Palatal Myoclonus and Botox - Inner Ear Disorders Message Board

vernon123 · 09-04-2001, 12:48 PM

My ENT believes that I have a strange, intermittent form of palatal myoclonus. I also have eustachian tube dysfunction in my left ear. Periodically, I endure these hideous "torture sessions" where I feel a very annoying muscle spasm or thumping sensation in my left ear. This happens from once ever five seconds to three minutes. The myoclonic attacks can continue from anywhere to a 1/2 hour to over an hour. Sometimes, I feel a maddening muscle spasm or thump in my right ear as well! I have a scheduled botox injection this September 21st. The other alternative is surgery to cut the offending muscle in the middle ear. Anyone out there who has had this excruciating experience. Does botox help or should I be prepared for surgery and possible loss of hearing?

anthony horn · 09-04-2001, 01:34 PM

hello nathan, thanks for replying to my posted message,much appreatiated mate,sorry i havent got back to you untill now,had a bad head so havent checked the website (really bad head over the weekend,alot of alcohol drunk as we beat the germans in the football 5-1,but thats another matter!)I guess you know i had butox injections on my palate,these do not hurt and if it is palatal myoclonus you are suffering from they should do the trick as the affending muscle cannot contract,the only sideaffect which i am sure you are aware of is a slight difference in your speach,this will wear off after about 3 months,which all going well you should have the injections again,if it has worked.also if it hasent worked your surgeon should try again as i think they have to get the ballance right as for the amount of butox they use. as for the opperation i do not know anything about (sorry) but would be greatfull if you could name and describe the op as i would like to discusss this with my doctor,also would you please tell me if you suffer from constant head pain as well,mine is like my head is being squeezed!,and if so is this what you take the medication you mentioned before for?.
best wishes and goodluck,
anthony.

vernon123 · 09-05-2001, 07:04 AM

I do not suffer from headaches. Only the maddening discomfort of eustachian tube dysfunction and the muscle spasms "torture attacks" in my left ear. I'm really going crazy from this. I shouldn't be complaining to you because it sounds like you are having such a horrible time. The operation I mentioned involves cutting a muscle in the middle ear if it spasms, causing that horrible thumping sensation. My ENT believes me to be suffering from a strange form of this condition unlike the two other I saw who told me that I was overeacting and that there was nothing really wrong. My ENT told me that there is a slight risk of hearing loss, but he can "correct this" if it occurs. I am now willing to try anything to get me out of this condition. Even if I risk losing hearing in my left ear. People enjoyed mono music up to the 1950's. I could still enjoy my Mp3, CD and LP collection after a long period of adjustment. I just want these random muscle spasms and pressure changes in my ear to end. Sorry to sound so glum, but that's how I feel right now. Good luck in your battle to get better.

anthony horn · 09-05-2001, 04:32 PM

nathan, i am sorry to hear that you are suffering so bad,which i am too, (no more,no less than yourself),i am glad that you have found a ent surgeon who sounds like he/she will do everything they can to help you, as to the other two ent surgeons who said that you were over-reacting,remember this- even though they may have been studying their feild of work for many years,they more than likely have never came accross a pattient like yourself,so they have no idea at all want pain,stress,social insacuraty and well being you feel at all,so dont feel "guilty" as this is obviously a serious condition that is affecting your life. once again if the botox doesnt work (make sure you have at least a couple of tries at this),it sounds like the operation will work in your case, (cutting the affending muscle) so dont feel so down-harted mate,i know you probably hear that every other day!,because it sounds like you are lucky enough to find a ent surgeon who understands and cares.
good luck to you,
anthony.

SLBonifazi · 03-14-2003, 12:45 PM

I was diagnosed with Palatal Myoclonus about 6 years ago. I receive Botox injections in the roof of my mouth (my soft palate) whenever I hear the clicking in my ears. The clicking will begin quietly, but then it gets louder, audible to other people. The Botox injections work. About 5-6 years ago, a received the shots every three to four months. Now I receive them about once a year. When the clicking comes back, it will not stop unless I get the Botox injections. The side effects last about a month, but it is worth it.