms at the same time. My vision problems started nearly 13 yrs ago, the smoke smell has been going on for about 10 yrs and the TN just started in 2010 and I'm only 35 yrs old, pretty young for TN from what I understand.

David said:

I just read your post & found some things quite amazing to me!! I have had Trigeminal Neuralgia and Occipital Neuralgia for 14 years. The amazing thing is I also smell cigarette smoke sometimes when I am nowhere near cigarettes. I can be in the mountains far away from anything & smell it. That is really weird you also smell it. I told my doctor this years ago and he just said who knows... I also get blurred vision, kinda like a blurry, cloudy curtain hanging over mi right eye when the pain is bad. I think there is some connection but the question is what? I am 55 years old and I know my mom smoked while pregnant with me. Do you know if your mom smoked while pregnant with you? I am trying to figure out the connection to smelling cigarette smoke??? I never smoked myself.

I never had both sides real bad at the same time either. Mine started our right sided only and after about 3 years it started on the left also. I always have the pain at lower levels on the right side and it then worsens every week or so. The left side also flares up but maybe about every three weeks. I have learned certain ways to cope, have certain meds that work after trying many meds and also have the best Neurologist around allthough I fly 2,000 miles to see him for my appointments. I pay the costs for flying, motel and care rental & my insurance pays for the visits, meds, etc. I have not been able to find a goos Neurologist where I live, most are arrogant and too busy.

Mimi said:

Hi Awesa,

The first thing to know about TN is that it's consistently inconsistent.
In my opinion not enough is truly known about TN to be able to answer those of us with TN and our questions.
That being said we all share similarities but no two of us are alike in our experiences...
In my experience I was diagnosed bilateral a few months after my initial diagnosis with TN.
Like you my one side started as classic TN 1 and the other side was more TN 2.
My pain is never on both sides at once.
It could be just coincidental that your other side started TN after a Chiropractor visit, but who really knows?
I was diagnosed in 2002, over the years None of my MRIs showed any signs of compression.
When I had an MVD this past April, 3 compressions were found.

All this to say until a true cause for TN is found, some questions are left unanswered...in the meantime we try and focus on managing our pain...
I hope your pain subsides..maybe keep a journal of how your pain changes to look for any triggers?
(( hugs )) Mimi

A der friend got ATN after the chiropractor tore the vertebral artery adjusting her neck,and she had 6 strokes.

Sorry to hear your got TN on another side after trying a chiropractor. I used a chiropractor when I first presented with just low back pain. After a few adjustments, I started to get bilateral ATN with neck pain. That was when I was 23, I am 57 now. I did have a remission of this bilateral ATN for almost 20 years. Now it has been 2 years of constant ATN and atypical GN. After chiropractic I also developed TMJ with this ATN. A surgeon did do surgery on my tmj joints, I had screwdriver pain in my ears. That went away. I am not entirely sure the chiropractor caused my tmj too because I had a blow to side of my head, ear and face, almost damaged my ear drum, it was bleeding, could not hear for weeks but shortly after that I started to get the headaches, temporal pain and ear pain. Hmmmmmm, I do believe getting chiropractic adjustments, especially the one where the doctor turns your neck from side to side very quickly, you hear all kinds of popping can cause bilateral ATN. It happened to me and there was no internet to search about facial pain. And there are chiropractors that do adjustments to treat TN and sometimes it helps. Everyone is different.

I am hoping for remission again. I have had too much surgery of the spine to even consider surgery for this type of atypical facial pain, usually a poor outcome, I am however interested in PNS, peripheral nerve stimulation. You may be able to find a doctor by going to www.sjm.com, patients, neurostimulation, enter your zip and usually neurosurgeons and pain management doctors will come up within a 100 mile radius, most do spinal cord stimulation. I am on meds, they help sometimes, but ATN has a mind of it's own. Good luck to you, Sharon

Was this a regular chiropractor, or one who is a specialist in upper cervical? Some people have had very good results after seeing a NUCCA chiropractic specialist. I am hoping to see one soon. My neck has been bothering me for a long time, just had x-rays done that show I have a problem (dr. didn't give me much info). She said there's a problem and it would seem that nerves on my right side are affected, same side as my TN and my right arm has been weak for years. Always dropping stuff.

That turning the head side to side is what resulted in a very dear friend having her vertebral artery torn, and 6 strokes later she now has ATN. I am told NUCCA does not do the jerky neck adjustments, but after seeing what my friend has been through the past two years, I am leery.

This was a reg chiro I saw and I never felt comfortable with what he was doing, just thought he knew more than I did. He did tell me more about TN than either of my other doctors! I have been doing some digging and have found a NUCCA chiro nearby but of course he doesn't take insurance. I'm just trying to figure out if I want to put out the expense and give it another try but I am leery for some reason!!

Tiffanie - would you be willing to share the name of your neuro doc and is he located in the US or elsewhere? I’ve got TN2 from a jaw injury about 18 months ago ( it’s the constant burning / boring type pain). I’ve seen several doctors in the SouthEastern US, but none seem to have any solutions or options to consider. Not sure if your provider could help or not, but it sounds like someone who at least has some knowledge about the condition. Thanks for any help you can provide. Thanks, Jeff

I have been seeing a chiropractor since last Jan. This chiropractor deals only with the head and neck. My pain levels have dropped 80%. There are only a few of these Chiros in the U.S. Dr. BEEBEE IS IN Seattle. It is not your regular turn,twist,and snap. She uses light force adjustment. I was able to go from 2000 mg of Tegretol a day to most days 200-400' Migraines went from 16-20a month to2-3'. TN very tolerable. Would be glad to share more info. My worst days are barometric pressure changes,when a front moves in.