Author Topic: A hearing problem, feels like my head is in a box  (Read 4784 times)

drybrook

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A hearing problem, feels like my head is in a box
« on: June 04, 2012, 05:29:33 PM »
Hi All,

I was diagnosed earlier this year with Sjogren's from a biopsy. I have had I have dry eyes, dry mouth, dry skin, including a dry sense of humor. Everything is DRY! I am back on again and still on steroids because my eyes are "scary red". My ears are dry itched inside from dryness. So, I'm on medication orally and dumping various drops, oils and ointments into all orifices of my body. A month goes by and I'm feeling like my head is in a box, I am thinking my allergies are beyond control. It feels like my ears are overly congested. After a trip to my primary physician, a round of steriods, another trip to my primary, no resolution I am sent to the ENT and ... I was diagnosed with a rare disorder, the opposite of being congested ... I actually need more congestion: patulous eustachian tube dysfunction.  Basically, the Sjogren's is drying out my eustachian tubes causing them to be too open and causing autophony (talk about annoying!!!) I had to get the medication from a compounding pharmacy (I am the first person they have ever made it for). The medication is a nasal spray and the idea is to cause congestion in the eustachian tube to close it a bit. Here is a link for the description http://www.patulouseustachiantube.net/Description.html

Just though I'd mention it in case someone else is having similar symptoms. My ENT said the scary part of this is that many doctors are not familiar with it at all and go ahead and put tubes in the ear drums, because they "feel congested" and it makes the condition worse. Wanted to put out the information.

Just a thought in case.

Drybrook

gold55

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Re: A hearing problem, feels like my head is in a box
« Reply #1 on: June 04, 2012, 07:46:35 PM »
this is very interesting and I'm so happy that you have a super ENT!!!  phewwww.....that would have been a mess if he had put tubes in your ears.  Hope you feel better soon!  I'm going to read your link now.
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

m.t.g.

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Re: A hearing problem, feels like my head is in a box
« Reply #2 on: July 13, 2015, 09:31:55 PM »
I know this topic is very old but I don't know any other way of getting in touch with Drybrook.  I have been diagnosed with Eustachian tube dysfunction by an ENT who wouldn't read the page of symptoms that I wrote and wouldn't let me talk except to answer questions so didn't get all the information and I am sure the audiologist did not test for patulous Eustachian tube but I have all the signs of it.  I live in Melbourne, Australia, and feel very alone with this.  Could you tell me about the spray you got to help close the tubes?  What was it and did it work? Thank you.

cccourt1942

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Re: A hearing problem, feels like my head is in a box
« Reply #3 on: July 14, 2015, 07:22:03 AM »
mtg:  I don't know.  I'll say that right up front.  But...I can tell you this, the Eustachian is not a permanently closed organ.(or part of the body)  It opens to drain when necessary.  When a physician diagnoses Eustachian Tube dysfunction it refers to almost anything which is manifesting any dysfunction of the Eustachian tube.  Tinnitus is diagnosed  as such many times.  Technically tinnitus is an inner ear disorder.  I believe over the decades, after various treatments for same have evolved, the doctors who diagnose this condition have become sloppy about its use.  NOW then PATULOUS Eustachian tube dysfunction is another animal.  Not to be considered in what I described.  I will give you a personal example:  I have read on my "chart"  the same condition...never discussed by my internist and me...but given after I stated my tinnitus was becoming chronic.  He did not take into consideration one of the meds I take (for SjS) has as its #1 side effect-tinnitus.  Now...which do I have?  Side effect or Eustachian tube dysfunction.    Either one of us can decide.  btw:  drybrook did not note if he takes Plaquenil. 
   Good luck.
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

irish

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Re: A hearing problem, feels like my head is in a box
« Reply #4 on: July 14, 2015, 02:20:19 PM »
I live in a part time feeling that my head is about 2-3 times the size of normal. I don't have any problems with eustachian tubes other than I have floppy tubes. Probably related to autoimmune connective disease. I had to have a tube put in my ear in order to hold the tube open at one point. He could see the tube flop down on itself when I breathed and then open up off and on. This resolved itself for the tme being. Probably related to the amount of prednisone I am on.

One should also keep in mind that the autoimmune disease also affects the central nervous system in many ways including the hearing. All these things are so intertwined that it is hard to sort out. I have had tubes about 4 times and most of these were for ear infections and they have not improved my "big head" feeling. I have no clue why but know that it improves when my other symptoms improve. Who knows for sure. I may have a patulous tube dysfunction also but I don't know that it would make any difference for me. I also have only 50% of my balance result of surgery (also totally deaf in right ear) and the other ear problem that causes balance and dizziness--can't remember the name of it now. With all these issues I am just thankful to be able to stand upright and hear as good as I can. I hope the information does help some of you. Good luck Irish

m.t.g.

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Re: A hearing problem, feels like my head is in a box
« Reply #5 on: July 29, 2015, 10:33:19 PM »
Thank you ccc and Irish for responding.  My symptoms include autophony, aural fullness and being able, very briefly, to relieve the symptoms by bending over or, for longer, by lying down.  (I have everyday disequilibrium and, now rarely, vertigo symptoms also but these may be unrelated.)  The symptoms are all typical of patulous Eustachian tube.  I have looked at every conceivable site on the Internet so have a wealth of information on the subject but have not found anyone who describes the slow progressive nature of what I have.  It started 10 years ago with aural fullness that occurred after an hour's singing in a new singing group and went away fairly quickly after the singing ceased.  It is now with me permanently since early June this year.  One site (medical) said of autophony that it is more commonly unilateral (like mine), more common in women and one-third of people with it have auto-immune diseases!  I have had Sjogren's for 45 years so I suppose it is just something else I have to live with.  I was just hoping Drybrook could help me with the spray he/she described but I see that he/she placed messages over only a very brief period in 2012 and then 'vanished'. This is a rare condition but, as I have said to my rheumatologist, I think I am a bit outside the box as far as Sjogren's goes; then again, maybe all of us are!

Just a word on another subject in case it helps anyone: I had such a lot of trouble with my lips for about 7 years and thought it was just the dryness.  I finally worked out (via another wonderful Internet site) that I was allergic to beeswax and possibly other waxes.  I now use only Aquaphor on my lips and they are so much better.  As I have seen you say, one can sometimes blame one's automimmune diseases for all one's symptoms but there may be other causes.

Cheers, m.t.g.

irish

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Re: A hearing problem, feels like my head is in a box
« Reply #6 on: July 29, 2015, 11:14:18 PM »
Just to let you know that I have had autoimmune issues since 1964 or so and didn't get diagnosed with Sjogrens untilo 2003. My hearing loss and dysequalibrium started in 1996 and hasn't gone away. It is better at some times and it seems that at times the prednisone helps. It has not helped to have 9 years of IVIG either but maybe I would be worse without the IVIG.

I have to be so careful when I walk so that I don't fall or miss steps, etc. Have to watch where to put my feet a lot of the time. The full headed feeling seems to really affect how I survive in a crowd. When I am in a group with people talking the sound seems to bounce off the walls and my balance and feeling that I am going to fall down get even worse.

Not pleasant to live with, but the good thing is that when I sit down I feel some better and it doesn't bother me when I drive. It does cause a lot of fatigue though after I have driven for a couple of hours. This is so hard to explain to doctors and others. We look normal but we don't feel normal and life gets difficult at times with this issue. Also, those of us with these problem have no way of explaining this to relatives. The only other person who understands it someone who has it. I have come up with a little things that is the best explanation I can think of.

I tell people to imagine that you have a carpenters level between your ears and you are spending much of the day trying to get that darn bubble to balance. Constantly our brain is busy trying to keep that bubble where it should be and we ourselves are moving in ways and doing little things to help keep the bubble in the middle. It never really gets there, but if we don't fall or make a fool of ourself or pull of a pretty normal appearance in a crowd where in our movements to conversation we have done good. The stress involved in this process is totally exhausting.

I had this problem with my last job and my boss would always tease me for walking like I was drunk. What he didn't know was that I did pretty well at work because I spent a lot of time walking in halls which brought the walls in to a place where I could function better. Get outside and the brain has a harder time finding the perimeters or outside edges and getting the bubble in the middle.

I asked my doc why driving wasn't more of a problem and she said it had to do with the brains ability to focus straight ahead on the road and our peripheral vision worked in a different way when we had a focus point. Irish
« Last Edit: July 30, 2015, 02:23:27 PM by irish »

m.t.g.

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Re: A hearing problem, feels like my head is in a box
« Reply #7 on: August 08, 2015, 06:06:37 PM »
Dear Irish,

I think we are probably of a like age with a long history of chronic illness with all its physical and emotional nightmares.  You certainly seem to have more than your fair share, as have I.  I find it harder now as I age and get all the ageing problems as well.  I live alone, have no partner/children and no relatives within about 1000 km and feel very frightened.  I know I am not alone in this.  On the subject of ears, I came across a new addition to Utube a couple of days ago.  It is a talk given in late June of this year to a group of physicians by a surgeon who has specialised in Eustachian tube disorders for ten years.  We would have no one like this in Australia at all, let alone in Melbourne.  He has named another disorder he believes to be mistaken for the patulous one - Speech Hyper Resonance Eustachian Tube Disorder (SHRED).  I still think I have the patulous ET and he was asked a question at the end where he said he had operated only once on this because he is very loth to operate on an ear with normal hearing.  I haven't got the name of the talk but if you go to Utube and type in patulous Eustachian tube it will come up as one of the options in the column on the right.

Your disequilibrium problems are greater than mine are at present but I thought your use of the spirit level as an analogy was brilliant.  I don't have the big head feeling but I do have a problem with noise.  They say patulous Eustachian tube does not affect external noises but it has with me.  Since this became constant, I have a much greater problem with screaming children, microphones...  I am persevering with the singing group for the rest of the year, only because I feel an obligation - an hour and a half of practising with the autophony is a nightmare and leaves me exhausted and superhypersensitive to such noises as the conductress clapping loudly to keep us in time.  It goes through my head like a knife.  Yesterday I bought some ear plugs and will try using one of these in the bad ear.  I was surprised that the surgeon giving the talk did not list autoimmune diseases as a possible cause but he did list mucosal atrophy and that said 'Sjogren's' loud and clear.  But who knows?

I think I read that you lost your husband in the early part of last year.  I, too, had a traumatic grief to deal with at that time and it is with me still.  On September 11 the Queen said: "Grief is the price we pay for love."  Such a big price.  I offer my sympathy and share in your heartache.  I hope today is a good day for you.  Take care.