@Codaz
Interesting to read that you've gone through most of the steps I've gone through. I live near Amsterdam and although I have tinnitus for seven years now, it got really worse and spread to my other ear about a year ago. I went to several ENTs and Erasmus' "Tinnitus department", what a joke. All said the same thing: "sorry we can't do anything for you, it is not treatable". All denied the fact that tinnitus could be caused by TMD or other somatic disorders. At the Erasmus the ENT literally said the following phrase: "the articles supporting tinnitus caused by TMD are wrong and they do not use large enough control groups". I even said I think I have a trigeminal nerve hyperactivity because a lot of my symptoms (described bellow) indicate that, they just shrugged their shoulder "Yeah, coulde be, I can't help you with that."
@Codaz & Other members
Anywho, enough complaining. Quick summary regarding my case: I obtained tinnitus 7 years ago by minor acute hearing damage. The 6 kHz tonal (pure tone) tinnitus never bothered me. I started weightlifitng & fitness 5 years ago and went from training 2-3x a week to 7-8x a week several months before my tinnitus intesified. I woke up with a sudden screeching noise (ruis) not tonale anymore and I clocked it at 13 kHz. Several days later it spread to the back of my head and my right ear, it still fluctuates badly. Two weeks later I got numerous other symptoms the main ones being:
-Burning sensation at the back of my head (several minutes a day)
-Throbbing sound in my ear (upon sleeping or facial massage)
-Ear pressure (several minutes every hour)
-Facial & jaw pressure (several minutes every hour)
-Globus sensation (several hours every day)
-Warmth/cold sensation in ears (several minutes every day)
-Neck– and upper back pain (several minutes every hour)
-Throat ache (several hours a week)
-Pain & menthol sensation in lungs (several hours every day)
-Random muscle twitches (numerous times a day, especially facial area)
-Very sensitive teeth (especially cold water is a killer)
I quickly noticed that massaging the back of my head made my tinnitus far less intense, also because I am a medicinal chemistry student I have access to scientific literature regarding tinnitus. Based on my findings, I went to the following specialists: Jaw specialist, TMD specialist, massage specialist, chiropractor, 4x ENTs, osteopath, physiotherapist, orthodontist, manual therapist & neurologist. I had an MRI, CT, tympanogram and ABR. Unfortunately nothing really helped so far, and no clear diagnosis has been made. I also went to Hilversum to apply for the new Neuromodulation therapy, however this therapy is not particulary meant for non-tonal tinnitus (meaning pure tone) nor tinnitus above 10 kHz. It has promising overall results however, maybe it could help someone here.
I found a study indicating that Clonazepam could reduce tinnitus temporary or permanent so I have confinced my doctor to prescribe me the drug. I've been taking it for exactly 20 days now (0.5 mg before sleep) and so far it has not really made my tinnitus less intense. On the other hand, I've started trigger point therapy in the form of dry needling and that is in fact starting to change my tinnitus a bit. I know it's the therapy and not the drug because my tinnitus is signficantly different and sometimes less intense directly after the therapy and stays that way for several hours to days. Maybe something to look into. Within a month I will start TMD therapy, meaning I will start wearing a night splint just in case and next year I will start orthomanual therapy. Even if you do not have bruxism the splint can still help relaxe you're jaw muscles.
I'll keep you guys updated. Hopefully, my story will help someone here.