Facial/temporal and ear spasms, tinnitus, vertigo, pain. Please help

I forgot to mention I’ve had an MRI and CT scan, both were clear.

I’ve tried every migraine medicine. The only meds that have helped so far were muscle relaxers and Ativan.

I have similar symptoms.

Was your MRI with contrast? An acoustic neuroma would be ruled out with that.

Klonopin, similar to Ativan, and Baclofen, a muscle relaxant, help me some, especially Klonopin, but since it is a benzodiazepine and addictive, I use it sparingly.

I was just prescribed gabapentin which might help you. I have not tried it yet.

I have diagnoses of neck stenosis and spinal cord damage, trigeminal and occipital neuralgia, and several "central " issues meaning from the brain (central vertigo, central migraine, pain centralization syndrome) and vestibular migraines.

I also went to ENT, neuro, and others. I have two autoimmune disorders and considered inflammation.

Basically, I have come to the idea that the brain, neck, auditory system, facial nerves, are all connected in complicated ways and medicine just cannot sort it out for me. I am trying to address each component of what is no doubt a complicated interaction.

I have learned to accommodate tinnitus but have hyperacusis with pain (noxacusis) in which certain frequencies trigger the head and facial pain and numbness. If you go on Tinnitus Talk or the Hyperacusis Forum there is a list of audiologists who might be able to help you with at least some of your issues. Otherwise, medications, Reiki, acupuncture and I am doing tai chi a lot.

Have you gotten any better over time? I’m scared.

I have improved. A lot of symptoms are coming from the brain or neck not the ear. Sometimes my pain goes all the way down my left side and my left arm gets shorter than the right. Triggers are noise, weather changes and a lot of mysteries.

I forgot to mention using topicals. Patches and creams etc. Capcaisin, lidocaine, Ben Gay, BioFreeze and massage. Have you tried PT?

There is hope. See an audiologist skilled in tinnitus. There may be retraining that will help you. I can't do those programs but have learned to accommodate the varying levels and kinds of tinnitus over time.

Thank you. How long did it take to improve? Sounds hurt right now so idk if I should do that.

You didn't mention sounds hurting before. In that case we are even more similar! With a 4 year old it is hard to have quiet....

Omg I have a 4 year old too!!!

Did your tinnitus constantly change and seem unstable? It’s driving me crazy. Every 2-3 days new sounds appear. I don’t think I can just sit in silence anymore or I’ll go crazy. But I don’t want to worsen it.

I have "reactive tinnitus" which means it changes with noises. I think congestion, certain medications and weather changes may affect mine too, but not sure.

In my experience it does settle down. Four months is relatively recent actually. I remember feeling desperate but now it is most noticeable when I talk or write about it- like now.

I used to be afraid of noises (leaf blowers) and bought ear plugs and noise cancelling ear muffs. But now it isn't the tinnitus that causes me to fear noise, it is pain and numbness on the left side of my face. It can progress to vertigo.

My tinnitus goes up and down and I try to maintain that it will go back down when it has gone up.

I am nervous about an MRI. Doctor wanted to make sure I did not have an acoustic neuroma. I had a hearing test and generally acoustic neuroma patients have hearing loss on one side. Mine was both sides. Have you had a hearing test? Do you think there was a triggering event for you?

ps I was referring to your 4 year-old! My kids are grown! I do have to ask them to lower their voices though 🙂

Yes I get vertigo too. The tinnitus changes really scare me a lot. Mine is both sides as well.

I wouldn’t do an mri. Too loud even with protection.