ON/ATN/TN - Multiple Sclerosis? - Essential Tremors - Light

I am diagnosed with bilateral ATN, bilateral TN, & ON. Just recently I have noticed that light is really becoming an issue. I am finding it hard to EVER get out of bed during the day. I typically have my nights and days mixed up as it is (which I have tried to get worked out - to no avail) but just within the last week or two it seems as if light in general makes it difficult to open my right eye, which normally I do not have issues keeping open.
Has anyone else had this issue?
I had Multiple Sclerosis ruled out in April 2009 but was told I would be watched due to the facts that I have at ET my entire life and I have had my bilateral ATN & bilateral TN since the age of 17 following my Maxillofacial Jaw Reconstruction surgery. I have also suffered from widespread nerve damage (especially in my hands/fingers & feet/toes/legs since my Discectomy, Fusion, & Laminectomy on my L4-L5 & L5-S1. Now that I am on disability, my insurance is denying a new MRI and even denied my appeal. They have also denied a Rhizotomy which was an option just a few years ago under the same insurance. It just seems what few options I DID have left, now after 26 years of neuralgias and not having a clear cut diagnosis of MS...I'm being swept under the rug. I could see if I was going in every other month or even every six months and giving a new set of symptoms but I have been giving them the same symptoms now for the over four years with very little change other than frequency and severity...and they just look at me and continue to do med changes but won't say anything. They make me feel as if I am a loon. I wish they would either give me some kind of clue as to what they think may be going on or just flat out tell me they think I am a nut job. They have treated me with several different types of meds that are used in early stages of MS...some work...some don't. But they don't say a word. They're completely hush hush. I would think after dealing with this for 26 years...they would have SOME answers!
Has anyone else experienced anything similar to this? I am beginning to feel so defeated. I don't even know why I am trying anymore. If I can't get answers as to what is going on...then how can I help myself?! I guess I shouldn't get too upset...they haven't sent me to a psychiatrist. I just don't know anymore. :(

Hi Mindy, Your not alone. I have ATN and ON and GN and bodywide nerve compression syndrome- bilateral carpal, tarpal, ulnar, and on one side radial and pareanol. I don't have MS. I do have systemic lupus.

My neurologist mentioned possible adhesive arachnoiditis caused by inflammation from lupus and mctd. I'm having another MRI in a couple months. For now I have other pressing health issues. My EEG showed slowing in the left side of my brain and he thinks I am having seizures. I'm already on tegretol for TN. My rheumatologist isn't sure my nerve problems are from lupus.

I have had peripheral nerve issues for twenty years now. There are many causes. How many neurologists have you seen? What tests and labs have you had done? Just curious. At first my PN was just in extremeties and mainly freezing and burning pain. The past 3 years or so (since my lupus dx 2010) I have had only zapping (horrible zapping) type pain and of course now muscle pulling pain from the compressions. I'm getting set up for surgery for bilateral carpal and tarpal tunnel release soon.- and I do PT and wear splints. It helps. I have connective tissue damage that adds to the inflammation issues in nerves and blood vessels and inflammatory arthritis in my lower spine and si joint, while I have mechanical and osteoarthritis in my cspine. It has gotten really bad in my neck (radiculopathy, numbness in fingers, incontinence and balance issues) so I am having an anterior fusion feb 22nd. My rheumatologist believes that I have a domino effect going on with the inflammation in my neck from the oa and that this lends to the TN and ON and my goal is that this surgery (best case scenario) will improve those conditions.

I'm interested in more of your story..how long ago did it start? What other symptoms do you have? What tests? Etc... I'm not a med professional, just a patient with some experience in peripheral nerve conditions.

Love and HUGS, Julie

Thank you for replying, Julie. I am interest in hearing more of your story as well. Excuse me for jumping all over the board. Over the course of 26 years...I tend to jump around a lot when trying to explain what all I have been through (I also am very forgetful now so I tend to throw in facts way later. Sorry). I will try to break it down so it is easy to read.

When this all began for me, I had just turned 17. I had a Maxillofacial Jaw Reconstruction surgery. Soon after I began having "sinus infections" that I had NEVER had before. My oral surgeon also thought I was eventually having allergic reactions to the hardware left in my face or else some of it was becoming infected. Over the years one by one, each time I would have an "episode", I would go in to see him and he would make a small incision in my gumline and pull a wire out that was still wrapped around my eye socket area. Pretty soon I had gone into see him with yet another excruciating episode. He told me "Mindy, I have removed all the wires from the left side of your face. That CAN'T be it. I don't know WHAT is going on with you. I'm sorry. I don't know what to do for you". That was it. I just suffered. Thank God at that point my "episodes" were only lasting for about two weeks...about twice a year. I thought it was pure hell then...HA!! It wasn't until I was 25 and I was actually working at Crestline Memorial Hospital in Ohio (which no longer exists) and I was having one of my horrible episodes. I worked in admitting and I refused to turn on my office lights unless a patient came in to sign into the ER. At the time I was dating a doctor there at the hospital. He had stopped into the office to see me. He asked me if I wanted something because he saw how much I was suffering. Normally I would have said no because I hated pills. But I was absolutely miserable so I said yes. He wrote me a script for Vicodin. I just sat there in the dark in silence. 11:00pm could not come soon enough so I could go home. Finally I was half way home and I had to pull over. I was hurting so bad I pulled into a church parking lot because I was so sick. I turned around and went back and signed myself into the ER. The doctor working that night told me I was in luck because there just happened to be a doctor on call there in the middle of the night from a local town checking on a patient. He called him down to see me. He was a neurologist. IMMEDIATELY he said "Tic Douloureux. Trigeminal Neuralgia. Call my office tomorrow and make an appointment to see me". That meant absolutely NOTHING to me. I waited eight years to get this answer. I went home and looked it up. Back then they knew even less than they know now. What I was reading was pretty sad. But shortly after it went away again and I thought to myself...I'm not calling. I'm ok. I actually went through a pretty long remission at one point and I had beat this crap. I thought it had gone away for good. Why bother. But when it came back...it smack me on my right side. I knew what it was in an instant. Once you have had it...there is no question what it is again. Everytime I went to the ER they would say "You just have a bad tooth". I wanted to say "Look @&#^*$! I know what I am talking about. I don't have a bad tooth that has lasted a decade. No matter how much I told them...my release papers would say "TOOTHACHE. CALL DENTIST TOMORROW". They would treat me like I was a drug seeker. I worked as a Pharmaceutical Technician in a Pharmacy and in a hospital for a long time...I KNOW THE ROUTINE. Here I was on the other side of the fence. Now I was the one being treated like a loser, a drug addict, a scum scrambling for their next fix, etc. It seems that the "health care professionals"...the very ones who should be the most trained to help you...are the worst ones. They are the ones who have treated me with the most disrespect. Don't get me wrong...I have a great team of doctors whom I have great respect for...but I have also run into my fair share of rude, condescending, arrogant, cold, etc. "health care professionals" since I have become sick. The way I view people with chronic illness has completely changed. Sure, there ARE people out there cheating the system...I am well aware of that...but for the many many who aren't but pay the price...my heart aches for them!! This "War on Drugs" has turned into the "War on Chronic Pain Sufferers & Terminally Ill" I have seen mangy mutts in second rate shelters being treated more humanely than some people seeking much needed pain control.

MEDICAL HISTORY:
*Tonsillectomy (02-14-1976)
*Maxillofacial Jaw Surgery (12-1986)
*HELLP Syndrome birth - Grant (07-15-1992)
*HELLP Syndrome Twin Pregnancy (Due 05-05-1998)
*Cancer 2008 & 2009 - Total Abdominal Hysterectomy (04-21-1999)
*Several Lower Lumbar Nerve Blocks (Summer & Fall 2008)
*Discectomy/Fusion/Laminectomy L4-L5 & L5-S1 (12-23-2008)
*Bilateral Gamma Knife Radiosurgery (GKR) (12-28-2010).
*Occipital Nerve Block #1 - Right back (12-16-2011)
*Occipital Nerve Block #2 - Right back (02-08-2012)
*Trigeminal Nerve Block - Left Head & Face (#6) (01-11-13)

CURRENT MEDICATIONS:
*Baclofen 10 mg - 1 tab tid

*Phenytoin SOD EXT 100 mg - 1 cap .tid
(Generic Dilaltin)

*Propranolol - 60 mg .qd
(Generic Inderal LA)

*Lasix 20 mg - PRN

*Maxalt MLT 10 mg -.alt h (every 2) PRN

*Morphine Sulfate IR 30 mg - .tid or 45 mg. .bd - as patient decides - PRN.

*Potassium CL ER 10meq - .qd PRN

*Topamax 100 mg - .bd

*Wellbutrin XL 300 mg - .qd

CURRENT DIAGNOSIS:
* Bilateral Atypical Trigeminal Neuralgia (ATN)
* Bilateral Trigeminal Neuralgia (TN)
* Occipital Neuralgia (ON)
* Essential Tremors (ET)
* Sleep Apnea
* Asthma
* Vitamin D Deficiency
* Depression
* Anxiety
* Herniated Disc

OTHER ISSUES NOT DIAGNOSED:
* Widespread nerve damage in fingers, hands, legs, feet, toes, etc.
* Cognitive Issues
* Severe fatigue
* Insomnia at times, sleeps too much other times - days/nights mixed up
* Vertigo at night in dark while laying down
* Dizziness have fallen down more than 1/2 dozen times and many dozen times into walls and into doors
* Forget how to find way out of stores, forget names of common objects, and a few times even where I am driving to. I repeat myself, notice I now leave whole words out when typing and often type words twice when I used to be a very good typist.
* Incontinence issues - God forbid is I sneeze, cough, or someone tickles me.
* When I get tired...I get tired NOW! I get this very bad feeling that I can not explain. I don't hurt but it's a bad feeling. My head jerks fast but it isn't like nodding off when you are tired. As I said, it doesn't hurt but it gives me a very bad feeling in my body. I feel like if I do not go to sleep IMMEDIATELY something bad will happen. I have no clue what that something bad is but I feel this sense of dread. I know that sounds crazy but this quick jerk leaves me with a nasty feeling and I need to sleep IMMEDIATELY!!
* I was also given splints to wear on both my hands because my neurologist thinks the tingling in both my hands may be carpal tunnel but they do absolutely no good at all. I don't know why he would think it is carpal tunnel when I have the same issues going on in both of my legs, feet, and toes as well. This has been going on since 2008...all of the nerve problems in my hands, legs, and feet.

** I had MS ruled out in April 2009 but was told I would still be watched due to the facts that I have had Essential Tremors my entire life and because I have had the bilateral ATN and bilateral TN from the age of 17, following my Maxillofacial Jaw Reconstruction surgery.

** My insurance refused a MRI to see if the ON was coming from a herniated disc in my upper spine or more likely a nerve closer to my Greater Occipital Nerve. I appealed it and explained that for a surgery, I would need this MRI...it wasn't as if they could just cut me open and go in there digging around and say "HHHMMM OK...LET'S SEE WHAT WE HAVE DOWN HERE. NOOP. DOESN'T LOOK LIKE ANYTHING IS GOING ON DOWN HERE. LET'S DIG AROUND UP HERE AND SEE IF WE CAN FIND ANYTHING AND HOPE WE DON'T MUCK ANYTHING ELSE UP IN THE PROCESS!". I even explained that I was also diagnosed with ATN and TN and that TN was known as "The Suicide Disease" and "The Worst Known Pain To Mankind" and I still received a letter in the mail to let me know that I had lost my appeal. I could not believe it.

*** There was a time I was scared I might be getting GN because I was having a very tough time swallowing...even water. I was gagging on everything and it was starting to hurt no matter what I started to swallow and my ears already get sharp pains in them sometimes from the ON. But that has somewhat passed for the moment so I've dismissed the GN possibility.

HEALTH CARE PROFESSIONALS I CURRENTLY SEE:
* Family doctor
* Neurologist
* Neurosurgeon (Spine)
* Neurosurgeon (Brain)
* Pain Management doctor
* Radiation Oncologist



Hi Mindy!

I agree with you on so much, especially about the stigma associated with pain mgmt. There is an opiate tn subgroup up here with some of us who feel exactly that way; you may want to check out if your not already a member. I've got some horror stories of my own. I've been in pain mgmt about 17 years now. I have alot in common with you. Having uncommon conditions like TN and even ON and for me, to have systemic lupus, I am used to hearing and dealing with doctors who often suspect people with painful conditions that are difficult to diagnose as addicts. As a matter of fact, that is one of the reasons Red up here, the researcher has started a sort of grass roots movement against the DVM5 and the havoc it will cause based on the info and his survey he is conducting now with patients about how this happens and what it means and could mean with obamacare and their futures being labeled with mental disorders when a medical doctor cannot dx them and ships em over-

Anyway...I've had many of the same health issues as you Mindy, some from SLE and MCTD and some from cervical spine issues. I've had peripheral nerve damage for twenty years now and recently hit with multiple entrapments- and it sounds like you have them as well. You self dx'ing them doesn't phase me in the least. I've no doubt you KNOW these nerve issues in yourself even without an EMG or any nerve study. I, on the other hand had no idea when my neuro did the EMG about a month ago and found them all. I'm a little dense I guess..have other painful issues taking precedence I guess...lol. I could feel the carpal for sure though..you can't miss that pain type.

Have you ever given any thought to adhesive arachnoiditis? And i'm not saying it is caused by epidurals or cortisone shots or any of that. Since my entrapments come and go, they are effected admittedly by my doctors by my issues from MCTD with inflammation. Arachnoiditis:
The condition is diagnosed by seeing scar tissue and adhesions causing nerves within the spine to "stick" or clump together. The condition is seen on MRI or a myelogram followed by a CT scan (which you have been fighting for)

How do you know when arachnoiditis progresses to adhesive arachnoiditis? Adhesive just means that scarring sticks to structures and causes squeezing and compression. If symptoms include compression of nerves and other tissues, then the scarring effect can be considered adhesive. If scarring is without compression, it can be simple aracnoiditis. Here is a link to some arachnoiditis info: Arachnoiditis Info Site and it's interesting in how it can cause nerve compressions that come and go, huh?

Idk if this is the case but my neuro and rheumie do agree that inflammation in the area of the trigeminal nerve and occipital nerves IS adding to my tn and on issues and that having my cervical spine fixed a bit (anterior fusion) is going to be beneficial. I am sticking positive on THAT one, since my surgery is feb 22nd.

Do you have a current neurologist? Have they done a nerve study or EMG for you? If they find anything, they may find enough to warrant an MRI. How bout a neurosurgeon or even your neurologist ordering a T2 MRI to look for compressions for your TN? THAT should be covered, no way your neuro can't get that covered unless he's a dope. Just sayin..sorry to be blunt. Especially if you've already been dx'd with TN!!!

Now if you think the ON is coming from your neck issues..you may not get an orthopedic surgeon or neurosurgeon to agree with you about that (they claim to not associate cervical spine issues with nerve issues) imo if they acknowledged it less people would agree to surgery worried about nerve damage..but they CAN and WILL order an MRI. Go to an orthopedic surgeon. If you need a referral MIndy, go to your GP and say your neck is really really hurting. They will order an xray first. Do the xray. Then based on that (and whether they find something or not) go back to your GP and get a referral to an orthopedic surgeon. Even if they don't see herniated discs or slipped vertabraes or whatever, xrays do not show inflammation so say OW I still hurt..and get the referral. The FIRST thing the orthopedic surgeon will order is an MRI.

I just went through this process over again, the first time 6 yrs ago about my neck when my radiculopathies started and issues started. I had cortisone, nerve blocks and radiofrequency ablations the last five yrs and they aren't working so much anymore so I GOT A NEW PAIR OF NEURO EYES who started the process over. Actually I went through the whole she-bang again. Went to my GP, did an xray then went to a specialist and redid MRI's. You might have to start over fresh, but it's worth it unless your insurance allows you to make an appt with an orthopedic surgeon yourself.

I feel for you Mindy, I truly do. I've been denied for the last 3 yrs SSDI and I had to move my office home and reduce hrs in 2011 to next to nothing. I have a lawyer now and am waiting for an appeals hearing. Been waiting almost a year now. I'm in AZ. They even admitted I proved I have SLE lupus,MCTD, lupus nephritis, Sjogren's, sacroillititis and inflammatory arthritis in the si joint and hips, chronic anemia, extreme photosensitivity, cutaneous porphyria, type 2 diabetes, hypertension, PCOS, neurogenic bladder, multiple nerve compression syndrome, etc with labs and doc reports but that I could still work. My lawyers office passed my denial around in disbelief. Outright disgusting Mindy...I've had letter support from Senators and Congressman but the local office of adjucation just takes their own sweet time. Unbelievable.

Anyway..I'm glad your at least getting symptoms treated Mindy. That's a big half of the battle. Having pain under some control is imperative to having any quality at all of life, as you well know.

I started a website keeping track of medical information, abstracts, etc on causes of TN here: My TN Causes Website. I have a personal blog at: My Personal Blogsite

There are lots of causes, some not as well known as others. Idk why it isn't more prevelant to find docs and info out there. Even neurosurgeons and neurologists disagree about TN and not all believe in MVD or gammaknife or botox. Have you seen a neurosurgeon or neurologist on the list at the TN organization sight? That is here: Facial Pain Org TNA Physician List They recommend specialists who they KNOW specialize in TN and ON. There is a Dr. Ducic on the ON site on fb that they sing praises for here(are you already there Mindy? Do I recognize your name at all? lol) Occipital Neuralgia fb site. I belong to a hemofacial spasm yahoo group that has a fantastic list of surgeons who do MVD surgeries for both hfs and TN here: Yahoo Hemofacial Spasm Group With Surgeon List.

I have the TNA Org President's personal email you can contact him directly for help if needed as well. I'll give it to you if you want it. He's always willing to help out.

I'm so sorry for your suffering Mindy. We have much in common. My personal email is ■■■■■■■■■■■■■■■■■■■■■ and you can write me anytime as well. Did you ever think you might have some kind of autoimmune process damaging your nerves somehow? Just curious. Also here is direct info I found on the cervical spine and ON and TN: http://cervicalspinecranialneuropathies.blogspot.com/

Well Miss Mindy...I've given you an earful, huh? Sorry for so much at one time..the brain fog could be the pain, could be you have some kind of blood vessel inflammation from the ON and inflammation in your nerves as well. I had a TIA at the end of June and my new neurologist (new set of eyes after EIGHT years of the same one) did an EMG, EEG, carotid ultrasound, MRI and EKG. He found slowing in the left side of my brain (he thinks I'm having seizures but I think its inflammtion in my blood vessels and/or cranial nerves and surrounding area in brain) to confirm. My EMG to my shock showed that my PN in my extremeties of over a dozen years was GONE GONE GONE (I do have type 2 diabetes but have had and presently have highly controlled blood glucose and have the AIC's to prove it all under 6 for 12 yrs) and he found I had multiple nerve compressions (bilateral carpal and tarpal, ulnar, radial, etc). I am already on tegretol for the TN and have been there done that with lyrica, elavil and neurontin. I am also on cymbalta-have been for 9 yrs and think it is a good med for me.

My cervical spine issues are 4 herniated discs, all over 4mm, osteophytes, radiculopathy running down my right arm, etc, running out real quick, will finish in an hour...yikes, Love Julie

I decided not to run out to store with hubby and I stayed in and I made changes to that post Mindy and it got eaten up...it stalled during saving..shoot.....What are your TN attacks like? Mine sometimes involve all 3 branches and include muscle pulling involvement that is horrendous. My ON feels alot like a pressure that builds up. I might not call it a headache, per say...

Much Love, Julie

OH Mindy,

I wanted to add here about a place I found to help out brain fog and memory problems. Lumosity.com is one site with good brain game place, I just joined tonight! I'll let you know how it goes..I think it's going to be ALOT of fun!

Hope I sent you some good info so far..HUGS, Love Julie

Thanks for the information, Julie! I will definitely have to check it out. I wouldn't ever call my ON attacks "headaches" either. I don't know why they are even classified as such. They are full blown attacks just as Trigeminal Neuralgia attacks are. I never understand when I read descriptions of ON, why it is always made to sound as if it is something that someone can get some therapy, throw a heat pack on it, and it is gone. It is not even even compared to TN or ATN. My ON is just as bad as my ATN/TN if not worse...and it shows no signs of letting up! I believe whoever is studying ON, certainly is not telling it the way it really is. No wonder it is so hard for people with neuralgias to get disabilities when they truly deserve it. If you go by what you read online, they make it sound like it's a sprained ankle and with a little therapy...you should be back up and at it in no time! No wonder people with chronic pain don't get a fair shake. Just one more reason why I often say "Mangy dogs at second rate shelters are treated more humanely than most chronic pain suffers and terminally ill patients".

I have quite a few different feelings...sometimes only one at a time, and other times I feel them all at once. I will try to break them down according to the type of neuralgia (Pardon my crazy analogies. Not sure where I come of with them from. Hahaha):

BILATERAL ATYPICAL TRIGEMINAL NEURALGIA (ATN):
* Constant deep dull ache
* Feeling as if someone is stabbing me in the temple (recently my right side) with either a pencil or a heated sharp knife
* Cheekbones are being twisted and/or crushed

BILATERAL TRIGEMINAL NEURALGIA (TN):
* Sharp zap or jolts as if being electrocuted anywhere from cheekbone all the way down to bottom of jaw, including gums, lips (one time to the point that it left corner of upper lip numb but hurt as if like bee sting for 2-3 days), and actual teeth
* Feeling as if someone is hammering the bottoms of my teeth
* Feeling like a sinus infection X 10
* Feeling like a a migraine X 10

OCCIPITAL NEURALGIA (ON):
* Feeling like an earache X 10
* Feeling like kicked with a steel toed boot in the base of the skull and pain travels up and over ear,
then up to crown of head, and ends at eyebrow area but radiates all the way around eye socket and feels as if the
pain even goes back in BEHIND eyes.
* Feeling as if I am often times wearing a ball cap that I can not take off of have a tight strap around my head
* Vertigo in dark while laying down
* Sensitivity to light during attacks (this is just something recent)




NICE DESCRIPTIONS MINDY! I may need to borrow one or two as they fit my pain too!

My occipital is like a pressure that is building up on the side of my head (either side) and boiling and about to blow its top if I move...it feels like it gets heavy and TIGHT (like you said a strap around head) very perfect way to say it Mindy.

I don't understand why surgeons and doctors don't understand this nerve pain and the causes and the effect of inflammation in the area...out of 2 neurosurgeons and 2 orthopedic surgeons I have seen not a one acknowledges the relationship between nerve pain and the mech damage and inflammation issues.

Not a one. I'm disgusted.

Yes, I can certainly identify with your eye issues. I have PHTN, Occipital, Atypical and Bi-lateral. My eyes don't open in the morning when I wake up (I guess they are protecting themselves), particularly my right eye doesn't want to open. I am super sensitive to light. My opthamologist keeps wanting to dilate my eyes and I won't let her. I had my eyes dialted when my TN first started acting up bad and that completely ruined my eyes. Bright light in my eyes when the nerves were inflammed made everyting worse three years ago!!!!! I use yellow sunglasses and that helps with headlights and flourescent lights (sometimes). I guess people will never understand why I won't go to movies, can't watch TV or be on the computer too much. I am so tired of people saying "isn't there anything you can do?" Well I have tried a lot of stuff, Gabapentin works fine but its too hard on my GI tract. Lyrica is working, although it is making me stupid, and my eyes still burn all the time. Don't give up!!!!! Not many neurologist understand TN and think one size fits all. Any chance you could get to a big medical clinic like Mayo?

I'm pretty lucky, my neurologist understands inflammation and sometimes tries to give me Naprosyn. It actually helps sometimes to relieve pressure. You all can steal any of my crazy analogies if you like. I know they sound off the wall but it's the only way I know to explain what it feels like. lol
Bright lights never used to bother me but more and more over the last few months, it's really beginning to get to me, especially after I have been sleeping or in the dark. If I pick up my iPhone to read something I am blinded and it instantly makes me start to hurt.

OMG! I have just read all your post before I asked the question I was going to ask. I have just found people I can relate too.!!! I am a mess. Describing my pains is a huge headache for me. My pains have all evolved over time and I was forced to suffer thru them until they disabled me and nocked me down. It hit my brain and I have serious memory issues/brain fade or fog like you guys describe and tend to not be able to stay on task no matter how hard I try (fatigue, panic and anxiety attacks). Since last summer reading and typing on the computer make my headache worse turning to migraine if I push it. My iPhone is even worse. NO Squinting allowed. So research is getting more difficult for me. Back to suffering thru phone calls and taking breaks while reading or typing. The sides of my head and ears are so bad now that wearing glasses full time is a painful event. I am blind without. My eyes twitch, quiver, tap out , get cotton in the corners and hurt too much to use contacts. Light is so painful. I wear clip on sunglasses most of the time. Vibrations and noise are also triggers for my scalp pain and face pain.(less on the face since MVD) so I wear earplugs. But those hurt when my ears are acting up. Ugh!

I can also relate to the long haul with the doctors. I was finally dx with TN 1 year ago, but when I describe my symptoms the neuro, NS, GP, PT and Chiro all scratch their head. But when I read your separate descriptions of symptoms it all makes more sense(too me only, I wish I could get the doctors to read this site). I think I have more then one neuralgia or neuropathy coming from my neck and/or cranial. I have had bad neck pain forever. (5 car accidents later) I think that the neuralgia pains originate in two places. Sometimes it seems that its radiating from behind my ear over my head and sometimes it is most defiantly coming from the back of my neck up over my head.

I just do not understand totally how to separate my ON symptoms from TN V1 branch symptoms. I have been on Baclofen for 6months or so. By accident I discovered that it helped my constant scalp pain and the sharp shooting pains that run around my head. Always on the sides and top, only sometimes I have month long episodes where I can not lay on my head because the back is so sensitive( I think swollen) when I lay on my head and then get off it feels like when something goes to sleep and then starts to come back to life with pins and needles and a good ache. Any way, no body seems to be able to tell me why a muscle relaxer would take away those sharp pains, pins and needles, burning, boiling under my skin, being hit by a hammer, or standing up under the cabinet, or being beat by carpet tack strip. Seems that muscle relaxer is what works for ON so that's what clued me into thinking I have ON in addition to TN1 bilaterally and TN2 on left side. After reading your hear I now think that the ear pain could be the ON not some much the TN or GN.

I am in the process working with my GP 1st of getting that neck x-ray. I see my NS again in June (6 mnth post op) to discuss what pains I am left with after my MVD. He and I have discussed neuro stimulators and I have not been totally diagnosis yet. So I would like to have more info and imaging to look at and be able to decide how much pain is coming form where. We are doing process of elimination starting with the worst pain 1st. So with the MVD we took the left side of TN 1 and TN 2 down to a milder version of TN 2. We have done Botox on the scalp to see if we could find out if taking some scalp pain away would help TN. It only help a little. I could do that again also. But I wanted to get a true sense of how much the MVD did.

So my question is what symptom really separates ON from TN. Which vertebra is responsible for each cranial nerve? Because with chiropractic treatments I can notice a difference when my neck is aligned or not. I will look back in your post to review which meds you take. I do not do meds well. But may want to explore them again as my right side TN is getting worse all the time.

Julie- how are you feeling after your surgery? Tell me where you posted and I will read it there.

Thanks, Tree

So here we are, three years later. I have since received a GPN and PN diagnosis to add to my crap list. I have nerve damage in areas of my intestines (which causes some areas to function while other parts say "Noop…you can just sit here until you look six months pregnant and feel miserable). I also now deal with “burning mouth syndrome”, constant tinnitus, dysphagia, and got a 269 on my bloodwork with hyperglycemia and a 107 ac1. I also began dealing with “thunderclap” headaches horizontally (unlike all my other pain). It comes out of nowhere. For me personally, my ATN & ON have always be worse than my TN & GPN. With that bring said…these thunderclaps do not last as long but they make my ATN & ON look like child’s play. I am now in bed 80% of my life. It is miserable. Sometimes I wonder if I am having seizures late at night (even on Oxcarbazepine/Trileptal). I get “brain shivers”, sometimes it seems like my eyes are actually shivering and or quickly bulging in and out rapidly. A very odd feeling, although not painful. I get a very dry mouth lately especially in the middle of the night. I keep gum and candy the consistency of cough drops by my bed. I pop one of the two in my mouth and go back to sleep with it in my mouth. Very dangerous choking hazard but when you feel crummy, all common sense dissipates. lol
My 30 year mark will be reached in December of this year. Not exactly an anniversary I want to celebrate, but it’s the most consistent, trustworthy, and long term relation I have ever had. lol
How are you all doing now? You were right about the domino effect. I notice many others who seem to progress to additional neuralgias over time. I think they are much more connected than doctors think. It just seems like a never ending process until your entire body is messed up.