Afectats de mioclonia estapediana II

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cherylpj Registered: 12/09/11 Posts: 5  Posted 12/09/11  #1  For a few months, I've had slight, gentle occasions where my eardrum felt like it was twitching. This past week, they've been happening in response to certain tones or sounds - the most notable being the phones in the office I work in. I work in a busy office. The phones ring regularly, and each time they do my ear feels like it's fluttering as though there's a butterfly stuck in it. It's just the one ear, and it's not painful, but it's so distracting and hard to deal with that I'm beginning to feel depressed at work, and to the point where I almost want to cry when a phone rings. I've been looking into this online, and I think what I've got sounds just like middle ear myoclonus. I really need help. I've booked in to see my doctor, but I made the appointment yesterday and there's a long waiting list so I have another ten days to wait - I don't know how to put up with it. Today, I managed to stop it by covering my ear with my hand every time the phone rang, but I look ridiculous. Colleagues have suggested I try an ear plug in one ear, and that's my next attempt but again I'll feel silly and I imagine it will affect my hearing the rest of the time, too. I'm at a loss. I don't know exactly what's causing it - is it a psychological subconscious thing more than a physical one? I'm sure it's not a volume thing. It might be a tone thing, or it might just be a response to the phones - I can't quite pin it down. It does feel like it's happening occasionally at other times, but only very slightly and not in any way distracting. It only becomes noticeable to an unbearable point whenever someone calls. Short of going crazy in the next week or so, how can I deal with this? Any help welcome. 00 Febrele Registered: 09/12/11 Posts: 79  Posted 12/12/11  #2  I have a good a bad news for you. The bad : Your doctor won't help you, I'm afraid. There is nothing they can do for mycolonus of the ear. Maybe you could get your magnesium check, taht'S about it. The good : Its not dangerous, its not a serious condition, and it can get much better with time and training. It has in my case. Don't protect your ears from every sounds. You will make them worse, more sensible. Try to get great nights of sleep, and make your ears work. Listen to music, to nature sounds, and confront those sounds who are annoying you. You will have bad and good days, but keep going. Only protect you ears when they can suffer damage (live concerts, fireworks, bars). 00 cherylpj Registered: 12/09/11 Posts: 5  Posted 12/13/11  #3  Thanks for your response. I've read through some of the threads on here, and seen a similar sentiment - I'm just unsure what to do. People say it's about getting used to the sounds that affect me, but I've worked in the same office hearing the same sounds day in, day out, for almost three years now. Only recently have they started to affect me, so it's not like I'm not used to those sounds already. I'll certainly brave external sounds elsewhere, but in the office it's impossible to work with my ear fluttering regularly. Ear plugs worked yesterday, but I end up deaf in the office and can't join in conversations or hear when people address me. It's frustrating, and upsetting, but the lesser of two evils at the moment. 00 brighter7 Registered: 07/16/11 Posts: 58  Posted 12/14/11  #4  Hey man, I have the exact sounds like you do which are triggered by noise. I have at times become so desperate and hopeless but stay strong that a cure will be found in the future (I really believe it will be found). How long have you had this problem and has your threshold to sound been reduced? Is it triggered by how loud noise are or is it always there? Mine started in 2008 and I'm only 19. I'm taking medication at the moment because my sensitivity to noise has gone down. Anyways, if your looking for place for great discussion, checkout this link-http://www.medhelp.org/posts/Ear--Nose--Throat/Perforation-of-ear--distortion--sensitivity-to-loud-sounds--please-help-me/show/7082 00 cherylpj Registered: 12/09/11 Posts: 5  Posted 12/14/11  #5  As far as I know, I've only had the problem a couple of weeks. I think it happened occasionally before, but it wasn't noticeable. And yes, it seems my sound threshold has lowered. I didn't realise that until yesterday, but if I'm exposed to the tones that affect me, or to particularly loud noise, for more than a few seconds I get a long-lasting 'aeroplane' sensation, with the feeling of ear pressure and what sounds like an aeroplane engine. I tried to resist ear plug this morning and by the time the phone had been ringing for a third time my ear went haywire with more regular fluttering and feeling like I was on a plane. Looks like I'm stuck with the earplugs. 00 brighter7 Registered: 07/16/11 Posts: 58  Posted 12/17/11  #6  Wish you a good recovery...there will be good days and very bad days but I cling to the hope someone out there might be researching about this problem and a solution can be found.  00 cherylpj Registered: 12/09/11 Posts: 5  Posted 12/17/11  #7  Thanks very much! Mine certainly doesn't seem too bad. Hopefully it stays that way. I can tell from the messages of others on here that I'm very lucky. I'll see what the doctor says on Monday, anyway. 00 Supersmooth Registered: 05/12/07 Posts: 41  Posted 12/27/11  #8  Hello  I am a 28 year old man who has Asperger's (milder form of autism). I have had surgery at the RNTNE to cut the tensor tympani muscle & stapedius back in January 2008 and this has not really worked for me. If anything it has made me far more sensitive to loud sound. I use to contribute on here on another forum! Whilst I do not regret having the operation to section middle ear muscles I STRONGLY dont recommend it! Heres the forum: http://www.chat-hyperacusis.net/post?id=2179087  I have been under a lot of stress and anxiety lately, I have a little OCD and i suffer from depression too. I already have a thyroid issue which is being monitored. However, it is not related to my thyroid. I can agree with a lot of what Febrele has said above and I can relate to what Cheryl has been through.    I have been taking medication for my thyroid problem and clonazepam (benzidozepam- sedative drug) supplied by my neurologist.  This drug is usually is the medication for epilepsy but also helps middle ear myoclonus. Please note that this only worked for about a month then after that I became immune to the drug...NOW I cannot get off it. The reason why I took this drug was because the middle ear twitching was in both ears and preventing me from sleeping and affecting my ability to concerntrate. I now cannot come off clonazepam and when I am without it, it causes unwanted insomnia like with drawal symptoms. I am also taking Propranolol 80mg per day to help with anxiety and reduce headaches, palpitations and panic etc. I would like some advice and help and if I can be of any help to anyone I will do my best. I have noticed that the middle ear fluttering/thumping/twitching gets worse during stressful times. Would you agree!? 1. Do any of you think that tensor tympani myoclonus is stress related!? 2. Have any of you taken any muscle relaxants and if so what are they? Have they helped!? 3. Has anyone taken muscle relaxants like Diazepam, Pregabalin, Dimexol, Orphenadine citrate? What's the result like? 4. Has anyone tried herbal remedies like Magnesium citrate, Vitamin B12 complex or Zinc etc? I have even had my blood test to see check my minerals and to see if I was deficient in something but I was okay. Surely this may not be an ENT or otological issue this is a musclular one!? Surely a twitch of the eyelid is the same as a twitch in the middle ear. This has caused much distress and depression in me and I hope to hear from someone and listen to their experience with this horrible objective tinnitus. Thank you Regards Sean Moon Attached Images __________________ Sean http://www.magical-moon.com 00 Rob Registered: 05/02/05 Posts: 3,700  Posted 12/29/11  #9  Hi Supersmooth.  Unfortunately, the trade-off for cutting those muscles is increased sensitivity to sound.   Clonazepam is addictive, as you know.  It is very important to work with your clinician as far as tapering off the drug.  It is doable, but you may need to go slowly.   The symptoms you have can be related to increased stress, in some cases.  Diazepam is considered an effective choice for an overactive tensor tympani muscle.  Of course, you will want to be completely off clonazepam before you try another benzo.  I’m not aware of any evidence that herbal remedies are effective. If you consume caffeine, try cutting it completely out of your diet for three weeks and see if that helps.   Rob  00 Supersmooth Registered: 05/12/07 Posts: 41  Posted 12/29/11  #10  Quote: Originally Posted by Rob Hi Supersmooth.  Unfortunately, the trade-off for cutting those muscles is increased sensitivity to sound.   Clonazepam is addictive, as you know.  It is very important to work with your clinician as far as tapering off the drug.  It is doable, but you may need to go slowly.   The symptoms you have can be related to increased stress, in some cases.  Diazepam is considered an effective choice for an overactive tensor tympani muscle.  Of course, you will want to be completely off clonazepam before you try another benzo.  I’m not aware of any evidence that herbal remedies are effective. If you consume caffeine, try cutting it completely out of your diet for three weeks and see if that helps.   Rob  Thank you for that Rob! Very informative and helpful. I have mentioned Diazepam and the doctor said that it was similar to clonazepam as it is a" "pam" under the group called Benzidozepam! So I am about to start a trail of Pregabalin. My neurologist suggested to take a trial of this and see where this leads too. But this will also mean reducing intake of clonazepam so I will keep you all updated. Just wondering? Have you had tensor tympani myoclonus before!? __________________ Sean http://www.magical-moon.com 00 Rob Registered: 05/02/05 Posts: 3,700  Posted 12/29/11  #11  Supersmooth - Yes, I sure have.  I felt like the world’s fastest bass player was playing one note in my ear, over and over and over.  I was hearing the repeated contractions of the tensor tympani muscle.  Exposure to all kinds of sound made it contract even faster.  Removing all caffeine from my diet helped me in just a few weeks.     There is a very good paper on tensor tympani syndrome by Dr. Klockhoff (who named the condition).  In some cases, the excessive activity of this muscle can cause debilitating pain.  I have experienced that as well, for very long periods.   I'm glad you are exploring your options with your doctor and I wish you well with it.   Rob   00 Supersmooth Registered: 05/12/07 Posts: 41  Posted 12/29/11  #12  Quote: Originally Posted by Rob Supersmooth - Yes, I sure have.  I felt like the world’s fastest bass player was playing one note in my ear, over and over and over.  I was hearing the repeated contractions of the tensor tympani muscle.  Exposure to all kinds of sound made it contract even faster.  Removing all caffeine from my diet helped me in just a few weeks.     There is a very good paper on tensor tympani syndrome by Dr. Klockhoff (who named the condition).  In some cases, the excessive activity of this muscle can cause debilitating pain.  I have experienced that as well, for very long periods.   I'm glad you are exploring your options with your doctor and I wish you well with it.   Rob   Thanks for that - will investigate! I drink a lot of tea, but no coffee and I do not smoke but I do notice that this seems to occur more during stressfull periods so perhaps tensor tympani myoclonus is stress related!? Interesting that whenever I am abroad or on holiday I never complain of this! Once again I got woke up because of the middle ear twitching or maybe I woke up and heard it! I am starting pregabalin now. I do not want to become a hypochrondriac, but at the same time it is nice to explore about middle ear disorders, especially when the fact that very few GPs have even heard about tensor tympani myoclonus. I told a locum a few days about this and she has never heard of it so I had to explain it!! I will look for that articale on Dr. Klockhoff. Thanks. I have attached a photo of what i looked like after the operation with cotton wool in ears. Best Attached Images __________________ Sean http://www.magical-moon.com 00 Rob Registered: 05/02/05 Posts: 3,700  Posted 12/29/11  #13  There can be a connection between an overactive tensor tympani muscle and stress.  Very much so.  Maybe try cutting out tea for a few weeks and see if that is helpful to you.    Rob   00 cherylpj Registered: 12/09/11 Posts: 5  Posted 12/30/11  #14  Hello everyone, thanks for all responses. As a short update on my situation, I went to the doctor on the day planned. He looked into my ears, and told me to go away, buy and use some Sudafed, and go back if the problem's not fixed within a fortnight. Explained to him that I was usually affected in the office, and wouldn't be IN the office for a fortnight due to the Christmas holidays, so decided not to try Sudafed until I went back to work in Jan. Two days ago, I woke with a thudding in my ear - first time I've had a symptom not brought on by a tone during waking hours. Over the course of the day it got worse and worse, until it sounded like the constant roar of a waterfall. Went and bought the Sudafed but it didn't seem to do anything. Eventually, gave up and had a couple of mild alcoholic drinks and it stopped (not sure if that's related or if it stopped on its own). Diet-wise, I have a very low sodium and caffeine intake - I keep close tabs on those and try to keep healthy. Stress-wise, I'm currently less stressed than I've ever been before so not sure that's a trigger. I go back to the office on Jan 3rd so I'm going to see how things go, and head back to the docs if I need to. 00 Rob Registered: 05/02/05 Posts: 3,700  Posted 12/30/11  #15  cherylpj - Tensor tympani myoclonus can sometimes sound like thumping or the sound that a tympani drum makes.  The tensor tympani muscle is attached to the eardrum and, in some cases, a clinician can actually see the contractions. In addition, a test known as tympanometry can be used to detect abnormal contractions of the tensor tympani and stapedius muscles.  Tympanometry can also be used to help a clinician determine if a patient has Eustachian tube dysfunction (ETD).  It is possible your clinician suggested Sudafed to help reduce swelling associated with inflammation of the middle ear, but you would have to ask during your upcoming appointment.  Either ETD or inflammation of the middle ear (called otitis media) could account for the sensation of pressure you feel.  I recommend staying on the Sudafed through your appointment, as your doctor suggested. Rob          00 brighter7 Registered: 07/16/11 Posts: 58  Posted 02/13/12  #16  My condition is in it's fourth year right now and the drugs I'm taking are Tegretol (calming the nerves) and Remeron (sleep aid and anti-depressant). I'd like to wean off these drugs in the future as I fear they don't do much good for the body.  To Rob-Hey Rob, do you have this so-called Tensor Tympani myoclonus affecting you? If so, has your threshold of tolerance (as In the level comfort before it crackles) gone down over the years? I'm curious and puzzled as to why my tolerance to noise has come down. I used to be able to withstand pretty loud events but over the past 4 years it's come down to a point where near-loud conversations can cause it. I do believe stress plays a HUGE role when it happens. I can prevent the crackling from happening if i'm consciously aware of the tenseness of my neck, head muscles and make a quick exit if possible. I always thought that the crackling would stay at a certain pitch and was benign. I'm always worrying about this but have great hope that some new techniques and technology would surface in the future that would hopefully alleviate us sufferers. Please reply to me your thoughts and advice! 00 tjmmurray Registered: 05/14/12 Posts: 2  Posted 05/14/12  #17  The Stapedius Muscle is spasming.  I have had hissing and ringing since undergoing shoulder surgery.  The noise was dibilitating, I could do nothing, relationship was tested with my best friend and fiancee, work suffered. I could not go into a noisy enviroment and had to seclude myself in the confines of my house and listen to nothing but silence.  I have spent thousands of dollars trying to find out what has happened to me--I would wake up in the middle of the night with the grinding sound of iron rubbing together, I would get an un-nerving hissing noise after I drove my car vehicle any distance, had to drive at night and take Ambien to get to sleep.  Drinking alcohol STOPPED the problem temporarily--the next day I paid a price as it came back twice as bad. I went to 3 audiologists, they all said I had high frequency hearing loss but my hearing in voice level was fine.  No other hearing problems with exception that my left ear heard things much louder.  I started wearing an ear plug after two months...I was able to control the problem if I stayed away from noise but came back as soon as I took the plugs out.  I was on Xanex, that made it worse.  Ambien put me to sleep and I could not wait to go to bed at night--I dreaded walking up.  I could no longer take naps during the day, for two months I never took a nap.  2 ENTs and my primary doctor were at a loss. I had a diagnosis of a sinus infection, which I did in fact have but after 7 weeks of taking antibiotics, an MRI and 3 CT scans yield nothing other than my infection cleared up but no change in the "tinnitus" hissing and ringing, and tones.   I noticed after I took a shower the problem would go away only to come back starting with a very small fluttering noise, but after 20 minutes or so it was so annoying and distressing that after 2 months I was having to live with this problem possibly for the rest of my life. Guess what--the second ENT said to me, "there is not much I can do for you" but he said he did have case like this once before and said I could try the medication--he said he gave Valium in the 90s to a patient who was really stressed out over pretty much the same symtoms--he gave him the Valium to help him relax when he got stressed out--the patient called him up and said the problem went away!!! During the treatment he noticed that when the fluttering started that if he took a valium, the problem subsided.   Diagnosis, very rare inner ear myoclonus.  This may not be so rare because there are alot of people told there is nothing more we can do.  Lots of people living with it.  There is the smallest muscle in the body called the Stapedius muscle, when that muscle goes into spasm from stress or whatever, it will cause the tones, hissing, fluttering, etc.  I was given Cychlobenzedrine.  $11 for 60 tablets generic.  I think it is called Flexeril as the trade name.  3 hours after I left the ENT office, I was symptom free.  It came back later but I took another pill and it went away.  There is a treatment for chronic Stapedius problems--the muscle needs to be cut.  All the cases where this treatment as been performed were instant successes--no side affects.  However, I have had the medication now for 10 days and I am able to control the problem and it really appears to be going away.  The spasms are stopping.  Sound creates the spasm as well as stress. Sound it stress, mental anquish is stress..Cychlobenzedrine relaxes muscles...just leg chronic leg cramps in footballs and basketball players, this muscle can continuously go into spasm for months, only subsiding after long sleep and naps, which I had neither of--the problem exasperated--now it is on the mend. Ear Plugs in the bad ear still but I take it out more and more each day--So after $30,000 in medical tests and fading hope, $5 worth of ear plugs and $11 worth of muscle relaxers did the job! I really hope that my story helps allot of people. This is a bloodless afflictions, people begin to think you are making it all up, look at you like you are some big baby.  No blood, no scars, because we all know how to behave properly we don't walk into the doctor screaming--we compose ourselves and behave as we are expected to.  If I walked into my house with a finger cut off screaming, everyone would be helping--if I started vomiting profusely, I would get care that I needed.   When you have probably the worse affliction of all, screaming noise in your head that only you can here. You have a big problem convincing anyone what is really happening. I literally was contemplating something bad, I knew I could not live a descent life with this sort of problem going on--all the people around me would be affected by this problem if it went on indefinitly.  Would I have hurt myself, probably not--the thought was there as a way out. When I went to my first ENT and told him what this pill did for me, he instantly said, "I never thought of that"  it makes sense.  I like the guy, he was always real honest with me--once you get past the ear drum they can't see what is going on very easily.  Don't use the word tinnitus---use "ear fluttering out of control creating a havoc within my head", that is what I said to the second ENT.  That got me results.. The ENTs  have a preconceived definition of tinnitus--that is it is an annoying sound, live with it.  Be more specific and keep up the fight, find someone who will listen to you. Let me know if this helps anyone out there. Sincerely, Tim 00 brighter7 Registered: 07/16/11 Posts: 58  Posted 05/15/12  #18  Tim, try to get in touch with a very good Neuro-otologist. They are a sub specialist that specialize in inner ear disorders and the brain. I have somewhat the same symptoms as you do and it has greatly bothered me immensely.  00 tjmmurray Registered: 05/14/12 Posts: 2  Posted 05/16/12  #19  I am not sure if you read my complete post, but I have found how to reduce and possibly eliminate the noise problems I am having. 1) You have to use NeilMed Sinus Rinse and learn who to clear your sinuses for all the crap.  The method I use is to hold a nostril shut while squirting the solution in the other nostril.  Its easy to get used to, but your allergies, if any will be less of a problem on your Eustation Tubes. It took 4 days of using NeilMed Sinus rinse (Walgreens or CVS) before my Eustation tubes lost that PLUGGED or Full feeling. 2) Quit Smoking--people who smoke get that full feeling in one or both of their ears eventually because the smoke drys out the Eustation Tube as well as tar making its way out of the ear.  Strop Smoking, the hissing in the ears many times is a result of dried out Eusation Tube(s). 3) Get moldable ear plugs, they are clear and they cost like $6 for 6 pair, which are reuseable.  Why moldable, because they not only seal off the entire ear from sound, but it seals in the pressure.  The foam plugs do not, you can still hear with moldable as they are only 22 dcb.  Alternate the ear plugs from week to week, wear them when you are buy your computer fan, stay away from all forms of whining sound,  4) DO NOT USE BOSE Noise cancelling HEADPHONES!! These can cause the sound or make it worse in your head. 5) See and ENT and get a prescription for Cyclobenzedrine (Flexeril) which will relax your muscles, take one before you go to bed and one immediately when you get up and possibly one during the afternoon.  They only made me sleepy the first two days I used them.  After that I was fine.   6) Ears heal when they are at rest.  If you can not sleep at night or take naps during the day, your ears will likely not get better or even worse.  I used half an Ambien to get to sleep, they I managed to use 2 Benedryl after a while which worked just as well.   7) Turn the TV down, NOT UP.  Your ears focus on primary sound source, focus on a sound that is lower not higher, your ears will be less likely to react to the television. 8)  Work out!  I thought working out would not be good, I work out now and it is the best thing for your mind, it gives you strength to get through this.  I work out right before I go to bed, I head over to Planet Fitness for $10 a month and get on the Eliptical for 30 minutes, 10 minutes of weights and I am home, taking a shower and then in bed. 9) Take Vitamins in large quantity A, B, C, D, etc, Magnesium supports the ear. 10) Drink 2 liters of water a day--mandatory for ear and sinus health. 11) Be patient--you will see very good results in the first two weeks, but you need to not get complacent because this affliction can reverse.  Stay on the program and try to walk outside as much as you can, breath in through your nose and out your mouth and vice versa to stabilize the pressures in your head. Good luck! 00 twin57cobra Registered: 11/05/09 Posts: 1  Posted 01/29/13  #20  Hi tjmmurray, I've been living with inner ear myoclonus for years now.  I just stumbled on this post and was wondering if the Flexeril is still working for you??  I've been using Clonazopam when the spasms get really bad and it works.  Just leaves you very tired and drunk feeling.  Problem is, you become very dependent on it,  so I'd like to try something else with less side effects. I've had both Tensor Tympani and stapedius muscles cut in both ears and this has helped a bit, but I still get the spasms. I have figured out what triggers the spasms for me.  Basically anything that causes pressure in the inner ear...yawning, holding in a burp, hiccup etc.  This might explain why many people get the spasms just before bed, the yawning.  I actually have to exhale and blow out while yawning to prevent the spasms from coming on. I've tried vitamins and Magnesium (magtabs) in the past.  It helped a bit, but not much.  Clonazopam has been my miracle drug. When the spasms come on, I take 0.5mg to 1mg.  In rare cases in the past I've taken up to 6mg in one day to help, because of how frequent I was using the pill...your body gets used to the dosage.  Now, I only use 0.5-1mg when I'm desperate. I'd love to know how Flexeril is working for you or if you have any new updates on your condition. Any help would be great. Thanks, Mike