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?

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.

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.

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.

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.

A couple of questions about the palatal botox injections - what are the side effects and how sever are they? Is there any effect on speech or swallowing?

Thanks,
Nick

A couple of questions about the palatal botox injections - what are the side effects and how sever are they? Is there any effect on speech or swallowing?

Thanks,
Nick
hi nick,
they think i have pm as well, would you please share you symptoms with me.
i have it in the ears as well, not as bad in the r ear as i had the muscles cut in that one and i am going to have the left ear cut on the 15th.
i understand if the botox is not done right the palate would not close off the nasopharynx and when swallowing food or liquid could come out of the nose. also it can cause etd and tubes would be needed, the other is patulous e tube, where the tube stays open, a horrible condition. it can also change speech, but not for long.
how long have you had this? who dignosed it ?
im going to a botox specialist on the 9th and hope to learn more next week.
thanks, lib

lib,
Thanks for the information on the botox.
I have had the PM for 6 years. The symptoms are ear clicking in the left ear mostly, and a slight palate muscle pulling sensation. It was diagnosed by a ENT and neurologist. Also when I open my mouth, I can see the palate jerking up and down every few seconds in sync with the ear clicks. The clicking really only bothers me while trying to sleep, and I have been taking a Xanax tablet to help reduce the clicking sound at bedtime. What was the reason for having the ear muscles cut ?
Thanks,
Nick

hi nick,
they go in and sever the tensor tympani muscle, i have it in my ears as well, its horrific!
do you get popping, pressure, crackling and snapping in your ears?
have you tried any of the antiseizure drugs?
who would do botox for you?
there is a really good botox dr in new york.
do you know what caused your p.m.?
take care,
lib

lib,
I get a crackling/snapping noise from the eustachian tube opening, but no pain or pressure. For me, it was horrific at first, but is now mainly a nuisance. However, the sound is annoying when trying to fall asleep.
I think I tried phenytoin several years ago, but it wasn't effective and caused daytime drowsiness. The xanax at night is effective and wears off more quickly. The cause of my essential PM is unknown. More info on this condition can be found in an article online by Deuschl ("Symptomatic and essential palatal tremor").
I had discussed the botox several years ago with Dr. Flint at Johns Hopkins, but I never followed through with it. JHU is also closer to me than New York.
Nick

lib,
I get a crackling/snapping noise from the eustachian tube opening, but no pain or pressure. For me, it was horrific at first, but is now mainly a nuisance. However, the sound is annoying when trying to fall asleep.
I think I tried phenytoin several years ago, but it wasn't effective and caused daytime drowsiness. The xanax at night is effective and wears off more quickly. The cause of my essential PM is unknown. More info on this condition can be found in an article online by Deuschl ("Symptomatic and essential palatal tremor").
I had discussed the botox several years ago with Dr. Flint at Johns Hopkins, but I never followed through with it. JHU is also closer to me than New York.
Nick

hi nick,
where abouts are you, i have been to hopkins more times than i can count.
im in virginia, there is an ent at g.w. that does botox and i just went to nih, they do it too, but you have to be reffered in.
not sure of dr. flint but the neuro i saw at hopkins left a lot to be desired.
altho the ear doc i went to was wonderful there,
nih has suggested a emg to try to pinpoint the muscle thats responsible for this mess.
do you get any symptoms from burping by chance?
cant wait to here where your from!!
lib

lib,
I'm also in VA - Arlington. I also visited the GW ENT dept. about 6 yrs. ago and I went to the voice clinic where they used a nasal scope to examine the muscles twitching. They offered botox, but I did not follow through because it was like 30 units spread over several injection sites. This seemed too aggressive for me. Maybe I will try the NIH thing. So far I have been hesitant to try the botox because of the posible side effects.
Also, I don't have the symptom that you asked about. Do you have any good doctor names in DC for botox?
Thanks,
Nick

lib,
I'm also in VA - Arlington. I also visited the GW ENT dept. about 6 yrs. ago and I went to the voice clinic where they used a nasal scope to examine the muscles twitching. They offered botox, but I did not follow through because it was like 30 units spread over several injection sites. This seemed too aggressive for me. Maybe I will try the NIH thing. So far I have been hesitant to try the botox because of the posible side effects.
Also, I don't have the symptom that you asked about. Do you have any good doctor names in DC for botox?
Thanks,
Nick

hi nick,
well im going wed to g.w. to meet him, dr. belomawitz(not sure) ill get a better spelling wed. after i meet him i may go back up to nih for the emg.
whos your neuro here? i have a lot of ear symptoms, more myoclonus there than the palate.
im in springfield/burke....not far at all from you. and they say this is really rare, were practically neighbors.
how many drs did you see to get a diagnosis?
you would not believe my story.
any ideas what brought your pm on?
they think mine was a virus.
what do you do for work?
i work in a salon and this has really made life terrible.
do you ever get use to this?
thanks, lib

lib,
I also saw the doctor you mentioned years ago. He will probably do a scope and videotape it to identify the muscles. I believe he mentioned he sees a few patients each year with the PM. He tried a couple of medicines, but they did not really work for me. I saw around 6 doctors before being diagnosed with the PM. I haven't seen a doctor about this in a few years, so I don't have a good neuro to recommend. I want to see a neuro in Frederick MD named Dr. Toro because he was a coauthor of that article I mentioned.

There are a few possible causes for the PM for me. It was possibly a virus too, because I had some type of sinus infection at the time. Another possibilty could have been from carbon monoxide when I was pushing a car stuck in snow. Yet another doctor said it is related to low serotonin levels. For me, the PM varies throught the day. Most of the time actually, it is quiet. About a couple of hours a day max, I can hear the ear clicks. I guess everyone has different symptoms and severity. I got used to the ear clicks in the daytime, but at night I run an air cleaner to help drown out the clicking sound. I do computer work in an office environment. Let me know how the visits go.
Nick

lib,
I also saw the doctor you mentioned years ago. He will probably do a scope and videotape it to identify the muscles. I believe he mentioned he sees a few patients each year with the PM. He tried a couple of medicines, but they did not really work for me. I saw around 6 doctors before being diagnosed with the PM. I haven't seen a doctor about this in a few years, so I don't have a good neuro to recommend. I want to see a neuro in Frederick MD named Dr. Toro because he was a coauthor of that article I mentioned.

There are a few possible causes for the PM for me. It was possibly a virus too, because I had some type of sinus infection at the time. Another possibilty could have been from carbon monoxide when I was pushing a car stuck in snow. Yet another doctor said it is related to low serotonin levels. For me, the PM varies throught the day. Most of the time actually, it is quiet. About a couple of hours a day max, I can hear the ear clicks. I guess everyone has different symptoms and severity. I got used to the ear clicks in the daytime, but at night I run an air cleaner to help drown out the clicking sound. I do computer work in an office environment. Let me know how the visits go.
Nick

hi nick,
same deal here, after a sinus infection i started having horrible symptoms, they think it triggered an inner ear virus and then all this horror broke loose.
this dr toro sounds like a good idea.
dr richarson at gw is very good and very nice, very supportive and interested, he could refer you to nih as well. dr hallett is the authority on movement disorders so nih might be the place for you to go.
mine also varies and has no patteren....strange.
i have been told that it could possibly go away one day, have you heard this too?
i will certainly keep you posted.
lib

lib,
at the time I got the PM, I was congested and didn't notice the ear clicks much. Then I took an aerosol sinus spray which caused burning, and the ear clicking got worse. So, for a while I thought the spray brought it on.

According to the literature, PM can go away in some cases. This is from the Deuschl article which I found and photocopied from the Georgetown Med library. Some article I read also said PM is not as rare as people think - i.e. a lot of people might have PM with no symptoms because a slight palate movement will not cause ear clicks.

I had also seen that GW neuro years ago. I think he prescribed clonezapam, but this did not work for me. Different medicines work for some and not others.
How long have you had the symptoms?
Nick

lib,
at the time I got the PM, I was congested and didn't notice the ear clicks much. Then I took an aerosol sinus spray which caused burning, and the ear clicking got worse. So, for a while I thought the spray brought it on.

According to the literature, PM can go away in some cases. This is from the Deuschl article which I found and photocopied from the Georgetown Med library. Some article I read also said PM is not as rare as people think - i.e. a lot of people might have PM with no symptoms because a slight palate movement will not cause ear clicks.

I had also seen that GW neuro years ago. I think he prescribed clonezapam, but this did not work for me. Different medicines work for some and not others.
How long have you had the symptoms?
Nick
hi nick,
i have had this for over a year. wondering if i will ever get used to it, it has really devestated my life.
i wonder how many people this has resolved in.
how long did it take you to get used to this?
how old are you? i am 34 and i read it can start in the early 30s but i know a guy who is only 21.
take care, libby

lib,
I am late thirties now, and got the PM six years ago. The first few months were the hardest for me because it was a new and strange condition. After that, I found ways to manage it mentally. Some days I even forget about the PM. The medication helps, as does the air cleaner at night. During the day, I don't focus on the ear clicks much - they just sort of blend into the background. Fortunately, it is a treatable condition. Do you have a current method of treatment for the PM?
Nick

lib,
I am late thirties now, and got the PM six years ago. The first few months were the hardest for me because it was a new and strange condition. After that, I found ways to manage it mentally. Some days I even forget about the PM. The medication helps, as does the air cleaner at night. During the day, I don't focus on the ear clicks much - they just sort of blend into the background. Fortunately, it is a treatable condition. Do you have a current method of treatment for the PM?
Nick
hi nick,
no i have no treatment, im stuck, what are you taking?
i am hardly getting by.really what do i do?
how do you manage this mentally?i am at the end of my rope...
lib

lib,
I use xanax .25 (or less) before bedtime to suppress the ear clicks, plus the air cleaner to have a sound to focus on other than any clicks that appear. The night symptoms affected me the most initially because I could not fall/stay asleep from the sound. For the daytime clicks, I found that the less I thought about them, the better I could handle them - this even seemed to reduce the clicks. I just focus on whatever task I am doing. During the daytime, there is usually noise everywhere anyway - the clicks are just another noise for me. I think my brain adapts also - intially the clicks were something new and bothersome. Now that they are not new, the brain seems to ignore them somewhat.
Nick

hi nick,
i find i do better in noise as well, i get clicks from my mouth and behind my nose, the ears pop a crack all the time, its the popping i cant stand, but it too has simmered down a little.
you have given me hope and i think you are right about adapting, ot may come over time. i have tinnitus and that bothrs me some at night, but no constant clicks, just snaps and pops when i swallow.
if i blow my nose that creates a bunch of noise in my ears and fullness, the e tube is definatly involved.
hope we find a solution soon.
i do notice alcohol helps with the spasms, and i read that it does supress myoclonus....heres a drink to that! ha
lib

Hi,
I am responding to everyone on the board for Palatal Myoclonus/botox. This is the first web site I have found where I finally feel there is hope for those of us suffering from PM. I just was diagnosed 6 months ago. I have had the condition for over 12 years, it started in my teens. Before I finally was diagnosed properly from a nuerologist in NYC, I had 3 surgerys for tmj, because FL Dr.s 3 of them said this was the problem, come to find out it isn't, now I know what it is I have high hopes of getting some relief through Botox, or perhaps once I get to the right ENT, now that I finally have the right diagnosis from the nuero that they will say it is the ear muscle?? Does anyone know of a GREAT Dr. who treats this. I live in FL but I am willing to travel to get the proper treatment. Thank you for any advice.
Sincerely,
TFOSTERG

Hi,
I am responding to everyone on the board for Palatal Myoclonus/botox. This is the first web site I have found where I finally feel there is hope for those of us suffering from PM. I just was diagnosed 6 months ago. I have had the condition for over 12 years, it started in my teens. Before I finally was diagnosed properly from a nuerologist in NYC, I had 3 surgerys for tmj, because FL Dr.s 3 of them said this was the problem, come to find out it isn't, now I know what it is I have high hopes of getting some relief through Botox, or perhaps once I get to the right ENT, now that I finally have the right diagnosis from the nuero that they will say it is the ear muscle?? Does anyone know of a GREAT Dr. who treats this. I live in FL but I am willing to travel to get the proper treatment. Thank you for any advice.
Sincerely,
TFOSTERG

i know there are a few drs, one in wash dc and one in ny for botox, several i know have been properly dxed with middle ear myoclonus in richmond by dr sismanis.
i dont recall your ear symptoms other than the clicking are there any other ear symptoms?
lib

To all fellow sufferers of this horrible condition. I suffered with tensor tynmpani myoclonus since my pre teens and saw dr after dr until finally, when I was 25, a miracle happened. I found a dr who correctly diagnosed me and performed surgery to sever the muscle. The surgery was 100 percent effective and I've had no recurrence. I thank God regularly that I was able to find relief from that incessent typewriter in my ear that ppl thought I was "imaging", but was driving me CRAZY. Here is the name:

[removed]

The surgery is still considered very experimental even though I had it in the early 90's. I cannot guarantee that he still performs it but it may be worth a try.

I hope each and every one of you find some relief -- good luck!!

To all fellow sufferers of this horrible condition. I suffered with tensor tynmpani myoclonus since my pre teens and saw dr after dr until finally, when I was 25, a miracle happened. I found a dr who correctly diagnosed me and performed surgery to sever the muscle. The surgery was 100 percent effective and I've had no recurrence. I thank God regularly that I was able to find relief from that incessent typewriter in my ear that ppl thought I was "imaging", but was driving me CRAZY. Here is the name:


The surgery is still considered very experimental even though I had it in the early 90's. I cannot guarantee that he still performs it but it may be worth a try.

I hope each and every one of you find some relief -- good luck!!

hi,
wow!
im here in virginia, saw many docs in dc and on the east coast, i had the muscles severed in richmond by dr sismanis.....it helped a lot, i also have it in the e tube as well.
glad you found relief!

i know there are a few drs, one in wash dc and one in ny for botox, several i know have been properly dxed with middle ear myoclonus in richmond by dr sismanis.
i dont recall your ear symptoms other than the clicking are there any other ear symptoms?
lib
Hi Lib, thank you so much for writing back!!!!, I was checking every day then I went away and now I am back home and thank you for the response. In return to your response, I really believe I have PM , but the ear muscle maybe a factor as well. I actually see my PM contracting in my throat, and the nuero in NYC suggested BOTOX, but couln't refer a Dr. he knew to treat it. The diagnosis was at Colombia hospital in NYC, but I can't find a Dr to treat this disorder, please if you have any names can you send them to me, my brother is in MEd school at Georgetown Univ., so I could come to DC to get treatment if needed. I live in FL, can't seem to find a Dr. even at Jackson Memorial in Miami, and since the Botox is risky, even cutting of the ear muscle is as weel I want tot got to the best, can you help?? Thanks!!!

Hi Lib, thank you so much for writing back!!!!, I was checking every day then I went away and now I am back home and thank you for the response. In return to your response, I really believe I have PM , but the ear muscle maybe a factor as well. I actually see my PM contracting in my throat, and the nuero in NYC suggested BOTOX, but couln't refer a Dr. he knew to treat it. The diagnosis was at Colombia hospital in NYC, but I can't find a Dr to treat this disorder, please if you have any names can you send them to me, my brother is in MEd school at Georgetown Univ., so I could come to DC to get treatment if needed. I live in FL, can't seem to find a Dr. even at Jackson Memorial in Miami, and since the Botox is risky, even cutting of the ear muscle is as weel I want tot got to the best, can you help?? Thanks!!!
hi tami,
i will get the drs names to you.
talk soon,
lib

Hi lib-thanks I will wait to hear from you I was told by jackson memorial Hospital in Miami fl that they have no one to traet PM, thanks again for your help.
TFOSTERG

hi,
i sent the drs names to you, did you not get them?
lib

I am on the West Coast and have a sister who has been suffering from Palatal Myoclonus for over two years. She has been to tons of neurologists but all they've done is put her on meds that have made her exhausted. The first neurologist scared her away from looking into botox telling her she could end up on a feeding tube. Sounds like a few of you have had good experiences with Botox. Would you mind sharing your Botox Doctor's name? Doesn't matter where they are located. We are willing to travel for a good doctor that can give her some relief. Any suggesting would be greatly appreciated.

Thanks,
Beth

I am on the West Coast and have a sister who has been suffering from Palatal Myoclonus for over two years. She has been to tons of neurologists but all they've done is put her on meds that have made her exhausted. The first neurologist scared her away from looking into botox telling her she could end up on a feeding tube. Sounds like a few of you have had good experiences with Botox. Would you mind sharing your Botox Doctor's name? Doesn't matter where they are located. We are willing to travel for a good doctor that can give her some relief. Any suggesting would be greatly appreciated.

Thanks,
Beth
hi beth,
the drs at n.i.h. might be able to help, it is hard to find a botox dr for palatal and if done wrong could make things worse.
what are your sisters symptoms and do you know what caused it?
n.i.h. is in bethesda md, you would need a nero to refer her in to dr mark hallett....they are great there.
lib

Thanks Lib. :) I'll forward her the information.

Not sure what caused it for her. Possibly a virus. She was having ear infections, clogged ears, ear pain, sinus problems, etc right before it started. She has constant clicking anywhere from 30 to 60 clicks per minute. It's been going on for about 2 and a half years and she has found very little relief from the drugs. She's currently on Norontin (sp?) and it makes her very lathargic and has caused weight gain.

Have you had the Botox treatment? What are your symptoms and what has your treatment been? Has your treatment been successful?

Beth :)

hi beth,
can they see her palate move? it is possible she could have it in the middle ears. i had the tendons in the middle ear cut and it has helped a lot.
no drugs and i have not tried botox because they do not see the palate move, they could try to botox my eustachian tube muscle but i dont have the nerve to try that.
where is your sister located?
lib

You can actually see the palate move in her case. You can see it spasming. She lives outside San Francisco and has seen a lot of neurologists in the area. Looking into the botox is new and she hasn't found a doctor in the area yet. Glad to hear your treatment has worked without drugs. The side effects can be pretty bad.

You can actually see the palate move in her case. You can see it spasming. She lives outside San Francisco and has seen a lot of neurologists in the area. Looking into the botox is new and she hasn't found a doctor in the area yet. Glad to hear your treatment has worked without drugs. The side effects can be pretty bad.
yes those drugs can be very nasty. she should probably look into nih, there are not many that do botox, but the fact they can see her palate move is good as they will know where to inject.
there is also a dr jancovic in texas, i have never seen him but i hear he does botox....hes at baylor. please keep me posted if she tries botox, i may try it too if it helps her.
lib

Thanks Lib. I'll let you know how it works out.
Cheers,
Beth

Hi, my name is Kirsty (29 years old) and I have palatal myclonus for a year. It used to start clicking and popping later in the day but know it goes all ay. It is very loud. It was very painful to start with, especially behind the ears. The pressure is intense as well. I have been at my wits end. Every time I move my neck or touch parts of my head it sets it off. I have had an MRI which is clear and I have tried a few different drugs including Epilim and Lyrica pregabalin with no success. I am writing this in the hope that someone can give me some advice. I have also tried having botox injections into the palate. I have done this twice and am going to try again because it seems the neuologist hasn't hit the spot. I am hoping that someone has had successful surgery( and if so what is it) or treatment of some sort that they can tell me about. It seems I am limited because I am in Tasmania, Australia, but I am willing to travel. Please let me know if you have a success story! or any advice. Cheers Kirsty

Hi,
My sister-in-law is looking into new doctors right now. She is located about 40 miles outside San Francisco, CA. Lib had recommended a doctor in Washington DC and another in Texas. She's trying to get in to see the Texas Doctor now. Hopefully I'll have an update in the next month.

Anyone else out there have botox injections that worked or a medication that is working?

-Beth

Hi,
My sister-in-law is looking into new doctors right now. She is located about 40 miles outside San Francisco, CA. Lib had recommended a doctor in Washington DC and another in Texas. She's trying to get in to see the Texas Doctor now. Hopefully I'll have an update in the next month.

Anyone else out there have botox injections that worked or a medication that is working?

-Beth
cant wait to hear how her appointment goes....
lib

Hi Kirsty. I am so GLAD I found your post. I'm an Aussie too from Melbourne, Victoria. Only today I was correctly diagnosed with Palatal Myoclonus from a very good ENT specialist. I have literally SUFFERED with this condition for the past 5 years, not knowing what it was. I went from having an MRI on the brain, to a Catscan on the sinuses (and the brain again) and a flexible endoscopy within 3 years and not one Dr could help me. The last ENT specialist I saw in Nov 2005 mis-diagnosed me as having Neuralgia. I was sent to a Neurologist who prescribed me an antidepressant called ENDEP which had terrible side effect without even helping my symptoms. Like you, it is the intense pressure which is driving me CRAZY. Sometimes, I just feel like putting a needle in there to pop the pressure. It is absolutely excruciating at times. Mine is stricly on the left side. I can deal with the clicking / popping sounds but not that pressure behind my eye ! Anyhow, I'll be seeing another ENT specialist in the coming weeks who may consider botox. If you don't mind, please email me directly at REMOVED to talk about it in more detail. I really would like to share this experience with someone closer to home !





Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board.

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what are the symptpoms you all are having with palatal myoclonus?
i have it in my ears and eustacian tube, but no one wants to do botox on the e tube.

Please read and follow the posting rules.

Hi Unicorn,
Good to hear there is someone else in Australia trying to find treatment. I have had three tries at botox with know success but the neurologist that has been doing the injections has had success with another person with palate myoclonus. He may be able to help you. The neurologist was Dr Darveniza from St Vincents hospital in Sydney. I myself need to find an ENT in Australia that has successfully operated on a palatal myoclonus patient, or find an ENT that does botox, or keep going back to Sydney. Anyway I would like to know how you get on with the ENT that you are seeing in Melbourne. I can’t believe that you have put up this for so long. Good luck.

Hello Lib,
I was wondering how you are feeling after your PET surgery? Is it completely gone? Thanks
K

Hi Unicorn and Kirsty1976,
I was really pleased to see your posts as I thought I was the only one in Australia suffering these unusual symptoms. Mine only came on about 2 1/2 weeks ago but they are just maddening. I get ear popping when swallowing, burping and yawning but also when there is a loud noise my right ear and also I have had two episodes of ear clicking which lasted over 12 hours. My Sydney ENT didn't offer any help. Can you help me with an ENT anywhere is Australia who can help diagnose my disorder. It would be greatly appreciated for any feedback. How is your treatment going? Thanks guys

Hi Unicorn and Kirsty1976,
I was really pleased to see your posts as I thought I was the only one in Australia suffering these unusual symptoms. Mine only came on about 2 1/2 weeks ago but they are just maddening. I get ear popping when swallowing, burping and yawning but also when there is a loud noise my right ear and also I have had two episodes of ear clicking which lasted over 12 hours. My Sydney ENT didn't offer any help. Can you help me with an ENT anywhere is Australia who can help diagnose my disorder. It would be greatly appreciated for any feedback. How is your treatment going? Thanks guys
natchat,
your symptoms sound like you have myoclonus in the ear, look up stapedial myoclonus, tensor tympani syndrome, and middle ear myoclonus....it can be in the e tube as well.
any idea as to what could have caused yours?
lib

Thanks so much for your response Lib. I have been so distressed since this started that I have made myself quite sick. To make matters worse my hearing sensitivity has intensed to the point where I am regularly stessed in the office and at home due to irritating sounds. I have read up on some of the posts here and I understand you have had successful surgery. I would be willing to travel to the US if required if I can not get help here. Can you help me out with the name of your Doctors. Do I contact you directly by email - I am not sure what ifo. can be posted on this board. Any help would be greatly appreciated. Thanks again!

hi natchat,
my dr is in richmond virginia, his name is dr sismanis, hes excellent!!!
we can not give out our personal email on this board.
i am sure if you look on other boards youll find more info on this disorder.
my surgery helped a ton. the sound sensitivity is from the myoclonus, this disorder will drive you nuts....but its benign, it can not hurt you or your hearing.
lib

Do I contact you directly by email - I am not sure what ifo. can be posted on this board.

Please read and follow the posting rules as you agreed to do when you registered for free Healthboards.com membership. Do not ask members to interpret the rules for you. If you have questions please email the administrator.

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apologies - I should have read the posting rules properly. Lib, sorry - just one more question. Did the surgery help with the hyperacusis or did you have treatment for this. It is just as maddening as the throbbing sounds.

Thanks again!

nope...no treatment as mine was all related....not real hyperacusis.....that is when all sounds are way too loud......not the same....do a search on my name....that will lead you to other info...
lib

Hi natchat,
Sorry I haven't checked this board for along time. I hope you have managed to find an ENT that has given you the right diagonise. I got mine from an ENT in Launceston, Tasmania, but I have also seen an ENT at Cabrini in Melbourne called Dr Fudge. I have had know success with any tratment as to date. I am now on Clonazepam for it. I hope you have more success then me. It seens that there isn't an ENT in Australia that is willing to touch me. I may have to go overseas. Let me know if you have or have had any luck.
Thanks kirsty1976

Hi-I Just recieved botox for palatal myoclonus, and they went thru my nose, I noticed some people on this site had botox and it worked but they had it directly into the palate. Does anyone know a Dr. anywhere that does these injections into the palate, I am willing to travel.
Thank you desperate