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    Old 12-16-2004, 04:26 AM   #151
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi pp, yes those are the same drops. they have been approved i guess.
    what tests are you having done? good luck with them.
    yes i hope 2005 is a much better year for us all.
    take care, lib

     
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    Old 12-19-2004, 09:22 PM   #152
    petpeeve
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib: Got your note. Holidays are almost upon us. I am done with my tests for now--new doctor wants to make sure we are dealing with right diagnosis. I guess there are other things that create autophony so doing some bloodwork and an MRI to make sure no tumor in ear area. My ear pressure doesn't seem as bad as usual but I still find that talking is my biggest problem. I am OK at home and on phone but it seems like everytime I go out and try to meet someone at a coffee shop or restaurant I end up writing on a piece of paper. How about you--how on earth do you talk over the sound of your blowdryers and background music if you are a stylist? What is the latest with you and do you think your main problem is the muscle spasms from the myoclonus or do you still have some of the autophony too? Do you feel your two surgeries have helped? What are your plans for the next year as far as your treatment options? PP

     
    Old 12-20-2004, 05:36 AM   #153
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by petpeeve
    Hi Lib: Got your note. Holidays are almost upon us. I am done with my tests for now--new doctor wants to make sure we are dealing with right diagnosis. I guess there are other things that create autophony so doing some bloodwork and an MRI to make sure no tumor in ear area. My ear pressure doesn't seem as bad as usual but I still find that talking is my biggest problem. I am OK at home and on phone but it seems like everytime I go out and try to meet someone at a coffee shop or restaurant I end up writing on a piece of paper. How about you--how on earth do you talk over the sound of your blowdryers and background music if you are a stylist? What is the latest with you and do you think your main problem is the muscle spasms from the myoclonus or do you still have some of the autophony too? Do you feel your two surgeries have helped? What are your plans for the next year as far as your treatment options? PP
    hi pp,
    i do think my surgeries have helped, in fact i am thinking about having the other muscles cut but would like to get into nih first.
    while you are testing you need to ask for a vemp test and a high resolution ct scan looking for sccd, the doc should know what that is and it can cause autophony. i am working better now, it is different with the muscles cut but i am getting use to it. talking is easier because the eardrum does not move anymore. the bigger problem for me is the snapping and popping. i think that is palatal...who knows.
    let me know how all these tests go!
    lib

     
    Old 12-28-2004, 11:32 PM   #154
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hello ladies and i hope you have had an enjoyable time over the break. i am not going too good with my ear prob and it is really bothering me, however, must remain optimistic as we go into the new year. have taken a note on how you have been going with tests etc. , have you had your MRI, pp? and did the other tests reveal anything? I too, am ok on the phone and one-on-one conversations. Have had to battle in conversations and get -togthers over the break and makes me feel very fatigued. The symptoms don't seem to be improving on any day now. The L ear feels blocked and full and like i need to clear it. There is a ticklish and squelchy feeling all the time and when i talk the sound is constantly disturbing and vibratory. Have had a lot of trouble sleeping as it feels extremely uncomfortable and i can't stand it. Noww when i am breathing in most times, the ear pops or clicks; and after i breathe out it clicks and pops. The R ear is OK. PP, have a read of 'jeebus' latest posts and see if there are similarities in symptoms. The 'ticklish' feeling is one that i strongly descibe. Do you have this? I, too, hav not done any singing over the break. used to enjoy it but its impossible now. If it sounds distorted to me i think it must sound ten times worse to my kids! Are you still working?

    Thankyou lib, for the info on tinnitus a while ago and i am going to start researching the different types on the net. I have printed out the pg you wrote and also will find out if the 'patulend drops' are available over here yet. You're right, it is best to go armed with all info and so as to make the appt really worthwhile. I read that pp had been in the trial for them and even though it didn't help her, it helped others. so it will be worth a go.

    How on earth did we get into all this trouble ladies? I keep feeling that there must be some ultimate purpose why we have these probs and now that we are all working together to help each other . It would be great if we could all meet. has anyone travelled on a plane with ear probs or how long is it since you have? I had to do the big train trip again last week; through the big tunnels. Didn't have a prob with the bad ear at all this time. it didn't seem to react to the pressure change at all (haven't got sinus probs at present). The normal ear reacted as i would expect and felt the pressure change, but it was ok. How do your ears react to external pressure changes, pp and lib, on planes trains or in the car going up or down hills? Anyway , bye for now and take care, we're on the verge of a new year!... cc

     
    Old 12-29-2004, 04:30 AM   #155
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    hello ladies and i hope you have had an enjoyable time over the break. i am not going too good with my ear prob and it is really bothering me, however, must remain optimistic as we go into the new year. have taken a note on how you have been going with tests etc. , have you had your MRI, pp? and did the other tests reveal anything? I too, am ok on the phone and one-on-one conversations. Have had to battle in conversations and get -togthers over the break and makes me feel very fatigued. The symptoms don't seem to be improving on any day now. The L ear feels blocked and full and like i need to clear it. There is a ticklish and squelchy feeling all the time and when i talk the sound is constantly disturbing and vibratory. Have had a lot of trouble sleeping as it feels extremely uncomfortable and i can't stand it. Noww when i am breathing in most times, the ear pops or clicks; and after i breathe out it clicks and pops. The R ear is OK. PP, have a read of 'jeebus' latest posts and see if there are similarities in symptoms. The 'ticklish' feeling is one that i strongly descibe. Do you have this? I, too, hav not done any singing over the break. used to enjoy it but its impossible now. If it sounds distorted to me i think it must sound ten times worse to my kids! Are you still working?

    Thankyou lib, for the info on tinnitus a while ago and i am going to start researching the different types on the net. I have printed out the pg you wrote and also will find out if the 'patulend drops' are available over here yet. You're right, it is best to go armed with all info and so as to make the appt really worthwhile. I read that pp had been in the trial for them and even though it didn't help her, it helped others. so it will be worth a go.

    How on earth did we get into all this trouble ladies? I keep feeling that there must be some ultimate purpose why we have these probs and now that we are all working together to help each other . It would be great if we could all meet. has anyone travelled on a plane with ear probs or how long is it since you have? I had to do the big train trip again last week; through the big tunnels. Didn't have a prob with the bad ear at all this time. it didn't seem to react to the pressure change at all (haven't got sinus probs at present). The normal ear reacted as i would expect and felt the pressure change, but it was ok. How do your ears react to external pressure changes, pp and lib, on planes trains or in the car going up or down hills? Anyway , bye for now and take care, we're on the verge of a new year!... cc
    hi cc,
    i have not flown on planes since this all started. i do feel dizzy sometimes on elevators, not sure why.
    i think i have read jeebus and will reread his posts.
    i know someone using the drops and has found some relief in them. you have to order them from santa barbara.
    i should find out when my nih appt is today.
    wish scp would come back and tell us how her appt went with poe, been wondering.
    take care and talk soon,
    lib

     
    Old 12-31-2004, 01:06 PM   #156
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    [QUOTE=ccc123]
    Hi: Just checking in and letting you know latest with my tests and ongoing medical search. I read the latest note that ccc123 and lib posted and will try to respond to questions specifically. First my MRI's were OK. That is good news--no tumors. Of course that still leaves the mystery of why my ear feels plugged and my own voice echos in my head when I speak. Speaking seems to be the number one thing for me. Thanks for explaining your speaking situation ccc123--I was beginning to feel like I was the only one who couldn't do anything in a group setting or loud environment. Actually even talking in a fairly normal small coffee shop setting has become almost impossible because I have to raise my voice so others can hear me and it is just like yelling into my own ear (only from the inside vs outside). Telephone seems to be the best and close converstations with just one person is about the only other thing that is manageable after that. I even limit talking at home unless my family is within one or two feet--talking to someone walking down the hallway or down the stairs, if more than 4 or 5 feet feels like I am yelling inside my head. I am constantly waving for someone to come closer or to look at my lips. Talking with the doctor is OK because it is inside a small office with the door shut and no background music. In situations like that my voice sounds normal to him, maybe a little soft but I don't think I have yet conveyed to any of the doctors how much not speaking has disrupted my life. Once I leave the doctors office I speak only when absolutely necessary. It is really hard for people to understand that my voice is uncomfortable to myself. I often hear people say-- "Your voice is fine, it is soft but I can hear you." That is NOT the issue-- It is very frustrating. I am still dealing with determining if we have a correct diagnosis. I don't have that ticklish or squelchy feeling that you said you experience .I read the notes of jeebus but I don't have any hearing distortion. My recent hearing test was normal. I have become sensitive to external noises--everything seems too loud and especially high pitches. I wear earplugs if I go to the movie theatre because the sound is too loud and situations where a lot of activities are going on and lots of different noises are generated at the same time seem to be really disturbing. I don't have sinus problems or TMJ problems like jeebus described either. I can understand why it is hard for the doctors to figure out what is going on with us because it seems like we all have a few things in common but each situation is so unique. I also don't have any trouble sleeping--my ear pressure seems to be the same throughout the day-- I don't get any relief from putting my head between my knees or lying down like most PET patients. You said your sleeping was bothered and that it is very uncomfortable when you lie down--that is the opposite of what they describe for most people with PET--I wonder what that means. What actually happens when you lie down? Singing is definetly out--that vibrating kind of sound is the worse--humming would be terrible too. On really bad days I notice that certain words are worse than others--like ones that echo in the nasal cavity--especially words that start with m or n. After years of dealing with this I think I just talk about 1/5 of what I used to--just not worth the effort or noise that it creates. I catch myself ready to say something or make a comment and many times just stop because it is uncomfortable to speak.

    Also you asked about flying. I found that on the occasions that I fly it feels pretty much the same. I was concerned that it would be painful but it is just uncomfortable for a short period of time and I usually take a small bottle of water and a straw and find that if I sip little bits of water during the descent then I can relieve some of the feeling of pressure. It feels a little more uncomfortable than flying before the PET but it is tolerable. I have always described the PET as a feeling of landing in an airplane and not being able to pop your ears--except that most people pop them or pressurize them within a few minutes of landing- I have been trying for years and no results. I haven't flown internationally yet which concerns me because it is a different altitude and descent. I have a friend in UK that I would like to visit but have put that off because of flying and concern over ONLY being able to chat if we are in the home setting-- out and about sightseeing and restaurants and I can't say anything. It is an awkward social setting because people think you are too quiet or rude or boring-- it is only understandable for those of us that live with it. I feel like two people sometimes--the indoor personality and the outdoor personality.

    This is my last attempt at figuring out what my diagnosis is-- I have spent years and seen 6 doctors. I have almost as many opinions as doctors and have tried about everything available for PET at least. The experts in the field have disagreed with each other over treatments, medicines and diagnosis. Since tumors were ruled out I feel comfortable with knowing it is not life threatening. If the latest doc can't figure it out I quit! I plan to just work around it and give myself a break from the medical community. I am really fed up and disillusioned with the situation. The good part is that I have lots of extra time to do other things if I can't talk or socialize as much. I have to turn it into something positive in the end.

     
    Old 01-01-2005, 12:58 PM   #157
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    pp,
    before you quit, please think about giving poe a shot at it, if you go and he diagnoses pet, then you know. you could have a dishence (sp) and this causes autophony and hyperacute hearing...poe can dx both. at least then you will know and what your options are.
    i hope the dr now has done a high resolution ct, and a vemp test. i think these are very important at this stage.
    ttyl,
    lib

     
    Old 01-05-2005, 05:15 PM   #158
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi ladies, sorry to hear you're feeling down at the moment, pp. The whole thing can get very frustrating indeed! What lib is suggesting seems like a great idea. that is to see doc poe. is that at all possible for you or is the distance too great. I realise you are feeling like you are sick of trying to find an answer and trying to help the doctors to find an answer. life seems very difficult sometimes and especially with the symptoms that you have that are interfering with your life. allow yourself some time at the moment to teak a break from searching for answers and this will help you stop feeling stressed. you sound like a person who usually has a very positive attitude to life so i know once you have had a break you will feel better and stronger. one day soon you will feel like you can search again and maybe it is in the direction of doc poe. i am not having too bad a week for last 5 days. the echoing has died down quite a bit and am making the most of it. i don't know what has made the symptoms more tolerable at the moment- if i did i would 'bottle it' as a solution. i don't have a cold although have been doing some loud sneezing so maybe a slight allergy has helped close the Et tube at present. anyway, take care now ladies, how are you lib? Talk soon. cc

     
    Old 01-06-2005, 05:29 AM   #159
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi ccc,
    i am still waiting for my appt at n.i.h., i am also thinking about cutting the muscles on the left side. that has really helped on the right.
    the snapping and popping are better, i had a cold and it seems to help with the myoclonus, not sure why, maybe the pressure around the muscles.
    did you get an appt with the professor?
    take care,
    lib

     
    Old 01-07-2005, 05:51 PM   #160
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi lib and ccc123--it is nice to hear that the cutting of the muscles have helped with your spasms lib and that you are having some relief--I will ask the new doc next time I go about the high resolution ct-- I wonder if that is the same thing as a cat scan with contrast dye--I think that is what they call it but not sure. I can't do the contrast dye with cat scan due to an allergy to iodides that they use. The new doc felt that an mri with contrast was a better option anyway. That showed nothing--all normal which was a great relief because it means no tumor at least. I did have an ENG test--the test that measures eye movements and how your balance is affected. Also puts warm and cold water into your ears and again measures the eye movements related to balance. That was normal. Haven't had a VEMP test--will have to go online and see what that is. Thanks for the info and encouragement as always. You too CCC123--you are right in saying that I just need to take a break and attack solving this problem another time. Glad to hear you are also having some relief despite not knowing where it came from. I agree with you--if we knew what made us feel better we would bottle it and sell it. Are you going to try to get some of the PatulEnd or whatever the nose drops are that are now on the market? I am sure you can contact the Santa Barbara office of Dr. DiBartolomeo and order it---he has had people in his study from all over the world and ships to them directly. Let me know if you need any assistance. I don't know what exactly we can or can't say on these websites and I know we are not supposed to directly contact each other or leave info like that but don't understand how and what we are limited on when it comes to sharing medical contacts. Seems kind of counterproductive to leave all these things in code for the next person to figure out when we might be able to help each other directly. I will go back and read the rules but I think I am within the acceptable boundaries as long as i don't give the phone number to the doctor's office. Santa Barbara is small enough that if you address something to the doctor at the Ear Foundation that it will get there. I think you can do a websearch too and get the address. Bye for now. PP

     
    Old 01-12-2005, 02:48 PM   #161
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi pp and lib and i hope you are going ok? I haven't made appt with ENT prof yet. Like pp, i have had to have a break for a while and also the expense of going through the tests and doctor's visits can just get a bit of a strain. Have to be in the right frame of mind to start the search for 'relief' of symptoms and just can't do it at present. However, i am very interested to hear how you all are going and may start search again soon.
    thanks for the info on the patulend drops, ladies. i have taken down the info you have given me. wonder if it is only available with a doctor's script. i will try and research about drops on net.
    I may have a cyst on the ovary, so have found out only recently. SPecialist gynaecologist wants to put me on the oral contraceptive pill to try and balance hormones as i've had probs with cysts in the past. i have read in a book somewhere that PET can be affected by hormones, especially high oestogen (which i think i've always had). wondering if the 'pill' would have better or worse affect on PET? Have either of you had any hormonal probs? Wonder if having the stress and probs with ears puts a strain on the rest of the body to react and bring out probs in other areas- could just be getting older for me as well, i guess. i am finding it hard to comprehend now when i visit my local doc and he asks if i am having any 'menopausal' symptoms! don't feel old enough, but alas, time is marching on! oh well, must go and take care ladies, talk soon. cc.

     
    Old 01-12-2005, 05:44 PM   #162
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi cc and pp,
    well finally i am going to nih, the 24th, hope they can help.
    i am also considering cutting the left ear muscle too it has helped.
    i have only heard that hormones can cause p e t. i think pregnant people get it more easy. not sure why though.
    hope everyone is finding relief and will soon find more answers.
    take care,
    lib

     
    Old 01-13-2005, 04:33 PM   #163
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi lib, how are you goin'? What is the nih that you mentioned? (you've probably said before but i can't remember) and do you haveto make another appt to see DR Poe about getting the L muscle cut? Would you say that you're feeling better since this whole thing started after having the surgeries? Hope all goes well for you and hope that you and your family are finding things easier now. Sounds like you are in really good hands under Doc Poe's care. Take care and talk soon. cc.

     
    Old 01-13-2005, 06:32 PM   #164
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by ccc123
    hi lib, how are you goin'? What is the nih that you mentioned? (you've probably said before but i can't remember) and do you haveto make another appt to see DR Poe about getting the L muscle cut? Would you say that you're feeling better since this whole thing started after having the surgeries? Hope all goes well for you and hope that you and your family are finding things easier now. Sounds like you are in really good hands under Doc Poe's care. Take care and talk soon. cc.
    hi cc,
    i could not go all the way back to boston for the muscles, i would have loved too as dr poe is so wonderful, i could not afford to go 10 hrs so i found a great doc about 2 hours away and he did the muscle surgery.
    nih is national institute of health, its in maryland.
    i feel a little better yes, but i still have a away to go with the palatal myoclonus.
    when will you see the ent professor?
    take care, lib

     
    Old 01-14-2005, 01:35 PM   #165
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi lib, you have done well to find a closer location to have your surgery. Did Dr Poe recommend you to the nih and to a particular surgeon that he knows? All the ENT people over seem to know each other and have met at some stage either in their training or at conferences, i guess.
    Is the muscle surgey for the 'palatal', ET tube or middle ear myoclonus? I am understanding you have 2 lots of spasming and thumping? - one in middle ear that muscle severing helps and alleviates tympanic membrane from moving - and that other now is the thumping in the palate? If this is right, are you thinking you will need further surgery down the track for palate?
    I wonder how far pp is from Dr Poe?
    No, i haven't made appt yet. Need time to sort things out. I like to be really organised i guess, and i don't feel that way at moment. I need time; plenty of money! and the will and motivation to keep going with this to try and find a liveable solution. Fifteen years ago I went through some surgeries for this- grommets (many), a disolveable 'gelfoam' in ET tube, having to work just parttime and eventually gave work up. Am manageing ok at moment, have done some job retraining and have small business at home. Need more time now to research on net- myoclonus, patulend drops etc. I suppose have come to accept more now that i haveto bear with this condition and have arranged my life accordingly. Am trying to get my family now to become as independent as possible, doing things for themselves. I think this will help take some of the 'burden' off of me and lighten my stress level and load. They're used to me being the 'organiser' and this was the way it had to be in times gone by- but i need them to help themselves now and this will help me. If my prob becomes and stays worse i need to know that my family can all take care of themselves.
    I get depressed with the fact that i can't function to the maximum level that i once was- i mean i knew nothing about ear probs until i was a teenager and then suddenly my life was about going to docs, ENT docs and having some painful and uncomfortable things done to my ears. I feel like i've always had to apply extra effort, concentration and energy to do things that 'people without ear problems' know nothing about. That is, difficulty hearing and talking in social situations, having more physical illness like sinus and ear infections etc, and getting very fatigued. I also don't travel by plane as i worry about the pain that could possibly be caused, so i miss out on holidays and trips that others take for granted. This makes me feel down as my family won't go on holidays unless i go, so we go everywhere by car or train (my hubby, in his effort to try and fix things for me traded our old car for a type of 4 wheel drive car, so that we could travel interstate, seeing as i am worried about plane travel... he's great like that!)
    Even though i believe the ET tube is mostly open, I have been advised in the past that it is also quite narrow, though 'floppy' and can be very dysfunctional- i.e. i can easily get a middle ear infection from sinus. The infection can easily travel up the L ET tube 'cause its open. Everything gets out of control then and swells. The tympanic membrane is so thin and damaged that it takes weeks then for my hearing to go back to what i perceive now as my 'normal', even though when this happens the 'autophony' is lessened due to the inflammation. Anyway enough from me. Take care and talk soon. cc.

     
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