Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
Hi all,
Due to a lack of interest within the Medical profession, I thought I would come here instead. Since no "paid" so-called experts with lots of acronyms surrounding their names are willing to Dx, or even investigate beyond the usual initial evaluation tests - Pure Tone Audiograms and Tympanograms - self-evaluation has become the alternative =(.
To tag a 'reference only' diagnosis here, lets call it Atypical or Cochlear Meniere's, since Vertigo has been largely absent but a 'falling' sensation was notable at first, but has become minimal since. The whole deal started with SSNHL (Sudden SensoriNeural Hearing Loss) with profound Tinnitus and Hyperacusis. At this writing, 5 months and 4MD's have passed while traveling this bumpy road. Being not much good as a Tweeter, this summary will likely be tedious:
Day one was a feeling that my left ear was plugged solid with wax; by day two the hearing loss was quite evident, and the ringing and loss of ability to hear a wide range of frequencies set in solidly. I might add that this started 4 days after a root canal, which so far has been dismissed as a possible cause since my hearing was normal for several days after. I tried a gentle ear-wash with no results, so made an appointment with a GP; he validated that there was no blockage in the canal and the hearing loss was extreme on the one side. He recommended seeing an ENT, and totally missed the "Sudden" part which I have learned flags SSNHL as a documented Emergency.
Taking the MD #1's nonchalance (and total lack of Dx or potential treatment options) as a non-red flag, I called several Otologists within my network, and took an appointment 6 weeks out with one very high on the review/ratings list; 6 weeks was more the rule than the exception on wait times. Within the next several days (over a week had elapsed since onset by then), I did my due-diligence and studied up on the symptoms experienced, which did not lead me to the SSNHL data, but pointed in the direction of an ear infection or Meniere's. With a possible infection on the table, I aggressively hit the list of ENTs again, and made another appointment at the soonest available slot with ENT #1 who checked out low on the 'review' list, but with only an 8 day wait.
ENT #1 did an Audiogram and listened to my list of symptoms, and suspected an AN (Acoustic Neuroma) and ruled out an ear infection. He scheduled a Head MRI /w Contrast, which I had 6 days later. It was very unsettling to investigate the nature and resolution of a benign auditory canal tumor, and it focused my attention during the wait to that Dx specifically. It took 2 more days to get the interpretation, which came back negative, but showed Paranasal Sinus Disease (fluid in the Maxillary and Sphenoidals), and ENT #1 prescribed Flonase, with a Dx of a blood supply problem causing the hearing symptoms, and that nothing else could be done. If nothing else, it was a relief that sawing holes in my skull, and chopping stuff off the nerves in my brain was not required.
By this time, 5 weeks had passed and my symptoms seemed to worsen a little, (especially the Hyperacusis and now Misophonia), so I let the appointment with Oto #2 stand (he was rated highly in all available reviews available on-line). Audiogram #2 showed a slight worsening in range and response; he threw the flag and added the "Sudden" part to SSNHL, stating ENT #1 missed the most important part. He prescribed a 10 day Prednisone therapy (that was a real roller-coaster ride) to try and restore hearing, but there was no notable improvement.
After listening to ENT #2 run through the seeming pre-recorded disclaimer of how the inner ear is a black box and there was nothing more to do (again no Dx), he sent me on my way and recommended another Audio in 3 months as the only course of action. Being rather tapped out making all the co-pays and deductibles, it was back to Dr. Warren(mwa) for further investigation since my left ear has become more-or-less useless and is severely impacting my practical life, stress levels, and mood among other profound unpleasantries.
Focusing on SSNHL specifically, I have come to learn that this event is a true Emergency, and quick action may have brought my hearing back; the recommended therapy being a Prednisone type treatment, which has only proven to be effective when administered during the first 2 weeks of onset. At first, the maddening ringing, concussive Hyperacusis, and plugged solid sensation on the left made my right ear 'seem' fine, but now it is apparent there is some involvement in the good ear.
Looking beyond the obvious causes, I decided that checking peripheral disease was in order. Armed with a carefully compiled list of any and all lab tests that have shown to affect hearing and the inner ear in general, I ventured off to GP #2 (GP #1 has been deemed a Bozo and to be avoided at all costs) for an intense blood-letting. Among the tests I requested were Lymes, Autoimmune Disoders, Full Blood Count, Clotting, ESR (inflammation), Kidney & Liver Function, TSH (Thyroid), Glucose, Cholesterol, and the like. Everything came back normal, except the TSH; I am quite Hypothyroid.
Hypothyroidism has hearing loss and tinnitus on the possible symptom list, so I saw a glimmer of hope. GP #2 put me on Synthroid (Synthetic hormone), but within a short period of time it caused irregular heartbeats (SVT and A-Fib), so he switched me to Armour (natural? processed Swine hormone) which ended the Fibs, but caused increased tinnitus in my good ear, which persists to this day. At about week 2 (been on it for 6 weeks now), there was a marked improvement that lasted 3 days; the Tinnitus all but stopped, the Hyperacusis went 90% away, some of the lost range came back, and hearing improved to the point I could actually listen to music (elevator type stuff at low volume) and hear it in stereo.
Well, that all went away just as suddenly, and things have been worse than ever for the last 3 weeks. Now it again sounds like I have a bucket on my head (especially when talking, breathing or chewing), and any extra noise like a TV set or traffic causes my hearing to decrease and the tinnitus to increase. Communication has been difficult all along, and my favorite thing is to sit in a quiet room and let the ringing and odd bubbling pulsing in my ears ruin an otherwise terrible day.
The symptoms do come and go to a certain extent, anywhere from an hour to hour to days by days basis, but these ebbs and flows are fairly minimal. It's almost like a 'better' day is a bad thing because I know the next day (or hour) the symptoms will increase with a vengeance. Also, sleeping (lying flat) tends to make things worse, and I now dread sleeping for fear of waking up much worse, or with the good ear affected. I've tried sleeping with my head elevated, but it only seems marginally helpful and gives me a back-ache.
I've given up alcohol, avoid salt (have been gluten free a couple years now), drink very little coffee and eat no chocolate nor drink any pop, prepare my own fresh (not processed) meals with plenty of veggies and as much fruit as I can stand, watch my weight (6"10" / 175 pounds), and exercise as much as my 59 year old carcass allows. Now if I could only keep from running off at the keyboard...
There is a lot more to say and add, but I'll quit for now - this has been a welcome distraction from the ringing and perpetual annoyances =), and big thanks to anyone bored enough to read this dissertation through to the end!
Regards,
Warren the Outlander
Due to a lack of interest within the Medical profession, I thought I would come here instead. Since no "paid" so-called experts with lots of acronyms surrounding their names are willing to Dx, or even investigate beyond the usual initial evaluation tests - Pure Tone Audiograms and Tympanograms - self-evaluation has become the alternative =(.
To tag a 'reference only' diagnosis here, lets call it Atypical or Cochlear Meniere's, since Vertigo has been largely absent but a 'falling' sensation was notable at first, but has become minimal since. The whole deal started with SSNHL (Sudden SensoriNeural Hearing Loss) with profound Tinnitus and Hyperacusis. At this writing, 5 months and 4MD's have passed while traveling this bumpy road. Being not much good as a Tweeter, this summary will likely be tedious:
Day one was a feeling that my left ear was plugged solid with wax; by day two the hearing loss was quite evident, and the ringing and loss of ability to hear a wide range of frequencies set in solidly. I might add that this started 4 days after a root canal, which so far has been dismissed as a possible cause since my hearing was normal for several days after. I tried a gentle ear-wash with no results, so made an appointment with a GP; he validated that there was no blockage in the canal and the hearing loss was extreme on the one side. He recommended seeing an ENT, and totally missed the "Sudden" part which I have learned flags SSNHL as a documented Emergency.
Taking the MD #1's nonchalance (and total lack of Dx or potential treatment options) as a non-red flag, I called several Otologists within my network, and took an appointment 6 weeks out with one very high on the review/ratings list; 6 weeks was more the rule than the exception on wait times. Within the next several days (over a week had elapsed since onset by then), I did my due-diligence and studied up on the symptoms experienced, which did not lead me to the SSNHL data, but pointed in the direction of an ear infection or Meniere's. With a possible infection on the table, I aggressively hit the list of ENTs again, and made another appointment at the soonest available slot with ENT #1 who checked out low on the 'review' list, but with only an 8 day wait.
ENT #1 did an Audiogram and listened to my list of symptoms, and suspected an AN (Acoustic Neuroma) and ruled out an ear infection. He scheduled a Head MRI /w Contrast, which I had 6 days later. It was very unsettling to investigate the nature and resolution of a benign auditory canal tumor, and it focused my attention during the wait to that Dx specifically. It took 2 more days to get the interpretation, which came back negative, but showed Paranasal Sinus Disease (fluid in the Maxillary and Sphenoidals), and ENT #1 prescribed Flonase, with a Dx of a blood supply problem causing the hearing symptoms, and that nothing else could be done. If nothing else, it was a relief that sawing holes in my skull, and chopping stuff off the nerves in my brain was not required.
By this time, 5 weeks had passed and my symptoms seemed to worsen a little, (especially the Hyperacusis and now Misophonia), so I let the appointment with Oto #2 stand (he was rated highly in all available reviews available on-line). Audiogram #2 showed a slight worsening in range and response; he threw the flag and added the "Sudden" part to SSNHL, stating ENT #1 missed the most important part. He prescribed a 10 day Prednisone therapy (that was a real roller-coaster ride) to try and restore hearing, but there was no notable improvement.
After listening to ENT #2 run through the seeming pre-recorded disclaimer of how the inner ear is a black box and there was nothing more to do (again no Dx), he sent me on my way and recommended another Audio in 3 months as the only course of action. Being rather tapped out making all the co-pays and deductibles, it was back to Dr. Warren(mwa) for further investigation since my left ear has become more-or-less useless and is severely impacting my practical life, stress levels, and mood among other profound unpleasantries.
Focusing on SSNHL specifically, I have come to learn that this event is a true Emergency, and quick action may have brought my hearing back; the recommended therapy being a Prednisone type treatment, which has only proven to be effective when administered during the first 2 weeks of onset. At first, the maddening ringing, concussive Hyperacusis, and plugged solid sensation on the left made my right ear 'seem' fine, but now it is apparent there is some involvement in the good ear.
Looking beyond the obvious causes, I decided that checking peripheral disease was in order. Armed with a carefully compiled list of any and all lab tests that have shown to affect hearing and the inner ear in general, I ventured off to GP #2 (GP #1 has been deemed a Bozo and to be avoided at all costs) for an intense blood-letting. Among the tests I requested were Lymes, Autoimmune Disoders, Full Blood Count, Clotting, ESR (inflammation), Kidney & Liver Function, TSH (Thyroid), Glucose, Cholesterol, and the like. Everything came back normal, except the TSH; I am quite Hypothyroid.
Hypothyroidism has hearing loss and tinnitus on the possible symptom list, so I saw a glimmer of hope. GP #2 put me on Synthroid (Synthetic hormone), but within a short period of time it caused irregular heartbeats (SVT and A-Fib), so he switched me to Armour (natural? processed Swine hormone) which ended the Fibs, but caused increased tinnitus in my good ear, which persists to this day. At about week 2 (been on it for 6 weeks now), there was a marked improvement that lasted 3 days; the Tinnitus all but stopped, the Hyperacusis went 90% away, some of the lost range came back, and hearing improved to the point I could actually listen to music (elevator type stuff at low volume) and hear it in stereo.
Well, that all went away just as suddenly, and things have been worse than ever for the last 3 weeks. Now it again sounds like I have a bucket on my head (especially when talking, breathing or chewing), and any extra noise like a TV set or traffic causes my hearing to decrease and the tinnitus to increase. Communication has been difficult all along, and my favorite thing is to sit in a quiet room and let the ringing and odd bubbling pulsing in my ears ruin an otherwise terrible day.
The symptoms do come and go to a certain extent, anywhere from an hour to hour to days by days basis, but these ebbs and flows are fairly minimal. It's almost like a 'better' day is a bad thing because I know the next day (or hour) the symptoms will increase with a vengeance. Also, sleeping (lying flat) tends to make things worse, and I now dread sleeping for fear of waking up much worse, or with the good ear affected. I've tried sleeping with my head elevated, but it only seems marginally helpful and gives me a back-ache.
I've given up alcohol, avoid salt (have been gluten free a couple years now), drink very little coffee and eat no chocolate nor drink any pop, prepare my own fresh (not processed) meals with plenty of veggies and as much fruit as I can stand, watch my weight (6"10" / 175 pounds), and exercise as much as my 59 year old carcass allows. Now if I could only keep from running off at the keyboard...
There is a lot more to say and add, but I'll quit for now - this has been a welcome distraction from the ringing and perpetual annoyances =), and big thanks to anyone bored enough to read this dissertation through to the end!
Regards,
Warren the Outlander
I read the whole thing. It describes a journey that many here have taken. After reading it, my first thought was that you are so fortunate that you have not experienced the extreme vertigo with vomiting etc. or drop attacks that can put you flat on your back for extended hours.... I remember that when I first had my symptoms, the tinnitus and hyperacusis were all but unbearable. Now they are just nasty. It takes a while ( a year, maybe two) for you and your body to adapt to the changes you are going through. My ENT declared me "cured" after the room stopped spinning.... I, like you, felt so frustrated that tests weren't done quicker, and more thoroughly right at the beginning in hopes of slowing or stopping the progress of this disease. Now, 5 years later, I am thankful every day for no vertigo. My life has totally changed. The tinnitus and hyperacusis are still present daily along with the pressure, fullness, some dizziness, ear pains, head pains, nystagmus and along with that a general lack of confidence in my abilities, because I cannot count on them. But..... I am still thankful every day that I do not have the vertigo. I'm afraid that my other ear is having more symptoms all the time. I am also thankful that my hearing went louder more than disappearing.
So......
You will find many people here who can answer questions, encourage, give advice. Mostly, you will find people who understand. Venting is encouraged.
I applaud you for your thorough research. Unfortunately, I don't know of a cure. People can, however, share how to treat the symptoms.
I hope your tinnitus calms down so you can sleep, think, work, and enjoy your life again. I also hope you find some doctors who will listen and help. You can ask here if anyone knows of a good doctor near you....
God's blessings.
After being treated for nondescript inner ear infections as the cause by several MD's to no avail, it took a few trips to the library (this was B-4 the Internet) analyzing anything that may have contributed other than infection. I stumbled across a magazine article discussing artificial sweeteners; I was addicted to Coca-Cola (Diet Coke to be exact), and would drink about a gallon a day. Almost as hard as giving up smoking, I kicked the bottle, and withing 2 weeks the Vertigo ceased and never came back. My Doc never hear of such a thing and told me it was in my head - yes it was, my ears to be exact.
A few years later a friend was battling the same symptom without resolution, so I suggested giving up artificial sweeteners; after 6 months of Episodic Vertigo, her problems also disappeared within a few weeks! That convinced me it really was the aspartame, because I never touched another artificially sweetened food to disprove my theory since.
The preview experienced back then has been a BIG driver to try and control my current symptoms and avoid the Vertigo at all costs. As so many have recommended, listening to ones body is the first line of defense, and the fear of vertigo has turned up the volume for me. Everything is on the table now, and to be considered no matter how remote; Viral, Fungal, Autoimmune, Allergy and Spinal Alignment or Disease.
Another recent event has thrown a flag or two, and it may be worth it's own topic, but for now will describe it in my next post below. Thanks again, and should anyone be able to recommend a vested MD in the Arkansas / Oklahoma / Missouri area, I would be most appreciative.
Best Regards,
Warren
After looking at all the possible impacts on the inner ear from the Flu, I decided to go ahead and get the shot; the 4/Quad strain variety. I had one last season with no repercussions, so felt confident it was the right thing to do. Maybe NOT.
Within 4 hours of getting poked, BOTH ears plugged up; the bad ear solid, and the good ear partially. The tinnitus stepped up a notch or three, and sound became hollow and muffled. Oh-oh. This was Sunday evening, and I know a trip to the ER would be a waste considering this was the only symptom and would be compounded and confused with the SSNHL, so I waited until morning to call my PCP, and also have an Audiogram at the ENT office.
As suspected, the PCP was baffled and recommended seeing my ENT; I messaged the Otolaryngolist directly, but as usual, no reply =(. His nurse recommended making an appointment, and the soonest available was 11 days out. I did see the Audiologist (I have a standing order) who found a notable loss in both ears, especially the bad one, with voice recognition and higher frequency (2K and up) being most pronounced; she had no opinion and suggested I give it a few days and see what happens.
That was 7 days ago; since then there has been a very slight improvement bilaterally with the clogged ears, but still much worse than before the shot. Flu shot nvestigation shows aural side-effects to be very rare, but they do exist; the worst reports being from the H1N1 shot given in '09 & '00. I have upped the natural medications (L-lysine and Vinpocetine), as well as going to full doses of Diuretics. I also changed professional approach by making an appointment with an Endocrinologist (Linked to Hypothyroidism?) instead of donating to the ENT again.
Been doing daily home hearing tests using the online application at audiocheck.net, and it has verified the office results, with minimal daily fluctuations but no improvement. Also taking clues by listening to my body and investigating possible relationships to commonly suspected Meniere's causes, it seems to be leaning towards an Autoimmune or Allergic response. Depending on the Endo's opinion, an Immunologist may be next on the list.
Anyone else have the Flu Shot? This was my last - ever...
Regards,
Warren