New Doctor - New Diagnosis!

Okay, went to a new neurologist today and he completely contradicted the other neurologists and neurosurgeons that I have seen. He said I did not have TN because my pain was also in my ear and the right side of the head - not just in my right cheek. I also told him that I have been having (in the last couple of weeks), strange, intense headaches in the top and back of my skull. He said ATN was just a term that "other" doctors used when they have no idea how to treat you and basically, it means, there is no treatment for that condition. He felt I had more going on with my pain and gave me 2 nerve blocks in the back of my head, behind each ear, into the ocipital nerve. He said that if these nerve blocks prevented the pain in my cheek, upper right jaw, that it proved that I did not have TN. He pretty much refused to acknowledge that a condition called ATN exists. He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve! I am totally confused, frustrated and numb all over the back of my head. Also, had to pay for the nerve blocks right then because my insurance doesn't cover them. I am sooooo tired of seeing different doctors. Geez. Why do all these doctors have different diagnoses? This doctor was a referrel from the neurosurgeon that confirmed that my pain was ATN!!

Your doctor needs to read the classification system for trigeminal pain that has been developed at OHSU in Oregon, by Dr. Kim Burcheil, a member of the TN Association Medical Advisory Board. You may also have occipital neuralgia (back of the head) and geniculate neuralgia (icepick pain in the ear). Nerve blocks can be a useful diagnostic tool, but they don't work in most trigeminal neuropathic pain patients. A positive response to anti-convulsive meds or low doses of a tricyclic antidepressant like Amitriptyline is a much more reliable diagnostic indicator.

Suggest that you drop this neuro like a hot rock and find someone who has been properly trained.

Regards, Red

Red - amazingly it was after I asked this doc if he would put me on Amitriptyline, that he went right to the nerve block. Is there something "special" about this medication that sends my doctors to look for another solution to my problem? Getting pretty discouraged here, but will keep trying. I go back to this doctor on Friday as a followup to see if the nerve block affected my pain. So far, in the last 5 hours, I am still having some breakout pains, and still having the weird inside of the head deep pains. If my head is numb (which it totally is) from my ears to my neck, why would I still have these severe pains? I so want to print out your response and hand it to the doctor on Friday, but I won't. He had a pretty big ego and I don't think he would appreciate it. (I appreciate it!.)

Wow D. That's all I can say.. Wow ...Good luck. Wait I can say more. This neuro... I agree with Red Iwould drop like a hot potato!!! Best wishes to you. I hope for some relief with this procedure. Min

Amitriptyline is an old drug, so some doctors don't use it because they think the newer meds are better. But there is nothing narcotic about it that would raise a red flag.

I want to PUNCH doctors like that! Do they seriously think that the "experts" in the area are dumb? He does not sound like an expert but a man on an ego trip. Dr. Burchial is one of the leading most experts in the area and he and his department are quite clear that ATN exist and is very, very real. They may not know what causes the pain, but it is nonetheless, real.

If this nerve block doesn't work, is Dr. Ego then going to tell you that it's all in your head (pun intended) and you need a shrink?

I also have this intense pain in the top and on the back of my skull...along with the other areas of course. For me it's pressure and burning...wich feels like I've been whacked over the head basically. How would you describe yours D ?

sorry for this bs you're going through with this neuro. Makes me so mad...been there more then one times. Shake it off and try to keep thinking for yourself and stay positive as much as you can.

Also: He was looking at my MRI and did not even mention the blood vessel that was touching the trigeminal nerve!

I didn't know this can be seen on a MRI..Isn't this a clear sign? Red, would you maybe shine a little of your light on this for me ??? I'm going to see my neuro next week..could use some input. Thank you so much!!!

I had occiptal nerve block injections also... It did not make a difference for me... just made my head and neck really sore :(

I've had many "different" theories and treatments... I understand how frustrating (and expensive) it can be. I agree with "Red." Find another specialist. Do some research before you see them to see where they practiced and their specialties etc. That's what I did before I saw my doc now... and she is great!

I have a LOT of pain in my ears as well. My neurologist now believes its a combination of TN and Glossalphyrengeal Neuralgia.

Also... sometimes some health systems offer financial assistance. Call the biling department and ask if they have any type of application for financial assistance. (I qualified for one and didn't have to pay anything!! And they did a whole bunch of tests.. a CT etc. ) The worst they can say is "no." lol.. But it's worth a shot!

Here are the different "theories" I've been told/treated for with no relief:

Non-Allergic Rhinitis (Nasal Sprays)

Allergies (Allergy Meds)

Eustachain Tube Dysfunction (they put in ear tubes)

Longing Ear Infection (5 rounds of antibiotics later.. still pain)

"Facial" Migraines (huh...?)

"All in your head!" (ER doc... thanks....)

Jaw Hypermobility (Physical Therapy)

Lingament Laxity in the Neck (Chiropractor)

Nothing Neurologically Related (Said Neuro 1)

Not Sure! (lost count how many people said this...)

Don' t let this doc get you upset. Find someone else :))

Good Luck with everything and God Bless <3

*Hugs* Katie :))

Stevie: a detected compression of the trigeminal nerve is not a 100% confirmation of trigeminal neuralgia in either of its primary forms. But it can be a confirmation for some patients that MVD may be a useful procedure for addressing part or all of the pain. In post-mortum hospital studies of the 1980s, many people were found to have such compressions who otherwise had no facial pain at all. The symptoms you are describing seem to involve more than one nerve and might possibly involve some form of central nervous system sensitization. Some form of cluster headache is another possibility to be investigated.

Amitriptyline is an "old" drug and it can be a mixed blessing in some patients. In some people it is associated with suicidal ideation, even though it is a tricyclic antidepressant med (look it up, please, at Clearly if it is prescribed, it should be tapered up gradually, with frequent monitoring of outcomes by the prescribing doctor. If your doc doesn't think it is useful in your case, then he owes you a thorough explanation of why not.

Regards, Red

D it is just this sort of thing that makes my blood boil!!!! Don't you have enough going on in your life without having to suffer this fool??? You have my sympathy. Is it any wonder that ATN/TN patients are often at their wits end? If you don't have it then there are several hundred others on here who "don't " have it, and we all know they do. He could do worse than read what is written on here by members and Red, They do seem much better informed.

Cleo, there's a big difference between being a member and being a board member. Not sure why this came up....

Actually, the Face Pain Association (FPA) allows physicians to list themselves by specialty and location, but does not label them as "experts". I would agree with Crystal, however, that being a member of the Medical Advisory Board is normally a substantially stronger recommendation. However even that isn't perfect. I've heard several complaints from members here at LwTN, concerning two of their neurosurgeon members. So checking out the various online doctor rating services on a practitioner you intend to see, is a very good idea.

Regards, Red

As a follow up - the super deep, scariest pain I have ever experienced, went away yesterday. Boy, was I on cloud nine for about 10 hours! So, the lidocaine block worked, which tells me that I may be suffering from cluster headaches on top of the TN. The right side lip, cheek, tooth pain was still prevelant all day, but mostly, tolerable. Basically, even though I was still numb, I had a great day yesterday. But this morning is a whole differnt story. Woke with an excruciating headache and the right side TN pain is at a bit higher level. The numbness is totally gone. So, now I am researching cluster headaches also. Are cluster headaches more common with TN? I am also going to do a search on this site for any info. One thing that I found was that melatonin works on cluster headaches, so I happened to just have some on hand. I am trying a low dose of it and will see what happens. Thank you all so much for your replies. Made me want to go punch this doc, but then, since the shots worked for the "headache" portion of my pain, I thought maybe this doc isn't totally wrong about my pain.

Cluster headache is relatively rare, and a few TN patients also have such headaches. But as nearly as I can tell from a lot of years of reading, Cluster isn't commonly associated with TN. Migraines, on the other hand, fairly often seem to be. I don't think anybody has nailed down the "why" of the association.

Regards, Red

Red - what would we all do without you! I just started getting those weird "headaches" in the last 2 weeks. But, reading alot on cluster headaches, I did not have the exact same symptoms described in all the literature. However, I do not have the exact same symptoms for TN1 either. I am now recording every single "pain" that I get, when it occurs, what level it is, and what it feels like, and "where" it is. Hopefully, this will allow me to communicate better with the doctor in the morning. As I understand it, cluster headaches can go away on their own - for weeks, months and years. So, this gives me hope (if I do actually have those now) that I can possibly go without drug treatment for them. I just don't want to be prescribed anymore meds that make me wacked out. The doctor indicated that he would change my drug regimen based on the results of the lidocaine numbing. Do you know if there are any meds that cross over for the treatment of TN (or ATN) and headaches?

In most cases, Cluster headache is a bear to treat, even with the most powerful of the migraine preventative meds. Two other related things to look up and discuss with your neurologist, however are SUNCT headaches and cephalgia. The symptoms can overlap those of both trigeminal pain and cluster, but the medical treatment options are somewhat different.

Regards, Red

I totally feel your frustration. I have been to doctor after doctor to the point to where I am just about to give up. The dentist is the one that actually diagnosed my TN but no one in my area knows how to treat the condition. I have been on several different meds and have no insurance so I am pretty much helpless and hopeless. I have tried to just depend on Ibupropen and a heating pad but sometimes the pain is so bad that I just want to scream. No one seems to understand because I don't appear to have any problems, they think that I just complain all the time so therefore I have just got to the point where I just sit in silence and suffer. I have been suffering since July of 2010 and there are days when I wish that I could lay down and never wake up!!!! Maybe one day someone will discover the cause of this disease and we will all be pain free. I would just like to have at least just one pain free day.

I feel your pain,

Tonya Decker

Tonya, Ibuprofen is rarely effective against any form of trigeminal neuropathic pain. The anti-seizure meds like Tegretol, Trileptal, and Neurontin generally do much better. Please spend some time with our Face Pain Info articles (menu above). The sub-tab on "Coping With Crisis" may also be helpful.

Regards and best, Red

D McGinnis, I've also had doctors struggling to figure out the various pains. The current thinking is that there is ATN on the middle branch, and something else is happening on the top branch. Possibly Hemicrania-Continua (continuous one sided headaches, though doubtful), Migraines (though this seems doubtful as well), Cluster Headaches, or what was originally thought, some form of Neuropathic ATN pain.

Tegretol works resonably well for the middle branch constant day-to-day pain, but nothing preventative-wise (except infraorbital nerve blocks), stops the top branch extremely severe pain. For that I use the "triptans" (Imitrex, Zomig, etc) which are various medicines (abortives, for once the pain has started), though the latest is a jet-injection dealie (needless injections, think hypospray from star trek) which knock the pain down in 15 minutes or so.

Its the oddest thing, I can trigger the severe top branch pain (consistently) from merely bending my head forward like to pick something up off the floor and WHAM a day full of extreme pain. Insurance doesn't like paying for very many triptans unfortunately...

Jeff - how ironic that you mentioned bending over triggers the pain. After my last post, I gave my Yorkie a bath - in the tub, and the back of my head - extreme pain, started all over again! I had no idea that it would start again, just from bending over. The pains are really sharp and darn near making me cry each time. However, they go away after a minute or less. I feel like: What the #$%@ is going on now?!! Would the lidocaine have created these terrible pains? I'm about ready for the emergency room if they get any worse.