An introduction, a story, and a few questions about TN, ATN, and ON

General General TN & GPN (Old Site)
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Hello, everyone! I am new to this website and relatively new to trigeminal neuralgia. Thank you to everyone who has welcomed me and added me as a friend. I was very happy to stumble across this community of TN support and hope I can get to know all of you better.

Let me first introduce myself: my name is Jessica and I suffer from Fibromyalgia, various spinal issues causing chronic back pain, TN, and my pain doc thinks I also have Occipital Neuralgia because of the constant, never-ending headaches.

My Fibro was triggered by a car accident and resulting whiplash injury in 2007, and I was diagnosed with it in December 2007. While I've had migraines since I was 16, my chronic headaches started in May 2007 during physical therapy but they were never addressed. I started having weird pains in my right ear around February 2010 and by July of that year I was holed up in my darkened, silent room because of constant migraines.

A few months later is when the face pain hit me like a freight train. I would wake up 4-5 times a week to the pain and would spend the next 2-4 hours holding the right side of my face and screaming like I was being murdered. Nothing helped. Not extra meds, not heat, not cold. My son, who is 22 and stays home to take care of me, started suffering from PTSD-like symptoms because I would wake him up with my screaming and he would sit at my bedside while I suffered. He and my best friend would call 911 because they really didn't know what else to do. The EMTs would come and take my blood pressure, but an oxygen thingy on my finger, ask me questions to see if I was lucid, etc; but they couldn't take me to the county hospital (I have no insurance) so they couldn't really do anything for me.

I finally went to the emergency room during an "episode" in November and was given a shot of morphine and but on Mobic. I haven't had a "screaming" episode since then, but there seemed to always be some pain in my face. The ER doctor mentioned that it sounded like trigeminal neuralgia but wanted me to check with my regular doctor for an official Dx, which I got a few weeks later.

A few months ago, I started experiencing similar pain on the left side of my face. Great, so now my entire face hurts! I haven't had a chance to discuss this with my doctor yet, but I'm assuming that means it's bilateral now. The pain on the left side so far only affects the nerve under the eye and the one along the lower jaw, as well as in front of my ear and in the ganglion above the ear. The pain on the right side of my face affects all three branches, in front of my ear, and in the ganglion.

While I haven't received an official diagnosis for "Atypical" TN, from what I read it means that the pain is constant as opposed to intermittent. My pain is constant and the intensity of the pain changes throughout the day. It's constant on both sides with an accompanying constant headache. As I told my doctor, there is not a single waking moment that I don't have a headache or face pain. In short, everything from my neck up hurts all day, every day. This is why he thinks I have Occipital Neuralgia and wants to do a Greater Occipital Nerve Block as a diagnostic procedure. Unfortunately, I don't have insurance so I have to wait until August when my Medicare kicks in and hope that it will be covered. But the more I read about ATN, the more I think the TN and headaches are related.

My headaches span through my eyes, forehead, along both sides (upper and lower areas), base of skull, behind the ears, and along the back of the skull. Sometimes it's a dull ache and sometimes it's a piercing, burning, stabbing, crushing, screaming pain that takes over my entire head and eyes like a migraine.

Most nights I feel like I've reached my limit and I'm about to break, and I scare myself with thoughts of what I want to do to end it all. I don't have a plan, though, and I figure as long as I stay away from developing that plan I'm ok. Is that naive of me?

So, yeah, the questions:

For those who have taken Tegretol, how long before you started noticing an effect on the pain? It's been four weeks since I started taking it (200mg/day) and I haven't noticed the slightest bit of difference. My TN pain, to include scalp, neck, and forehead, along with what seems to be all three branches of the TN nerve (on both sides), is always present and changes intensity throughout the day. I had really high hopes for this medication and don't want to write it off yet if it takes a while to start working. In addition to the Tegretol, I take 3200 mg of Gabapentin a day for sciatic and peripheral nerve pain. Is there a better medication for this?

What do you use to try to manage the pain? Ice? Heat?

Ok, I know I had more questions, but it's taken me so long to type this out that I've forgotten the rest of them. Also, it's an 8+ pain day so I can barely think anymore.

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I'm so sorry to hear your story, I understand the fear and hopelessness. The only med I've responded to at all is amitriptyline. It's known to be effective for the continuous neuropathic pain. I did not respond at all to the the Trileptal (which is similar to Tegretol). I only took Gabapentin for a couple weeks, and though I didn't respond, I don't feel I was on it long enough to truly know.

I'd think you'd respond within four weeks, though that seems like a low dosage. Someone with more experience with that will probably chime in and add to that.

I also get migraines, I'll usually take Frova or Maxalt for those. Or Tylenol PM if I don't want to deal with the side effects of the triptans. My migraines are on the opposite side of my ATN. I have often wondered if they are actually ATN, though I get the nausea associated with them, so I'm going with migraines for now.

You're always welcome to message me if you'd like to chat. I'm new here too. :)

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Hi, Jessibe,

I am sorry that you are having such a tough time of things. Yes, I know you will agree, what you describe would read to me as being Atypical Trigeminal Neuralgia. I am not diagnosing you. That is opinion. I suffer almost identical symptoms, except for that it doesn't awaken me at night.

Yes, I've also tried Tegretol and it did not seem to do ANYTHING for the pain. All it seemed to do was make me a bit dizzy at times. Of course, I've tried a myriad of other medications to try to control it. They finally stumbled upon what controls my pain, for the most part, and my cocktail of meds does include Neurontin/Gabapentin. It seems to control the burning sensations in both of the branches of my lower nerves and ganglion, since that is the area affected most, for me.

I have read that heat is better for the pain, in the meantime, before you find the meds which will manage your pain.

I empathize with you and certainly hope that the doctor's prescribe medications which will alleviate some, if not all, of your pain as soon as possible!

Hang in there!!!!

Best of wishes and luck,

Stef

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Oh my, your pain sounds exactly like mine! Unfortunately, i'm kinda in the same place as you. They are calling it "TN" but there is not official diagnosis yet (though I think my primary care doc has written it down as such). The neurologist also wants me to try the nerve block, which with the amount of pain i'm in right now i'm up for. Thankfully I have insurance and i'll be praying your medicaid gets through soon.

My pain is also bilateral, constant, with intermittant bouts of stabbing/electrical pain. Mine is mostly along the jaw line but also goes up into my forehead at times. I always feel like I have a headache and as if someone is trying to yank off my jaw.

Currently they are trying me on tegretol, baclofen, vicoden as needed, and several other meds to deal with sleep and the arthritis in my TMJ's. The tegretol seemed to help initially as did the bacoflen but it looks like it is time to go up on the dose. My doc told me this would happen. I am finding heat is better than ice (ice sends my nerves on a jumping frenzy).

I'm so sorry for your pain and hope you find answers from your docs and support on here.

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I have to use heat.....lots of it. Actually I am sitting in the recliner as we speak with a heating pad on my neck. My story is almost identical to yours but the meds did work for a time. Then they stopped working. The neurontin works better for me when I take it occasionally rather than everyday. Not sure why that is, but that the way it works.

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You could get help while you get a good med combo - or a procedure - topical lidocaine creame Rx - can bring relief to those nerve endings asap for many here.

Also, get the book, Striking Back - by Dr. Ken Casey -- it is our unofficial "bible" here.