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Eustation Tube Dysfunction & Mastocytosis
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Eustation Tube Dysfunction & Mastocytosis

I was diagnosed with Mastocytosis about 2.5 years ago and it has been primarily under control -- only minimal allergic reactions.  

Around the first of the year, I was diagnosed as having viral vertigo, which has improved, but not gone away.  After doing some research, I seem to have every symptom of Eustation Tube Dysfunction (ETD) -- vertigo-like symptoms, ear pain, occassional tinnitus, etc -- but also have nystagmus in a lateral gaze greater than 60 degrees.  I have read that ETD can be caused by an allergic reaction that makes the eustation tube swell.

The ENT I was referred to was no help and wouldn't listen to a word I had to say, told me I was fine and sent me on my way.  He didn't even use a scope to look in my ears!

Is it possible that I have ETD that is due to an allergic reaction caused by mastocytosis?  If an ENT isn't the right doctor to see, who is?

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23 Comments Post a Comment
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Avatar_n_tn
What a terrible thing to do to a patient!  I suggest you find a better Ear, Nose & Throat specialist!  

Sandy
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Avatar_n_tn
I have had ear problems for 3 1/2 years now, pressure, pain, dizziness and frustration with the whole fullness in the ear effect.  The EMT says its TMJ and Eustation Tube Dysfunction.  I've tried a number of medicines, netti pot washes, nasal sprays, acupuncture...I'm now considering the ear tubes, has anyone heard good things about this?  
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Avatar_n_tn
i suffer from tinnitus  eustation tube blockage i hear nose in my left ear all the time, cannot sleepplease help anyone
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Avatar_n_tn
Hi, I've had tinitus in both of my ears as long as I can remember, and it gets worse each year, and It makes it really hard to concentrate in a quiet room, or go to sleep.  There is nothing you can do about it, and it will just continue to get worse as you get older.  The only solution they have for it so far is a tiny little fan thing that they can put behind your ear to drown out the ringing.  I have to sleep with a fan on in my room so that I can't hear the ringing.
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Avatar_n_tn
Ear tubes are no big deal.  A monkey could install them properly.  And that is about the intelligence level of a lot of ENTs.  Just keep in mind that ear tubes will have to be replaced frequently which ENTs love because that means more surgery money for them.  What you need are permanant ear tubes.  They are shaped like a T and they do not come out.  My son has them.  He was born with low tone cerebral palsy.  His eustation tubes to not work properly and never will.  Thank God for permanant ear tubes.  ENTs, as any other doctor in this life, are out to get the most money and draw out your illness as much as they can.  Your pain, symptoms and life mean nothing to them.  It is all about money. If you can, find an ENT who focusses on what he was trained to do which should be to take the best care of you and your problem.  
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Avatar_n_tn
AMEN AMEN AMEN AMEN

AMEN AMEN AMEN AMEN

Sad thing is, ENTs are not the only stupid doctors out there. I wish it were the case, but it isn't. If you find a good doctor these days.....  it is a miracle.
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Avatar_n_tn
Hi there,
I read your feeling on tinnitus always getting worse is that your experience or do you know this to be the normal for most poeple, I also have had it for many years 17 to be exact, it was very manageable at one time but in the last 5 years I haven't been able to clear my ears of mucus.
So I got rid of dairy and wheat and there has been a big difference, I am no longer trying to clear my ears constantly.  But recently I have had a few very stressful things in my life and my tinnitus level has risen, anyone had experience with that.
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Avatar_n_tn
Hi there, my 5 year old son is getting ready to have T-tubes put in his ears.  This will be his 3rd set of tubes plus last time he had his tonsils and adenoids (adenoids) removed as well. As usual we were rushed through our last appointment and didn't get many answers about T-tubes and how they differ from regular tubes. I know there meant to stay in longer but does that involve any risks? Any information you can give me about T-tubes would be truly appreciated! Thank you.
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Avatar_n_tn
For the past 3 months I have had pressure behind my ears running up into my head on the left side and down along my jaw. For a time I had tinitus which nearly drove me mad but friends suggested I try Hopi ear candle treatment. This has cleared the tinitus although my doctor disputes the science behind them and is sceptical. I still have intermittant pressure problems but none of the doctor's reccommendations have helped - Flixonase nose spray, antihistamines nor ear drops. I also had an Indian head massage which relieved the pressure temporarily. Whether the relief is due to relaxation during the treatment, psychosomatics or what, I will repeat that until the medics can come up with a better treatment. Having scoured the internet, I do wonder if my problem is Trigeminal neuralgia. Has anyone ever had this?
Janie49
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Avatar_n_tn
can a roller coster cause  damage to your eusations  tubes?  a few days after the ride-- i woke one one morning and found my  hearing to be muffled--  went to a regular doctor and she checked for  fluid she did not see anything but said it they could be compressed? she gave me a prescription for flonase and sudefed   my hear was checked and its very good hearing but its not going through the tubes right- what can i do to get my normal sensation back
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Avatar_n_tn
Hi

Thank god other people are having the same poor treatment from their doctors as me. My GP labelled me as neurotic. I have seen him this morning and he again confirmed there is fluid behind me ear drum but continues to state that the nasecourt will get rid of this. I have had this problem for 2o years, so has my sister, cousin and neice. Are we all neurotic. I have seen so many ENT doctors who say it is stress, one actually said I had a lot of mucus but couldnt do anything so discharged me, good old NHS. I have no faith in GPs or consultants. I continue to have pressure  headaches that make me want to bang my head into a wall to stop them. Pain in my face and earache. I will give the hopi candles a try, nothing can do any worse.
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Avatar_m_tn
  I have had vertigo and pressure behind the ear for 7 months.  An ENG test showed I didn't have meneires disease but I spent most of my life afraid to go out of the house until I went to a medic quick clinic and the PA flushed out my ear and it started to double click and the pressure was relieved.  I started flushing my ear out myself with excellent results. I told my Physician and ENT doc about this and they told me to not flush my ear but to just keep taking antivert and steriods up the nose.

Seven months of pumping drugs in my body has not made me better but flushing the ear does help.  Do I look at the facts or do I listen to the learned physician who doesn't live in this body.

   I put 5 drops of Debrox ear drops in my ear and then flush it out with warm water, a little later I add 2 drops of swimmers ear and a little later I add 3 or so drops of earache drops.  One treatment last about half a day so I have been doing about 2 treatments a day.

    I forgot to add that for best results I do a half hour of Lilias yoga or a half hour of swimming after flushing the ear to get it open.

    Once in a while my good ear gets stopped up and when this happens it takes the steroids up the nose as well as the ear flush.

   After 7 months I am not cured but I am living good.
I read that doctors complain that patients want the doctor to fix them but don't want to help themselves.  Well, sometimes we have to look out for ourselves.
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Avatar_m_tn
  I forgot to mention that while doing Lilias Yoga that the ear mostly cleared up while bending over.

   I have found that I can pull weeds in the yard and help clear my ear if I keep my legs fairly straight and bend over to pull the weeds.  I don't pull hard when in this position and I don't stay in it long.  I have noticed a woman down the street who pulls weeds everyday and she always keeps her bottom half straight but women are better at this than men.

   Anything that requires me to bend over helps.

I also suspect some neck problem because swimming takes the weight off my body and bending over takes the pressure off my neck. Hmmm But that doesn't explain why the ear flushing helps.
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Avatar_m_tn
  I just went to my VA doctor or the 8th doctor for my vertigo.  I created at least an hour of paper work for the VA; and the Doc and nurse are tops and record every detail but the doc says there is no way flushing my ears could help ETD.  He was prepared to do a long series of test but I told him I had been there before.  He told me he could find nothing wrong with me. Well, I could not flush and come in sick but then he would want me to take all that medcine.

    All doctors are of the same mold when you have seen one you have seen them all.  I went home and tried to believe I didn't need to flush my ears but when I started running into the walls I got out my flush kit and thank God it worked again. Someone else mentioned that it helps to lie on a pillow with your head hanging off the side, I have been doing that when I can because it extends the time my ears are clear. In fact, just lying on that bed which is flat helped my ears to clear up.  Hmm My own bed is elevated, maybe that is why I can't shake this vertigo.

      When I got vertigo I believed I had traded sinus trouble for Vertigo, well after being off all medicine for 10 days, I got my sinus trouble back.  At least when I sneeze and I sneeze a lot, it clears my ear up for a while.  Half the deal is done, now for the end of vertigo.
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Avatar_f_tn
I found something interesting here. Perhaps you can decipher it better than me, but it looks like these people doing a study here have found a way to stimulate the body to soak up more fluid out of the inner ear, which of course is attached to the eustacian tube. It may be helpful.
Just scroll down past the French to get to the English version.


http://cat.inist.fr/?aModele=afficheN&cpsidt=16411379
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Avatar_m_tn
  Even the English version is not English to me.  By the way my VA Nurse is Michele.

  I think the flushing of my ears sets up a cycle of clearing the ears and then the water causes swimmers ear so I flush it again in an endless cycle.  Last night, instead of flushing my ear I put in swimmers ear drops.  It made me a little dizzy but I went to bed and today my ear is doing good.
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Avatar_m_tn
I, like all of you suffered for over a year with chronic dizziness, ear pain and pressure...to the point where it was making me depressed! Long story short....I was speaking to a gentlemen who went misdiagnosed for years and finally was treated for chronic TMJ. He started wearing a dental guard at night (DenTex makes a good no boil one that you can get at CVS for around $50) followed a soft diet for awhile, found some jaw exsercises online and took advil every 4 -6 hours off and on for a week. Within a 10 day period, his symptoms decreased SUBSTANTIALLY....and so have mine.The muscels right below you ears get so inflammed...that you have pain, fullness, dizziness etc...Maybe it's time for a new approach to an oh so common stress disorder.GOOD LUCK ALL! Sandra
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549511_tn?1271779530
Had tinitius since I was a little kid,if i got a fright my ear would hum even louder.As an adult if i get stressed it whistles so loud it drive me nuts.I have had many ear ops and the last one rendered me deaf in one ear,that was 38 years ago,so most of my life i have been  this way.6 years ago i got a hearing aid and that has tamed this noise down a fair bit.I a  very edgy most of the time so my ear keeps on hummin away.I got tinitus in my GOOD ear recently and with both sides going to town it drove me up the wall.I was prepared to try anything,so i got an ear candle and that worked well on my GOOD ear.I notice it more when things are quiet.
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Avatar_m_tn
   I discovered why flushing my ears helped me.  When I had drops in my ears I would lie down and do the sucking action to clear out my middle ear.  The ear drops just got me in position.

   That is why 8 out of 8 doctors told me that flushing my ears will not help ETD.
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Avatar_m_tn
  Here is some info that helps me greatly; it allows me to open my ears by pushing my jaw forward and yawning.  At one point I held my Eustachian tube open and fluid was flowing but I didn't know if it was going in or out so I quit, silly me.  It takes a lot of practice.
  I see that I not not only have to learn to open the tube but to control the pressure while the ear is open at the same time.  I can't do that yet but just opening the Eustachian tubes is a great help

(quote)Pressure equalization

Normally the Eustachian tube is closed, but it can open to let a small amount of air through to equalize the pressure between the middle ear and the atmosphere. When this happens we hear a small pop, an event familiar to aircraft passengers or drivers in mountainous regions. Yawning or swallowing can pull on muscles in the neck, causing the tube to open. Without this airway, air would be unable to escape from one's ear, the middle ear would be isolated from the atmosphere, and could be easily damaged by pressure changes.

Some people are born with the ability to contract just these muscles voluntarily, similar to people who can wiggle their ears. Those who have this ability can hear "pop" or "click" sound in the middle ear when actuating these muscles, and are able to hold the muscle contraction (some refer to this as 'clicking your ears to equalize the pressure').[citation needed] Doing so will make one's voice sound louder to oneself. This ability allows such people to voluntarily equalize pressures at will when making rapid ascents or descents, typically in aircraft flights or large elevation changes in either tall buildings or mountainous treks. When the breath (inhale or exhale) is controlled, air pressure can be intentionally increased or decreased in the middle ear (breathing through the nose only or mouth), where the feeling of a cool air breeze can be felt inside the eustachian tube.

Occasionally, if the voluntary contraction timing is missed during a rapid pressure change, a slight yawning (opening of the jaw) action combines to assist in pressure equalization.

Mucus drainage

The Eustachian tube also drains mucus from the middle ear. Upper airway infections or allergies can cause the Eustachian tube to become swollen, trapping bacteria and causing ear infections. This swelling can be reduced through the use of pseudoephedrine. Earaches are more common in children because the tube is more horizontal and thinner, making the movement of fluid harder(/quote)

http://en.wikipedia.org/wiki/Auditory_tube
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Avatar_m_tn
   6 doctors and one ENT and not one of them gave me the gold standard treatment for vertigo:  Valium and antivert.

    I found some old Valium pills from years past and I took one valium and one antivert and in less than 10 minutes great gobs of goo came out of my eustachian tubes and I then I could feel air going through them when I breathed.

    I know it was my eustachian tubes because I have been teasing little drops out of them for 10 months.
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Avatar_n_tn
A good temporary relief while using one of the phedrine meds.is to hold ones nose,close the mouth and blow to give a pressure to the eustachian tubes to help inflate the tubes,but  be careful know your limits, and sometime this can increase tinnitus notice or the ol "Tin Ear" as i call my affliction......
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Avatar_n_tn
What is Mastocytosis?
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