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@MartyJ We are all on the facebook group: https://www.facebook.com/groups/3477917998900326/ I think the things that have helped me are a night guard, prozac (not sure on this because it can actually contribute to teeth clenching) robinul forte, histamine phosphate, xanax, klonopin, and therapy.

Hello everyone, I wanted to give an update for old and new members. I have had only mild thumping (1-2 thumps every few days or so) for the past month and a half. I previously would have thumping episodes for 24-72 hours since October 2018. I find that my thumping now is triggered by diet...

Have you heard of patulous Eustachian tube? I think it can cause ear fullness and strange reactions to from talking and maybe ear ringing, since the tubes stay open when they shouldn’t. I have it, but I have more of a thumping sensation after burping.

Who was your doctor in NYC?

@Sarah101 Mine may be improving slightly. I've noticed the episodes have less thumping (there is more space between each thump) and that if an episode starts, it's lasting 1-2 days intermittently instead of 3-4 constant. I also finally found a doctor who has heard of thumping triggered by...

@Sarah101 Mine is the same :( I don't really know how I am coping. Just trying to take one day at a time. I started wearing a mouth guard and I am going to physical therapy to see if that helps. How is yours? Thinking of you too.

Has anyone had the surgery or tried botox? Or know of anyone who has? Thanks, Aimee

@Sarah101 Where do you live? So you can't see an ENT until June? Could you try seeing a neurologist? Or even a dentist about TMJD? In my experience, they are not that sedative. I am still working, although it's difficult due to the thumping, not the muscle relaxer. I had no side effects on the...

@Sarah101 I’m so sorry you are dealing with this too. I know how awful it is. Soma (muscle relaxer) has helped me the most. What doctors have you been to?

@Sarah101 I have tried flexeril, klonopin, and soma. All three helped somewhat, but the thumps always came back eventually. I do not have tinnitus that I am aware of, I am still trying to rule out pulsatile tinnitus since my thumping is sometimes in sync with my heart beat, but not always. Mine...

@Sarah101 mine will thump consistently for a few days and then stop for a day or so. Not sure why. I’ve seen some improvement taking muscle relaxers but it will still start again. Is yours in sync with your heart beat?

@Sarah101 no, still trying to find answers and treatment. When did yours start? What are your symptoms?

@ZZZK have you ever tried acid reflux meds?

@Oswald @Jessica Moore Hello ladies, I similarly suddenly starting experiencing thumps in my left ear (mostly). They are also triggered by yawns/ burps/ hiccups or sometimes if I just move my jaw or head. It's maddening-- sometimes mine go on for days. Have you all found any relief? I am also...

@cheyennes I also get thumping, but mine is triggered more by burping/hiccuping/yawning. Sometimes it just starts out of nowhere. It's maddening. Let me know if you ever find anything that helps, and I will do the same!

@ZZZK thank you for your reply. What do you mean by fasting most of the day? I'm getting an MRI done Friday to rule out any other causes. Mine has still been relentless. Have any of you tried acupuncture or a chiropractor? Thanks again, Aimee

@ZZZK Mine started 3 weeks ago. Looking back, I think I had a mini episode in July 2018. I had just flown to Philly (from Dallas) and I noticed severe dizziness/vertigo/headaches for 3 days (which is not usual for me) as well as thumping/muffling in my ears. But, the thumping was brief and my...

Recently diagnosed and going crazy. How long did it take to notice the effects of not drinking caffeine @steffatkings?

anybody find anything that has helped the myoclonus? It's driving me nuts and I can barely do life.

has anyone found anything that helps? I have been recently diagnosed and am struggling to keep up with normal life.

Has anyone found any treatment? Recently diagnosed and really struggling to keep up with normal life.