Throat Neuralgia

[ncowleyc]

Hi, my problem has been going on for a month now. It started with a familiar pain that I had last year and the year before. The pain is severe. Starting from my throat in a specific spot it runs up into my ear on the right side. It also goes from my ear to my top and bottom teeth and into my right temple. I can feel it also from the roof of my mouth and tongue. All on the right side. I have been diagnosed with Trigeminal Neuralgia. I believe I also have Glassopharyngeal Neuralgia. It is so painful I want to cry. It usually goes away after a few days. Well this didn't. I have had problems while speaking in the past. The pain sometimes happened only when I talk. I constantly have to stop talking for a day or two. I keep getting hoarse, very gravelly. If I talk while lying down the pain starts and I get hoarse very quickly. I can feel a certain spot that it comes from. It feels like there is something on the right side.I only have a little pain on swallowing when this occurs. Usually from swallowing food.My gag reflex on that side is gone. I can touch the back of my throat with no problem on that side. Other side has reflex. Sometimes in the morning my throat closes up and I have to cough immediately or I will throw up. Feels like my throat dries out. Sometimes I have trouble initiating swallowing and the food gets stuck at the back of my throat. I cough and It clears. I do not have any sinus issues that I know of. Some post nasal drip.
I went to the ER and got the usual treatment for TN of IV meds, Dilantan, and steroids. They took my blood pressure and it was 150/ 98. Asked me if I had high blood pressure normally. I do not. I did have pre-eclampsia with my children. But resolved after delivery.
Got a scrip for steroids and Vicoden. Thought that was going to take care of it. Felt better for a few days but gradually the pain came back. It started to last longer each episode. Instead of a few hours a day it would last 5 or 6. Suddenly my left side joined in and my neck and under my jaw started to swell. I couldn't hardly move my neck and the pain became even more constant. I can see the pulse at the base of my throat now. A week later went back to ER. They looked at my throat and asked me if I was tested for strep. I had a test first time but was never told results. They took bp and still high around 160/100. I had tested it a few days before and it was high normal. Asked me if I had high bp before and I said "Only when I'm in pain it seems." Totally understandable.
Well, they gave me more pain meds, stronger this time because vicoden wasn't working anymore. Thank god for Percocet. Got a scrip for Percocet and steroids plus Amoxocillen. Been taking them for two weeks. Things felt better for about 10 days. But as soon as I ran out of steroids and pain meds the pain started to come back. While finishing  the antibiotic the pain on the right side came back and stayed. It has been constant.
Went back third time yesterday and was told "Well, we have no clue really, maybe it's a muscle in your throat or allergies." after looking briefly in the back of my throat, which looked normal. I wanted to slap them in the face for such a stupid non-answer. They checked for swollen lymph nodes, barely touching my neck and under my jaw. Asked me if I felt they were swollen. I wanted to say "How do I know, I'm not a doctor, you idiot." I am in pain and I do not touch the place I am in pain from. Duh.
My bp was checked again and it was a staggering 187/115. I was obviously in extreme pain and they dared to tender such stupid answers. I was cordial and they promptly refilled my pain med and steroid scrip while giving me the old heave ho. They suggested I go to an ENT. They said they did not have anyone on staff who could look down into my throat.
I felt abandoned and wanted to cry. The pain will come back as sure as anything after the meds wear off. I do not have insurance. I have been referred to the clinic in my area but the wait is 10 weeks for a consult to evaluate based on your financial status. Even then they may not take me because they are overbooked.
I was given the names of some ENT's to look into for a reduced cost. Was told to look through the yellow pages if they will not accept me.
I feel fine with the pain meds for now but when the pain comes back it will be excruciating. When this happens I will have a hard time sleeping because the pain is worse while lying down. It feels like the pressure from lying flat aggravates it. The pain now extends into the upper part of my chest on the middle right side since the strep. Very sharp and squeezing at the same time. I put an icepack on my temple and that helps. I drink hot liquids to make it feel better. Cold drinks makes it worse. I have been using cepocal lozenges and the spray but that only gets the top part of my throat. I am convinced the pain is from the nerve in my throat extending to my upper chest and head. I believe the steroids from the first treatment lowered my immune system and I caught strep which aggravated my nerve pain. After that I am stumped. What could be the cause of my constant pain? The clock is ticking. I need to find an ENT willing to treat me within 10 days before pain meds run out. What do you think could be the cause? I have a bad feeling it is something more than TN or GN. They always went away after awhile. Plus they were intermittent, while this is constant.  I am 34.. I smoke a pack a day. Am trying to quit. Have only been smoking for a few years. Don't hardly ever drink. Please help. Any advice is appreciated. I have, of course, thought of the worse scenario and it scares me. The big C. What else could it be? I am willing to entertain any other thoughts but that one. Thank you for reading this long and exhausting description of my painful journey.

[Kathilee]

I have had the exact same problem for 5 years, after a tooth extraction.  I have seen MANY doctors, and no real answer.  They have run numerous tests without any real results, so it looks like it will be something I have to live with in agony.

[Stabbingthroat]

I have a similar problem.  Stabbing throat pain for 25 years, and after having ear shingles a number of times and shingles on my face along The trigeminal nerve, i now facial and left molar pain.  My throat pain seems to be triggered by weather under 70 degrees, due to my cold allergies, eating any dairy due to a severe dairy allergy, and chemical sensitivites (Search multiple chemical sensitivities).  Strict avoidance of allergens and chemical irritants helps, but is hard.  Deep slow breathing helps as does positive visualization.  Still, We all need to go to competant neurologists for proper diagnoses.   short term use of wellbutrin Antidepressant helps people quit smoking which, sadly, is a must.  Get a biopsy for cancer screening, and let's all go to neurologists for pain medications.  We all deserve professional health care.  

[Kathilee]

I've had the same problems for 5 years, multiple tests and multiple doctors.  No relief.  Today a cup of hot coffee triggered the pain.  Any help?

[dlkerger53]

sorry to hear of your situation. have you found a doctor or treatment that has helped. I have the same symptoms since a tonsillectomy.