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General General TN & GPN (Old Site)
1

I live in Arkansas in a rural area. It’s been a long painful journey with so many dx’s. About four months ago my gp said You have atypical face pain and put me on gabapentin. It would work then after a couple of weeks stopped so the dosage was upped. At 1800mg she sent me to the neurologist in our closest town of 15k people. I had a MRI a week ago that he read and said was normal. He said he was thinking about sending me to a neurosurgeon. I’m now up to 3600 mg gabapentin and 400 mg tegretol. He says I’m a complicated case and actually pulled out a book for reference at my last appt. he’s changed my dx to atypical facial pain in the trigeminal nerve area… Is that even a dx? He’s told me I can’t have tn because I don’t have shocks that send me to the floor. The tegeretol has helped but i still have some pain most of the time 1-4. I think I probably have atypical tn but really need a good Dr. To help me with this. I also use lidocaine cream which I’ve found on here. I’ve been lurking around on here for many months. I’ve searched for dr.s but the ones I find only talk about tn not atn or I could have something else. Here are my symptoms…please help.

Constant pain left side… the location changes thought the day. Before gabapentin pain 6-9 all the time. Pain above teeth is the nucleus… Lol pulling pain behind eye.seen specialist prior to dx and dx with superior oblique palsy… Neurologist disagrees. Have slight prism in right eye to help .70 astigmatism in both eyes and progressive lenses. Pain is in my jaw area felels burning pulling. My gums often feel so raw. Yet I touch them and they are fine. My top molars often feel like they are rotting out of my head.(they aren’t). Pain behind my ear going done my neck. I feel as though I’m having spasms in jaw and temple area at times but I touch it and no spasm. Until the tegretol started working I had had about 5 shocks all in my teeth area. Now that it’s working I’m getting them several times a day usually when I talk or are in a car they hurt but not excruciating. I’m sure I have more variations of pain but that’s I I can come up with in my tegretol fog…lol I’ve cried over 30 times from this pain and I’m not the crying type. The pain wasn’t always constant and best I remember it started about 6 years ago.

2

Oh hon, did you try also the lidocaine mouthwash?

Did you look at Google Images: Atypical Face Pain

MRI without showing nerve = doesn't matter -- If I was a betting woman, you have a bad case of Atypical Face Pain

BUT if you get shocks in teeth - you can ALSO have TN1. Many here have both and MVD can make your life better but it has to be THE right surgeon...not just any TN surgeon ---- at least who does 50+ per year.

Here is a video by my neurosurgeon Dr. Casey - the one that wrote the book we read here : Striking Back

This video is TWO hours, you can break it down and pause it, watch part of it now, some later

This is THEE man.

http://www.fpa-support.org/2011/02/video-the-tides-of-neuropathic-pain/

Maybe you can glean some clues from this video --- Can you travel ? How is your insurance?

Hope this helps.

3

Thank you so much for your response. I will have to travel no matter what. I’ve googled and imaged every thing you can imagine. I do have some magic mouth wash with lidocaine in it for geographic tongue which I think is somehow related …but the drs say no. Can that mix with the cream? My neuro doesn’t really endorse using the lidocaine. I asked about a compounded mix cream ad he looked at me like I was crazy and said that doesn’t really work. I don’t fully understand the difference between AFP and atn… Where is he located? I’m really unsure about brain surgery. I’m 38 and 10 & 6 year old daughters…also run an embroidery/imprinting business.I just want to make sure I’m around for them. I haven’t 100% accepted that this is as bad as it is. I keep hoping they are going to find something stupid. The MRI did find a sinus retention cyst which they said was nothing. I’m wondering if sinus surgery or tonsillectomy caused this? The symptoms seemed to start after…about 5 years ago and have progressed over time. They would come and go.

4

ARgirl,

I am also diagnosed with Atypical Trigemeinus Neuralgia. Whit atypical they mean that it is different than the known 'Typical'. My pain is also in the teath and gum areas.

► For what it is worth: I get Lyrica (=Pregabaline) and Contramal (=Tramadol Retard). As my pain manifest tiself only in lying down position, I take these medication only during the night. It does not heal, but it helps against the pain. My Dr. is a neurosurgeon and - after seaking around - a good one that I trust.

I hope this might help you somewhat.

Regards from Europe,

Walter

5

how close are you to the DFW area? Dr Jonathan White (neurosurgeon) specializes in typical TN, but Dr Joseph Vaughn (neurologist) specializes in atypical facial pain syndromes. They are both at UT Southwestern in Dallas. I have seen both, as I have atypical TN. DR Vaughn helped a great deal. Let me know if you want contact information. Best of luck in finding relief!
mrl

6

ARgirl, I agree with KC's assessment. I too live in a small town in South Carolina. Fortunately I have a medical background from working for a Neurosurgeon in Oregon (where my family is), so have some contacts and inside help. But for me, I have traveled to Oregon and Pittsburgh to get expert opinions. Some doctors are willing to do consultation or follow-up thru e-mail and phone calls - they usually want to meet you first (check out "Doctors" tab above for doctors members have recommended). I highly advise that you keep an up to date copy of your medical records as well as any scans you have had done (not the report, but the actual image which you can get on CD). After I had 3 opinions and they all pretty much lead to the same diagnoses (Atypical TN, Occipital Neuralgia and Geniculate Neuralgia), I had to look at if I wanted to continue trying medications, go to more aggressive treatments, such as nerve block, nerve stimulator implant, botox, RFA or the final step: surgery (which turned out not to be an option for me). I had to find the best way for me to deal with this ineffable pain. I ended up seeing a Pain Management Specialists (an Anesthesiologist that specializes in pain) - and he turned out to be the doctor that would help me the most. He is about 70 country miles from where I live; but he helped find a winning medication combination along with Botox injections (I had previously tried 14 medications, nerve blocks, and had a nerve stimulator implanted and then removed over a 2 year period). Between the medication combination and Botox my pain (for now) is at the lowest it's been in 4 years and I am thankful for everyday I wake up and am not in constant agony. The Botox will eventually wear off and I may develop a tolerance to the medications I am taking; but like I said, I bless everyday I get.

If you want to elaborate on any of the above, feel free to send me a private message. Best wishes. Gail

Also I recommend as KC did, the book Striking Back... I call it my bible. It is bookmarked, highlighted and dog eared; but is a great summary from finding a diagnosis to treatment options. I highly recommend it. Knowledge is power (check out the Face Pain Info tab above for good links) the more you read and research the stronger you will feel when you come down to choices of the lessor or 2 evils so to speak.

I have 5 doctors on my team: Internal Medicine doc, Neurologist, Neurosurgeon (if necessary), Pain Management Specialist (!) and a good psychiatrist. Then the 6th member is me, who ultimately has to weigh the options and make an informed decision as I can.

Hope this is helpul

7

I can’t tell you how much it helps to know I’m not alone and there is help. Dallas is about 8 hours. Little rock Springfield mo Kansas City and Nashville would be best…these are closest/have family. Ive looked at these areas on dr list and didn’t find anyone that seemed into atypical. Ive read the face pain info…many times…lol. Honestly I’m willing to go just about anywhere for help. Has anyone ever heard of constant facial pain being only muscle or other related? My dad has suggested going somewhere that is not only focused on neuro. From my research it’s always nerve related. Have Aetna with 5k deductible but hubby’s company pays 2500. So after 2500 I’m 100% covered. We’ve decided this is the year to do what we gotta do. Sorry for typos on tablet. Will get book and watching video…wow so informative.
Any of you have pulling sensations? Anyone have a spasm feeling on head above ear as well as jaw area? I have no pain opening my jaw chewing etc. when they say pain caused by say touching is that pain instant or comes after.

8



Gail C said:

ARgirl, I agree with KC's assessment. I too live in a small town in South Carolina. Fortunately I have a medical background from working for a Neurosurgeon in Oregon (where my family is), so have some contacts and inside help. But for me, I have traveled to Oregon and Pittsburgh to get expert opinions. Some doctors are willing to do consultation or follow-up thru e-mail and phone calls - they usually want to meet you first (check out "Doctors" tab above for doctors members have recommended). I highly advise that you keep an up to date copy of your medical records as well as any scans you have had done (not the report, but the actual image which you can get on CD). After I had 3 opinions and they all pretty much lead to the same diagnoses (Atypical TN, Occipital Neuralgia and Geniculate Neuralgia), I had to look at if I wanted to continue trying medications, go to more aggressive treatments, such as nerve block, nerve stimulator implant, botox, RFA or the final step: surgery (which turned out not to be an option for me). I had to find the best way for me to deal with this ineffable pain. I ended up seeing a Pain Management Specialists (an Anesthesiologist that specializes in pain) - and he turned out to be the doctor that would help me the most. He is about 70 country miles from where I live; but he helped find a winning medication combination along with Botox injections (I had previously tried 14 medications, nerve blocks, and had a nerve stimulator implanted and then removed over a 2 year period). Between the medication combination and Botox my pain (for now) is at the lowest it's been in 4 years and I am thankful for everyday I wake up and am not in constant agony. The Botox will eventually wear off and I may develop a tolerance to the medications I am taking; but like I said, I bless everyday I get.

If you want to elaborate on any of the above, feel free to send me a private message. Best wishes. Gail

Also I recommend as KC did, the book Striking Back... I call it my bible. It is bookmarked, highlighted and dog eared; but is a great summary from finding a diagnosis to treatment options. I highly recommend it. Knowledge is power (check out the Face Pain Info tab above for good links) the more you read and research the stronger you will feel when you come down to choices of the lessor or 2 evils so to speak.

I have 5 doctors on my team: Internal Medicine doc, Neurologist, Neurosurgeon (if necessary), Pain Management Specialist (!) and a good psychiatrist. Then the 6th member is me, who ultimately has to weigh the options and make an informed decision as I can.

Hope this is helpul

9

ARgirl, very sorry to hear about your condition. I have had ATN for 13 years. I went through everything imaginable.

All medications, nerve blocks and MVD surgery with Dr. Peter Janetta. That helped a little for about 8 months, then came back with a vengeance!

I am now taking a combination of Percocet and oxycontin. It is the best combination so far.

I am reluctant to have the stimulation leads put in. I have also read where some people with ATN are using Medical Marijuana. Also reluctant about trying that.

My pain starts in the middle of my forehead on the left side, and runs down through my neck. On real bad days, it goes to my shoulder.

Eating, sneezing, coughing, wind, sun, stress, pretty much anything starts my pain.

I know two days ahead when we are going to have rain or snow!

It is burning, aching and raw, and I feel like I want to take all my teeth out!! Just like most of us with ATN.

Good luck with whatever you try.

Kathy

10

HI, and welcome. unfortunate though ti is that y9u have to be here! :-)

I want ot put soem though into this,a dn then respond later,.

For now, jsut wan tot say taht I was, in actual fact, Dx'd w/ TN despite teh fact that it did not presetn in the typical way. I had pain on both side, stronger usualy on left. Soem searing, electircal chock type pain, but pain al the time. IN the beginning, it felt as if I were wearing a mask on the lower 2/3 of my face with nails inside, stabbing into my face 24/7.

Also, there were many other symptoms.

Be aware that even many a neurologist will not recognize of feel confident to DX something pif it's not the' textbk' case'things if it does not follow what they may expect.However, each case will present differently -- that can be true for htis, as well as migraine ( which I also learned i had once I saw an excellent neuro in the Baltimore area,

IN fact, if you can travel, I would highly recommend her; she is brilliant, very good doctor adn very caring person, and understand many different presentations of severe pain; it would be well worth the trip!!!!!

11

How long did most of your spend at your 1st visits. Is it just a one office visit thing or? I will have a ctscan, records and mri to bring.

12

Wow Kathy! Your story sound similar to mine. I had my first MVD with Dr. Jannetta too...followed by almost 9 blissful years of NO PAIN :) Unfortunatley it came back and a repeat MVD only gave me about 9 months before it came back again. I tried stereotactic radiosurgery (like Gamma knife) but it did nothing but make my forehead numb and screw up my memory. I've tried the entire gamut of meds and none of them seem to relieve my pain and ALL of them gave me horrible side effects..from stomach pains to altered personality to suicidal ideation. I finally decided to give them all up and just stick with pain meds (low dose oxycontin twice/day), which takes the edge off the worst pain and makes it tolerable. Normal for me is to have constant pain of a 3-5 level. I have recently discovered that topical cannabis oil works to decrease the pain I feel in the area of #12 tooth root. I just dab a little on my cheek over the area and it seems to help. I have tried other combo "salves" that have been suggested on this site, but they have not helped me (and they were expensive and NOT covered by insurance). Good luck.

teetat11 said:

ARgirl, very sorry to hear about your condition. I have had ATN for 13 years. I went through everything imaginable.

All medications, nerve blocks and MVD surgery with Dr. Peter Janetta. That helped a little for about 8 months, then came back with a vengeance!

I am now taking a combination of Percocet and oxycontin. It is the best combination so far.

I am reluctant to have the stimulation leads put in. I have also read where some people with ATN are using Medical Marijuana. Also reluctant about trying that.

My pain starts in the middle of my forehead on the left side, and runs down through my neck. On real bad days, it goes to my shoulder.

Eating, sneezing, coughing, wind, sun, stress, pretty much anything starts my pain.

I know two days ahead when we are going to have rain or snow!

It is burning, aching and raw, and I feel like I want to take all my teeth out!! Just like most of us with ATN.

Good luck with whatever you try.

Kathy

13

For Dr. Casey / the one with the book and the video --- I did ALL my consulting on email..... then I booked the flight within 8 weeks! He's outside Dearborn Michigan.

1. My neuro in KC mailed my scans to Dr. Casey...

and Dr. Casey had me fill out a pain scale quiz--- and a small paragraph in my email to him. A few emails back and forth.

2. We got there and stayed in the 2 bedroom hospital apartment rental for $90 per nite!!! I met him the day before surgery. Felt I already knew him from all my studying about him.

2 . He found two spots, covered them with Teflon pads - within 1.5 hrs was done.

Most of us stay ONE night in ICU and ONE night in regular room -- then go home

3. I did not want to fly home - was afraid of air pressure --- so we spent the weekend driving home..... I slept for 2+ weeks

and started my life again!!!! No pain 2+ years.

It is not brain surgery - it is cranial surgery! He said on a scale of 1 - 10...... this is a 1 for complications.....very low rate for complications. I was afraid to not wake up because general anesthesia.... he put all my fears to rest. My kids, young adults, lost their dad, so I didn't want to be messed up in any permanent way!

If you want his email - just ask me at ■■■■■■■■■■■■■■■■■■■■. I've recommended him to a handful of people here who took the plunge! All were made better.

My neurologist said do NOT use anybody here in KC -- told me to travel.... So I booked THE MOST qualified MVD guru who has been doing this since 1970s !!

Many here put lidocaine patches on their face and/or the cream on face. Plus mouthwash in mouth. There are special pharmacies that can make special creams - let me know if you want me to dig that up - but sounds like your doctor doesn't know much of what helps us and what doesn't --- collectively, here, we know more than many doctors!!! What works, what doesn't work so well.

Here is a list of creams etc. from US who have / had pain!

http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-instant-help-for-pain-now-topical

Last, if you want good chance of MVD -- do NOT get a gamma or cyber knife done first --- will mess up chances of better MVD.

Kimberly

14

Would you please tell me why your pain started in the first place. I have the same symptoms. You can see my story.

I am taking gabepentene 300 mg 3 times a day, meaning 900 mg and it is helping me to manage the pain. I am going to see a neurologist. I want you to go to this site and read more about this procedure http://skullbaseinstitute.com/

or just type skullbaseinstitute on Google and read about Dr. Hrayr K. Shahinian. Based on his site only 3 dimentional MRI-Neuro imaging with contrast injection will be able to show if you have trigiminal nerve damage. This might not be available in your city. I live in Tucson, AZ and I do not even know if we have this here but if I were you, I would do the research myself and find out. Dr. Shahinian does a surgery. Please copy and paste to read about this surgery

http://skullbaseinstitute.com/trigeminal-neuralgia-tn/ let me know..Nesrin

15

There is a Dr. But he is in Houston Tx. He is Dr. John Slopis at the MdAnderson Cancer Center at the Brain and Spine center

he is also the Head dr. for the NF1 Clinic for Adult and Child bu they also may help, they have done severval test on me thier no# is713-■■■■■■■■

16

As they say-- O M G! Kimberly, KC, you said it all, and I am so glad that I took your advice last year, I am 7 months, pain and pill free. Dr Casey changed my life. He took one look at my “clean” MRI, and identified the blood vessels. Radiologists and other Dr’s look for tumors and such. Blood vessels are Normal and not looked at as a threat! I traveled from Florida to Michigan. One day in ICU, and discharged, spent 4 days in a sweet bed and breakfast. And flew home. The main thing, is trying to find a Dr who KNOWS TN and is fluent troubleshooting our myraid of symptoms, and can recommend an option. dr Casey did my MVD, and he is fluent with other options, he has seen and done most of them. And still works tirelessly seeking a “cure” for facial pain and spasms.
Good luck, send any questions, and be your own advocate! In some cases, we don’t have to accept the drug filled fog of a life that we resign ourselves to. The right doctor makes all the difference.
Xoxoxo To you, Kimberly !!

17

Thank you thank you. I’m watching his video over this weekend and most likely will contact him. Nesrin, I read your story. That is horrible. I don’t have an exact date of it starting. My long term memory is horrible. From times long before I started all the meds. When we lived in FL I was constantly in the ents office after surgery with ‘sinus’ pressure and pain especially over my teeth and had even went to a dentist about it and said my teeth were fine it was probably sinus or clenching. Also had tonsils and adenoids out aboutn6 mo after sinus surgery. Around that time I went to an eye dr. For ‘pressure’ behind my eyes and the feeling something wasn’t quite right. I passed my eye exam and he said it was my allergies. All I of this was around 5-6 years ago. The pain has come and gone always attributed to my allergies. In April the pain behind my became constant. I was in my dry office several times. Pain above my teeth was a lot as well. she put me on another round of antibiotics and said she wanted ctscan. Since my ins had such high deductible I wanted to wait. On my bday I called her 5-29 and said the pain was horrible. She asked if it’s the worst I’ve ever felt and I said yes and she said go to the er and make sure they give you a ctscan. They did said my sinuses were normal…they said we have no idea why u are in pain and sent me home. I was ticked. Oh and when in had gone to my dr. Previously I told her about the pain and crying she said I think you are pre menopausal and changed my antidressant. When I called her that day after er she said let’s change u back to lexapro. I was really ticked. I told them it’s not like that and I was also having this spasm feeling in my face and templish area. I had already tried loratab,which did nothing. Nor regular NSAIDs and am also on diclofenic. I said how about a muscle relaxer. So that did nothing as well. time for 2nd opinion in dr. By that time I have looked up tn or temple tendinitis. He said no and he just knew it was tmj. Gave me an tmj injection. Which did nothing. He told me to live with it and gave me fiorecet. MORE TICKED! So then I remembered my dr. Saying how bout getting your eyes checked. So off to the eye dr. He gave normal eye exam but then tested tracking and had issues. So he ordered prism glasses. They came in and didn’t help. He re tested and ordered more prism thicker prism glasses…i could hardly walk. I was done with him. So on the internet I found vision specialist of michigan. I had a bunch of the symptoms. So off to michigan. She dx me with superior oblique palsy. Oh I do also have like overlapped vision and anxiety…which I’ve figured out now the anxiety is when the pain is bad. This was a 3 day visit. The glass help somewhat…vision feels better with them on than off. Have .70 astigmatism in both, .25 prism right eye, & progressives. The pain continued she said you need more prism and I was like how does this help the pain above my teeth and jaw. She said you probably have something else. So back on the internet. I kept coming back to the tn nerve as that is exactly where my pain is. Back to my gp. I told her all I had did. I said I’m desperate for relief and the pain follows then tn nerve. She said its atfp and put me on gapapentin she wanted a MRI but I wanted to wait… as long as the mends helped. They did but it’s short lived…then up it, up it, up it. At 1800 mg she said you’ve got to go to neuro. The rest you know. The eye thing gets everyone. It’s a constant pulling like a rubber and is twisted really tight and pulled back. It’s sore to the touch. The meds do help but all seem to just stop then I’m back to really bad pain. Sooooo this is the looong story. I can’t find much on eye pain or spasm felling.

18

I am assuming he only did an MRI on your head. Make sure to have your neck scanned also. MY TN definitely comes from my neck, this been proven by by my pain doc, neurosurgeon and neurologist.

19

No neck MRI :frowning:

20

just keep in mind the therapies for typical TN and atypical facial pain disorders can be very different. I understand there is a doc in KC who has helped a number of members who had atypical pain patterns. I’ll try to find his name.