Originally Posted by Itzagi

Hello, I"m new here (as you can tell). I'm not really proficient at talking to others, so I'll just give my pertinents. I'm a 25 year old man, currently diagnosed with chronic pain in the left ear caused by Glossopharyngeal Neuralgia, born & living in Alaska, and a social hermit. Anywho, I just found this place today, after searching over the past 3 or so years for some source of knowledge to help me handle the condition I've been suffering through for about 12 years.

So, here's what I've been dealing with. I'm going to warn you, it's a very long & very frustrating story, so if I seem angry, you'll realize why: I was born with Eustachian Tube Dysfunction, which basically means that my ears don't regulate pressure properly, so I need Ear Tubes to be inserted into my Eardrums (both left & right need them), otherwise I suffer loss of hearing & pain from too much pressure in the ears.

Funny thing about this, my parents didn't find out something was wrong with me until I was about 4 months old, when they noticed I wasn't responding to sounds correctly. I was taken to the doctor & tested deaf in my left ear and hardly able to hear with the right. That's when I got my first of my Ear Tubes, and I will need to keep getting them for the rest of my life. Everything was hunky-dory for awhile. My ears would hurt if I got water in them or when my tubes came out, but that was it.

Then, starting around the age of 13 or 14, I started experiencing an intense stabbing pain in my left ear. The best way I can describe it is that it's like someone takes an icepick & rams it into my ear multiple times, over and over throughout the day. At first, all of the doctors at the clinic I go to up here in Alaska thought it was an issue with the ear.

When ENT couldn't find any issues & Dentistry ruled out TMJ & grinding teeth, the doctors were either stumped and had no answer or thought I was faking & trying to scam the hospital for pain medication, either to use/sell myself or for my mother (who was & continues to be my advocate) to use/sell. I went through this for about 6-7 years, until I was eventually referred over to Neurology.

After 1 appointment and an MRI scan, they diagnosed me with Trigeminal Neuralgia. I was started on Gabapentine & tried that for 3 months, but it was of no help. They ran me through the rest of the nerve medications, such as Carbamazepine, Lyrica, etc, & was told that losing weight would somehow relieve the pain (at the time I was around 345lbs & although I was chubby, I wasn't proportionally obese).

None of the nerve medication worked, and eventually I was precribed Topical Lidocaine Patches to cut up & apply to the sides of my face & head, which looked & felt absolutely ridiculous. It was around this time that I had the first of many attacks that I would later learn to be Vertigo, which some Neuralgia victims can experience. The first time it happened, I woke up in the middle of the night feeling strange, almost like the whole world were rocking back & forth like a boat while spinning.

The attacks were so severe that I could barely crawl the 10ft from my bed to the bathroom where I could safely succumb to the nausea. When all of my treatment options up here ran dry around 2012-13, I was referred to Swedish Medical Center in Seattle, Washington. After examining my case history & myself, the doctor down there diagnosed with with Glossopharyngeal Neuralgia, and gave me 3 surgery options.

I could either (1) Have them perform a Micro-Vascular Decompression, which meant they would cut into the side of my head & insert a Teflon cushion between the Glossopharyngeal Nerve (9th Cranial Nerve) and a blood vessel that was agitating the nerve everytime it pumped blood through it (I can actually feel & hear it happen when my heart is pumping hard enough); (2) Have them cut the Glossopharyngeal Nerve, removing the overactive portion; and they warned this could cause partial facial paralysis, including in the throat/tongue & effect tasting; or (3) Insert an Electrical device near the spine, attaching it to the spine & having it send a signal to the brain to interrupt the malfunctioning nerve; this was their least favorite option because the risk/reward was less certain & THERE WOULD BE SOMETHING ELECTRICAL ON MY SPINE!, which didn't sound like a good thing.

I chose to go with the (1) Micro-Vascular Decompression of my Left Glossopharyngeal Nerve. Unfortunately, not all of my doctors were very supportive. My Primary Care physician at the time told my during one appointment that I shouldn't have them perform the surgery because it wouldn't work & I would end up in more pain with the left side of my face paralyzed; I switched to a different doctor, but unfortunately that one doctor is the Lead for Pain Management over there, so he still has influence over my case.

Anywasy, after the MVD surgery, I still had some pain, but thankfully it wasn't as severe as it had been. Unfortunately, after a couple months the pain began to come back & eventually returned to what it had been after 5-6 months, where I was in constant pain, had trouble eating because it caused pain, & experienced bouts of vertigo on a regular basis. I was brought back to Seattle & they performed a 2nd sugery, this time cutting some of the nerve away, though I'm not sure if the Teflon pillow remains or not.

This time, the surgery actually seemed to have worked like it should have & I was practically pain-free for the 1st time in years. After about 2-3 months, the pain started coming back again. At first it was intermittent, but it quickly became a constant issue with attacks of the ice-pick pain in my left ear coming back.

Thankfully, I haven't experienced a Vertigo attack since the 2nd surgery, but the actual pain has gotten worse than what it once was. Since then, I have been prescribed 15mg Morphine, both Extended Release & Immediate Release, to control the pain, along with trying all of the nerve meds again (with no results, again).

Come to March of this year, and we get to where I was referred to a Traditional Native Healing Clinic, where they performed what is called "Healing Hands". The procedure is basically a massage on and around the afflicted area(s) using oils, knowledge of pressure points & lymphatic channels, and traditional Alaska Native healing.

For me, that involved massaging & rubbing oil on my head, neck, and pressure points on my chest & feet. I have had 4 sessions with them, and each time the pain has gotten more intense & more sensitive.

I now have a lot of difficulty eating much not only after 3:30pm-5:00pm (my pain progressively gets worse as the day goes on, peaking in the afternoon & night), but throughout the day & the pain can now be triggered by the wind or a fan blowing against the left side of my head (I never had that happen until after one of the Healing Hands sessions), any motion of my jaw, whether I'm talking, chewing, swallowing, burping, yawning, or even brushing my teah, and I can't have any weight on the left side of my head when sitting or laying down on a couch/bed.

Anyways, that's my story. As you can probably tell, I have some resentment for the clinic I go to here in Alaska, but it's the only one I can go to right now. I look forward to finding some useful tips on here, not only on how to control the pain, but on how to talk to my doctors to convince them to believe me when I tell them how bad the pain is. Although I've gone through 2 brain surgeries & have stuck with the same story with the same clinic for about 12 years, yet there are still people there that truly believe I'm faking so I can get pain pills. Perhaps I just need to bring them a cookie. Everybody likes cookies.

Originally Posted by Lara

Hello ltzagi,
Wecome to the NeuroTalk Support Groups.

I have quoted your post below and spaced out your post into paragraphs to make the text easier to read. I hope that's OK.

Originally Posted by EnglishDave

Hi Itzagi,

It would be useful for the future - and I hope you stick around, we need more Nerds - if you copy this Bio onto your Profile Page so that others who come long after this Thread has slipped away can instantly see what you deal with. I find it insightful reading detailed Bios, you get the opportunity to really know someone.

Dave.