Apr 17, 2012

Milkshakes and Muscle Relaxants

That about sums up my day...not as fun and 'relaxing' as one might assume by the title. Although some new health problems have cropped up this year, I felt like I finally had a handle on my intense TMJ headaches. In fact, I thought I was out of the woods in that department. No such luck. I haven't had a doozy of a headache like this since last year!

Not sure why I have one right now...except for the fact that I am almost positive that some higher power is playing a sick cosmic joke on me...it sure seems like I'm being punished for doing the things I love most: eating and talking. Which I have to refrain from entirely when I get a TMJ headache like this. And forget trying to have a social life or be successful at any sort of job. As if POTS weren't enough to deal with on it's own...thanks Universe for being such a sadistic jerk. One major, debilitating health problem is more than enough to deal with and already more than I can handle.

There's no real rhyme or reason to what brought this headache on (no excessive talking or chewing lately) but it started around the same time last year and lasted for MONTHS. Last year I saw a neurologist who suggested a misdiagnosis of 'new daily persistent headache syndrome' without so much as feeling the giant muscle knots that feel like marble-sized cysts sitting right beneath my scalp. My mom can feel them, my friend can feel them, I can feel them. All with our bare, untrained hands. It's creepy. Nobody else has muscle knots like that behind their ears and on the sides of their heads. These knots are movable, get bigger and smaller, and are somewhat relieved by massage. Feels like awful menstrual cramps in my head. When someone presses directly on a knot I get goosebumps on my arms from the intensity of the pain. And that's saying a lot considering I have a high pain tolerance (I didn't even take any pain meds after returning home from my appendectomy).

The amount of vigorous massage it would take to break these suckers up is unbelievable. And frankly the flexeril has done nothing but relax all my other muscles and not touch the ones on the sides of my head. My primary care provider informed me that there is really "no good muscle relaxant for those small muscle groups." Fan-freaking-tastic. The only thing I have yet to try to remedy these awful muscle cramps is botox.

However once I had gotten my headaches under control I didn't think I would have to deal with this intense pain ever again. I should have known better. I am afraid that if I go in and get botox in these muscles now that it may freeze them in their knotted position and leave me in pain for the three months that the botox lasts. No doctor seems to know much at all about botox for TMJ and they sure as heck do not know how botox works in an EDS patient.

To say I'm annoyed right now would be an extreme understatement. Narcotic painkillers don't even touch this and the muscle relaxants don't do much either. Wish I knew someone who was confident enough to try to put my jaw back into place or break up the muscle knots somehow. Desperation is setting in. I am scared that it is going to be a repeat of last year with a months-long headache. The majority of my spring and summer last year was spent in excruciating pain thanks to these stupid muscle knots. Is this common in EDS? Why do I only get them around my jaw? And most importantly, how do I get rid of them? Any suggestions?


  1. So sorry to see that you're suffering so badly right now.

    I used to have horrific TMJ headaches (as if the pain is focused all around the head, how about down your back and shoulders too for the win?).

    What finally got me out of the cycle of TMJ headaches, as mine would come and go in flares as well, was a really well-made bite guard for sleeping. If I start to get even a twinge of pain I start wearing the bite guard again. I used to wear it every night for years, but then the doc said I could use it at my discretion after we really sorted out my misaligned jaw and the major swelling went down in the tendons and muscles. Perhaps you already have one, but if you don't, go to a TMJ specialist and have an assessment, not just a dentist either, a TMJ specialist. For some time, at its worst, I wasn't able to open my mouth at all to eat or speak. I'm so thankful that my bite guard significantly helped one of my many ailments.

    Good luck,

  2. Thanks Jenji! So far I have tried three different biteguards, one which helped for awhile but is no longer fitting properly. It seems my teeth have shifted a bit/changed shape or something...breaking the cycle seems tough to do! Have you ever tried a neuromuscular dentist? I have seen two different TMJ specialists before but I am afraid they were both really over priced and a bit old-school in terms of technology...a neuromuscular dentist apparently calibrates a more precise measurement of a physiologically correct jaw at rest. I am also trying out physical therapy next week to try to get these muscle spasms under control...I need all the luck I can get these days! Hope you are well and glad to hear your TMJ is under control!

  3. Oh my, that constant head pain is the worst!! Especially when you know there is nothing that will give any relief. I wish I had some advice or suggestions, but I don't :( Sorry lady! Hang in there and I will be praying for you...


  4. Thank you Erin! Your prayers and support mean the world to me! I hope you are well!