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    Old 07-22-2004, 07:53 PM   #31
    snapcracklepop
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib,

    This is scp's hubbie. She asked me to send you a note to let you know she hasn't answered you back because she's not been well, and she'll chat with you again soon. She really appreciates "talking" with you about the whole PET situation. It's great for her to have someone else who can relate - lord knows I can't...

    The letter from Poe was just a form letter which described the PET surgery in detail. I agree with you, by the way - he writes extremely well.

    Hang in there - August is almost here!

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    Old 07-23-2004, 03:17 AM   #32
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hi Lib,

    This is scp's hubbie. She asked me to send you a note to let you know she hasn't answered you back because she's not been well, and she'll chat with you again soon. She really appreciates "talking" with you about the whole PET situation. It's great for her to have someone else who can relate - lord knows I can't...

    The letter from Poe was just a form letter which described the PET surgery in detail. I agree with you, by the way - he writes extremely well.

    Hang in there - August is almost here!

    SCP's Hub
    hi scp hubby,
    i hope she feels better soon, shes been through so much. nobody can relate unless you have had pet, it is a very disturbing condition, its torture 24/7.
    thank god for dr. poe, a man who does understand.
    tell her to hang in there also and i miss talking to her as well. lib

     
    Old 07-29-2004, 09:10 PM   #33
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib,
    I am rejoining the human race. The pain syndrome flared up and knocked me down for awhile. I was totally overwhelmed physically and emotionally. I have had lots of doctor appointments, good and bad. I learned more about some of my diagnoses so I am now moving ahead.

    Lib, I am really scared about the noise that has started in my left ear. It started two weeks ago. It was a buzzing sound that was very high-pitched yet intermittent. It has gotten louder and now is constant.

    I saw in your post you asked me about tinnitus? Do you have it? Is is part of PET? Is it permanent? Does Poe's procedure fix it?

    After everything I have been through and all the other things I have to deal with, how could I have this? I am at the end of my rope.

    I saw on-line that TMJ may cause tinnitus. I don't know what I will do if it is permanent.

    When is your surgery date? Keep me posted.

     
    Old 07-30-2004, 04:14 AM   #34
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hi Lib,
    I am rejoining the human race. The pain syndrome flared up and knocked me down for awhile. I was totally overwhelmed physically and emotionally. I have had lots of doctor appointments, good and bad. I learned more about some of my diagnoses so I am now moving ahead.

    Lib, I am really scared about the noise that has started in my left ear. It started two weeks ago. It was a buzzing sound that was very high-pitched yet intermittent. It has gotten louder and now is constant.

    I saw in your post you asked me about tinnitus? Do you have it? Is is part of PET? Is it permanent? Does Poe's procedure fix it?

    After everything I have been through and all the other things I have to deal with, how could I have this? I am at the end of my rope.

    I saw on-line that TMJ may cause tinnitus. I don't know what I will do if it is permanent.

    When is your surgery date? Keep me posted.
    hi scp,
    what all have you learned?
    i have tinnitus it is a constant hum, sometimes it goes high pitched.
    i think it part of pet but i dont know. sometimes my hearing will fade out a bit and expert doc said that was pressure change in the ear.
    the snapping in the face has gotten louder and its making me crazy.
    trust me i know what you mean....i have been through a lot also and wonder the same thing...how could this happen and like you i am at the end of my rope, i hardley make it through the days.
    surgery is august 9, seems like a year away for me. i am very scared i have never had surgery before.
    if the tmj is causing the tinnitus it should not be permanent, it should get better with treatment, i beleive mine is the pet. i have had all sorts of crazy noises in my ears scince this started, it makes me shake and disturbs me mentally. i am thinking about asking expert doc just to close them completely, and put tubes in my ears, i am afraid i am going to snap any day.
    are you sensitive to noise, like dishes or loud voices or loud laughing?
    what did your letter say? lib
    oh...i also have a new disturbing symptom, if i tip my head or try to thrust my hair back with my head my ear cracks really loud, other people can hear it also, do you get this?
    and i hear my heart beat in my right ear when i bend over or lay down and roll to the right, its crazy! i spoke with a patient that had the surgery,
    i gave the office permission to give my number to other patients, she is improved, symptoms are diminished but not cured. so i am hopeing other patients will get my number and call me, talk to you soon. lib
    also describe your snapping sound does it happen when you talk also? other people can hear mine. i also feel and hear a lot of crackling and clicking in my face, do you get that?

    Last edited by lib; 08-01-2004 at 09:56 AM. Reason: more info

     
    Old 07-30-2004, 06:27 PM   #35
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib and SCP: This is a combo note since I was reading the postings between the two of you. I just wanted to tell you that I am also sensitive to loud noises. Certain things bother me more than others--the sound of a spoon stirring sugar into a glass seems so intense and female singers vs male--seems to be more uncomfortable in the high ranges. I have gotten to a point that if I go to a movie I wear earplugs because they crank up the volume so much. I can hear the movie fine with two earplugs in but can't hear much of anything if a friend asks me a question. They know to wait until we leave the theatre and actually get back into the car where it is quiet. I went to a musical recently and fortunately I carry my earplugs with me all the time now. As soon as the female lead broke into her song I was scrambling for the earplugs. I am sure that creates some curious looks from others. TV and things around the house don't seem to bother me but when I am in a restaurant it seems that there are so many noises and that is part of the reason it bothers me. Glad to see that you are back with us SCP. I missed getting a hold of Poe today but will try next week. You also mentioned the cracking sound is audible to others--that is amazing--no wonder it drives you nuts. I don't have that but I have noticed that I have tinnitus and at night when I sleep I sometimes have to find a position where my ear isn't acting like an amplifier and picking up my heart sounds--it is loud enough to keep me awake. Doesn't seem to matter if I sleep on the affected side or not--I switch all night long but just certain positions of the neck and I can hear the swooshing. I don't notice the tinnitus or my dizziness when I am busy and moving about but I am dizzy when I sit still and am quiet. The only time I hear the tinnitus is when I go to bed and then I really wish I could shut it off. I use to have one of those mood synthesizers that had the sound of the ocean and I thought I might get one again just to create something that is a little more relaxing but has the same tone to it. Do you both feel pressure in your ear? I keep reading that everyone has some problems with their voice being loud and also the snapping noise but I haven't heard anyone say they feel pressure in their ear. When I had my ventilation tube put in it was the strangest feeling like a balloon being punctured. There was an almost instant release of pressure. That felt good after having that full feeling for so long but unfortunately it was short lived and replaced quickly by a feeling of distorted sounds. It just felt like the reverse of PET in that all the sounds were amplified from the outside vs the inside.

     
    Old 07-31-2004, 01:09 AM   #36
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi there! i'm new to the health board. i happened upon this website only yesterday after experiencing this PET syndrome for many years. Over 25 years in fact. So maybe I can be of some help to you. All the symptoms you talk about are very familiar to me.
    i have never met anyone else with the symptoms i have to the same degree of discomfort that i experience, that is, until i began reading all the posts. I can sympathize with all of you. And i finally realize that i am not totally alone! I have 2 major problems that have caused me varying degrees of stress over the years- PET and TMJ.

    It began a long time ago. I didn't have any ear problems at all until I was 14 years old. I went swimming in a pool that wasn't exactly clean water and ended up with an almighty bad middle ear infection. Twenty Five years ago they didn't have the antibiotics they have today' so I guess the penicillin didn't entirely get rid of the infection and it kept reoccurring and leaving thick 'gluey fluid' in the middle ear. Mainly on the left side. The pain and discomfort of blockage was devastating. Over the next few years I had several sets of grommets put in. The first few helped and then something seemed to happen to my left ear only. My voice started echoing up into my head on the left side. I felt like my ear was blocked all the time and even though i could make it 'pop' I could never get any relief from the blocked sensation! I felt dizzy and spaced out and it was 'really depressing' as no-one else could understand. My ears became very 'noise sensitive' and i found it difficult to tell what direction sound was coming from. The ENT kept trying to inflate my L eustacian tube to try and unblock it. He would thread a long metal tube down through the back of my nose and up into the ETube. It had an inflating bulb on the other end and he would tell me to swallow while he puffed air up into the ETube. This should have unblocked and cleared the ear, however, it used to make me feel extremely nauseous and dizzy. I went back to have this done many times as he said my ETubes were very tiny and they were blocking up. At one stage after I went home I felt a strange sensation in my left sinus- like it was full. I blew my nose and out of the left side came all this gluey thick amber coloured jelly like stuff. Yes, it was yukky! The L ear felt good after this and i thought maybe i'm cured howver the blocked feeling came back within 2 days. I asked the ENT to please put the grommets back in 'cause i couldn't stand the discomfort and didn't know what else to do. It never helped, so I became resigned to the fact that i would haveto live with this. Even though I looked well on the outside people would not realize how tuff it was living with this affliction. Since then I've done a lot of research....

    When I look back now I think I may have had a tendency for the PET to happen. When I was 5 years old my sister took me to live pop-concert with all the bands playing - guitars, drums etc. I remember everyone in that hall being able to tolerate the loudness comfortably, however, I began screaming with the pain in my ears and have never forgotten it. My mum had to carry me out as she tried to calm me down.
    So maybe I had the beginning of a very silght PET problem there. I would also experience dreadful sinus infections, and an extreme amount of mucous, that none of my friends ever seemed to have. When I was around 8 years old I remember having several teeth extracted and then my jaw began to click. It became very difficult to eat steak etc. So have a think back into your own health history. See if there's anything you can remember that may be related. I think my PET and TMJ began from two separate causes, although I find now when the ear is especially bad all the neck and jaw muscles clench as there is so much tension in the whole area. Anyway, enough from me for now. I have much more to tell but it will become apparent over my next posts. God bless you all. Hang in there! Good luck with your surgery on the 9th Aug, Lib. I will be waiting to hear how you go and wish you all the very best.

     
    Old 07-31-2004, 05:21 AM   #37
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi ccc123,
    oh keep telling your story please. i am very interested.
    what are all of your symptoms?
    i never had ear problems until this, i think i had regular stuff when i was a kid.
    how have you coped and managed all this time.
    i am having another thumping session in the ear right now, and feel like i am going to go mad.
    do you get the thumping also?
    lib

     
    Old 07-31-2004, 06:02 AM   #38
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by petpeeve
    Hi Lib and SCP: This is a combo note since I was reading the postings between the two of you. I just wanted to tell you that I am also sensitive to loud noises. Certain things bother me more than others--the sound of a spoon stirring sugar into a glass seems so intense and female singers vs male--seems to be more uncomfortable in the high ranges. I have gotten to a point that if I go to a movie I wear earplugs because they crank up the volume so much. I can hear the movie fine with two earplugs in but can't hear much of anything if a friend asks me a question. They know to wait until we leave the theatre and actually get back into the car where it is quiet. I went to a musical recently and fortunately I carry my earplugs with me all the time now. As soon as the female lead broke into her song I was scrambling for the earplugs. I am sure that creates some curious looks from others. TV and things around the house don't seem to bother me but when I am in a restaurant it seems that there are so many noises and that is part of the reason it bothers me. Glad to see that you are back with us SCP. I missed getting a hold of Poe today but will try next week. You also mentioned the cracking sound is audible to others--that is amazing--no wonder it drives you nuts. I don't have that but I have noticed that I have tinnitus and at night when I sleep I sometimes have to find a position where my ear isn't acting like an amplifier and picking up my heart sounds--it is loud enough to keep me awake. Doesn't seem to matter if I sleep on the affected side or not--I switch all night long but just certain positions of the neck and I can hear the swooshing. I don't notice the tinnitus or my dizziness when I am busy and moving about but I am dizzy when I sit still and am quiet. The only time I hear the tinnitus is when I go to bed and then I really wish I could shut it off. I use to have one of those mood synthesizers that had the sound of the ocean and I thought I might get one again just to create something that is a little more relaxing but has the same tone to it. Do you both feel pressure in your ear? I keep reading that everyone has some problems with their voice being loud and also the snapping noise but I haven't heard anyone say they feel pressure in their ear. When I had my ventilation tube put in it was the strangest feeling like a balloon being punctured. There was an almost instant release of pressure. That felt good after having that full feeling for so long but unfortunately it was short lived and replaced quickly by a feeling of distorted sounds. It just felt like the reverse of PET in that all the sounds were amplified from the outside vs the inside.
    hi petpeeve,
    yes pressure is terrible, swallowing makes it much worse, ooh how i hate this.
    wondering if any one has swam under water with this condition, we have a pool and i was always in until this summer to depressed and afraid of what it may feel like if i go under.
    i am to afraid to try the vent tubes i certainley dont want to make matters worse.
    well the count down is on....10 days...i am terrified...never had surgery before, asking everyone for good thoughts and prayers.
    lib

     
    Old 07-31-2004, 12:52 PM   #39
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi ccc123---welcome and thanks for your feedback--25 years--oh my gosh--I worry that I will have to cope with this for the rest of my life--sure has made an impact on it already and lessened the social interaction

    I wanted to ask you a question because I am confused about whether or not you have PET or ETD. You said that your voice started echoing and that your ear felt blocked all the time. you also mentioned feeling dizzy and spaced out. You also said you were noise sensitive. Those are all the same things I experience but I wonder if we don't actually have the opposite problems but just the same symptoms. You said the ENT kept trying to inflate your ET and unblock it but with PET it isn't blocked--it is stuck in the open position and all the treatments aim at blocking it or closing it. And also the PET condition is dry--no fluid buildup or glue ear like they call it. Did your doctor ever give you a specific diagnosis? It is confusing for patients when several ENT doctors have opposite advice but I guess it is confusing to doctors too since the symptoms sometimes are similar. But I thought doctors could look in the ear and tell if there was fluid behind the eardrum. I had several ENT's look in my ear and say there was no fluid buildup or redness from infection and yet one suggested decongestants and the other said absolutely not. One said ventilation tubes would help and the other said it wouldn't do anything. What have you tried as far as treatments in your 25 years and does it affect your speech? I find the autophony makes my own voice so loud that I limit myself to a whisper or very close conversation with one person. Since you have had PET or ETD for 25 years I hope you will share some of your coping strategies with the rest of us. Have you ever had a cat scan or MRI. I think you mentioned the doctor looking at your ET with a scope so he must have seen they were blocked. I had the endoscope test several times and the doctor always said the ET was floppy or wide open and not shut like it should be normally. Send suggestions.

     
    Old 07-31-2004, 05:52 PM   #40
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi lib, hi petpeeve,great to hear from you. I think this forum is a really great idea and it is sooooo comforting to be able to share the symptoms that we have in common. Who knows maybe we will all find the answer to it together.
    When I had the middle ear infections as a teenager, the antibiotics were not completely clearing the infection and this would keep reoccurring, I then would try course aftrer course of other antibiotics but the bugs probably became resistant to them as maybe each course was too short. I also lost a stone in weight due to the stress of never feeling well and was depressed. Fluid would be left behind after each infection and i think my ET tubes became chronically inflamed setting up the way for ETD.The grommets tubes initially helped. I had them under GA (I chose this option rather than without GA). It was quite OK having he tubes, although I needed a few days off work as it made me feel a bit giddy. That settled down. However, the fliud would come back and then I would need them again. In between times when I didn't have the tubes the ENT would inflate my Left ET tube only and not the right(as previously mentioned) and told me to keep doing valsalver's technique(where you hold the nose and blow). This became extremely uncomfortable as I would hear the fluid stick, gurgle and squelch. However, many times he would say he couldn't see any fluid and I couldn't figure out where the poppping and squelching noises were coming from!It was very disturbing and I used to cry a lot. I also then made the decision that I would haveto swap to only working part-time. I was 21 at this stage. The ENT would tell me that my prob was very unusual and that this usually only happened to children as their ET tubes are shorter and narrower and therefore prone to blocking. However I think he used to help me cope by saying after each weekly appt, 'Don't worry, we're going to get you better! I would go away thinking, perhaps this nightmare will come to an end oneday so that I can get on with my life and I'll find out what is causing it. There were definitely no infections there, and I was having to deal with more and more discomfort with my voice echiong in my head when I spoke.Socially, I would findthis very difficult. I also lost weight again (about 20lbs) and was very thin. However, I did meet the man (who is still my husband) and after some time I was able to share this story with him. Although he would never fully understand what I was going through he would always be there to support me. We're still together after 20 years-(I will say how we coped another time).
    One night I was so uncomfortable with my ear. Difficulty sleeping again. Pulsating, rushing noise, feeling anxious, hearing muffled, dizziness, voice echoing uncomfotably louder than usual. I tried to inflate my ET tubes holding my nose and this very loud noise felt like the air was going strongly up into my ear. My eardrum felt 'saggy' and it kept popping and make other noises. I said to my husband I'm very worried put your ear next to mine and i'll bet you can hear this noise. He could and loudly. He said don't hold your nose and blow anymore or you may do some damage. This frightened me. It was then i decided to research the problem myself. No internet 2o years ago, so went to the library of a major teaching hospital and spent a couple of days pouring through journals and books(I had had 1st baby at this stage and symptoms exacerbated).

    There it was in a journal- all my symptoms- how could this be! Ihad seen 4 ENT docs by this time and no-one had mentioned PET. My theory is that I went from having ETD where the ET tube was intermittently patulous and due to the forcing of my ETube open by the ENT stretched the ET tube and made it floppy. Also the losing and gaining of weight was a contributing factor. Also I think oestrogen levels in my body were high as I had been using contraceptive pill on and off for eight yrs.TMJ was also emerging as a bigger and bigger prob, and I'm sure it was due to the stress as i would clench with the
    discomfort (more on TMJ treatment later).
    Went to another ENT and told him my story. He wanted to rule out tumours etc so he did a cat scan. All clear! (I'm 30 yrs old at this stage). Did a nasal endoscopy and observed the opening and closing of L Etube while i said certain letters of the alphabet.He said this was OK. He had never made a diagnosis of PET before so he got the audiometrist to do some pressure tests because I said i could Feel the air going right up into my ear when I was breathing. Bingo! PET diagnosis based on this and my detailed description of the disturbing symptoms. Internet had just come into use by doc's so together we looked up possible treatments. He said to me 'can you live with this syndrome?' I said 'well I am, aren't I but life could be a whole lot better!'
    There were some possible treatments. Grommets - I already tried this after the ear had turned patulous but it made made the echoing worse in the end (apparently they help some people with PET- it's a very simple op and one I would try first. Only helped me at start with fliud).
    The Eustacian tube catheter, pioneered by I think, Prof Bluestone was another possibility (this ENT had never done this op before).
    Last option was injection of dissolvable Gelfoam into base of opening of ETube. I opted for this as it was reversible and would desolve in 6 weeks. I probably wouln't have that again as it felt uncomfortable. It desolved and i was back to square one. Decided not to go ahead with Bluestone's catheter until I heard more about it or if they invented something else.
    ENT suggested I try and put on weight and see if this would alleviate symptoms. This was not the most appealing idea! Although, after having a second baby an extra 10 kilos remained with me. Something strange! The symptoms were more tolerable on some days. I had days where it was not as disturbing. It didn't completely feel better but it was a bit more tolerable. Also no more attempting valsalver technique as it will only stretch ETube more. I have kept this weight on for last 10 years and everything going pretty OK! Didn't have to think about the symptoms quite as much.
    However, got a bad sinus infection 6 months ago and it travelled straight up int my middle ear. Took double course of Augmentin tabs. The symptoms are now bad again. I am looking for a solution. Heard about 'patulend' drops. Looked up internet and found link to this healthboard (which is wonderful). I saw another ENT a couple of months ago and he has referred me to a professor who only treats ears. I'll see him in 6 weeks time. Until next time, I still have more to tell. Bye

     
    Old 07-31-2004, 06:22 PM   #41
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    oh.....do tell more i love all of this, but please tell us how you and your husband coped with this, we are having a terrible time. thanks lib

     
    Old 08-01-2004, 12:51 AM   #42
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    dear lib, when the ENT doc did the audiometry tests to see if my ETubes were overly patent or patulous he told me that both of them were. This was also confirmed by 2 more ENT specialists after that. However, even though they both tested positive for PET the L ear is extremely more symptomatic and bothersome than the right. So I myself feel that the L ear is really wide open. When I move my head up and down there is a clicking, snapping squelching noise that I presume is the ETube with air trapped in it. At the moment it feels really uncomfortable and 'swollen'. If I press hard behind my L jawline it is the same noise like I am trying to push the ETube closed, but this is never possible. This would have to be the one thing that husband has especially noticed me doing over the years and then he says to me, your ear is giving you a lot of trouble today isn't it? He also observes that I tend to get puffy around the eyes and unfortunately it also made me extremely irritable, frustrated and feeling shakey and nervous. I will get the occasional day at the moment where it is not quite so bothersome but I can never predict when this will be. I think rainy damp days seem to be better when there is a lot of moisture in the air. Also it tends to feel a bit better if I am getting a cold or have successive bouts of sneezing. This irritates the ETube and temporarily makes it swell a little. I really feel for you as you have it in both ears. Is it as bad in each ear or is one better than the other? I heard of somene on a different forum inhaling finely ground pepper! I was so desperate the other day, 'cause I had to entertain some visitors that I thought I would give it a go!I thought how to administer this ? I put some on a teaspoon and gave three large sniffs in. At first, not too bad so I'll do a bit more and make sure that as much pepper goes in as possible. For a couple of minutes not too bad and then the burning! Wow it was certainly right at the back of the nose. I did experience some initial sneezing- but this was OK- and burning. THe area certainly would have been inflamed and may have caused the tube to close a little. I mentioned to my husband what I had done as he commented that my nose looked very sore on oneside! I don't think he thought it was such a great idea but when I was in such unrelenting discomfort anything is worth a try to see if it works. I have not mentioned this one to the ENT! On a number of occasions I have used the irritant drops they prescribe. Have you tried these? The ones the chemist makes from the ENT doc's script is 'dextrose in glycerol'. My ENT wants me to try these again before I go and see the prof in August. The drops are quite thick, however, and make me feel a bit nauseated. I don't like using these. I guess the best way I have found to cope over the years is to try and modify my lifestyle. This syndrome often leaves me feeling very fatigued- muffled hearing, high pitched tinnitus and constant discomfort of feeling like my ETube is swollen or even a funny tiklish feeling. It's really a strange situation as other people have no idea how you are experiencing this. Also I find having to talk causes the resonating and vibratory effect and I can't hear my own voice properly especially in background noise. THis has caused me to be hesitant about going to social occasions as it proves embarrassing if I am talking too soft or too loud! I'll quite often say to my husband 'you'll haveto tell me if my voice is too loud or soft so I can adjust it'. My ear is extremely sensitive to loud noise. Unfortunately my husband is a 'music nut' and likes nothing better than to drive with the music right up high or listen to it at home at 'top volume'! This is problem as i haveto ask him to turn it down all the time and play it loud when I'm not around.I have a lot of hobbies that I like to pursue at home and have joined group activities outside home where I don't haveto talk a lot. My hubby is pretty patient with it all and says to tell him if I am having a really bad day. I enjoy company so this has had a big effect on my life. My kids are old enough now that I am trying to get them to understand.For most other people i always tend to tell them i have a hearing problem. My speech is often hard to understand and people will ask me to repeat things. This can be annoying.Also when i talk people will often say I have a 'husky little voice'. Do people say your voice sounds different lib? Bye now.

     
    Old 08-01-2004, 05:28 AM   #43
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    dear lib, when the ENT doc did the audiometry tests to see if my ETubes were overly patent or patulous he told me that both of them were. This was also confirmed by 2 more ENT specialists after that. However, even though they both tested positive for PET the L ear is extremely more symptomatic and bothersome than the right. So I myself feel that the L ear is really wide open. When I move my head up and down there is a clicking, snapping squelching noise that I presume is the ETube with air trapped in it. At the moment it feels really uncomfortable and 'swollen'. If I press hard behind my L jawline it is the same noise like I am trying to push the ETube closed, but this is never possible. This would have to be the one thing that husband has especially noticed me doing over the years and then he says to me, your ear is giving you a lot of trouble today isn't it? He also observes that I tend to get puffy around the eyes and unfortunately it also made me extremely irritable, frustrated and feeling shakey and nervous. I will get the occasional day at the moment where it is not quite so bothersome but I can never predict when this will be. I think rainy damp days seem to be better when there is a lot of moisture in the air. Also it tends to feel a bit better if I am getting a cold or have successive bouts of sneezing. This irritates the ETube and temporarily makes it swell a little. I really feel for you as you have it in both ears. Is it as bad in each ear or is one better than the other? I heard of somene on a different forum inhaling finely ground pepper! I was so desperate the other day, 'cause I had to entertain some visitors that I thought I would give it a go!I thought how to administer this ? I put some on a teaspoon and gave three large sniffs in. At first, not too bad so I'll do a bit more and make sure that as much pepper goes in as possible. For a couple of minutes not too bad and then the burning! Wow it was certainly right at the back of the nose. I did experience some initial sneezing- but this was OK- and burning. THe area certainly would have been inflamed and may have caused the tube to close a little. I mentioned to my husband what I had done as he commented that my nose looked very sore on oneside! I don't think he thought it was such a great idea but when I was in such unrelenting discomfort anything is worth a try to see if it works. I have not mentioned this one to the ENT! On a number of occasions I have used the irritant drops they prescribe. Have you tried these? The ones the chemist makes from the ENT doc's script is 'dextrose in glycerol'. My ENT wants me to try these again before I go and see the prof in August. The drops are quite thick, however, and make me feel a bit nauseated. I don't like using these. I guess the best way I have found to cope over the years is to try and modify my lifestyle. This syndrome often leaves me feeling very fatigued- muffled hearing, high pitched tinnitus and constant discomfort of feeling like my ETube is swollen or even a funny tiklish feeling. It's really a strange situation as other people have no idea how you are experiencing this. Also I find having to talk causes the resonating and vibratory effect and I can't hear my own voice properly especially in background noise. THis has caused me to be hesitant about going to social occasions as it proves embarrassing if I am talking too soft or too loud! I'll quite often say to my husband 'you'll haveto tell me if my voice is too loud or soft so I can adjust it'. My ear is extremely sensitive to loud noise. Unfortunately my husband is a 'music nut' and likes nothing better than to drive with the music right up high or listen to it at home at 'top volume'! This is problem as i haveto ask him to turn it down all the time and play it loud when I'm not around.I have a lot of hobbies that I like to pursue at home and have joined group activities outside home where I don't haveto talk a lot. My hubby is pretty patient with it all and says to tell him if I am having a really bad day. I enjoy company so this has had a big effect on my life. My kids are old enough now that I am trying to get them to understand.For most other people i always tend to tell them i have a hearing problem. My speech is often hard to understand and people will ask me to repeat things. This can be annoying.Also when i talk people will often say I have a 'husky little voice'. Do people say your voice sounds different lib? Bye now.
    hi ccc123,
    no one has said anything about my voice, but i dont talk as loud becaue its so disturbing. i hate hearing and feeling my eardrums move in and out.
    both ears are about the same the right one is a little worse and i have a snapping sound that comes from behind my nose its aweful.
    i did try the hormone nose drops but they did not help at all.
    yes i get irratable and shakey, i am severley depressed. i am having surgery next monday by a dr in boston so i pray this is the answer to this problem, its very expensive to travel there but i dont think i can live like this much longer. i will also consider closeing them, were you asleep for the injection or did they do it while you were awake?where was that done? where do you live?
    thanks lib
    also the bluestone method, would you have to have grommets with that?
    do you or did you work through all of this?

    Last edited by lib; 08-01-2004 at 05:49 AM.

     
    Old 08-01-2004, 03:11 PM   #44
    petpeeve
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib: checking in to see what the fellow PET sufferers are doing seems to be a daily ritual now. It is nice to know that someone else wakes up with the same problem each day although I hate to see anyone else suffer with this. It will be nice after your surgery if you can wake up and not feel pressure in your ears. I notice when I get up that the pressure comes back almost instantly. I never seem to feel much relief when putting my head down and if it improves while sleeping I am not awake to enjoy it. It comes back as soon as i get up. Do you have any period of relief early in the morning or any relief when putting your head between your legs?

    You mentioned that you have terrible ear pressure too and that it is worse when you swallow. I don't experience that. I don't get any relief from swallowing or yawning like a normal person/normal ET would feel but I don't feel the pressure go up when I swallow. I hear a click when I swallow or yawn but no pressure change.

    As far as swimming there is some evidence that it helps because of the chlorinated water. I think the premise of the premarin nose spray and the fda clinical drug study is to administer something that causes swelling of the ET. In one of the PUBMED articles I read, I believe it was there, a case was cited where a man with PET had observed some relief when swimming in chlorinated water frequently and that is how some of the studies got started. I have a pool and didn't try it last year because I didn't want to do it at the same time that I was doing the Santa Barbara drug study but will give it a shot this summer. As far as swimming I have done it since having the PET--not enough to test whether the chlorinated water would help but enough to know that swimming didn't bother my ear at all. going under the water didn't bother my ear at all. I routinely go under the water when I am in the tub every night. I do that when I am washing my hair and I don't feel any discomfort then or afterwards.

    As far as your surgery--since you will have the IV anesthesia instead of general gas--you will probably not remember a thing. I had the IV anesthesia before for some other kind of surgery and all I remember is the the IV needle in my arm being started which was easy and then waking up an hour later. Sometimes they even give you a little nitrous oxide (laughing gas) through a mask before they start the IV--that makes you feel happy and relaxed. Try not to worry-- I am sure that Dr. Poe from all the things you have said about him being considerate and a good listener is planning to make you unaware and out for the whole procedure. IV anesthesia is actuallly easier on your body than the general anyway.

    You mentioned that vent tubes are probably not needed for the alloderm transplant surgery unless they overcompensate but if they need to put some vent tubes in ask Dr. Poe about the different kinds. My ENT had told me there were all sorts of sizes from small to large and the larger the more likely scar tissue would form. My doctor opted to put in a cone shaped tube that is the smallest available and used primarily in children. he said it was the one that caused the least amount of cutting in the eardrum and thus less scar tissue. It is also the kind that comes out on its own without you even being aware of it in about 3 months. I actuallly had to go in and have him check to see if it had fallen out because I couldnt' tell whether it was in or not. I wanted to be sure before I started swimming again. The tube didn't help me anyway but that is because it should never have been probably tried anyway. From what I have read the tubes are only used in PET patients who have that horrible sensation of hearing every breath in and out and the feeling that their eardrum is moving. In those cases the vent tube helps equalize pressure and does help. I didn't have that symptom at the time so it was not indicated but ...... I had that symptom in the past and that would have been the time to put the tubes in. You said you have some of that sound on your eardrum --is that correct? You might be a good candidate but since you are having the alloderm transplant you probably won't even need it. I read ssc123's note about some sort of operation with a disolvable material--haven't heard of that--will have to ask her more. I did all sorts of searches on alloderm transplants but everything is about cosmetic surgery. Any hints for where I can find more info--maybe Poe's office can send me some handout. I did searches on alloderm implants for ET and all sorts of other wordings but almost everything was cosmetic related. So the cadaver tissue implant must be yet another form of sealing up the ET

    Did you say that nathan had the same surgery as you with Dr Poe and had complete disappearance of his PET? I searched on his name and read all his notes and he talks about having the procedure done but I couldn't find anything specific where he said it had reversed the PET. He mentioned that he had the spasms and then botox injections in the roof of his mouth ? and then the PET came and Dr. Poe fixed it. I will keep searching.

    I am not working right now. It would be hard to do what I used to do--any job with people and talking would be difficult. Seems like the best work with this kind of condition is something where you are in a room by yourself and no talking involved and the ability to keep the room quiet and no music. That could be limiting.

    Your big day is coming and I am sure all of us actively checking into the boards here will be thinking of you and keeping you in our prayers for a complete recovery. It would be so exciting and encouraging to get notes from you on how you are doing all sorts of social and talking things!!!! PP

     
    Old 08-01-2004, 03:41 PM   #45
    petpeeve
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi cc123--its petpeeve---I laughed when I heard about your pepper experiment not only because it was funny but because I have been so desperate to find a way to cure or reduce the symptoms of PET that I said I was going to invent my own concoction. After reading all the medical journal articles about what research is being done I found that the ingredients all have the common goal of causing irritation and therefore swelling of the ET. Pepper sounds like it would work as well as the chlorine that has been used. I figured every time I ate sushi and had that green horseradish, wasabi that it burned and caused congestion in my throat so why not my nose. I figured I could whip up some horseradish spray and sniff it in--afterall we eat it so it can't be anymore dangerous than the other experimental things we are stuffing up our noses. I used to think people were ridiculous to resorting to anything to try to find a cure but once we are afflicted ourselves we start to understand that desperation. Let me know if your pepper works-haha I also have not told my ENT about this but I will be the first to share it with any of you if it works!! If it wasn't for the indigestion I would try more spicy food to see if it would affect the ET.

    I never heard of the 'dextrose in glycerol' drops-- I have taken the premarin and the PIMA (potassium iodiode immersion) and the FDA drug study drops from the Ear Foundation in Santa Barbara. No improvement with any of them unfortunately. But I would recommend them all just because you never know what will work for you. If you want to see what other things I have tried go back and click on petpeeve and there is a way you can pull up all of my posts together. You said you were new to the boards so I wasn't sure if you discovered how to do that yet. That really helps sometimes to follow what one person is saying--I did that with both you and lib because we all seem to be pretty active in our posts. Get a good cup of tea when you read lib's posts--she is a veteran and has a lot of them. Let's hope after her surgery she is posting she is leaving us and has joined the ranks of the normal ET people.

    You mentioned feeling fatigued and I often do too. I start the day out with pressure and it is there at the end of the day too. Even though I don't have any physical pain I think the constant fullness and ear stuffiness wears me down. I don't have muffled hearing--so far my hearing tests are very good. I do have the high pitched tinnitus and I can hear a high pitched sound if I press on the neck area below my ear--sounds just like that high pitch you hear during a hearing test.

    I also have that feeling of not being aware of my voice and how it sounds in a group setting. I am more aware of the volume I am projecting if I am at home and it is a quiet environment. But when I am out in a public setting I sometimes talk too soft or too loud. My husband asked me why I would speak too loud if speaking is actually uncomfortable and the only answer i could really provide is that it all sounds the same--if I speak softly it is too loud in my head and if I speak at a normal or loud level it is still too much noise in my own head--I can't really tell the difference except that peole are not saying "what--can you say that again?" The only thing that is comfortable is if I whisper at a very soft and kind of unvibrating level but that is too soft for anyone to hear.

    At first i wasn't sensitive to sounds but in the last year I have developed that and wear earplugs occasionally. That seems to cushion the eardrum and lessen the noise of outside noise and my own voice. I tend to speak even softer when I have the earplugs in--I don't know why but I guess I pick a level that is comfortable for me and that happens to be a level no one can hear. It is just easier sometimes to shut up. I miss being a socoial butterfly but going out and trying to carry a conversation sounds like someone shouting in my ear all day. My friends try to be understanding and say they just want to see me and I don't need to talk but that frustrates me too. Who wants to go and sit like a lump in the corner. If you can't join in it feels like you are being ignored. I am sure it is hard for others too because we look normal and can walk around and participatge in other ways. People tend to stop talking to you if you can't answer. I have been in situations where the waiter will ask my friend what I want because they think if I can't talk I can't hear.

    I have done what you described and that is find things that are entertaining that are at home. I have a lot of hobbies and crafts that I can do by myself or with just one other person in a home setting. It isn't perfect but it is enjoyable vs putting myself into settings where I need to write on a piece of paper.

    I too have been told that my voice is very low. I went in once to see the ENT when this was a fairly new problem because I was hoarse and I was afraid I had throat cancer or thyroid or something else. he felt that I was hoarse because I was using my voice differently because of the echo/autophony. For about a month or more I basically lost my voice but have adjusted since then. i still speak in a low kind of husky voice because it seems to cause less reverberation and discomfort. i just tell my friends I am taking testosterone shots--ha I did try a amplifier system that public speakers use. I got it at Radio Shack or someplace similar. i thought it might help me when I was out in public or a restaurant but it didn't work because you have to at least speak at a normal volume for it to pick up the vibrations of the voice in order to amplify it. so it worked in the sense that others could hear me but didn't solve the problem of my own voice sounding loud to me. I wasn't motivated to use it because I still had the loudness in my own head. Back to silence.

    You mentioned having some sort of procedure with an implant that is dissolvable--temporary? Did that provide any relief and for how long? Was that the Bluestone procedure? I will go back and look at your notes again and see if I can find anything online until I hear from you.

     
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