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?

New Daily Persistent Headache Syndrome

Yesterday I saw the headache neurologist I have been waiting patiently in pain for over two months to see. He gave me about 15 minutes of his time, asked me a set of very cut and dried questions and cut off most of my answers before I could finish a complete sentence. Luckily my mom was with me and was able to tactfully yet forcefully interrupt him by saying "can I ask you a question?" and got a few questions answered that way. I know a lot of doctors suffer from what I will term "no bedside-manner syndrome" but this guy takes the cake. He was completely deficient in people skills. I was completely unsatisfied with my appointment I had waited so long for. And even more disappointed that my follow-up appointment is another seven weeks away. He wants me to chart my headache pain level on a scale of 1-4 (4 being debilitating pain) until my next appointment and then he will decide what medication to try me on. Gee, sure would have been nice if the office gal would have asked me to chart my symptoms over two months ago when I made my appointment and I would have had plenty of "data" for him and would not have to suffer for another 7 weeks without any medicine to offer relief.

I left his office feeling a little defeated and also feeling like this guy didn't even let me tell him half my symptoms. He told me to go home and google new daily persistent headache syndrome, he said he is almost positive that I have that, but wanted me to read up on it and let him know if my symptoms matched or not or if I disagreed with his diagnosis. Which I absolutely do. Not only are the daily persistent headaches characterized by "mild to moderate bilateral pain" (hello, mild to moderate pain doesn't even phase me, but the intense pain that literally gives me goosebumps and produces muscle knots the size of ping pong balls behind my temples certainly does) they are also not known to have a specific cause. I can pinpoint the day the headaches started and a triggering event. I'm sure it's no coincidence that I've had horrible headaches centered around my jaws since September of '07 after that fateful impacted wisdom teeth extraction when the oral surgeon informed me that I would probably end up with a bad case of TMJ after the surgery (my car accident 3 weeks later didn't help either). Of course, the surgeon neglected to inform me I would end up with dysautonomia, but who could have ever predicted that. It gives me the shudders whenever a friend or relative says they are going to get their wisdom teeth pulled. I wish I would have never, ever had mine out as I blame both my TMJ and POTS on that stupid surgery. I went in young and healthy, and came out a few hours later in the body of an 82-year old woman.

Unfortunately I think yesterday was a waste of an appointment. A bullshit diagnosis that my pre-med friends in college could have more accurately diagnosed. And even more unfortunately for me, that leaves me back with the same old TMJ diagnosis which is not only a very stubborn pain that's hard to knock out, it's also a condition most medical insurance companies will not cover at all. Most dental insurance companies will cover a little bit, typically $500 a year with a $5000 lifetime maximum. Which is hardly enough to cover the cost of one nightguard let alone more effective but costly treatments like botox or even surgery.

I am sure new daily persistent headache syndrome is a very real condition with very real sufferers. I just don't think I am one of them. I would be willing to bet money that that's one condition I don't even have. It almost seems futile to go to most doctors anymore when my POTS friends are so much smarter and offer better advice. I'm talking to you here, Claudia. Thanks to all my friends in the dysautonomia community for being both smart and supportive. Too bad all of us aren't doctors, we'd be a heck of a lot better at it than the ones practicing now.