I was wondering if anyone else has tongue spasms along with the chronic facial pain. I have had twitches before but yesterday was the first time they were really really bad. It was so painful I was seriously considering going to the ER. It happened just after I had eaten a sandwich for lunch. My tongue burns on the top most often, in the evening the pain is always much worse than in the morning. I called my doctor's office but he was not in. I told the nurse I would come in to see the doctor on staff or that I would possibly need to go the ER. They elected to call in a prescription for Zanaflex (6 mg 3 times a day) without seeing me. I took the dosage as he prescribed and used ice on my face and under my chin to try to get it under control, it was late when I finally was able to sleep with minimal spasms. Today, I feel it twitching like it wants to spasm out again. I am having a real hard time talking, chewing, and I choke alot on food and beverages. I have some sort of paralysis in my tongue that makes it very hard to swallow. Yesterday my tongue and lower right side of my felt like it was swollen but when I looked in the mirror, I looked normal. If anyone has any suggestions, please feel free to comment. I need help. Thank you very much.
Bonnie, I think you need to see a neurologist. As soon as possible. This sounds really awful. Not to mention VERY painful... I feely really bad for you.
Min thank you for your reply. I saw an Oral & Malliofacial surgeon on May 14th. He referred me to a neurologist but my appointment is July 25th. I asked to be put on the waiting list in case anyone cancels their appointment with one days notice, I could be there. I have been having really bad headaches as well. Dr told me I did not have TN, no abcesses, no TMJ, no Tumors and no nerve damage. He said everything looked good. I told him most of my pain was on the right side of my face starting with my ear, then coming down my jaw. I have constant burning pain on my chin, tongue, inside of my mouth and lips (most of bottom and RT half of top lip). The pain comes from the place where my molar tooth was pulled. Though recently my left started with a dull ache and my left cheek feels very tired. When I eat or drink, I get a very cold feeling like it's coming out of my mouth. I had a liquid dinner last night as I could not chew my food and move it to the back of my mouth to swallow it. I am at my wits end with this pain.
You need to see a neuro as soon as you can.. I would call a different one or go to the ER. You can't wait until July, hon. You need to be on pain meds. I can't believe this doctor told you that you do not have TN. It sounds pretty much like ATN to me. Sounds like most of the symptoms that I have except for a few and I take Trileptal and Amitriplyne to control it every day. Plus oxycodone for breakthru. Isn't there other neuro's in your area that you can call or tell this doctor that you are in EXTREME pain??
I agree with Min. You need to be seen THIS WEEK not in July. Go to an ER or Emergency Care Center, if your doctor won't work you in.
Spasms of the tongue are a little unusual in TN but can happen with hemifacial spasm, in a different cranial nerve. Otherwise -- at the risk of me contradicting professional medical advice -- you seem to have a pattern of pain that tracks rather well to Type II Trigeminal Neuralgia or perhaps trigeminal neuropathic pain from dental or other blunt force trauma. There are no definitive tests for TN. The diagnosis is almost always made from pain patterns and reaction to a short course of Tegretol or other anti-seizure drugs.
Thank you Red and Min also. I am researching other neurologists in my area trying to get in as soon as possible. I cannot tolerate these painful spasms.
I know what you are going through, I have the horrible tongue
burning, all on left side, the electric shock pain in the left side also.
It was so bad on the 5th of May I had to go to ER, Even with all the
IV and meds to stop pain, it didn't stop. They put me on pain meds.
for 4 days. The Pain Mgt. Dr. increased my gabapentin, and
added topamax, also lidocaine patches. I am a new patient and new
to this site, and you are the first person with the symptoms liken
to mine. I ate my first meal yesterday, and I try to drink protein
drinks during the day. They started me on medications May 7th.
If I didn't talk, eat or move my tongue my pain would be okay....this
is an unbelieveable situation.
Hope you are better, be blessed.