nathan,
please if you are out there, let us know how you are, did the pet ever redevelop? how was the surgery? thanks, lib

It has been two years since I got Dr. Poe's injection. Once in a while, I get an open feeling like the inner part of the ET is trying to open the injected part. Sometimes, I get an annoying pop, but no PETD. Now, I am suffering horribly from eustachian tube muscle spasms. It is even worse than PETD. When I get a "thumping sensation", it is so maddening that I feel like screaming my head off, and head butting a wall. I am really desperate. I have seen three ENTS since the thumping came back. All three have told me to "learn to live with it.". That is impossible. All I want is for it to go away and leave me alone. I have gotten a referral to Dr. Andre Lamothe at The Ottawa Civic Hospital. He does botox injections for palatal and ET muscle spasms. Hopefully he can help me resume my life. I am doing ok in school, but doubt I can work well because the thumping is really upsetting me. If Dr. Lamothe can't help me, I will go to Dr. Dennis Poe in Boston. He believes a botox injection directly to the eustachian tubes will help. I hope that this maddening thumping can be destroyed. The problem with the Botox is it can cause PETD again. Dr. Poe believes he can correct that if it happens. The problem is, it will cost thousands to get help from Dr. Poe. There is a good chance Ontario Health Insurance would cover out of country treatment. When I lived in Quebec, it was finally covered but only after a lengthly appeal from my parents. (they paid half of the injection cost). I really hope that my ear problem will finally improve to the point I can function like a normal human being. I hope you are doing well. Nathan.

nathan,
it me libby, same from our mails. you did not tell me about the other dr, but i would go to poe, let him do the injections, if the pet returns what will he correct it wit. hang in there vit sounds like you are getting closer to a solution.lib

Nathan and others:

I am -- sorry to say -- one of your brothers in body, mind and spirit.

I have suffered from an incredibly torturous middle ear muscle spasm for 5 years in my left ear. Its a random twitch that basically is noiseless but can be FELT behind the eardrum. It occurs like clockwork almost every single night, after 4 to 6 hours of sleep. It can also happen during the day, but much less frequently. Episodes last from a few seconds to a few minutes to 3 or 4 hours. There is one significant trigger: a YAWN. the deeper the yawn, the more the muscle is pulled on, and it tweaks it and the spasm begins. It has caused serious sleep problems, and mental anguish. I have literally hit myself in the head with my fist to try and "get to it."

I have analyzed everything ... diet, stress, injury, etc etc ... been to doctors, ENTs, acupuncturists, massage therapists, more etc etc. Recently tried Chinese medicine (herbs) -- nothing helped.

Tired various sedatives, couldn't take it anymore. In June, 2004 I went to the Michigan Ear Institute and had the 2 tendons severed (tympanis tensor and stapedius tendons). For two blessed weeks, I had no twitch. Then, over the next month, it came back. Now its about the same as before the surgery. I also started having the twitch in my Right Ear! Its unbelievable. I am healthy, eat right, exercise, and am an educated professional. The amount of suffering is indescribable to anyone who has not experienced it. The closest thing I can think of is the Chinese Water Torture (drop of water on a POW's head, randomly, over many hours, causes prisoners to go insane).

I wanted Botox ... the world-renowned experts advised against it. Said it could paralyze eustachian tube, cause various problems with food and other issues.

When I read about Nathan's experiences, I could relate perfectly! Sometimes I get a little relief with B-complex and magnesium, sometimes it doesn't work. I've used clonazdium (spelling?) and it seems to cause me to be lethargic.

I have considered traveling to China or India in search of something, someone, who may have indigenous plant knowledge, because this is truly life-wrecking.

Any comments from anyone? Experiences similiar or disimilar?

Nathan and others:

I am -- sorry to say -- one of your brothers in body, mind and spirit.

I have suffered from an incredibly torturous middle ear muscle spasm for 5 years in my left ear. Its a random twitch that basically is noiseless but can be FELT behind the eardrum. It occurs like clockwork almost every single night, after 4 to 6 hours of sleep. It can also happen during the day, but much less frequently. Episodes last from a few seconds to a few minutes to 3 or 4 hours. There is one significant trigger: a YAWN. the deeper the yawn, the more the muscle is pulled on, and it tweaks it and the spasm begins. It has caused serious sleep problems, and mental anguish. I have literally hit myself in the head with my fist to try and "get to it."

I have analyzed everything ... diet, stress, injury, etc etc ... been to doctors, ENTs, acupuncturists, massage therapists, more etc etc. Recently tried Chinese medicine (herbs) -- nothing helped.

Tired various sedatives, couldn't take it anymore. In June, 2004 I went to the Michigan Ear Institute and had the 2 tendons severed (tympanis tensor and stapedius tendons). For two blessed weeks, I had no twitch. Then, over the next month, it came back. Now its about the same as before the surgery. I also started having the twitch in my Right Ear! Its unbelievable. I am healthy, eat right, exercise, and am an educated professional. The amount of suffering is indescribable to anyone who has not experienced it. The closest thing I can think of is the Chinese Water Torture (drop of water on a POW's head, randomly, over many hours, causes prisoners to go insane).

I wanted Botox ... the world-renowned experts advised against it. Said it could paralyze eustachian tube, cause various problems with food and other issues.

When I read about Nathan's experiences, I could relate perfectly! Sometimes I get a little relief with B-complex and magnesium, sometimes it doesn't work. I've used clonazdium (spelling?) and it seems to cause me to be lethargic.

I have considered traveling to China or India in search of something, someone, who may have indigenous plant knowledge, because this is truly life-wrecking.

Any comments from anyone? Experiences similiar or disimilar?
hi aton,
how was the surgery and what did they tell you the risks were?
did you feel your eardrum moving when you talked or did the ears pop and snap?
i get the thumping and a lot more, yes its horrific.
did you contact dr blitzner in ny? he is a botox top specialist.
who did you contact?
it sounds like the e tube is spasming, did you ever have other symptoms?
did you do both ears or just one.
i am currently trying to decide if i want the surgery, i have been told antiseizure drugs will help this to did you try them?
lib

Sorry to hear you are suffering so much Aton. I now the feeling well. When I get the thumping, I feel like pounding my head against the wall. In act, once I head butted a hole in the wall with the hard part of my head. It sounds exactly what I went through. I had the middle ear muscles cut but the thumping remained. It is probably the eustachian tube muscle. I would rather have my mouth and eustachian tube paralyzed by botox rather than going through this nonsense. I hope you find help. Nathan.

Aton,

i have a similar symptom. when i yawn or burp i get a single, violent spasm/constriction in my ears. but lately i have experienced a series of thumps (it has only lasted a few seconds so far, but i don't see why it wouldn't be progressing to long lasting episodes.) the series of thumps have not been triggered by a yawn or anything else, they happened in silence. i have prescriptions for both trileptal (an anti-seizure) and klonopin (tranquilizer) but am afraid to take them because i believe that drugs may have caused my symptoms to begin 2 1/2 years ago. as i'm typing now i am noticing a minor thud or tension in the ear that had two episodes yesterday in response to the clicking of the keyboard. does it wake you up from your sleep? is having the tendons severed the same thing as having the muscles severed? you said: "I have considered traveling to China or India in search of something, someone, who may have indigenous plant knowledge" have you done any research on this yet? thanks for reading.

oh, and hi nathan. i'm tim and our symptoms seem to be pretty similar, too. so i hope we can stay in touch and give each other insight, thoughts and updates to try and figure this thing out. so, just wanted to introduce myself. take care.