looney

Dear Group,

I've been here on and off over the past two years. To make my long story short, I developed TMJ problems after I came off of Klonopin (Clonazapam) too quickly two years ago. The drug has muscle relaxant properties, and when I came off fast without a good taper, I experienced very very severe rebound muscle tension, especially in my neck, shoulders and face. Within months, I noticed my jaw was clicking and it's been downhill since. Before my jaw even started clicking/popping though, I developed a very severe tight band headache that is especially bad in my temples and scalp and at the base of my skull. I still remember the day this headache started. It has been continuous (no exaggeration) for the past 1 1/2 years! It never stops.

TMJ doc #1 provided me with two splints, both of which I believe were way too thick (couldn't close my lips over them) and seemed to aggravate the condition. I gave up on him after 6 months of awfulness. TMJ doc #2 confirmed that I do have two dislocated discs without reduction. He also made a splint for me, and I seem to be doing much better with this splint than the others. I have increased my mouth opening from 26 mm to 36 mm. The clicking is less, I have less ear pain, decreased facial tightness, less eye pressure, and generally less jaw pain. The problem is that my headache/head tightness hasn't budged. I've been receiving this new TMJ guy's treatment for almost 10 months now, and still, the head tightness won't budge, and I'm very disappointed because it is by far my worst symptom.

I'm beginning to wonder if I have some other neurological problem due to the severe withdrawal syndrome I've been experiencing post-Klonopin. I went through a horrendous withdrawal, and I still have other problems such as an inner vibration, muscle jerking, sleep trouble, stress sensitivity, and tinnitus/hyperacusis that began the day I first dropped my Klonopin dose and continue until this day - 2 years later.

I don't know where to turn. I had an MRI done of my neck which revealed no problems there (it made my already bad auditory problems much worse though, and I wouldn't recommend a noisy MRI to other people with auditory problems).

I thought I would check in with this group again just to see if it is a common TMJ problem to have a truly neverending, continuous, severe tight scalp, temples and head. For you out there who have headaches, are they continuous and are they of this nature?

Another thing I should probably mention is that I haven't had TMJ for years and years. This did not come on gradually. It came on suddenly, with the headache preceding any jaw clicking whatsoever. Even my TMJ doc is surprised that my discs both dislocated so quickly and my headache evolved to this point practically overnight. I attribute this again to the severe muscular spasm the Klonopin withdrawal caused me. I have researched headaches, and the literature states that tension headaches are rarely severe or disabling, but let me tell you, this beast is very severe and very disabling. There is no way I can work right now, and I'm in constant pain.

I am sensitive to drugs, so I don't take any, and I don't want surgery because I fear the drugs and I have lost confidence in many physicians. Drugs and doctors did this to me in the first place. Yet, I can't imagine how I will survive in this state long-term.

Please help,

Looney