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  • Please, Desparately Need Help, Can't Take Much More!!

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    Old 04-13-2005, 07:07 PM   #16
    Martin_G
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    Some of us have had it for over 10 years!

    It's amazing that at long last I am able to read about other folks suffering the same strange symptoms (well, at least as similar as could be to what I've been going through). Believe it or not I've been trawling the internet for the last year or so trying to see if anything matched what I've been suffering on and off (in some cases for months at a time non stop) for the past TEN YEARS!
    Out of those 10 years, there were only TWO years where the symptoms (which invariably affected the same ear - my right) did not come back - that was 1996 and 2000. The worst years were 1995 and 1998, where the symptoms lasted up to FIVE MONTHS continuously at a stretch, and only a couple of weeks respite before recurring. And yes, in many of these cases I have been driven to distraction, despair and even thoughts of suicide at the most irrational points as this thing has all but threatened to swamp my day to day life. Not very pleasant, as you can imagine. In fact, after some initial counselling at the time, I have become such an expert at logging the onset of my ear disorder outbreaks, I've meticulously DOCUMENTED every single week of the problem from when I first had it in early 1995 to the first time it cleared for a considerable length of time - that was in early 1999. I have a file on this where I have plotted every day of the disorder via graphs which show the distortion at varying levels from 0 (zero) to 5 (full distortion). I have even shown this to all the specialists and doctors at the ENTs I have visited during my various consultations...and yet they still could not get near to making any proper diagnosis of this strange phenomenon.

    The previous five years' relapses (with the exception of 2000) were limited to only about a month in total per year - but once again this has been increasing exponentially and the past year it has revisited me on no less than three occasions spread over several months, whilst this year since January I've had SIX short-ish new outbreaks, of which the most current is still afflicting me right now as I type - having lasted a worrying TWO WEEKS without respite.
    As a result I've not had what I call a "clean" month this year - that's one full month where the problem has not returned. March was the closest - a mere 22 days. The latest three bouts all came just before Easter and - curiously - now seem to occur in a specific pattern where each bout is double the length of the previous one - thus the first time it re-occurred it lasted four days, then the next bout was eight, then the next was over two weeks going on to three.....

    The symptoms I have are the same - characterised - or rather DOMINATED - by distorted hearing - where people's voices- especially children's and women's (i.e. of a higher pitch) come across split into three or four distinct tones - like synthesised voices or robots. This I've noticed is more or less the same as many people here have described. It is extremely unpleasant to have to endure this. So I try hard to avoid situations where I'm surrounded by people like never venturing out in public. But when you're working and have to travel about to get from A to B this can't be prevented - thus the ordeal is made all the worse. Music likewise is distorted - in fact my entire appreciation of sounds from the afflicted ear suffers terribly.

    However, the hearing problem is never just the same at any one fixed period - as I mentioned briefly earlier it develops in several noticeable stages - each one a peg further up the ladder of distortion and unpleasantness. I have given it six stages from 0 (zero - no distortion) to +5 (maximum distortion). I get all the usual accompanying things like pressure build up (feeling of blocked ears and sinuses), ringing, rumbling, whining, roaring noises - sometimes it almost sounds like a throbbing generator strapped to your ear. When all this is in place it's what I call level +5. Level +1 to +2 is simply distorted voices (pitch-altered) and slight pressure sensations. Level +3 is with a more distinct rumbling as well as the distorted voices. Level +4 is that again but with twice the intensity - with the rumbling becoming a more penetrating roaring/whining that fills the head, whilst level +5 is just unpleasant and uncomfortable (even accompanied by bouts of dizziness at times). One way of telling how bad my ear is is by putting the phone receiver to each ear and listening to the dialling tone: the more distorted my affected ear, the lower in pitch the continuous tone becomes. The more the ear problem gets better and clears again, the more the tone reverts to the same pitch as the good unaffected ear. At the worst stage of distortion - when it's accompanied by the loud whining/roaring and blocked/pressure sensations (and mild dizziness), the dialling tone pitch becomes rasping and almost atonal and robotic (as do human voices by this point - not just simply distorted into three pitches, but totally tuneless, complete with echoing and refraction of sound in the pinna [outer ear] just like many others describe here). Also, at this point, when you place your hand over your ear you normally hear the rushing of blood (that unmistakable rumbling noise) don't you? Well, at the worst stage, I cannot hear anything - the only noise is the whining and roaring - which completely overrides everything. It's only when the symptoms start to fade that once again I can gradually hear the rumbling and the noise of blood rushing in my head when I cup my hand over the affected ear...... This is how incredibly complicated my problem is (has been) and I am still at a loss to find out exactly what - if anything - this might all be down to.

    Although this has blighted me on and off tor TEN years now, I did have a couple of similar outbreaks (with exactly the same symptoms of distorted hearing, pressure and rumbling) when I was a lot younger at school (aged 14/15 to be exact - so that is over 25 years ago) - that was put down to an ear infection in which the doctor's prescribed ear drops would clear after a couple of weeks. But I never counted on the sudden re-emergence of it in 1995 - especially after the first "introductory" bout which lasted a mere four days. I shrugged it off at the time, but I was not prepared for the onslaught that awaited me for the rest of that year shortly after I visited the dentist to have a couple of fillings put in, which made me wonder if THAT was the reason why the ear problem came on in the first place. You know - contamination from metal or something....? Unlikely, I know, but still, enough to make you wonder!

    As it is, I do have constant sinus problems cos I suffer badly from allergies - have done most of my life - hayfever and perennial rhinitis are the worst offenders. And when I sneeze I always - without fail - sneeze four or five times in succession - never ever just the once. And moreover I never have "dry sneezes". As soon as one sneeze is out, the nose just gushes and I have to blow it constantly just to clear the never-ending mucus from the sinuses. Perhaps it is this that has brought on this recurring chronic problem cos of the intense pressure it has placed on the eustachian tube, I don't know.

    I have however only found ONE way of treating this problem - something which all the doctors and specialists have systemmatically failed to do. And that is via some herbal Chinese medicines - namely some tablets that are specifically meant for ear problems. These I take up to three times a day (they're small herbal pills which you swallow in clusters of about 8 or 10 each time with water). Initially I first got to know about these pills from a visit to China when I happened across a traditional homeopathic acupuncturist/ practitioner who took my pulse and prescribed me several bottles of these pills to take (a full five-month long course) to its completion. This occurred in November during my last "worst" year of the ear problem - 1998 - when I had the symptoms blight me for five to six months with very little respite at all. Three months later in early 1999 after regularly taking these pills and persevering, the ear problem cleared completely and never returned for over 20 months! So it must have worked.

    Now whenever it recurs (which it has done in, variously, June 2001, October 2002, July 2003, June 2004, and December 2004) I get hold of these same pills and take another course, and usually it clears again. BUT - this time it seems my body could be about to start resisting it as I've been on the same stuff since February and the problem hasn't let go yet......so naturally I am getting rather anxious.

    I've gone on a great length here but I hope some others find what I have to say interesting and offer up their own opinions and verdicts as to how it is that we get these strange afflictions and yet there doesn't seem to be any specific concrete diagnosis for this condition, other than the likelihood it seems to be an unholy amalgam of various recognised ear problems and disorders that we have all read extensively about elsewhere. Please also excuse the duplicate posting as I have also replied to another guy who posted up something about his own ear disorder - but I wasn't sure which reply people would gravitate to more!

     
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    Old 04-14-2005, 05:28 AM   #17
    JohnBlack2005
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    Re: Some of us have had it for over 10 years!

    Martin G,
    Thanks for your detailed post. What is the name of the Chinese herbal pills you take? Thanks.
    -John

    Last edited by moderator2; 04-14-2005 at 06:17 AM.

     
    Old 04-14-2005, 10:04 AM   #18
    Martin_G
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    Re: Some of us have had it for over 10 years!

    Quote:
    Originally Posted by JohnBlack2005
    Martin G,
    Thanks for your detailed post. What is the name of the Chinese herbal pills you take? Thanks.
    -John

    They are called "ER LONG ZUO CHI WAN" = which is the pinyin English name on all the packages. The contents from each bottle or packet vary according to when they were prepared. I have found that over the last few years each time I have had to resort to taking these pills they have come in a new redesigned package with a slightly different mix of ingredients - which adds to the confusion as there is by the looks of things no particular recommended mixture overall for this type of medicine as each individual manufacturer has their own unique mix of constituents.

    However, some common ingredients found amongst the plethora of different packages include the following:

    Magne Titum
    Prepared Rehmannia Root
    Common Yam Rhizome
    Fructus Corni
    Tree peony Bark
    Waterplantain Rhizome
    Bambooleat Thorowax Root
    Radix Bupleuri
    Cortex Moutan
    Poria Cocos


    Anyway, having said that, my chronic symptoms are still annoying me right as of now despite having taken the latest mixture of this treatment for the past three or four weeks. The whining / blocked pressure in the right ear coupled with the usual distortion and split pitches/echoing doesn't seem to want to abate this time round, leading me to wonder with increasing despair whether or not even this treatment is ultimately only a short term relief measure and that something approaching more permanent impairment is on the cards. I fear this because this time round my dizziness spells are more frequent - almost every day - whereas in the past during my many previous outbreaks, there were only one or two days - if even that - where the symptoms were accompanied by the feeling of being unsteady on my feet. I cannot contemplate having this all year on and off like I did in 1998 when that last worst outbreak blighted my life (before the time I discovered these pills, that is). What also frustrates me greatly is that the GPs (well the state of our utterly hopeless national health service in Britain as a whole) will not address the problem straight away unless you go private, as the shortest waiting lists for just seeing an ENT specialist can be anything from three months to eight, by which time obviously you have no way of knowing if the problem will still be there for them to "catch" as it were. This is spoken from experience as nine out of fifteen of my previous (fruitless) consultations over the years at various clinics and hosptials in my vicinity have been frustrated by the fact that the problem had all but abated by the time I got round to the actual date of the appointment. We're talking real cat and mouse stuff here, as you can imagine. It really does drive me close to insanity sometimes.

    Last edited by Administrator; 11-11-2013 at 02:01 PM.

     
    Old 04-14-2005, 10:31 AM   #19
    JohnBlack2005
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    Re: Please, Desparately Need Help, Can't Take Much More!!

    Martin, Thanks for the info on the herbal pills. Sorry to hear about your symptoms and the long wait for an ENT appt. I just saw one this week and it only took about 2 weeks to get in the door (I live in New York City).

    To briefly share my experience, I've had tinnitus for 12 years. It's a constant ringing that randomly gets louder at various points throughout the year. It has been much much louder than normal lately which is why I went to the ENT. Once again, they had no idea what is wrong. I've seen ENTs in Providence, San Francisco, and now NYC and none of them know what to do. Their advice..."learn to live with it".

    I try to maintain hope that it is curable though. My tinnitus came on suddenly overnight and has been with me ever since. I'm in excellent health besides my ear. I may try your Chinese herbs because i'm desparate enough to try anything.

    I wish I had a happy ending story for you, but I don't. I hope your situation improves. The best I can say is continue to try and be as healthy as possible in other areas (ie healthy food intake, excercise, etc) and maybe it'll suddenly clear up.

     
    Old 04-21-2005, 02:09 AM   #20
    ariel2005
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    Unhappy Re: Please, Desparately Need Help, Can't Take Much More!!

    I feel exactly like you do. For me, it is this ticking/clicking/crackling sound in my right ear. It happened only occasionally at first, but for the last 3 months it's constant and deafening. Somedays it's just a couple clicks at regular intervals, other days it's continual. AND IT'S DRIVING ME NUTS. I can't concentrate, sleep, hear above the clicks, it's ruining my life. I can go all day without a problem and then the moment I go to bed, it starts. Oddly, hearing water running makes it click out of control. Somedays noise affects it, other days no. For that reason, it is impossible for me to figure out what is causing it. I get so annoyed and desperate sometimes, I think I could jam an icepick into it. I was told that it could be trouble with the eust. tube and/or muscle spasms in my middle ear, but what causes the muscle twitching is a mystery. I have read about a pill called RING STOP. Have you or anyone heard of it and if so, does it work? Honestly, I would rather be totally deaf in that ear then put up with this.

     
    Old 04-21-2005, 05:10 AM   #21
    lib
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    Re: Please, Desparately Need Help, Can't Take Much More!!

    Quote:
    Originally Posted by ariel2005
    I feel exactly like you do. For me, it is this ticking/clicking/crackling sound in my right ear. It happened only occasionally at first, but for the last 3 months it's constant and deafening. Somedays it's just a couple clicks at regular intervals, other days it's continual. AND IT'S DRIVING ME NUTS. I can't concentrate, sleep, hear above the clicks, it's ruining my life. I can go all day without a problem and then the moment I go to bed, it starts. Oddly, hearing water running makes it click out of control. Somedays noise affects it, other days no. For that reason, it is impossible for me to figure out what is causing it. I get so annoyed and desperate sometimes, I think I could jam an icepick into it. I was told that it could be trouble with the eust. tube and/or muscle spasms in my middle ear, but what causes the muscle twitching is a mystery. I have read about a pill called RING STOP. Have you or anyone heard of it and if so, does it work? Honestly, I would rather be totally deaf in that ear then put up with this.
    yes a muscle spasm in the middle ear....been there done that horror.....i had the muscles severed and this has given relief.....might want to consider that.

     
    Old 04-21-2005, 07:40 PM   #22
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    Re: Please, Desparately Need Help, Can't Take Much More!!

    Quote:
    Originally Posted by lib
    yes a muscle spasm in the middle ear....been there done that horror.....i had the muscles severed and this has given relief.....might want to consider that.
    I honestly thought I was the only one. Thanks for the quick reply. Having the muscles severed sounds EXTREMELY PAINFUL. How was that done? After going through yet another sleepless night and horrible day, I think I could do it myself.

     
    Old 04-21-2005, 08:04 PM   #23
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    Re: Some of us have had it for over 10 years!

    I can only say that I know exactly how you feel. My ear problem makes everyother problem in my life 100 times worse. I can't concentrate, sleep, hear well, it's just this constant loud deafening clicking noise and it works my up to the point of such anger, I have actually hit myself upside the head and/or banged my head against the wall. I get THAT FRUSTRATED. On the rare occasion that it does stop for a short time, when it starts up, I start to cry like a baby out of dread and frustration. My doctor said it was a muscle twitch/spasm in my inner ear, but offered no solutions. I am 52 years old and have had my share of medical problems, but NOTHING I have experienced has affected my life like this has. Sitting in the doctors office trying to listen to this **** explain my situation---over the ear clicking--the only thing I heard was, THERE REALLY ISN'T ANYTHING WE CAN DO ABOUT IT. I get so depressed too. The worst thing for me is not being able to concentrate, which leads to not being able to think clearly, add that to not being able to sleep and you have a wreck of a basketcase. Just know my friend that you are NOT ALONE and that everything you are feeling emotionally is understandable and absolutely normal.

     
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