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Posted 1/9/2018 11:58 PM (GMT 0)
Hello,

BACKGROUND INFO:
I've had headache 24/7 for almost 5 years. I typically have a worse headache in the morning when I wake up. I was given a night guard by my dentist a few months ago (in August). Originally, the pain improved. Then it started to get worse (about a month ago, in early December). Actually, I have more jaw pain than before now!

I saw my dentist last week about the worse pain and headache in the morning. He referred me to this TMJ disorder specialist.


APPOINTMENT WITH TMJD SPECIALIST:
I feel *very* uneasy following this appointment with the TMJD specialist. I have been to *so* many doctors that sometimes I feel like I'm falling down the "rabbit hole." This TMJD specialist wants to give me a splint that I will have to wear all day, all night...

He seems like a nice guy, I guess. He took a lot of time consulting with me and the office staff were very kind. But as I said before, I am extremely uneasy. Actually, I am filled with a very intense sense of dread.

Part of it may have been that he couldn't give me a timeline for improvement, and talked about it being complicated by my "fibromyalgia" (I told him I had been diagnosed with fibromyalgia-like syndrome in the past, but most recently with Lyme Disease).

My medical insurance covers the consultation, but not the treatment, so I'm sure it will be expensive. I've been through so many treatments, and I can't spend thousands of dollars on treatment that isn't even effective.


THOUGHTS:
I am considering going back to a dentist that I saw previously. She recommended Botox for my headache/facial pain issues. I didn't see her, because her services were very expensive. But now, this doctor's services are very expensive, too, so I may reconsider.


QUESTIONS:
Do any of you have any knowledge about TMJ disorder? I've read some articles online that it can be related to Lyme Disease, but not a lot about treatments for TMJ symptoms in someone with Lyme Disease.

Also, do you have any suggestions for making these kinds of health care decisions?


Thank you.
Posted 1/10/2018 2:33 AM (GMT 0)
We had a few posts on this before the holidays. If I had time, Id use our upper right goggle for this.

Like the other muscles/tendons and joint, people here get it. There are you tube vids on how to massage it. If caught early, it should go away with the various massages of the head and neck muscles. Some Chiros can do this too.

Of course- eradication the lyme helps, but being proactive with hands on treatment will shorten the healing here. Acupuncture can also be done for this - I did not do that though.
Posted 1/10/2018 9:59 AM (GMT 0)
Bump
Posted 1/10/2018 12:35 PM (GMT 0)
I'll bite (no pun intended).

I was diagnosed with TMJ in 1991 ish. Symtoms started with clicking of the TMJ joint, progressing to finally the jaw muscles freezing up and having to eat thru a straw. I went to a TMJ specialist who basically used an appliance similar to a sports mouth guard to re-align my jaw over a 9 month period. Every week the appliance would need to be adjusted.

Then I went to the orthodontist up-stairs to get braces to move most all of my teeth to match my bite to the new jaw position. This took about two years if I recall. I still wear a night guard to maintain the bite position and prevent clenching.

This was way before lyme time, so I can't blame it on the tick bite. After the first year of TMJ treatment I went deaf in my left ear while on vaca on Cape Cod. Dx was dead cochlear and only explanation was probably caused by a virus (maybe this was my first tick bite). My dead ear is still ringing to this day. Another year later I had a fast growing cataract removed from my right eye caused by a sports injury.

This Lyme thing is just another bump in the road.

Post Edited (tickbite666) : 1/10/2018 5:52:27 AM (GMT-7)

Posted 1/10/2018 9:03 PM (GMT 0)
I don't know much about TMJ except that I was diagnosed with it, and I did see an orthodontist for treatment.

I spent over $1200 for the first appointment taking the castings of my mouth and the splint its self.

And I wore the splint maybe three times, for a total of less than 36 hours.

I couldn't get over the incredible taste of plastic in my mouth. It was so, so awful, and I was only to wear it overnight. I can't imaging having to wear it all day. I kept thinking about all of the toxins it was releasing into my mouth. Then I read about cranial sacral therapy, and how your teeth and all of the connecting bones are supposed to be able to move during the day and night and splints hinder that movement and can be detrimental to your health.

Such a waste of my money. I work on relaxation of my jaw muscles instead, and that has been moderately helpful. I don't by any means have severe TMJ though. There was no damage to my joint when I was diagnosed.
Posted 1/11/2018 2:27 AM (GMT 0)
I saw a similar TMJ dentist. I bought the splint for daughter and myself. We wore them day and night. At second visit he did some sort of cervical adjustment on us (he was pressing on our spine while we did certain maneuvers) plus wanted us to do exercises at home. They gave daughter a headache and I felt like they made my neck worse. We went for follow up and he did even more spine manipulation. I was in severe pain for weeks after! I canceled the future appointment and have weaned myself to just night wear of the splint. My TMJ is flaring again. I can handle that better than a locked up neck!

I’m choosing to believe that TMJ will get better with Lyme treatments.
Posted 1/12/2018 1:54 PM (GMT 0)
Hello,

Thanks to everyone for your responses. I'm so sorry to hear about some of your bad experiences.

I feel a lot more calm now. I have decided not to continue with the splint treatment, at least for now.

The TMJ dentist had me forcibly pull my mouth apart as far as I can, which caused intense pain (worse than I've ever had) which hasn't even begun to subside until now. I looked up exercises as some of you suggested and it looks like most of them suggest gentle stretching. So, maybe my "gut feeling" was on to something...?

Anyways, for now, I asked my TMJ XRays/records to be sent to my LLMD. Also, today I'm seeing a chiropractor for the 1st time, since lot of my issues are the kind of thing people associate with seeing a chiropractor.

Thanks again.
Posted 1/12/2018 2:48 PM (GMT 0)
Agent Bex, if you decide to seek treatment with a TMJ specialist at some point, I urge to go to this site; tmg.org. This site you can help locate reputable TMJ specialists, meaning that is their specialty. Many dentists claim they know how to treat TMJ & they do not. It is a very profitable business, often much of the treatment is not covered under insurance. Knowing this, sadly people are often nothing more than a cash cow for them & end up in worse shape than they started with. I have TMJ & have treated with the worst & fortunately found a real TMJ specialist. By the way, what you experienced with the dentist, I would put him in the cash cow category.

Good luck.
Posted 1/15/2018 9:40 PM (GMT 0)
Hi stray dog,

Thank you for the help. I will check it out if I do decide to get treatment for TMJ.

Thankfully, the pain has gone back to baseline in my jaw. I am seeing a chiropractor who is helping me with head/neck/shoulder stuff-maybe that helped.
Posted 1/15/2018 10:14 PM (GMT 0)
I've had several splints over a few decades and problem started before lyme.

The last splint is the only one I've had for upper teeth. It's a very hard smooth plastic and I've always wondered about it releasing plastic chemical into my system. I've stopped wearing it because my teeth hurt after I've taken it out.

Since my teeth on one side are lower and this causes my discomfort the splints are supposed to stop the clenching and allow my jaw to go to the right position. Getting new crowns would be next. I've spent thousands for crowns in the past.

I've done exercises in the past couple years and I think they are better for aligning my jaw so have stopped wearing the $1000 splint.

This started years ago when I was told I had rheumatic fever at age 13. My jaw was infected then and very painful and didn't grow properly. I've wondered if that was really lyme as my other symptoms then were so like children with lyme disease and I didn't have strep.

But getting back to toxic plastic, what I do sometimes is even worse! I put a very thin wad of saran wrap on the lower side and it stops my clenching.

My brain just doesn't like the feel of hard plastic when my teeth touch the plastic when they come together.
Posted 1/17/2018 5:02 PM (GMT 0)
Hi Korissa, thank you for sharing your experience with TMJ and splints. Ay, I'm so sorry to hear that you got sick at age 13. What kind of exercise do you do for your jaw that helps?
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