Trigeminal Neuralgia resolving on its own?
 

I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks!

I would definitely recommend getting a second opinion. It is a good idea in many circumstances and i think it would be a very good idea in your case. I do know a woman who was diagnosed with TN that did go away (but I lost track of her and don't know if that was the end of it). It can happen, I guess. Or it could be that she was misdiagnosed. I think most of the time there can be times of remission, but it usually comes back, and I never read about age being a factor. So I would suggest you stay positive and hope she is right, but get another opinion and see which doctor seems the most helpful and knowledgeable. I hope it goes well for you!

My daughter was diagnosed with TN 2 1/2 yrs ago. she is 30. hers didnt get better or go away on its own. hers got worse and lasted longer. she is on extreme amounts of medication and still has pain. she is having Microvascular Decompression surgery this Tuesday. i have faith this will work! Good Luck in your journey.

Thanks for the info and encouragement :) I will get a second opinion after I see the ENT doctor if he doesn't find any cause. I think it's very strange that the neurologist doesn't want to find a cause, but I do understand that it's pretty smart to wait until you find out that it won't go away on its own to do extensive tests or something. (I have no idea what tests they'd do besides an MRI.) There are a couple other neurologists close to me, so it shouldn't be hard to find one.
Dparis: I hope your daughter's surgery goes well!

An update,
 

So, I went to the ENT last week and he was like "Lol, why'd your neurologist send you to me? It usually works the other way around." and he pretty much didn't know what to look for. But he said I probably have the start of TMJ or a mild case of it, but made sure to say that he wasn't second-guessing the neurologist's diagnosis and even said that I could have gotten it from holding my face weird from having pain.
He also that I should have nose surgery because my septum is deviated and I have really large turbinates :rolleyes: It would be cool to be able to breathe through my nose, though!
I got him to refer me to another neurologist who my aunt either used to transcribe for or it was the one she saw for migraines. Either way, she seems to think he's pretty great. I haven't gotten an appointment time yet, but it hasn't been even a week and I know doctors' offices are busy.

I'm glad you are getting to see various doctors. I thought the referral to the ENT doc was unusual, though it sounds like it was a good thing for you if you have a deviated septum. I don't know if that would contribute to the pain... A diagnosis of TN is considered confirmed when a medication for seizures like Gabapentin takes the pain away. But of course the pain can escalate so that you need to increase the dose. A regular MRI is usually just to rule out other possible diagnoses. There is a special MRI that can spot places where blood vessels are pressing on a nerve. That is probably the major cause of TN.

Here's a description I found on a neurosurgery site:

Thanks for the info about MRI's. I had suspected that was how it went.
The deviated septum couldn't cause pain, except I guess in my sinuses. The ENT did mention that.
I'm afraid the pain is increasing again, because yesterday my jaw hurt a lot for several hours. But I'm fine today, so I'll give it some time.

Update
 

So I went to get a second opinion yesterday. Apparently this doctor also thinks it'll go away on its own. But not for good; it should come back at some point. And he said that only about 10% of people he sees with this problem have a cause, the rest just have it for seemingly no reason.
He looked at my MRI and said that if there was a tumor or blood vessel, he'd be able to see it slightly distorting the brain stem. And if he saw anything like that, he'd get me an MRA test. But he thought that it looked fine.
So I guess I'll stick with the first neurologist. Even though I like the second one a bit better because he explained things better, he also said that he wasn't taking cases like mine as much and that the first doctor I saw was more of an expert.
I'm pretty disappointed that there's nothing I can do to cure it. In any other case, it would be really weird to say, but now I'm thinking "Crap, a wish it was a tumor."

Hmmm. Well, I am glad you got another opinion. I thought the percentage of people whose TN had a clear cause was a lot higher than 10% and my neurologist said that often an MRI would NOT show any compressions even when there are some. (I also thought that even the MRA doesn't always show compressions that are there but it is more likely to.) It all depends where they are.

Keep reading and educating yourself and if there is another doc with more experience, go to him or her. Yeah, it would be great if there was a cure and for some there is, but there is a lot they can do and new things get discovered. I have been pain free most of the 21 years I have had it, though sometimes I've had bad side effects from the meds and I doubt I will ever lose the fear of it coming back. One day at a time...

Trigeminal Neuralgia in young male
 

Hi All,

I've just joined as i am having trouble with my Trigeminal Neuralgia flaring up again recently.

I'm a 29 year old male, and I was diagnosed about 2 months ago by my Dentist. I had an attack just before christmas, which was completely out of the blue.. and very painful, which i went to the doctors about. Before going, i'd searched online for what the pain could be (searching for 'electric shock like pain down right side of face') and found Trigeminal Neuraligia, which, when i read about it.. seemed to be exactly what i was experiencing. Never mentioned the possibility of TN to my doctor as i wanted to see what she suggested. All she said was, if it happened again - to go back.

Not overly pleased with what my doctor had to say, i went to see me dentist just to check if they could find anything (actually hoping would be an absess or something!). After a visual examination and having an xray done, they could find nothing dental related that could be causing my pain. She suggested that my pains sounded like something called Trigeminal Neuralgia.. the very thing i had dreaded she was going to say.. and asked for a second opinion from the other dentist at the surgery. This dentist had a medical background and he too said it sounded very much like TN from what i described to him.

I got a referral to the Maxillofacial clinic at the QMC in Nottingham to see a consultant. At this point my pains were horrendous and i had not been eating very well due to the pains i was getting. As the consultant i saw was concerened about the fact i was struggling to eat and drink, i was admitted into hospital where i remained for 3 nights whilst they did a series of checks, in cluding a scan.

The scan did not show any vessel pressing against the nerve or any other possible cause for Trigeminal Neuralgia. What it did show was a large area of my brain which had fluid around (i can't remember the name of it now). They said this was 'arrested hydrocephalus' - and that i would have had this since being a baby, and also that it appeared to have not had any effects on me. They did a series of tests which i did fine completing, and so no reason yet.. as to why i developed TN.

I struggled to come to terms with the fact i have 'the suicide disease' as it is referred to on google.. and i am hoping that something can be done to help with my pain.

I was first put on Carbamazepine which was ok for a while but then i developed a rash and so was taken off it gradually. Then i was put on gabapentin.. which i felt did nothing for my pains and so i asked for something else. I am now on pregabalin. 150mg 4x a day. At first i felt this was doing the job okay.. but now i am only taking 2 of my gabapentin (2x300mg), along with 4x pregabalin (600mg)... i get slightly less intense pains in my face almost continuously. It used to be just when i ate or drank. Now i have a mild kind of numb pain in my lower lip.

Having told my consultant this yesterday, she said to up the gabapentin again back to 3 times a day along with my pregabalin... i'm still waiting for the pain to subside to how it was a week or so ago.

So.. that's where i'm at now. I look forward to reading your thoughts and other people's experiences of Trigeminal Neuralgia. Especially in young males! I read this was more common in middle aged women!

Adam:)

Adam, my experience is that this is not an easy condition, but you can learn to live with it. I am also a male and first had pain 4.5 years ago. My cause was also very unusual in that I had a tumor in the lining of the brain which was compressing the T nerve in the gap in the skull base that it passes through. I had a major skull base operation (entering from behind my ear) which didn't get all of the tumor and had to have a second operation 9 mths later, entering from the temple. All seemed well then for 2 years, however now the pain has returned even though there is no tumor and the MRI does not show the cause. It is probably permanently damaged nerves and I am back on the drugs. I expect your surgeon will suggest a skull operation to release the fluid causing the compression. Having had 2 operations I can tell you that recovery is pretty quick and all should return to normal. Don't be afraid to have the surgery if they suggest it.

Welcome to NeuroTalk. I am so sorry to hear about the trouble you are having. I don't have a lot of suggestions for you at the moment but hope someone else will comment. Try not to dwell too much on the idea of TN as the suicide disease. There are medicines and surgeries that can help. Take it day by day and keep searching for help. Make sure your docs know the severity of what you are experiencing.

Thanks guys, i certainly do keep my consultant well informed.. i write down whenever i have attacks and the pains i'm experiencing etc.

My occassional attacks seem to have been replaced by a constant burning/ numbing sensation in my lower lip. However i can seem to eat normally now.. it's very strange how this has progressed in as little as 2 months. I guess what i'm concerned about is how it will progress further.

Fortunately my scan didn't show the presence of a tumour or 'anything sinister' according to my consultant. They seem to think it will clear up through medication alone.. not much of what i have read on the internet seems to suggest that is the case though. And i'm aware this can't be cured, so like you say.. i can learn to live with this.. as i think i am starting to do already :)

I'm sorry you're going through that! It really sucks. For you, is the constant weird sensation a bit of an improvement over random attacks? I thought that after my attacks went away with medicine that the jaw pain I'm having isn't nearly as bad as being in fear of an attack. But it's also really annoying, because sometimes it hurts to eat. Did your doctor say your problem would go dormant? That's what mine said.

I went to the dentist last week. Around part of my jaw that was hurting, a tooth broke. It turns out that that tooth and the one directly above it are really messed up, the broken one even has an infection in the jawbone! I'm getting the broken one pulled tomorrow. (I'm going to get an implant in a few months, luckily it's a lower bicuspid so I won't look all toothless.) Then I have to get a root canal and a crown on the top one. It was all secondary tooth decay from under fillings.
The dentist was like "Didn't this hurt a lot?" Well, yeah, but I assumed it was the nerve. The dentist was really nice, too, and didn't act like I was stupid for assuming that. He just said "Yeah, it's hard to tell things like that apart from tooth pain."
So maybe my teeth are irritating my nerve? The teeth both had decay down to the nerve. I don't know. I'll try to hope that fixing my teeth will fix my nerve, but not get disappointed if it doesn't.

I hope you guys don't get bored with me posting all the things that happen to me here. I hope someone else can read this thread and get some kind of information. (I guess if people talking about their medical issues is boring to someone, they should probably read a different forum! :p)

Yep. :) if we aren't interested, then we probably aren't here reading what you wrote! If it helps you to write, then write! Your experience can also help others.

I hope getting your tooth fixed clears up all your pain. That would be great!

I don't get bored from your posts.. i find they help me a lot! Especially with you being a young sufferer like myself.

The constant numb pain i had now appears to have gone and i'd say i'm relatively pain free at the moment.. probably about 90% normal.

However, I am still on 3x 300mg Gabapentin and 4x 150mg Pregabalin to maintain my current pain free state, until i see my consultant again towards the end of the month. I was supposed to be coming off the gabapentin!

As to whether the constant numb/burning sensation i had last week was better than the attacks.. for me, i'd say: yes.. definitely!

I too have been told that the pain can go dormant (or into remission, as they say) for a period of time, or go away completely. However, from what i have researched.. the latter is unlikely!

The cause for mine is unknown.. scans and xrays did not show anything dental to be the cause.. nor was there evidence of anything pressing on the nerve.

I guess for you it could be the fact you have decay to the root of your nerve.. but i'm not sure whether this can be a cause of TN. Maybe something less serious. I actually really hoped i had an absess or something! lol. So in the nicest possible way.. i hope you have bad tooth decay and that your implant fixes the issue!:)

Let me know how you get on!

ENTs seem to be well known for dx-ING odd facial pains as TMJ or having large turbinates. Be careful.

I have atypical trigeminal neuralgia on my right side after dental procedures. It's been a year. Hideous pain. Cold wind REALLY bothers me. My meds have been helpful.

Recently, I have some TMJ symptoms on the left side. Doesn't surprise me. I lost a tooth in the above mess, I'm often in pain, I sleep funny due to pain and its hard to relax because this has been a horrible horrible frightening situation.

I'm now doing some things related to TMJ disorder (for left side) and meds for nerve pain (right side). Doing my best.

Hang in there!

I have had the same effect for years now, all I can say is GET OFF THE gabapentin I swear it lowered my IQ and I gained so much weight after being on it four years. Look into Cannabidiol it has controlled my pain for the the last four years. My doctor said it could take ten years to heal if it ever does. I would rather not have the crazy side effects of a prescription drug
Oh and listen to your mom your neurologist sucks and moms know best

I'm so sorry you are suffering with this pain. Like I said earlier, I have TMJ on one side, and ATN, on the other.
ENTs do not know about this disorder.
Stick with a good neuro. Perhaps you should get an MRI with contrast relatively soon and an MRA as well. See if your neuro is willing to order these. If not, it might be a good idea to get another one.
My neuro ordered two MRIs with contrast and an MRA.
I understand if medication can't get it under control Microvascular Decompression Surgery, also known as MVD surgery, often works very well. Some people get TOTAL relief!!!!
I have also heard of people getting better over time and it changing to more like an atypical trigeminal neuralgia (which is what I have). I use various medications...one is a cream I put on my face. The Gabapentin is in the cream, so the side effects are a little less. It still does negatively influence my memory.
Check out the useful sites thread. I go to a TN group on line and have gotten some really helpful information talking with others with ATN.
Good luck.

My case sounds a bit similar to yours...

I had my first TN attack 7 years ago, when I was 30. I was convinced it was dental and after four months of severe pain I was diagnosed with TN. I was put on Amitriptyline and stayed on it for two years until I wanted to get pregnant. I went off of it and the pain never came back...
Until this year. Now I am trying Amitriptyline again and it seems to be working. I am still in the process of increasing it.

TN is a progressive disease so it does not just go away. It does go into remission though. My mother has it as well and she has long periods of remission. It seems that when it does come back it gets worse, which is what I am experiencing now.

There are also different types of TN. I was quite confused because my TN does not come in short bursts of excruciating electric-like shocks. Mine always come on slowly early in the day and by the end of the day my entire left side is killing me, like I got punched in the face. It starts in my bottom and top molars and radiates to my jaw, cheek and ear all on the left side. Once I discovered Atypical TN I was like that's me!!! So everyone is different and everyone's pain is different.

And for me there wasn't a definitive diagnosis. First a dental cause was ruled out by several dentists. Next I went to a TMJ specialist who said I have TMD and was given a night guard. My MRI was completely fine. No amount of pain medication would touch it though. Amitriptyline has worked for me but it doesn't seem to be a common medication for TN and I do not think it works all of the time. These are some of the reasons this disease is difficult to pinpoint though. It just seems to be more of a process of elimination.

Good luck to you :)

I used Soma for a short time for the TMJ on the one side and PT, also for a short time. the TMJ discomfort on the left side is now gone. But that darn ATN pain on the right side is still there loud and clear. If I miss a dosage of my cream, sleep on that side or get a cool breeze on that side....whamm-o...lots of bad pain. But, the Desipramine pills and the compounded cream have kept the pain more tolerable. I have something stronger for breakthrough pain, but try hard not to use it.

Hi, are you still having problems with your jaw. I am the same age as you and have the exact same problems. Let me know :)


QUOTE=cloudsnapper;967770]I've been to the neurologist and she said that I did have Trigeminal Neuralgia. My general practitioner had put me on 300mg gabapentin 3x a day. That had made the shooting pain attacks go away, so the neurologist kept me on that medicine. She said that because I'm 27 and pretty young to have it, it would likely go away on its own, and wanted me to stay on the medication for 3 months and then go back to her and they'd try to slowly take me off the medicine and see if I was better.

That was about 1.5 months ago. 2 weeks ago, the gabapentin stopped working so well. I didn't have the pain attacks, but my jaw hurt constantly and was incredibly tender. To the point I gave up eating many meals halfway through. I went back to the neurologist and she upped my dose to 400mg 3x a day. But she still thought that it would go away on its own.

I did get an MRI done a few months ago, because before I had standard facial pain, I was getting migraines. We are pretty sure they were caused by the TN since as soon as I got the face pains they completely stopped, and I'd never had a migraine before then. The MRI was done without contrast, and I've heard that ones without contrast don't show small problems. The neurologist looked at the MRI and said she didn't see any problems. She said there are no tests that can be done besides the MRI.

I'm not sitting here thinking that I know more than a specialist doctor. But nothing I've read suggests that this normally resolves on its own, and she said that it would the majority of the time. I don't want to stay on the medicine too long because I'd like to start trying for a baby later this year. The medicine has pretty bad effects on a baby, but having terrible pain and anxiety of waiting for the attacks would also be bad for a baby. So I want to get this fixed.

Do you guys think I should find another neurologist? My mom does, but she's a nurse who gets very worried about me. I was referred to the ENT to see if there's a "structural problem," but after that, I don't think the neurologist has any ideas to do anything.

Well, any insight would help. Or if you know anyone who had this resolve on its own. I know people wouldn't still be on this site if it fixed itself, but maybe they told you before they left. Thanks![/QUOTE]

[/QUOTE]

.....

My TMJ pain on left side is gone. I had some clicking and soreness and was treated by a special dentist. Jaw is ok, esp. on left side.

My ATN (trigeminal nerve ) pain on right side is still there; treated by a good neuro....now more manageable. That pain is hideous when active. I had two MRIs and an MRA. I had at least one MRI with contrast.
However, the Desipramine tablets I take plus the specially formulated cream I use 4-5 x a day, keeps the pain reasonably manageable.
Two separate things....my right side is clearly the nerve pain. $@&#
I was fortunate in that the neuro who treats my ATN pain was willing to talk with a compounding pharmacist....that special cream plus the Desipramine tablets helps me.m I have strong meds for breakthrough pain, but I try hard to very rarely take this medication.

I think the diagnosis of TMJ is widely overused. It seems if a dentist or ENT can't find a physical cause for pain they use this term.
I was told I had TMJ before I was diagnosed with TN.

J. Jane, I couldn't agree with you more. I went to an ENT, who told me my pain from outter space .... Meaning it was over the top, was probably TMJ. When I told him that two of the top neuros in town think it is ATN likely caused by dental work, he back tracked super fast. Plus, I don't think the meds I was /am on would help TMJ!

Oddly, later, I got some TMJ on the opposite side and I took Soma briefly and some PT. it was just clicking and mild to moderate pain. Did not last all that long and certainly cold breezes didn't bother it. But a cold breeze really bothers the ATN side!

I personally believe a MRI and maybe an MRA are important.

I think many with TN can have corrective surgery.

And those of us with ATN through trial and error can find good meds to work with. My cream seems to work better and better over time. And I have something for breakthrough pain, so I don't feel as frightened.

you might try. www.livingwithtn.org
I got great info and ideas there!

TN went away for years, now it's back
 

Hi, I'm new to this forum as of today. From about age 50 to 55 I had TN with severs attacks about once a day, usually at night. I saw a neurologist who tried me on all kinds of pills with no success. I was also seeing a psychiatrist for depression. One day he prescribed me Wellbutrin. A little while after the TN went away. The psych said that might be due to the Wellbutrin since it can help circadian rhythm which he said can be tied to TN. Years went by with no TN. That psych went away and I got a new one. She had me cut down on the Wellbutrin from 450 to 300 because she was trying me on a new antidepresant 'cause the Wellbutrin wasn't working well. In about 2 weeks, the TN came back. So I immediately went back to 450 of Wellbutrin. It's been 3 weeks and no change: having 1 to 3 TN attacks per day. The new antidepressant she put me on was Trintellix and I can find no correlation of Trintellix and TN. Also my urologist started me on Rapaflo about 3 weeks ago due to enlarged prostate and commensurate urinating problems.
I'm trying to figure out why my TN came back with a vengeance.

I don't have much to add except that there are many things that may help, so keep looking for medications and surgeries that may help. You might want to go to the website for the Trigemial Neuralgia Association (google it) for information about various treatments and research that may yield more help in the future. I hope you find some relief!!!

Hello Rene....

From what I am reading, it sounds like you have typical TN? That's the type that has random SHARP ELECTRICAL pains shooting thru the side of your face, lips, tongue etc... Mine was on the right side. I could actually feel the nerve getting hyperactive (tingling) a few seconds before and after an attack. My pain level was off the charts during an attack and the longest one I had was about 30 seconds which doesn't sound like a long time but it is.

I'm male and I had my first attack right after I turned 56. (TN is more common in women than men) The attacks were so severe and random that I had to quit driving and working. After a year of trying a whole bunch of meds with no success, (I was a walking zombie) my neuro referred me to a neuro surgeon. During my first visit with them, they went thru the list of meds I was taking and said that if the meds were not working, I needed surgery. I had MVD surgery 2 weeks later and it changed my life. (I had attempted suicide during that god awful year) Surgery changed my life back to where it was before I started having the attacks. It was so nice to no longer have to take any meds and be back to a normal human being with a normal life. That was 6 years ago.

My TN was caused by a blood vessel that runs parallel to the TN nerve that had worn thru the protective outer layer of the nerve. This did not show up on the MRI but the surgeon said that's not unusual. Every time the blood vessel touched the nerve BAM I would have an attack. Normal time for MVD surgery is roughly about 2 hours but I was in surgery for 6 hours. Surgeon stated that there were multiple blood vessels "tangled" (his word) up with the nerve. Having the MVD surgery is one of the best things I've ever done. I did have high blood pressure for about 20 years prior to surgery and they thought that might have contributed to the problem. (rubbing the nerve) I faithfully keep my blood pressure under control now.

That was 6 years ago and I'm still attack free.....

What frustrated me the most was the lack of knowledge that doctors have about TN. I even had an ER doctor ask me what TN was! Not that they can do anything for you except fill you up with pain medicine. I don't know how many times I was in the ER over the year before surgery. I went thru many doctors until I found one that actually knew what he was talking about.

Keep your chin up and don't give up until you get the help you need. It is out there somewhere.

Ken

Hello,

I first started experiencing TN when I was a junior in college at age 22. I thought it was due to my wisdom teeth because the pain would always start in my jaw and radiate upwards through my temple and forehead, but it was only on my left side. After getting my wisdom teeth removed, the pain went away, but after a year and a half, the pain came back for 3-4 weeks and went away. The attacks were severe and came and went no matter what I did. I'm 26 now and have been experiencing the same attacks for the last 3-4 weeks which is usually how long it lasts before going away again. The reason for my reply is that I was told that it would never go away and the relapse times would only get shorter for me. Right now, I can manage the pain through medication, but I fear I'll eventually have to look at surgery for it.

TN- went in remission
 

I Had ATN for 5 years and luckily had a really early diagnosis. After 5 years on MANY medication regimens, I stopped having breakthrough pain, decided to wean myself and after stopping meds, no longer had the daily pain. I haven't seen Neuro Doc in 2 years. Now i am having severe stabbing Tooth pain and the Department head at Research hospital told me there is NO WAY it is TN because it cannot present in a tooth. My pain started as extremely sharp, shooting from upper tooth to brain. Before when i had it, the pain was mostly in my face, eye and stabbing pains in my ear, but periodically it would bother my teeth.
So the good news it can spontaneously go in to remission, but I don't know what to do with this tooth, because the Dr. is a Maxillofacial surgeon and he told me that about the teeth. I don't know what to think. The scan and 3 separate xrays all show nothing is wrong with the tooth.

2 cents
 

I have only 1 opinion so far, but have read a bit. I think I am atypical because my symptoms are so strange, like feeling that I have fur on my tongue. Concerning the MRI it is commonly used to look for a blood vessel pulsing against the nerve root near your ear, but they need to do thin sections and a negative result doesn't mean the blood vessel ain't misbehaving. I have not had one yet. My ENTs both said its not their specialty even though it started up after an ENT procedure called a Sialendoscopy. I theorize that the general anesthesia relaxed the blood vessel into the wrong position. The Neuro wanted the ENT to "fix" my parotid glands, but they are no longer operable, except to remove them. The ENT said the parotids will go downhill from here on out and I have gotten 5 years of improvement which is better than what most get. I went from carbamazepine to amitriptyline to lidocaine to butalb-acetaminofen-caff as needed. I was allergic to carbamazepine and amitriptiline caused urinary retention, and I am allergic to most stickums in patches. I had one ER visit for my bladder. But I am in remission from most of the pain now, only suffering from weird tinnitus, strange vertigo-like symptoms, and insomnia on occasion. I am in week 1 of almost no drugs, but fell out of my chair today and had to take the as needed med for neck pain from the fall. I want to pick my opinion 2 carefully because I doubt the diagnosis. Forgot to mention I walked into a wall with my nose (3 ER visits) and ended up with a nasty infection that lasted for 6 months after a balloon catheter procedure in my left nostril, where I also had surgery to repair more cancer treatment damage. The urologist put me on "super" acidophilus after basically years of antibiotics and "super" cranberry. Both pricey but I feel better this week than I have in 2 years prior. Each acidophilus pill has 20 million live organisms. I feel like cancer and over zealous antibiotics prescribers ruined my immune system. Its difficult to find a PCP with a long enough attention span to even take a proper history.