I am so frustrated. I had a wonderful few months of remission, when I hardly had any pain. But I’m fully out of remission now.
That sai, I don’t know what it is I’m battling. My pain started as TN2 in the first branch. I constantly felt like I bumped my head on the corner of something. Then it moved to the second branch, with a burning sensation on my face that moved from my ear to my front teeth.
Next, it moved into my right ear, with a burning sensation that felt lilt here was a blow torch inside my ear blowing outward. More recently, I’ve had ice picks in the ear (had those before, too). Now it has moved into my jaw and tonsil area on the right AND my jaw on the left. I’m constantly doubting myself. Is it TN2? Geniculate neuralgia? Glossipharangeal neuralgia?
Or is it TMJD?
I feel like I’m going crazy. I’ve met with a neurologist. I see an acupuncturist once or twice a week. I had a bunch of dental work done so I could get a bite guard. I flew to Baltimore to meet with a neurosurgeon, who thought I should meet with a different one. I take gabapentin, tramadol, muscle relaxers, klonapin, Vicodin. I wear ice on my head. I tried booze, pot. I’ve tried capsaicin liquid, anbesol. scarves across my face. I’m just at a loss. I’m at a loss.
Hi Beth, You are not crazy. Many extremely good neurologists have no clue about TN, never mind bilateral TN. I am not a doctor, so I won’t try to diagnose. I’ve experienced all of the things you have described.
Booze did nothing for me. It relaxed me for a couple of hours and then stimulated the pain like mad…which is its job lol. I won’t pretend to tell your acupuncturist what to do as treatment. In the other TN group on this site someone posted what the fix is for this. I do use it. It does work for me. I have to be in a very centered place to put the needles in my scalp. Ice or heat on my face is always a huge trigger. Anbesol does nothing for me. Capsaicin triggers the nerves for me.
I do practice meditation during the day as a form of pain control. When I can get to a place where I am centered.
You will find a doctor to work with. It takes time.
It is entirely possible that you are dealing with multiple neuralgias involving nerves on both sides. I've heard similar reports from other patients who were diagnosed that way. From reading many patient reports, ice pick pain in your ear seems to track to geniculate (aka nervus intermedius) neuralgia. Pain in the throat or rear palate would seem to trace to glossopharyngeal neuralgia, and in your cheeks and teeth to some form of trigeminal neuralgia or neuropathy. TMJD would normally be confirmed by imaging of the joint and/or wear patterns on your teeth. Other disorders might also have symptoms overlapping with those you report. Ultimately, this is a call which should be made by an experienced neurologist or neurosurgeon.
I also observe that you are taking quite a mixture of medications. If you haven't done so recently, it may be appropriate to discuss drug interactions with a physician or pharmacist.
Be aware that I am a well read medical layman, not a physician. I've interacted with chronic face pain patients for the past 20 years.
Hi Beth
Have you tried carbamezapine? If it is TN it will respond to pain. In fact doctors consider this med a test for diagnosis of TN.
I tried Acupuncture in 1976, quite expensive but it dint work for me. I have long period of remission sometime lasting 2-3 years. But it returns with a vengeance. I m on tegretol & gabapentin
I wish you well.
You are not alone with your questions or your frustrations. Mine started in my left teeth two and a half years ago. Went bilateral a year later. Moved into my left eye for the entire of last winter. Then in the spring that went away and I started getting pain at the back of my head consistent with ON. Then maybe three month remission. Came back around Christmas with GPN symptoms in my throat, tonsils, tongue and nose as well as sinuses. The last two weeks it is a full blown right side attack with teeth, gums, tongue, etc plus some left side twinches at the same time, both of which I have never had before. I also seem to have symptoms of SUNCT or SUNA.
I have been diagnosed ATN, migraines, cluster and have a bulging disc at C5. I have had multiple MRI/MRAs of head neck and back. No help from neurosurgeon and my neuro just keeps prescribing more and more pills.
I am on Nortriptyline which at this point doesn't seem to be helping at all. I was in physio for my neck through the spring and that seemed to help my facial pain at the time...but maybe it just coincided with a remission.
I don't understand how I can have symptoms of TN, GN, GPN and ON. TN does run in my family I am the fourth woman with it. If it was structural wouldn't something show on the MRI's? Is it from my neck? Is it demyelination? Wouldn't I have other symptoms by the time I am 40 if it were MS? Which my neuro does not think I have. Is it Fibromyalgia? I do have some other strange things going on over the past couple of years involving pain and nerve problems other then on my face.
Out of the people I have talked with it seems there are lots of us out there with bilateral symptoms, multiple neuralgia symptoms and neck pain. I just wish DRs would look at things more wholistically and care to be explorative with treatments. The only thing that keeps me sane is being able to connect with other people that are going through the same thing.
Thank you all for writing to me. It's certainly an exasperating experience.
Red, were I to read someone's drug list and have it be similar to mine, I would be concerned as well. I'm actually exceedingly careful about what I take and when. There are days I only take gabepentin and then 20mg of baclofen + 1/2 of a low dose klonapin at night. Other days, I add a tramadol and 10 mg of baclofen. And when it's really bad, I add a vicodin. And on the horrible days, I take another vicodin six hours later.
I don't combine alcohol with it, and the pot phase lasted just a couple of weeks (yuck).
That said, I think it's important to touch base with the neurologist from time to time, so I'll do that, and thank you for the suggestion.
Yakub, yes, I did try carbemazepine, but unfortunately, it made me suicidal. What I got the most relief from was Lyrica, but it gave me a bizarre all-over rash.
Quest and Just Jane, I'm sorry to hear that your battle is similar to mine, but if I'm honest, it's kind of nice to know I'm not alone in what I'm experiencing. But it's a rather crummy club in which to belong!
Beth, I am very thankful for this group and all that Red puts into it. Before this group, it was a little lonely and a lot frustrating. I can’t tell you how many times I have educated the “top” doctors about TN. That being said, I am very blessed to live where I do and have access to a pain doc whose personal interest is neurologically based face pain. The only odd thing I can say that this group produced for me…was forgetting how few of us there are, who live with bilateral TN. Welcome to our madness
Well, unfortunately, you guys can include me in your group. I have GN, GPN, and TN. I am bilateral and I have shocks too now, once in awhile. I do pretty well with Gabapentin Amitriptyline Topamax Effexor. But here lately, I think I will have to up some meds. It is no fun. Eating is becoming a little bit of a challenge. Jaws hurt. I hope you all can get some relief. Hang in there. Summer is coming. :-)
I agree; I am SO thankful for Red Lawhern and the time/ energy he puts into this group. Red, I honestly can’t thank you enough. Quest, may I ask where you live? I am 2.5 hours north of Boston, but I’m shut out of any Mass. help because I lack health insurance. I’m desperately seeking disability at this point. If I can get it, I’ll be out there seeking someone who can help me.
Quest said:
Beth, I am very thankful for this group and all that Red puts into it. Before this group, it was a little lonely and a lot frustrating. I can't tell you how many times I have educated the "top" doctors about TN. That being said, I am very blessed to live where I do and have access to a pain doc whose personal interest is neurologically based face pain. The only odd thing I can say that this group produced for me.....was forgetting how few of us there are, who live with bilateral TN. Welcome to our madness
I find it so strange that our jaws hurt. The sensation I get I liken to when you’ve just tasted something really sour. But that’s only part of the pain. Then there’s the burning and stabbing in my ear and the pain in my cheekbone. Oh, and the burning in my face. Ugh. Welcome to our madness, indeed!
Min said:
Well, unfortunately, you guys can include me in your group. I have GN, GPN, and TN. I am bilateral and I have shocks too now, once in awhile. I do pretty well with Gabapentin Amitriptyline Topamax Effexor. But here lately, I think I will have to up some meds. It is no fun. Eating is becoming a little bit of a challenge. Jaws hurt. I hope you all can get some relief. Hang in there. Summer is coming.
My thanks to Min as well. It takes work to moderate a group. And I envy you your free use of medications. I am allergic to far too many
I can trace the full Trigeminal nerve on the right. It never stops being at a low burn. The left side is a little easier, but as of last fall, all 5 points are affected and the pain is excruciating at times. Those shocks come out of nowhere. They are everywhere for me. In the new places I can’t breathe when they come and I often drop to my knees. In the old places I learned to separate me from them through meditation. It’s frustrating not to be able to do that yet with the new ones.
I live in Toronto, Ontario, Canada. And I am so sorry you don’t have coverage. This is a very expensive problem for me, and I only pay for medications.
My pain doc does see patients from other countries. I have no idea what that costs. I have chatted with people from around the world in his waiting room. About ten years ago he started training doctors from other countries. I know if they don’t show compassion and ask about everything that is going on, he will ask them to leave. I am going to be one sorry camper when he retires lol
You're welcome. I do what I can to lend clarity and refer people to authoritative resources. And I do care. My spouse has lived with and managed bilateral TN/ATN for 20 years.
Regards, Red
Beth said:
I agree; I am SO thankful for Red Lawhern and the time/ energy he puts into this group. Red, I honestly can't thank you enough. Quest, may I ask where you live? I am 2.5 hours north of Boston, but I'm shut out of any Mass. help because I lack health insurance. I'm desperately seeking disability at this point. If I can get it, I'll be out there seeking someone who can help me.
@Beth: Yes I can feel the entire Trigeminal nerve on the right side. There is a low burning sensation throughout the entire nerve all of the time. There are times when the sharp stabbing pains do occur on that side. I have it down to a few times a week. In the beginning it was just non stop all of the time.
The left side I had controlled until last September. Now there are flashes that make me see white light and take away my breath and I have no clue when they are coming.
@Red. Your wife is blessed. I’ve often thought that partners of people with this have the hardest time. My husband is having a really tough time watching me the last 4 months.
Wow, Quest. I'm so sorry this has gone bilateral for you in the way it has. I only have the stabbing in my ear, and it's not often ... maybe a few times a week for just a minute or two (stab, stab, stab ... not one long stab).
I dread the idea that the left side could become as severe as the right side. It has started suddenly and is more intense than the right side was at the beginning, though it's not as bad as the right at the moment.
I'm telling you, I'm down for the count probably half of the time when I'm out of remission. I can't believe I am having to fight so hard for disability.
For me, the new stuff is harder because I’ve developed coping mechanisms for the rest. I know that I will do that for the new part as well, but it is taking some time. And I am shorter on patience. I forget that it took me years to find the ability to deal with this with meditation while I was awake.
The hardest lesson I’ve learned is to not anticipate. I’ve always been a huge planner. Don’t try and plan this. Sometimes you will waste so much energy anticipating that you’ve missed out on the moments that matter.
I hope that you get disability quickly. And that you find the right docs for you to find your best way to treat this. And when you are frustrated and feeling isolated…there is this lovely piece of the Internet to slip away to
Beth, I have exactly that same type of pain, with the throat. I would describe it the same way. Amitriptyline is the only med that worked for that, completely. Plus it hurts to swallow..no med has gotten control of that symptom completely for me yet. Plus my cheek has always felt like its broken since the beginning. Eleven years now. And Quest, I too have learned to take One day at a time. There is no telling what the future brings. WE have to enjoy our good days. I hope you guys get some relief, and have some good days.
