How Did I Get Here?

So, here's my story:

  • Daily headaches attributed to stress or med side effects.

  • Over summer, intermittent ear pain. I thought it might be water in my ear from swimming and used ear drops to self-treat. No real relief.

  • September 8 routine dental appointment with dentist. Checked the ongoing issue of click in right jaw. Clicking seems worse, but no pain associated with it. He has x-rays from previous visit (panoramic). Teeth clenching and grinding noted and follow up for mouthguard mold scheduled.

  • Mouthguard mold made September 11. Received September 18.

  • Cold symptoms started and prevented mouthguard follow-up.

  • Cold symptoms increased and ear and throat pain on right side prompted visit with primary physician’s office. Unable to see primary care doctor. Saw another MD in the office on October 1. Was told that my ear pain was due to “a head full of snot” and sent away with Flonase.

  • Flonase ineffective; ear pain increased. Coughing began. No fevers.

  • October 8: sent to Urgent Care as primary care was unable to see me in her office. Ears and throat checked. Zithromax prescribed for bronchitis.

  • Contacted primary care on 10/12 to report that bronchitis had improved (this was last day of Z-pack), but ear/throat pain was still severe. She was not in the office and another doctor answered to wait to see if Z-pack would resolve all symptoms. Take Tylenol (this did not help the pain).

  • 10/16: Follow up with dentist for mouthguard. Asked him to check on my ear pain as it had not eased and questioned about TMD. He did an exam and did not find any evidence of TMD.

  • 10/22: Called primary care office again with c/o pain and was sent to Urgent Care rather than wait for their next available appointment. Saw same doctor again. Right ear now impacted with wax. Ear flushed thoroughly and exam showed no issues with ear. Tried adding a numbing ear drop to the ear to see if it would reduce pain. No effect. ENT recommended ASAP. Tylenol #3 prescribed for pain.

  • 10/23: Seen at University Otolaryngology Associates by physician assistant. He entered the room saying that he would take a look, but suspected TMD. He did an exam similar to dentist’s and although all of the answers were “no” to pain when pressing on areas during diagnostics, he diagnosed TMD. Was told to talk Tyenol 800 mg 3x/day and put heat on the area. If no lessening of symptoms in 3 days, make appointment at TMJ clinic.

  • Contacted dentist, as he had not seen TMD symptoms. He scheduled an appointment for 10/26 to re-evaluate.

  • 10/26: Saw dentist. Still not convinced of TMD, he referred me to endodontist, who saw me the same day and ruled out TMD. He mentioned throat cancer or swollen glands or nodes in the throat and that scoping or other detailed ENT exam was needed. I didn't hear much after the "c" word...

  • Endodontist office scheduled appointment with ENT's office for 11/1, the soonest available.

  • ENT’s office did 2 scopes and saw nothing unusual, so an MRI was scheduled for the following day.

  • Scheduled follow-up with primary care on 11/6 revealed no abnormalities on MRI. She prescribed one week of Valium at bedtime to replace Ambien and Clonopin to see if relaxing muscles at night would help. After one week, pain is still evident and I was not sleeping well.

  • Received message from ENT’s office on 11/6, after seeing Dr. Perry, advising me to take 600mg Motrin 3x/day for possible carotidynia. Chose to try Valium first – had already filled the script – and previous treatment of 800mg Motrin 3x/day recommended at 10/23 ENT visit with Urgent Care PA yielded no relief. Motrin tends to make me bloat (hands and feet especially), so I do not want to do this again if it is not necessary.

  • 11/12: Left message via MyChart for PCP.

  • 11/13: Left message via phone for ENT.

  • 11/15: Follow up with ENT. Was told there was nothing else he could do and a neurology consult may help.

  • 11/16: Left message for Dr. Perry regarding ENT visit.

  • 11/19: Dr. Perry’s office made appointment for 11/21 with neurologist.

  • 11/21: Appointment with neurologist. Thorough exam. No "hand on the doorknob". Spent 1.5 hours with me and diagnosed Glossopharyngeal Neurologia.
  • Prescribed Tegretol 200mg twice a day, advancing to three times a day and an MRI and MRA with and without contrast (this week Thursday).

My biggest issue has been my husband not understanding the severity of the pain. I hide it from my sons so they won't worry. When my husband suggested psychosomatic pain, I was so angry and sad and ready to give up.

Current symptoms:

Pain is constant and extends from ear to under jaw on right side. 1-2 times per hour there is a stabbing pain that lasts 20-30 seconds.

You are describing me to a tee. You are not alone, hang in there. My best advice is to have our husband read through these boards with you. They can’t see any physical injury so it’s hard for others to understand. Also, this board and a Facebook private goup is extremely helpful to me, when I feel that all these doctors have missed something and I fear I’m actually dying without a correct diagnosis, you can read that others are experiencing the same symptoms. The group is GPN really sucks. Go join it.

Thanks, I just requested to be a part of the group on FB. I just wish he would see the word "excruciating" and really just get that I am in pain. Very real, very horrible pain.

Sorry to hear you have joined the club. All our stories sound the same, so we can all relate. Just remember you're not alone. :o)

I am so sorry. What you described about all the doctors sounded like me. Everything kept coming back negative. I do have glossophayngeal neuralgia. Without certain medicine, I would not be able to eat, talk, breathe, or sleep, The pain and burning also is in my throat, mouth, tongue, and gums of the teeth. I aslo have head, right groin, and stomach neuralgias.

I totally understand the pain. It's like no one understands but you. The other people just don't get it. My family thought I was overdoing the complaining. I just kept thinking, "how would you know." Some of my family would cry over a little owie and go on and on. I sat in so much pain that I wasn't sure that I wanted to go on.

It really helps to know that you are not alone. Thank goodness for the computer and groups. I felt so alone for almost 14 years.

It may take awhile to try all the medicines until you get one or two, etc. that will work with the awful pain. I was on Tegertol at first. It helped a little, but not enough. If I forgot to take it when I should, the pain would remind me. I currently take Nortriptyline. That is the best one for me. I take other drugs also for other reasons. Some of them are also used for neuralgia symptoms.

I have found that if I don't get enough sleep that I am in more pain. Breakthrough pain still happens. I get tired very quickly.

The good think to know is that you are not alone. You have a group of people who share the same thing you do. You have a wonderful group to talk to.

Please keep us updated. I know there are some very nice people in the group that will give you good feedback.

Jenelle

What a horrible journey you have had to diagnosis and hopefully relief. I had a journey with some similarities, though it wasn't as bad as yours.

When my pain started I went to our local ER, where the attending physician told me he thought Celebrex caused it, and that I should stop taking it because it's a bad drug anyway.

I saw my dentist and then an oral surgeon about jaw problems and teeth grinding; bit through one mouth guard in less than a week. Saw an otolaryngologist about ear pain, ringing, vertigo, and hearing loss; he sent me to a neurologist who did numerous tests and diagnosed Meniere's syndrome.

Finally did some research and then went to a neurologist who specializes in pain management. He diagnosed it immediately. I take gabapentin with much relief. I no longer grind my teeth. The ear ringing and hearing loss is still there, as is the vertigo, so perhaps the Meniere's is a valid diagnosis.

My newest symptoms are blocking of the parotid gland on the affected side. My neurologist feels all these things are related, some more easily relieved than others.

Thank you all so much. I have felt so alone and like this excruciating pain was being minimized by others. I am so glad I found you.

I have it too. Anyone else have MS with it?

I have a friend with MS, and he has multiple problems, but has escaped this one...

Definitely sounds just like my journey. Pain is subjective and only you knowvhiwvrealnir is. At times I felt that if I had a limp that people would feel for me. GPN is a tough one since it is not popular and not well understood. I am lucky in that my pain has been resolved through decompression surgery. I am a Physician and this journey has given me a unique perspective. I hope that I am a more compassionate caregiver who thinks out of the box. Please use me as acsourcevof information and hopefully inspiration.

About 18 years ago I went to my primary with a tremor. "Yup", she said but it doesn not look like Parkinsons. Looks like MS." I howled of course and she said she would treat it. Well, then I would get tired, balance issues, blurry vision, and then trigeminal neuralgia on the left side. My Mom had trigeminal neuralgia. Primary gave me Neurontin, which worked. ( I am an RN., and as you know Neurontin is viewed by many as a weird drug.) Connected with a TN group which was helpful, said use drug only when attacks, they were few, but I have had the God awful pain. And then..........got it on my right side bilateral TNn is frequesnt with MS people. Primary sent me to a neurologist, one visit, to see if she missed anything and this man said looked like bilateral TN, unsure if I had the MS., and probable had GN, by that time I had intermittent pain in my ears, back of throat and of course teeth, and gums. With bilateral TN, you get pain only on one side but it will "jump". By this time I had fallen splat 2x, MS people just fall and it is so fast you are unaware, and I had some other symptoms. There is an old MS addage "go home and live with it"....and I did. To be diagnosed, just would screw up my life as I do not need MS medication. This fall I had the neuralgia pain we all know deep in my throat left side. Very isolated pain. We live rurally and my primary now has no experience with GN. Historically, they treat it like TN. This is the longest post I will ever do. I am ok, just scared. I still work.

Thanks Funtsie for sharing your story, helps to know what others are going through.

In my opinion you DO have TMD if your jaw is clicking and you clench/brux at night. That is not normal, so don't let them tell you it is.

You need to find an expect to diagnose and treat it. It can also have an effect on your spine, all the way down it, starting with the atlas (C1) which has a close relationship with the function. If your atlas bone is slightly out of place it can have a huge effect on the cranial nerves and sensations/pains.

I am negative for all of the other TMD symptoms and the clicking is not painful.

Jeffina said:

In my opinion you DO have TMD if your jaw is clicking and you clench/brux at night. That is not normal, so don't let them tell you it is.

You need to find an expect to diagnose and treat it. It can also have an effect on your spine, all the way down it, starting with the atlas (C1) which has a close relationship with the function. If your atlas bone is slightly out of place it can have a huge effect on the cranial nerves and sensations/pains.

Thanks to both Funtsie and rmc. This is such a horrible disorder to diagnose. You would think more is being done to figure it out!

I was the same for years, clicking without pain but it does come on eventually. If any other joint in your body was clicking in that way you wouldn't think it was acceptable.

The clicking usually means either your jaw is too far back or misaligned (usually both in most cases). While you don't have the pain as such it will be having a negative effect on your spine.

I have had the pain for several years and they can see the bone irregularity that causes it. Since it has been there for a long time with no pain and the pain is not related to, or changed by, the clicking, TMD was ruled out.