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    Old 08-01-2004, 03:44 PM   #46
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by petpeeve
    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
    hi pp,
    no i dont get any releif when i get up, in fact its just as bad, i dont understand that.
    your lucky to not be working, its torture, i work in a salon and i have to talk, i am lucky in the fact i have been there forever and most of my clients know what i am going thru, in fact some have even offered to take me to boston.
    thanks for the info on swimming, yes even dr poe said it could help swell the tissue but i am so depressed i dont even have the energy to do that anymore.
    from what i understand no one has needed a tube in the ear, but i will find out.
    yes all the alloderm sites are cosmetic, but you learn what it is i think a co named lifecell explains it. but its the same idea.
    nathan had an injection of a substance that causes scar tissue to form, he is much better, no pet symptoms. just the spasms.
    i am to afraid to try the tubes, i have heard they can make things much worse so i dont dare.
    i wonder, you said things were better with the breathing noise but you did not know why, do you think it was the gaining wieght?
    thank you for the prayers i really need them right now. libby

    Last edited by lib; 08-01-2004 at 03:46 PM.

     
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    Old 08-01-2004, 04:21 PM   #47
    petpeeve
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib: We must be living online at the same time because i just finished doing my usual long note and was going to sign off and saw your response. Thanks.

    Yes, I am lucky to not be working right now. I decided if I could not work it would be better so I didn't have to talk. There are occasions when I have to do a full day of errands and need to talk to people or I plan a get together with a girlfriend. Each of those events is fun (just getting out of the house is fun--I tend to avoid social because of the talking). But at the end of the day my ear pressure feels much greater. I don't know if you ever have the opportunity with your kind of job to have a day of NO TALK but that is one of the things I have found that helps. There is something about the movement of air through the ET and on the eardrum that makes me feel worse. Of course silence is hard and I am still working on adjusting my lifestyle but the days that I have by myself where I can occupy myself all day with no talking seem to be much better than the talking days. i can still listen to the tv and I am fine. it is just the noise created by talking that bothers my ear by increasing pressure. I am sensitive to outside noises but they don't affect the pressure I feel on the ear drum/et

    I understand when you say you don't have the energy to do the swimming. I sometimes feel lethargic from all the effort that goes into dealing with this disorder. I try to eat well--I love to cook and I take vitamins and do as much as I can for my health but I just seem to run out of steam earlier than I used to before this diagnosis. I get frustrated with this PET but I don't really get depressed--I think that is just my nature though--I don't ever remember feeling depressed except when someone died--that may just be hormonal or chemical for each of us. Have you tried anything to help with your moods? I have seen a lot of posts where people are depressed and they seem to get some relief with medicines--there is so much available now. You may not even need it soon. If this operation goes as we all expect you will be hard to contain with your new found happiness. Just keep telling yourself it is just temporary and the cure is around the corner. I can't wait to hear from you. If I lived around the corner I would volunteer to help out afterwards in any way I could. It feels a little like a sisterhood with the notes we all exchange. I can't tell but it sounds like we all are about the same age and have families and longstanding problems. That seems to bond us more than people that have things that resolve in a short time.

    thanks for the alloderm info again--I will go back and read more--certainly sounds like the best option from all the surgical techniques that have been tried and Poe sounds like the leader in the field. And he has done the procedure before. I had one ENT suggest a type of surgery but he hadn't done it before--knew someone who had done it once but couldn't tell me much more than that--couldn't let me talk directly to the patient but "shouldn't be a problem"------my response was "I don't think so.."
    I will call Poe next week for more info.

    When I had that tube put in my one ear I felt relief immediately. It seemed to be like air swooshing out and as I drove home from the office I felt like I had the right pressure in my ear for the first time in years. The problem was it didn't last. Sounds were a little distorted like I had a hearing aid on that was turned up too loud. But it wasn't uncomfortable--it was just different than before. it was irritating in the same degree as the PET but just from the outside now. But since it was such a tiny tube it eventually fell out and the ear pressure returned from PET. The procedure to put it in was pretty easy so I wouldn't be afraid to do it. They do it all the time with kids. Mine was just under local--they put some anesthetic on the ear drum so you don't feel the tube going in. I didn't feel the tube being put in at all and i didn't have any pain or discomfort afterwards but the q-tip that they use to put the anesthetic on the ear drum is what was uncomfortable. It wasn't painful but since they touch the eardrum it is like a giant band playing music in your ear. That only lasts a few seconds and is kind of a shock because we never touch the eardrum. But once the loud sound of being touched was over I didn't feel a thing. The anesthetic feels like it is hot or kind of burns for a few seconds but on a scale of procedures it wasn't much worse than a pap/pelvic or mammogram. I know they do it under general for kids because they won't hold still and because they usually have an infection already and pulling on the earlobe might make them squirm.

    I had that crazy breathing noise for about 6 months or more and it really drove me nuts and exhausted me because every single breath sounded like a roaring noise in my head. If I sniffed my nose the eardrum seemed to be sucked in just like that feeling when someone shuts the window in a car and you feel a suction on your ears. I really don't know why it went away. My weight is always pretty stable. I am up or down 5 pounds all the time but am tall. I gained weight on the advice of one doctor but no difference. Just felt bloated so lost it again and feel better overall--no difference in my ear either way. I think I mentioned before that one of the things i do is try to drink lots of water and avoid tea and coffee and liquor that dry me out. I noticed once before a blood test where I had to avoid food and drink for 8 hours that the ear pressure was worst and it went right along with feeling thirsty. I don't use any nose sprays anymore for allergies or stuffiness. No difference that I can tell whether i use them or not but if my nose is clear I do hear that rushing sound sometimes so maybe it is better that my nose is stuffy on the side of the PET. Maybe that is why I don't hear the sounds as much. Might be worth a try to put some cotton in your nose on the affected side and see if it actually stops those respiratory noises. I am stuffy on both sides but mostly on the side with PET--can't getmuch air through that side at all and I breath through my mouth a lot. One doctor suggested nasal surgery to open up airways more but I am too preoccupied with the PET to do anything else--even a blocked nose for life is nothing in comparison.



     
    Old 08-01-2004, 04:55 PM   #48
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by petpeeve
    Hi Lib: We must be living online at the same time because i just finished doing my usual long note and was going to sign off and saw your response. Thanks.

    Yes, I am lucky to not be working right now. I decided if I could not work it would be better so I didn't have to talk. There are occasions when I have to do a full day of errands and need to talk to people or I plan a get together with a girlfriend. Each of those events is fun (just getting out of the house is fun--I tend to avoid social because of the talking). But at the end of the day my ear pressure feels much greater. I don't know if you ever have the opportunity with your kind of job to have a day of NO TALK but that is one of the things I have found that helps. There is something about the movement of air through the ET and on the eardrum that makes me feel worse. Of course silence is hard and I am still working on adjusting my lifestyle but the days that I have by myself where I can occupy myself all day with no talking seem to be much better than the talking days. i can still listen to the tv and I am fine. it is just the noise created by talking that bothers my ear by increasing pressure. I am sensitive to outside noises but they don't affect the pressure I feel on the ear drum/et

    I understand when you say you don't have the energy to do the swimming. I sometimes feel lethargic from all the effort that goes into dealing with this disorder. I try to eat well--I love to cook and I take vitamins and do as much as I can for my health but I just seem to run out of steam earlier than I used to before this diagnosis. I get frustrated with this PET but I don't really get depressed--I think that is just my nature though--I don't ever remember feeling depressed except when someone died--that may just be hormonal or chemical for each of us. Have you tried anything to help with your moods? I have seen a lot of posts where people are depressed and they seem to get some relief with medicines--there is so much available now. You may not even need it soon. If this operation goes as we all expect you will be hard to contain with your new found happiness. Just keep telling yourself it is just temporary and the cure is around the corner. I can't wait to hear from you. If I lived around the corner I would volunteer to help out afterwards in any way I could. It feels a little like a sisterhood with the notes we all exchange. I can't tell but it sounds like we all are about the same age and have families and longstanding problems. That seems to bond us more than people that have things that resolve in a short time.

    thanks for the alloderm info again--I will go back and read more--certainly sounds like the best option from all the surgical techniques that have been tried and Poe sounds like the leader in the field. And he has done the procedure before. I had one ENT suggest a type of surgery but he hadn't done it before--knew someone who had done it once but couldn't tell me much more than that--couldn't let me talk directly to the patient but "shouldn't be a problem"------my response was "I don't think so.."
    I will call Poe next week for more info.

    When I had that tube put in my one ear I felt relief immediately. It seemed to be like air swooshing out and as I drove home from the office I felt like I had the right pressure in my ear for the first time in years. The problem was it didn't last. Sounds were a little distorted like I had a hearing aid on that was turned up too loud. But it wasn't uncomfortable--it was just different than before. it was irritating in the same degree as the PET but just from the outside now. But since it was such a tiny tube it eventually fell out and the ear pressure returned from PET. The procedure to put it in was pretty easy so I wouldn't be afraid to do it. They do it all the time with kids. Mine was just under local--they put some anesthetic on the ear drum so you don't feel the tube going in. I didn't feel the tube being put in at all and i didn't have any pain or discomfort afterwards but the q-tip that they use to put the anesthetic on the ear drum is what was uncomfortable. It wasn't painful but since they touch the eardrum it is like a giant band playing music in your ear. That only lasts a few seconds and is kind of a shock because we never touch the eardrum. But once the loud sound of being touched was over I didn't feel a thing. The anesthetic feels like it is hot or kind of burns for a few seconds but on a scale of procedures it wasn't much worse than a pap/pelvic or mammogram. I know they do it under general for kids because they won't hold still and because they usually have an infection already and pulling on the earlobe might make them squirm.

    I had that crazy breathing noise for about 6 months or more and it really drove me nuts and exhausted me because every single breath sounded like a roaring noise in my head. If I sniffed my nose the eardrum seemed to be sucked in just like that feeling when someone shuts the window in a car and you feel a suction on your ears. I really don't know why it went away. My weight is always pretty stable. I am up or down 5 pounds all the time but am tall. I gained weight on the advice of one doctor but no difference. Just felt bloated so lost it again and feel better overall--no difference in my ear either way. I think I mentioned before that one of the things i do is try to drink lots of water and avoid tea and coffee and liquor that dry me out. I noticed once before a blood test where I had to avoid food and drink for 8 hours that the ear pressure was worst and it went right along with feeling thirsty. I don't use any nose sprays anymore for allergies or stuffiness. No difference that I can tell whether i use them or not but if my nose is clear I do hear that rushing sound sometimes so maybe it is better that my nose is stuffy on the side of the PET. Maybe that is why I don't hear the sounds as much. Might be worth a try to put some cotton in your nose on the affected side and see if it actually stops those respiratory noises. I am stuffy on both sides but mostly on the side with PET--can't getmuch air through that side at all and I breath through my mouth a lot. One doctor suggested nasal surgery to open up airways more but I am too preoccupied with the PET to do anything else--even a blocked nose for life is nothing in comparison.


    hi pp,
    i am 34, i have a 9 year old who likes to talk, this pet is ruining my life from every angle. my nose gets blocked all the time but does not change the pet for me. i wish there were easier answers. i hope you do call poe, be prepared to wait, hes very popular.
    i live on xanax and sleeping pills right now, i wish i was not depressed but its devestating. i also have other symptoms like the snapping in my face others do not have.
    i wont try tubes, i have heard it can make pet worse, i cant afford that.
    keep prayin lib

     
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    Old 08-01-2004, 07:37 PM   #49
    ccc123
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    Cool Re: for the undiagnosed dont forget these things as most drs dont bother

    dear lib, I live on the eastern coast of Australia so all of my surgeries have been done here. I have had 4 sets of grommets. The first three helped when the ET was dysfunctional as gluey fluid was stuck behind the eardrum. Even though it was mainly the L ear that was bothersome they always put one in the R ear as well. I had the choice between GA or local. I guess I chose GA' cause I was Young and nervous. But it can be done under local and that would be OK. The 4th set of grommets were put in at my request. The ENT couldn't see any fluid but I used to feel there was still extreme pressure there and it was driving me mad. Unfortunately as I discovered later the ear had gone from being a ETD where it was opening and closing dysfunctionally to have now flopped open all the time.I had a large sudden weight loss before this due to the stress.It took 10 yrs going from ENT to ENT before I discovered the phenomena myself and asked the 5th ENT to test for it.

    As in my previous post this is where the ENT came to making a decision about what to do. I tried the 'Gelfoam' first (I used to have info on this from a book- you may find it on the net. This was only to be a temporary test to see if I would find it comfortable. I had a GA for this. THey didn't need to put in a grommet because apparently the dissolvable gelfoam was porous and some air would be able to pass around it. Gelfoam is used for other surgical procedures as well. It dissolved in 6 weeks like it was supposed to. I didn't feel any great relief from when it was in. I think a grommet would have helped as well when the foam was in as I felt it was plugged up. I haven't heard of ENT's using Gelfoam anymore. This was about 12 years ago.
    The next step would have been to have the eustacian tube catheter. ( I think I read on 'simple request.... re- Maggie-Jane p.3 that this was the procedure she had). THis would have required a grommet to allow for air to get in and out of the middle ear. The procedure involves putting a catheter that is filled with a substance into the ET. This would completely block off the ET tube. Maggie had hers under local and said it was quite simple. My ENT hadn't done this before or even heard of it! It was pioneered by Professor Bluestone In USA and my Doc contacted him about it.I decided not to ahead with it and wait for anything new to be invented. This forum is wonderful because we will be able to rely on our own personal testimonies about how these procedures affect us and their success. I am really pleased you have found such a caring and personable ENT in Doc Poe. He sounds wonderful and I know he will take really great care with you. (I wonder why he has such an interest IN PET- sometimes health professionals develop a special interest in health issues when someone close at hand is affected). Every few years now I go and see an ENT. They check my hearing. Funny thing is, it usually tests pretty good, so I am very thankful for that (however to me it feels like my hearing is muffled and when I am out in noisy situations I feel disconnected to my surroundings).Just the other week we went to a live singing concert. THere was a very excited audience there. At the end of each song they would clap and scream. This was torture for me, however I remembered this was a big prob at another concert I took my kids to and I had my Industrial Strength Earplugs to put in. Thank goodness!No-one else seemed bothered by the noise at all- but this was severe pain for me. My supposed better R ear was affected even worse than the bothersome left.
    I am a registered nurse. I beagan my training whilst I was young and hoped that my ear probs would go away or at least I might have an increased chance of getting some help as I would be closely affiliated with the med. profession. I finished my 3 yrs training but used to get very fatigued so once registered had to swap onto just pat-time work from then on. This was one of my lifestyle adjustments as I was having to have the grommets put in several times, in too much discomfort, and needed to get plenty of rest. Also as with nursing as with hairdressing it is constant talking which used to completely drain me. Everyone used to say how tired I looked all the time. Gradually decreased my work load outside home to just one day a week and then went onto have kids. Have not worked outside home since then as I get tired and the autophony. However, I have studied by distance education and now help kids one-on-one with reading and craft at home. This is quite successful in a meaningful way. It's what I can manage at present unless I can find a solution. I am praying for your procedure and feel very positive for you. I will have a first visit with an ENT professor at end of August and I will be able to tell him of your procedure and how you are doing :bounc ing:

     
    Old 08-01-2004, 08:07 PM   #50
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hey Lib,
    Is your tinnitus in both ears? When did it start? Over time, has it gotten worse? Do you hear it all day long or just at night? Has it gotten louder?

    Lib, does your whole face snap? My snapping started behind the nose. I now also get it behind the mouth and jaw. Where do you snap? Mine has also gotten louder.

    What did expert doc say about your tinnitus? Dob you ever have the sound of breaking glass? Are you thinking the procedure will help the tinnitus? Besides the breaking glass sound, I also have the high-pitched squeal and it is constant. I am praying the procedure helps this.

    Try not to be scared about the surgery. I have had lots. This procedure sounds easy. It's even outpatient and no painful recovery. It sounds pretty good.

    Seriously, you're not really thinking about asking expert doc to close them and put tubes in?

    I am getting more and more sensitive to noise.

    The letter describes PET and the procedure. It is fairly general.

    Lib, does expert doc let you talk directly to any patients who have had this procedure. This seems important.

    I do not have the ear cracking thing. Is there no end to these symptoms?

    I hear my heart beat in my left ear when i lay down and roll to the right.

    You are a lifeline to me. What will we do if this site ever goes down? How will we contact each other? Any ideas?


    You should psyche yourself up for the surgery. Write down all the positive outcomes you want. Then read it over and over out loud. Really, I'm not kidding. Expect the best.

    I can't wait to hear all about it. Let me know ASAP afterwards.

    More on what I've learned about my diagnoses next time. Tomorrow my two cousins who are nurses are coming to my house to go over all of my medical papers and help me figure out what to do.

    Keep the Faith,
    SCP

     
    Old 08-01-2004, 09:52 PM   #51
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hello All!

    I have just read the last 3 pages of your posts. You have been busy. Lots of good information has been shared.

    One question I have is do we all have tinnitus? If so, how do all of you cope with this? I qm devastated by this. This is my fourth day of living with the constant high-pitched squeal in my left ear. I can't take it. I also have the sound of glass breaking. I thought this was from TMJ but I saw on a tinnitus website that this is a symptom of tinnitus. My plate was full with the rest of the PET symptoms plus my other numerous medical problems. This tinnitus thing is enough to push me right over the edge. My biggest fear is what if it is permanent -- my God, I don't know what I will do. I am praying that Poe's procedure corrects this. Any ideas for coping would be appreciated. Also, let me know how far along your PET was when you developed tinnitus.



    To respond to some of the things being discussed . . . As for pressure in the ear, yes I feel funny pressure. I have a brief period of time (about 1 hour) in the morning where the ears feel normal and then they suddenly change and the PET has been activated for the rest of the day.

    Also, how many of us have TMJ? I read Libby's post about Poe saying it's a separate problem. But if most of us have it there must be some connection. One thing I know is, the docs tell me a TMJ bone rests up against the E tube. My docs are trying to determine how much of my problems are PET versus how much are TMJ. And the scary thing is, they may never know. I did see on a tinnitus website that some people get tinnitus from TMJ and that if the TMJ is cured, the tinnitus improves or disappears. I am praying this is the case for me. I really can't take another permanent, incurable problem.

    Someone mentioned getting puffy around the eyes. I have this also.

    How many of us have had an MRI? Can it make the PET worse? How did you tolerate the noise? I am afraid to have one. My doc has ordered one for a TMJ study and one for a brain study that looks at the E tubes, middle and inner ear. I won't do it unless I have some assurance that it won't make the PET worse.

    What about the noise of a hairdryer? Could this make PET or tinnitus worse? What about Libby working in a salon, using a hairdryer? Has anyone tried earplugs as a safety thing to prevent more problems from hairdryers?

    I don't know how we all got in this bad boat. I pray that we all can be fixed.

    Thanks for your response,
    SCP (Kathleen)

     
    Old 08-01-2004, 10:33 PM   #52
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib: Read your note right before checking in for bedtime. What is xanax? Is it antidepressant? Hope it helps. Do whatever you need until you have your surgery. I expect good results because Dr. poe is the leader in the field. Not only that he seems to be a good listener and very well informed. he will certainly take your nervousness into consideration and do everything possible to make you comfortable throughout the procedure. if you have the IV you will be out before it even starts and won't know what happened until you wake up. Then you can go home and rest and wait for the new ET. I have been busy the last couple of days and that keeps my mind off the PET a little. Tomorrow I have to meet with friends that are coming in from out of town. My poor husband has to be my voice and explain everything. I am seeing friends that haven't seen me for a few years and only know that I have an ear problem. They saw a little of how it affects my speech on their last visit but now it is even worse. I dread these social settings where I have to write on paper. See you online tomorrow.

     
    Old 08-01-2004, 10:49 PM   #53
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi SCP/Kathleen
    It is nice that you are back. I read some of your notes and all the problems you are dealing with. Makes me feel guilty to complain of just PET. Seems like you have several things at once. I had a close girlfriend that had TMJ after a car accident and she suffered a lot with headaches and pain.

    In response to your question about tinnitus--I didn't have it at first with my PET. My PET started showing up about 10 years ago but just a feeling of stuffiness in my ear---no diagnosis at that time. 5 years later I had two ENT's confirm the diagnosis but still not PET. The last two years and something has changed--the PET has worsened and now I am aware of the PET, especially at night when I try to sleep. The roar is so loud that it keeps me awake. In the daytime I cope by having the tv on all the time. Fortunately with cable I can get good programming so I keep it on in the background all the time. Silence makes me aware of the tinnitus. I am silent myself because my voice is so irritating in my own head but if I have some background noise like the radio or tv I don't hear the tinnitus. I keep the volume low since I am noise sensitive but just a little knocks out the tinnitus so I don't hear it. Try one of those noise synthesizers that mimics the noise of the ocean. That at least produces a nice mellow sound to fall asleep to and block the tinnitus high pitched noise. that helped me also.
    You mentioned a high pitch squeal with your tinnitus and I was wondering if you get any kind of high pitched squeal when you push on the neck area below your ear. I get some sound that is just like the hearing test sound when I push on my neck area below the ear. The ENT's have no idea what it is but it only occurs on one side and happens every time. Must mean something.

    I envy you for the one hour of normal pressure in the morning. My ears feel full as soon as I sit up in bed in the morning and it is so sad to start every day like that. I would love to have a day when I woke up and felt healthy like before. I can't imagine living this way for the next 40 years.

    I don't have TMJ but it does seem to be a common link with some of the PET posts. How did you get TMJ?

    I don't have the puffy eyes although gravity is starting to take affect. Darn!

    I am scheduled to have an MRI to rule out any tumor in the ear or brain area. I asked if I could wear earplugs and they said yes. My doctor wants me to get an upright MRI but I can't find any facility that has the equipment. There are some open MRI locations but the upright are kind of hard to find--anybody out there know where I can find one? I don't think the MRI will make the PET worse or if it does it would be temporary. i do use earplugs when I am in noisy settings because I am sensitive to noise but I don't think there is any actual damage to the ear bones or structure--just is uncomfortable. My electric toothbrush sounds so loud I can barely stand it--how about you with crunchy foods or electric toothbrush. If I am eating something crunchy like chips my friends know that I can't hear a thing they are saying. I may have a good hearing test but that is only when I am listening--if I am making noise inside my mouth like speaking or eating then my hearing is bad. How about you?











    I don't know how we all got in this bad boat. I pray that we all can be fixed.

    Thanks for your response,
    SCP (Kathleen)[/QUOTE]

     
    Old 08-02-2004, 10:10 AM   #54
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    dear lib, I live on the eastern coast of Australia so all of my surgeries have been done here. I have had 4 sets of grommets. The first three helped when the ET was dysfunctional as gluey fluid was stuck behind the eardrum. Even though it was mainly the L ear that was bothersome they always put one in the R ear as well. I had the choice between GA or local. I guess I chose GA' cause I was Young and nervous. But it can be done under local and that would be OK. The 4th set of grommets were put in at my request. The ENT couldn't see any fluid but I used to feel there was still extreme pressure there and it was driving me mad. Unfortunately as I discovered later the ear had gone from being a ETD where it was opening and closing dysfunctionally to have now flopped open all the time.I had a large sudden weight loss before this due to the stress.It took 10 yrs going from ENT to ENT before I discovered the phenomena myself and asked the 5th ENT to test for it.

    As in my previous post this is where the ENT came to making a decision about what to do. I tried the 'Gelfoam' first (I used to have info on this from a book- you may find it on the net. This was only to be a temporary test to see if I would find it comfortable. I had a GA for this. THey didn't need to put in a grommet because apparently the dissolvable gelfoam was porous and some air would be able to pass around it. Gelfoam is used for other surgical procedures as well. It dissolved in 6 weeks like it was supposed to. I didn't feel any great relief from when it was in. I think a grommet would have helped as well when the foam was in as I felt it was plugged up. I haven't heard of ENT's using Gelfoam anymore. This was about 12 years ago.
    The next step would have been to have the eustacian tube catheter. ( I think I read on 'simple request.... re- Maggie-Jane p.3 that this was the procedure she had). THis would have required a grommet to allow for air to get in and out of the middle ear. The procedure involves putting a catheter that is filled with a substance into the ET. This would completely block off the ET tube. Maggie had hers under local and said it was quite simple. My ENT hadn't done this before or even heard of it! It was pioneered by Professor Bluestone In USA and my Doc contacted him about it.I decided not to ahead with it and wait for anything new to be invented. This forum is wonderful because we will be able to rely on our own personal testimonies about how these procedures affect us and their success. I am really pleased you have found such a caring and personable ENT in Doc Poe. He sounds wonderful and I know he will take really great care with you. (I wonder why he has such an interest IN PET- sometimes health professionals develop a special interest in health issues when someone close at hand is affected). Every few years now I go and see an ENT. They check my hearing. Funny thing is, it usually tests pretty good, so I am very thankful for that (however to me it feels like my hearing is muffled and when I am out in noisy situations I feel disconnected to my surroundings).Just the other week we went to a live singing concert. THere was a very excited audience there. At the end of each song they would clap and scream. This was torture for me, however I remembered this was a big prob at another concert I took my kids to and I had my Industrial Strength Earplugs to put in. Thank goodness!No-one else seemed bothered by the noise at all- but this was severe pain for me. My supposed better R ear was affected even worse than the bothersome left.
    I am a registered nurse. I beagan my training whilst I was young and hoped that my ear probs would go away or at least I might have an increased chance of getting some help as I would be closely affiliated with the med. profession. I finished my 3 yrs training but used to get very fatigued so once registered had to swap onto just pat-time work from then on. This was one of my lifestyle adjustments as I was having to have the grommets put in several times, in too much discomfort, and needed to get plenty of rest. Also as with nursing as with hairdressing it is constant talking which used to completely drain me. Everyone used to say how tired I looked all the time. Gradually decreased my work load outside home to just one day a week and then went onto have kids. Have not worked outside home since then as I get tired and the autophony. However, I have studied by distance education and now help kids one-on-one with reading and craft at home. This is quite successful in a meaningful way. It's what I can manage at present unless I can find a solution. I am praying for your procedure and feel very positive for you. I will have a first visit with an ENT professor at end of August and I will be able to tell him of your procedure and how you are doing :bounc ing:
    hi ccc123,
    your very lucky as well to not have to work, i really wish i could stop for now but it does not seem possible.
    i think i am tired all the time from the stress and worry of it all.
    you can have your ent contact dr poe, i know he is trying to get other drs involved in treating pet.
    you are right about dr poe, he does understand pet and very well, he will be the one i beleive to find the right treatments for this disorder, its sad to me in a way because a lot of drs wont put their time into such a devastating disorder.
    thank you for praying for me and the positive thoughts, i hope to come back with great news and hope for everyone to be rid of this problem.lib

     
    Old 08-02-2004, 10:48 AM   #55
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hey Lib,
    Is your tinnitus in both ears? When did it start? Over time, has it gotten worse? Do you hear it all day long or just at night? Has it gotten louder?

    Lib, does your whole face snap? My snapping started behind the nose. I now also get it behind the mouth and jaw. Where do you snap? Mine has also gotten louder.

    What did expert doc say about your tinnitus? Dob you ever have the sound of breaking glass? Are you thinking the procedure will help the tinnitus? Besides the breaking glass sound, I also have the high-pitched squeal and it is constant. I am praying the procedure helps this.

    Try not to be scared about the surgery. I have had lots. This procedure sounds easy. It's even outpatient and no painful recovery. It sounds pretty good.

    Seriously, you're not really thinking about asking expert doc to close them and put tubes in?

    I am getting more and more sensitive to noise.

    The letter describes PET and the procedure. It is fairly general.

    Lib, does expert doc let you talk directly to any patients who have had this procedure. This seems important.

    I do not have the ear cracking thing. Is there no end to these symptoms?

    I hear my heart beat in my left ear when i lay down and roll to the right.

    You are a lifeline to me. What will we do if this site ever goes down? How will we contact each other? Any ideas?


    You should psyche yourself up for the surgery. Write down all the positive outcomes you want. Then read it over and over out loud. Really, I'm not kidding. Expect the best.

    I can't wait to hear all about it. Let me know ASAP afterwards.

    More on what I've learned about my diagnoses next time. Tomorrow my two cousins who are nurses are coming to my house to go over all of my medical papers and help me figure out what to do.

    Keep the Faith,
    SCP
    hi scp,
    yes tinnitus in both ears its a high pitched hum, it gets louder sometimes, and i get and have had a lot of strange noises, squelching, static sounds,
    sudden deafness for a few seconds, things i cant beleive i have endured for so long. it started all around the same time the ears started to pop and crackle. the thing with pet is you never know from minute to minute what your going to get, it changes and new sympyoms start and old go away, they dont pop like they used to i think because its worse now.
    my snapping is behind the nose, above the roof of my mouth, is that what you are talking about? mine is loud enough others can hear it. is that like you, when you stop talking it snaps?
    we did not discuss the tinnitus, i will ask, i had 400 other symptoms to tell and that one i just never got to.
    yes i would consider closing them, i know its not good but this is unlivable and i think the other would be easier to deal with, i will do that last.
    i am very sensitive to noise, loud voices, dishes, is this the same for you also?
    i gave them permission to give MY number to other patients and one did call, i also know a guy who lives near me and he has one done, and is going with me and having the other ear done same day as me, and he put me in touch with another girl who had it done also. i have talked to 2 others on line but they had diff procedures. so i am hopeing more patients will get my number from the office and call me, i faxed them permisson to give my number out, they cant just give peoples info because of laws but i did not care who called me, i figure we are all in the same boat and any help would be good.
    if others need or want to talk to other patients they can call me too. its surgery and its not a common one, the lady that called me was very reassuring, she said it was easy and that made all the difference to me.
    you should call and do what i did, it will give you info and recovery opinions, and improvment stories to think about.i would be happy to share my story before and after with anyone suffering. i wish more patients would call.
    i am trying to get pshyced but i have never had surgery so i am still scared, i will try to start thinking of what it will be like to get rid of some of this.
    will you need both ears?
    god i would die if this site went down, its been a life line to me too and you have been also, not that i want you to have a snapping face but i did not feel so alone when i read your post and i knew then it had to be related.
    hope to hear from you soon, dont forget to call poes office.
    lib

    Last edited by lib; 08-02-2004 at 10:55 AM.

     
    Old 08-02-2004, 12:27 PM   #56
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hello All!

    I have just read the last 3 pages of your posts. You have been busy. Lots of good information has been shared.

    One question I have is do we all have tinnitus? If so, how do all of you cope with this? I qm devastated by this. This is my fourth day of living with the constant high-pitched squeal in my left ear. I can't take it. I also have the sound of glass breaking. I thought this was from TMJ but I saw on a tinnitus website that this is a symptom of tinnitus. My plate was full with the rest of the PET symptoms plus my other numerous medical problems. This tinnitus thing is enough to push me right over the edge. My biggest fear is what if it is permanent -- my God, I don't know what I will do. I am praying that Poe's procedure corrects this. Any ideas for coping would be appreciated. Also, let me know how far along your PET was when you developed tinnitus.



    To respond to some of the things being discussed . . . As for pressure in the ear, yes I feel funny pressure. I have a brief period of time (about 1 hour) in the morning where the ears feel normal and then they suddenly change and the PET has been activated for the rest of the day.

    Also, how many of us have TMJ? I read Libby's post about Poe saying it's a separate problem. But if most of us have it there must be some connection. One thing I know is, the docs tell me a TMJ bone rests up against the E tube. My docs are trying to determine how much of my problems are PET versus how much are TMJ. And the scary thing is, they may never know. I did see on a tinnitus website that some people get tinnitus from TMJ and that if the TMJ is cured, the tinnitus improves or disappears. I am praying this is the case for me. I really can't take another permanent, incurable problem.

    Someone mentioned getting puffy around the eyes. I have this also.

    How many of us have had an MRI? Can it make the PET worse? How did you tolerate the noise? I am afraid to have one. My doc has ordered one for a TMJ study and one for a brain study that looks at the E tubes, middle and inner ear. I won't do it unless I have some assurance that it won't make the PET worse.

    What about the noise of a hairdryer? Could this make PET or tinnitus worse? What about Libby working in a salon, using a hairdryer? Has anyone tried earplugs as a safety thing to prevent more problems from hairdryers?

    I don't know how we all got in this bad boat. I pray that we all can be fixed.

    Thanks for your response,
    SCP (Kathleen)
    hi scp,
    i dont think the mri is a prob, just wear ear plugs i had 2 one last sept and one in march for the tmj, it did not bother me. tmj causes certain ear symptoms, but pet is diff its the tube open in the back of the nose not near the jaw joint. i beleive the stress of pet can cause tmj, just my opinion, i dont think my tmj was bad as all i ever had was pet symptoms, after expert doc works on me i hope know tmj is not a problem. i dont think any noise makes pet worse, its tissue loss, but we are noise sensitive.as for the tinnitus, i dont know if noise will make it worse, i dont think so because of the cause, ours is not caused by hearing loss or damage in the hearing but again this is just my opinion.but hopefully i will be telling you much more very soon.
    yes i have to use that hairdryer on my people but it does not bother me too bad, its louder voices and stuff that bother me.and of course trying to talk to them, but they have for the most part been good, and i have lost some from this also. praying that all changes next week, at least part of it, but theres still the other ear.
    you know i had a cold over 4th of july and i felt much better, even the

    snapping noise in my face stopped for a bit and noise did not bother me as
    much, so if we can get the e tubes to close i think we will be ok.
    thats going to be the trick! lib

     
    Old 08-03-2004, 02:30 AM   #57
    ccc123
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi everyone,
    We are very lucky to have found each other to talk to on such a regular basis. For years I always wished that there would be a support group that I would find, but there has been nothing like that in Austalia. I have heard of Tinnitus Support Groups, but never contacted them as I presumed these were for people with hearing loss (I do have high-pitched tinnitus as one of my PET symptoms, however).So, here we are! And guess what? We have created our very own support group and in the most ideal way for PET sufferers. WE can type for as long as we want to- and this is actually quite relaxing! I am sitting in my quiet office and there are no loud noises around to cause any discomfort. As you know i have had the L PET problem for many years and it has become worse for me over the last 10 months since having a bad sinus infection. I had to take Augmentin antibiotics ( a strong combo of amoxycillin and clavalunate acid) and prior to finding this forum used to wonder if these tabs could have made things a lot worse- it's always been on my mind. Has anyone else taken strong antibiotics before the onset of the PET symptoms? Also, some of you have mentioned that doctors have told you not to take certain pain meds- why is this?

    To SCP, you mention the tinnitus as being a snapping noise. Do you get this when you move your head up and down, and around in circles? (careful of your neck if you,re trying this one out!) I have a snapping noise, clicking noise when I move my head. Also when I exhale the noise is there in the L ear, never in the R. The high- pitched tinnitus is most noticeable at night when I lay down to sleep. I have found the best way to tune off from this, these days is to read myself to sleep. Sometimes I will read for about an hour before sleep finally comes. Most nights I am very fatigued from the events of the day. My kids are 11 and 15yrs. The elder has a chronic illness and I help her study from home. I also work from home, so by the end of the day, I'm tired. On a scale of 1-10 how loud would you say the high-pitched ringing is?I don,t think I have ever experienced the sound of breaking glass that you mention- this must be very alarming. Does anything precipitate this sound?

    Lib mentions that she gets a thumping noise. Does it feel like it's behind your eardrum, lib? Or does it seem to come from the roof of your mouth or behind your nose? EVery now and again I will get an intense fluttering of the eardrum. It is a very strange and alarming feeling. Also only over the last 10 months I get this run of quick clicking (maybe thumping) noises that must be around the base of the eustacian tube. I have heard docs refer to this as 'Palatal Myoclonus' where the palate goes into a sort of spasm and it has been assoc. with PET. I'm sure if anyone was standing next to me when this happens they would be able to hear it! For years I have never been able to discuss these strange symptoms with anyone and have had to accept them for what they are. You may want to look up Palatal Myoclonus on the net.

    Do anyone's symptoms disappear when they lie down? mine don't. I tend to feel more anxious when I'm lying there. The ET doesn't feel like it closes. It would be great just to get a break from this uncomfortable feeling. The ENT asked me if there were any times when the symptoms were not as bad? I quickly thought and said ' YES- when I'm asleep'. He just nodded and said he would send me off to have a consult with the ENT professor who only deals in ears. THat appt will be at end of August so I will share any news from this- am feeling quite positive about the appt. Have a lot to discuss with him and it will be good to find out if he has a special interest in PET. At night when I'm lying down the pulsating noise is in my ear. How many pillows do you all sleep on? I found the flatter I lay the more the pulsating noise is there. I tend to not have it as much when I sleep on 2 pillows. I sleep on LHS to try and block the ringing.

    Haveto go the TMJ specialist next week. I've never spoken to him about the PET problem. Never thought there could be a connection and always found it hard to talk about. But now after communicating with my own group here I find I can accept and talk about it more. My husband is wanting to know more about it again and is interested. It feels good to be able to talk about it and have people who have all the time and 'patience' to listen. So many times in the past the ENT visits have been so rushed. I found over the years and especially the last year we must be kind to ourselves. Take some time to nuture yourselves, find an inner peace. I pray and never give up hope. I have found you all, haven't I. You are thousands of miles away- but yet so close by. It does not cost me anything to talk to you, who are so far away. Hey! I'm getting all teary. I just have to wonder if this syndrome is actually as elusive as is made out. THere is 10 times more peeps in USA than in Oz. Must ask the prof about the incidence of PET over here. Also must be other people in other counties as well. Has anyone spoken to people from other countries. Anyhow, had better go. Till next time....CC

     
    Old 08-03-2004, 03:25 AM   #58
    willsmommy
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Guys, wow I have read some of these posts as I just got back form a trip away and I had no idea that thiscould be such a horrendous problem, you all are coping amazingly well and I am so glad you have found one another for the support and comfort you can offer one another.

    Any ways the main reason I wanted to add a comment was to wish Lib all the very best with her forth coming op, I really hope that it works succesfully for you and will look forward to hearing how it goes.

    Ilia x

     
    Old 08-03-2004, 04:54 AM   #59
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    Hi everyone,
    We are very lucky to have found each other to talk to on such a regular basis. For years I always wished that there would be a support group that I would find, but there has been nothing like that in Austalia. I have heard of Tinnitus Support Groups, but never contacted them as I presumed these were for people with hearing loss (I do have high-pitched tinnitus as one of my PET symptoms, however).So, here we are! And guess what? We have created our very own support group and in the most ideal way for PET sufferers. WE can type for as long as we want to- and this is actually quite relaxing! I am sitting in my quiet office and there are no loud noises around to cause any discomfort. As you know i have had the L PET problem for many years and it has become worse for me over the last 10 months since having a bad sinus infection. I had to take Augmentin antibiotics ( a strong combo of amoxycillin and clavalunate acid) and prior to finding this forum used to wonder if these tabs could have made things a lot worse- it's always been on my mind. Has anyone else taken strong antibiotics before the onset of the PET symptoms? Also, some of you have mentioned that doctors have told you not to take certain pain meds- why is this?

    To SCP, you mention the tinnitus as being a snapping noise. Do you get this when you move your head up and down, and around in circles? (careful of your neck if you,re trying this one out!) I have a snapping noise, clicking noise when I move my head. Also when I exhale the noise is there in the L ear, never in the R. The high- pitched tinnitus is most noticeable at night when I lay down to sleep. I have found the best way to tune off from this, these days is to read myself to sleep. Sometimes I will read for about an hour before sleep finally comes. Most nights I am very fatigued from the events of the day. My kids are 11 and 15yrs. The elder has a chronic illness and I help her study from home. I also work from home, so by the end of the day, I'm tired. On a scale of 1-10 how loud would you say the high-pitched ringing is?I don,t think I have ever experienced the sound of breaking glass that you mention- this must be very alarming. Does anything precipitate this sound?

    Lib mentions that she gets a thumping noise. Does it feel like it's behind your eardrum, lib? Or does it seem to come from the roof of your mouth or behind your nose? EVery now and again I will get an intense fluttering of the eardrum. It is a very strange and alarming feeling. Also only over the last 10 months I get this run of quick clicking (maybe thumping) noises that must be around the base of the eustacian tube. I have heard docs refer to this as 'Palatal Myoclonus' where the palate goes into a sort of spasm and it has been assoc. with PET. I'm sure if anyone was standing next to me when this happens they would be able to hear it! For years I have never been able to discuss these strange symptoms with anyone and have had to accept them for what they are. You may want to look up Palatal Myoclonus on the net.

    Do anyone's symptoms disappear when they lie down? mine don't. I tend to feel more anxious when I'm lying there. The ET doesn't feel like it closes. It would be great just to get a break from this uncomfortable feeling. The ENT asked me if there were any times when the symptoms were not as bad? I quickly thought and said ' YES- when I'm asleep'. He just nodded and said he would send me off to have a consult with the ENT professor who only deals in ears. THat appt will be at end of August so I will share any news from this- am feeling quite positive about the appt. Have a lot to discuss with him and it will be good to find out if he has a special interest in PET. At night when I'm lying down the pulsating noise is in my ear. How many pillows do you all sleep on? I found the flatter I lay the more the pulsating noise is there. I tend to not have it as much when I sleep on 2 pillows. I sleep on LHS to try and block the ringing.

    Haveto go the TMJ specialist next week. I've never spoken to him about the PET problem. Never thought there could be a connection and always found it hard to talk about. But now after communicating with my own group here I find I can accept and talk about it more. My husband is wanting to know more about it again and is interested. It feels good to be able to talk about it and have people who have all the time and 'patience' to listen. So many times in the past the ENT visits have been so rushed. I found over the years and especially the last year we must be kind to ourselves. Take some time to nuture yourselves, find an inner peace. I pray and never give up hope. I have found you all, haven't I. You are thousands of miles away- but yet so close by. It does not cost me anything to talk to you, who are so far away. Hey! I'm getting all teary. I just have to wonder if this syndrome is actually as elusive as is made out. THere is 10 times more peeps in USA than in Oz. Must ask the prof about the incidence of PET over here. Also must be other people in other counties as well. Has anyone spoken to people from other countries. Anyhow, had better go. Till next time....CC
    hi ccc123,
    my thumping is the ear drum spasming,its horrendus, yes you are right about the palatal myclonus as well, dr poe said myclonus is very common with pet, it could be the muscle in the e tube spasming. i took klonopin for the snapping noise behing my nose but it did not help, the only thing that helped that was the cold and so it makes me think its the e tube snapping together.
    i have found people all over the world with pet, i think its more common than anyone knows.
    my symptoms do not get better when i lay down either, its the same.
    my dr at hopkins wanted to do a botox injection in the roof of my mouth for the snapping but i remembered a post where that caused pet in another person and i asked if i had pet would it make it worse, we did not have a firm dx on it yet, and the answer was yes, so i said no way!
    i have not found any inner peace with this, i cry all the time, i think really bad thoughts, i am very depressed, and i know i cant live with this, so i am praying this procedure works really well, and i pray i will not live in fear of it returning.
    do you find other than talking anything that makes it worse, food or drink, medications?
    i have taken augmentin with pet, i dont think its the antibiotics that do it but the decongestants and other stuff. i was told sinusitis can trigger it also.
    when is your appt with the professor? i cant wait to hear if he has any solutions for you.
    you can also write to dr poe and ask his opinion, and maybe he knows someone that could help, more drs need to learn how to treat this.
    lib

     
    Old 08-03-2004, 04:56 AM   #60
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by willsmommy
    Hi Guys, wow I have read some of these posts as I just got back form a trip away and I had no idea that thiscould be such a horrendous problem, you all are coping amazingly well and I am so glad you have found one another for the support and comfort you can offer one another.

    Any ways the main reason I wanted to add a comment was to wish Lib all the very best with her forth coming op, I really hope that it works succesfully for you and will look forward to hearing how it goes.

    Ilia x
    thank you ilia, i am praying it goes really well and it gives me the strength and hope i need to get through the next ear. thanks again, libby

     
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