Venting

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1

I am a 36 year old female and my first episode (or at least the first that I associate with this condition anyway) was during Thanksgiving vacation when I was 26. I was speaking with my family when all of a sudden I felt a sudden something. I had no idea what it was as it stopped instantly - a shock of pain? a shock of heat? Just a sudden knowledge of a part of my body I cannot usually feel? It was weird. I stopped talking. I told everyone to stop talking. When next I swallowed - there it was again... a stabbing pain that resonated from my throat up to my inner ear - then it was gone. I refused to speak. I refused to swallow. I started to panic - and drool... a lot. Very quickly I realized that crying and getting upset increased my saliva which increased my need to swallow which increased the occurrence of the pain which in turn increased my panic... and so began what I now refer to as my "silent tears." I was rushed to the ER where I was treated like a drug seeker - forced to have x-rays and prodding in the area of the right side of my jaw, neck and ear. They didn't want to give me anything... Thank goodness for my dad who went to battle for me and I got Demerol... and pain killers... Then went home to bed.

The diagnosis... I must have dislocated my jaw and it went instantly back into place which caused a series of muscle spasms. Don't worry. You'll be fine.

5 years later... This time with my infant son and in a conversation with my sister - the above scene played out again. AGAIN. Same hospital, same reaction... oh you must have TMJ. Diazepam. Go see a Dentist.

1 year later... This time while watching TV with my husband... ER... Diazepam and IV Ibuprofen... TMJ. Go see a BETTER Dentist.


Ugggh... These episodes are debilitating. I cannot do anything. Saw a dentist. Had my bite shaved down. Got a bite guard. Fingers crossed...

1 year later... this time while pregnant and alone with a 2 year old. Knew I could not go to the ER and could not have medication. Put my screaming son to bed early and slept on a bag of peas...and cried.

Since then I have not gone to an ER... every time since I somehow convince myself that it's not really the episode... in fact it takes me a good 20 minutes to convince myself that yup, this is it again... and then 10 more minutes before I am floored with pain.

the most recent episodes were July 2012, May 2013 (during which I was CONVINCED I was going to die with my daughter in my arms) and August 2013... the gaps of, well I guess they refer to it as remission, are shortening... and yeah... I'm worried. I was finally diagnosed in June 2013 as GPN and have since had 3 MRIs, 2 CT scans, 1 Nuclear Thyroid Scan, 2 ultrasounds, and an unbelievable amount of blood tests. All of which have basically come back and said - hey - you're good. Hear that... I am fine. Whew... I guess I can relax, right?

Well... I am not. Relaxed that is. I live in fear that it will happen again. I have an emergency "action plan" that for the first time was put into play this week. But I am scared. Scared that it will happen tonight. Scared it will happen during my son's Karate graduation and I will miss it. Scared that all of my contacts will be "busy" during an episode. Scared that my job won't understand. Scared that it will come more frequently. Scared that the valium that seemed to help last time was a coincidence and it will not work next time. And scared that it is something more. I hate this. And more so - I hate feeling like nobody around me understands.

And that my friends... is my vent today. And in a crazy way, it helped.

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My ER trip was the same, could not find anything so must be crazy or a drug seeker. Pain so bad I thought I could truly die of shock. Even a year later after being DX with glossopharyngeal neuralgia my neurologist made a comment about the ER trip that it must have been a bad psychological reaction to the steroids I had been put on. I was mad after that comment–thought you feel like an ice pick is being stabbed through your ear into the back of your throat and a wood vice is crushing one side of your neck and have someone tell you, you are a psych case. There is my vent. Makes me sad so many people are treated like this.

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Hi Briley,

I feel your frustration and pain. Your scenario is almost verbatim what happened to me. Instead of all my details of pain and circumstance I will tell you that Tegretol at least a 1000 mg was a godsend!!! Avoid the BIG pain. If you can tell the monster is back, avoid talking and whisper..................relax as much as possible and take the Tegretol 600 mg daily. If this stops working and attacks seem to be stronger and more frequent like mine, then think about the MVD surgery. I have been pain free and medication free for the last two years.

If you need to get in touch with me, my email is ■■■■■■■■■■■■■■■■■

I still pray for all who endure this kind of pain.

Visit TNA.COM lots of good resources

Take Care-Lee

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Good Morning Briley,

I sent his via email/replied to yours and it was returned.

My first episode was about 8 years ago and like you it came from nowhere when I spoke. The pain was horrific and almost brought me to my knees! There was no sign of it for several months again but when it hit, I was at work on the phone and actually hung up on a customer. The pain was sooooooooo bad and I didn’t realize that each time I spoke the pain would occur but I figured that out real quick. I went to the Emergency and they saw nothing! I saw another doctor the following week and he diagnosed me with acid reflux. He prescribed steroids and of course I thought that did the trick because there was no sign of the monster again. It came back a week later and after seeing an EMT I was finally diagnosed correctly. He stuck the scope down my throat and actually saw nothing except the kind of pain I was in. It burned to cry, speak, laugh, yawn…………………………………The pain was so bad that I had to bring a pad of paper to communicate. Anyway, this doctor saved my life because he said although he didn’t see anything he would contact a colleague of his because he thought that with the kind of pain I was in, it could be an extremely rare illness called GPN. He mentioned he had never seen it but read it in text.

He called me back that afternoon and told me yes, he believed I had this illness and called in a prescription for Tegretol 600 mg. This medicine immediately worked! I took it for a week and then no sign of it again for a year………………………

One year later, it came back again when I swallowed. The pain was, as you know unbearable. When I spoke, not realizing that would hurt or just not thinking…………………..the pain was just excruciating. I was back at the emergency. I never did any research on the GPN nor did I even remember the diagnosis……………………………….The emergency did a CT scan and of course it showed nothing. They gave my numbing medicine that I stuck down my throat with a q-tip…………………………………….I wanted to die!!!!!!!!!!!!!!!!!!!!!!!! The pain was so bad and worsened when I tried that procedure………………………………..

Anyway, sorry this is so lengthy……………………..

Long story short lol

I was seen by numerous surgeons at USC, CSMC & UCLA and they suggested to increase the dosage of Tegretol and not go through with the MVD surgery unless it was the last resort.

Meanwhile my family was worried sick about me because I had thrown out comments, that I’d rather die than live in this pain. Yes, the pain only hit 2 times a year but I’m quite sure it’s the kind of pain that most people will NEVER ENDURE.

My sister found the website TNA and she had to do all the speaking for me. A person by the name of Bill responded and on a support group and said to INCREASE the Tegretol from ■■■■■■■■ until the nerve calms down. I did that and it worked like a charm. We became friends and supported one another almost daily via email. He had struggled with GPN for 20 years and knew how to get the nerve to calm down and also avoid the big pain.

Once again I had no pain for another year. But it hit again and the Tegretol Would only work in high dosages. I was taking it every 3 hrs, even throughout the night. If I missed one dose I’d be in HORRIFIC & EXCRUCUCIATING PAIN. After doing research about this illness I decide to see a Neuro Surgeon, Dr. Duma because the Tegretol had finally taken its toll on me. He suggested the MVD surgery. I left his office in tears but prayed about it and decided that this is my only option to get my life back.

The surgery was a success and I woke up with no pain. I was weaned off the Tegretol and I never had another episode for 2 years.

Unfortunately, the pain did resurface and I did have another surgery 18 months ago. I am pain free and medication free. I pray that this illness will never resurface and I pray daily for all who struggle with this diagnosis and pain.

You may write me anytime or call me. I am happy to give support to anyone that desires. As I mentioned, Bill was an amazing support for me. He could relate to exactly how I was feeling emotionally and physically & I’d like to do the same for you.

Take Care, (ONE DAY AT A TIME)

Cyndy

714/■■■■■■■■

P.S Where do you live?

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I understand. You are just another warrior woman.X