I Have an Invisible Disability

I have an Invisible Disability. It is called Meniere's Disease and it is a royal b@$*h. I hate it!

Like any good chronic disabling disease it came out of nowhere with no warning. It started May 3, 2006 I tried to walk down the hallway to go to my bathroom and I barely made it because my head was spinning. I then realized I was nauseous and so sat on the shag throw rug that covered the floor. It was at that moment I realized there was an odd fullness in my left ear and it felt as if it was going to pop. I tried I made it back to my bed but 10 minutes later I was running down the hall to vomit. I went back and forth like that for a couple of hours before I finally just said to hell with it and collapsed on the bathroom floor using my towel as a pillow. I slept there in the fetal position for a couple of hours.

When I awoke I was shaky and weak and my ear was ringing but the vertigo was gone! I called my girl friend and asked her to take me to the doctor the next day just to be sure. In the meantime I IM'd my fuck buddy who just happend to be a doctor and told him what had happend. He diagnosed me over the phone! Ever the Doubting Thomas I thought he was wrong. I mean I knew he was a nice guy and great in the sack but I had no clue if he was any good at his work. Duh! I've never been involved with anybody that didn't have a strong work ethic and wasn't pretty smart. :redface: When I went to the doctor the next day he asked me a series of questions and did some tests and came up with the same diagnosis as my fuck buddy, Meniere's Disease. The doctor then told me that there was no cure but it wasn't fatal. :rolleyes: He told me to reduce my sodium intake to 1100 mgs per day or less, then wrote me an Rx for Meclizine and sent me on my way.

The next few weeks were a rollercoaster of vertigo, vomiting, tinnitus and trips to the ENT for more tests. I found out that I already had a 6% loss of hearing in my left ear which wasn't bad compared to some. Apparently, over time Meniere's causes you to become deaf in the affected ear(s)

Currently they have no idea what causes the initial onset of this wretched disease or how to cure it. The treatments are at best a band-aid solution.

Different people can have different triggers for a Meniere's attack or episode. Mine can be brought on by changes in the barometric pressure, extreme heat, humidity, rain, snow, fireworks, my period, or extreme stress. Damn! I was just healing from vulvar cancer surgery (benign). I didn't need this. I felt like my body had betrayed me. That summer was rough with 3-4 attacks a day almost every day. In the fall I got wise and started doing more intensive research on the net. I joined an online support group and learned that 1100 mgs was too much salt. :eek: I had to cut back to 800 mgs or less. I also learned that I needed to start cooking from scratch as most prepared foods are really high in sodium. I tried that but it was hard and my food tasted like crap. :yuck: I settled on 900 mgs sodium per day which seems to be working. I also discovered that tap water has sodium so I started buying bottled water and using distilled water for cooking. Miracuously, I was soon able to go an entire day without vertigo! As the days stretched out I started to take back my life. The thing is I can't control the weather and living with my ageing parents can be stressful. I am fairly lucky though, I can sometimes go as long as 3 weeks without an episode. The last week has been hell for me though, because of the constant temperature changes and the snow here in Georgia.

The symptom that never completely goes away is the aural fullness and the tinnitus.

Comments

You may consider this a wise tail but here goes.
In the south we call that wet ears, from not properly drying your ears out after a bath, mold and/or contaminates from unknown sources.
From water that is not properly filtered or has contaminates, contaminates that are spread from humidity(acid rain, or you live where there was once a meth lab or you have one next door).
Mold, that can be in your bathroom or in the kitchen, which is easily transfered from air born mold spores, and/or a moldy bath towel.
The ear drum is a extremely sensitve part of the body and is also what controls your balance and/or can contribute to your physical health, when contaminates are introduced they can make your eardrum swollen, causing headachs and even cold like symptoms, even pain in your joints. If you have mold spores in your eardrum you can and will lose your hearing.
There are three cures(medicines)for this in the south for each one of the culprits. The one i have used and perfer is the third one i have listed, it really does work.
The first solution is a hairdryer, set the hairdryer on low and hold the hairdryer to your ear for about 5 minutes.
The second is to pour warm urine into your ear drum and let it sit there untill you can no longer feel the warmth.
The third is to pour hydrogen peroxide in your ear drum and let it set untill the fiss(bubbles) goes away, if your ear foames to the point where it actually leaks out then you furesure have contaminates in your eardrum, repeat the process untill the HP stops foaming.(you will feel virtigo in the process)
Now you may think wet ear or the remedies are a crock of shit but then again doctors don't like to admitt when they just don't know, that's why there are home remidies past down from one generation to the next, many remedies are forgotten or lost.
chris
P.S. Don't feel bad because the doctors don't know, according to the M.O. i have hypothyroidism but i think they're wrong, that's just the only acceptable conclusion to them. I believe that i have wilsons disorder which is not accepted my the so called M.O..
Also, if they can't or don't understand something they're easy to dismiss what's going on by putting a lable on you as depressed or is a symtom of a mental dissorder(manifactured this up in your mind).
Remember, no one knows your symptoms as good as the patient themselves.
 
Wow. Hope you're able to manage it well and it doesn't affect your life too much.
 
Meniere's Disease is a lot more serious than wet ear. I'm sure NJQT has tried many mechanical remedies for her Meniere's. Just because you get diagnoses for you illnesses that you don't like and refuse to accept doesn't mean you're right, nor does it mean the entire medical establishment is bullshit. You just don't want to face how fucked up you really are and are taking it out on NJQT and your doctors.

I'm sorry to crap all over your blog NJ, feel free to delete this, but that asshole just pissed me off.
 
It ain't no picnic. I have it too. I don't have the vertigo, but my tinnitis is extreme. 24 hours a day 7 days a week 365/year I listen to jet engine like roaring in both ears. Never a break, never second of silence in my life. 10-30% hearing loss .

It cracks me up when someone will complain about a little extra noise like a furnace humming or a clock ticking. How about F-18 fighter jets taking off every second?

Now for a guy its even more fun as they are connecting it with erectile dysfunction due to the inability to EVER totally relax.

I don't have the vertigo which is the most evil of the symptoms so I cannot empathize with that. My head always feels a little full and if i catch a cold like now, the roaring is really through the roof.

Surprisingly I just sublimate it away and don't think of it that much. I ski, golf, travel, hike, party, and have a helluva good time all in all. I do think now it is starting to kill my libido tho, dead as a doornail.

Probably why I post wacky shit. And why I have absolutely no time for nonsense in my life. Go sell crazy someplace else, I am full up.

It is one of those things that only a fellow sufferer can understand. Every once in awhile while driving I think to myself why not just aim the car into that concrete bridge stanchion so I can get some silence? Then the moment passes and I say what a sec there is great powder for skiing, the fish are biting, its college football time, or they need my bizarre insights on LPSG.
 
BTW, NJQT: get some custom earplugs. Never never never never, (did I say never?) allow yourself to be around bad noise, never. No fireworks, loud club music, intense stadium noise, lawn mowers, snow blowers, even a loud hari dryer, nothing. I do go into loud noise environments but I always wear hearing protection. 100% of the time.
 
I know how frustrating hearing and balance problems can be and what a freakin roller coaster! If you ever need to find me you know how!

Hopefully, your hearing loss is stabilized and you don't lose any more. My original test showed 85% loss in my right ear, currently it is about 35% and left is about 20%.

I understand the feeling of betrayal from your body. The loss of independance is overwhelming as well as not being able to function like you once did. Hang in there and stay strong as always

Good advice about ear protection from wyldgusechaz. I know loud noises set off attacks for me.
 
I was diagnosed with Menieres in 1975 and it has been a very tough ride in that it cost me nearly 100% of the hearing in my right ear. There are treatments and I have developed a system that has kept me pretty much free of attacks since it was brought under control.

I was lucky in having an MD for a Stepfather. After some initial BS I ended up with the best Southern California had to offer. Dr. Britton is now dead I am certain, but he was with the Hollywood Ear Medical Group in Hollywood, CA.

There are certain things that are deadly, and the worst of these are headphones or earphones in the affected ear. Also beware of specialists trying to tell you a hearing aid will help. The ONLY thing it will do is to set off more attacks.

Also remember that this situation is deadly if you are empaneled on a Jury, because of first your hearing impairment and most importantly the proclivity of the Court System to try to get ear amplification on you to help. That will definitely set it off, so get a permanent jury excuse note from your ENT explaining this to the Courts.

If you have the right specialist who really gets things going, once it is fully brought under control you can learn advanced warnings and when you do and don't need medication.

I always keep it handy, but in truth have only needed it about 5 times since it was controlled.

The process of getting it under control is the hardest part. If you have any questions write me personally and I will tell you what I have done for the last 30+ years.

P.S. I was told of a surgical option, but I was also told that they did not want to do this unless there was no other way. It is called as I remember a "shunt" and what they do is in essence to disconnect the balance mechanism in the affected ear. The problem is that you have about a 20% chance of getting it in the other ear too, so they really don't want to do this other than as a last resort.

Fuzzy Ken
 
Sorry to hear about that, I hope you get better . I don't know about this disease . I have to research about it.
 
I am sorry that you have Meniere's Disease. You could look up more fun facts on that disease at www.webmd.com.

But I want to add: Invisibility is not a disability. It is a strength!!! Thank you very much. :smile:
 
I have tried all day not to react to this; but lafever's post is just pure batshit crazy! :mad:

I am not a simpleton, I know enough to get a 2nd and 3rd opinion when necessary. :mad::rolleyes:

I hope the rest of y'all realize I will NOT be pouring urine, or peroxide into my ears. Anytime you pour hydrogen peroxide on a opening in the body it bubbles. that's why they use it in those volcanoes for kids science fairs. :cool:Sheesh! Of all the crackpot stupid things I have heard recently, that takes the cake.

Besides which, if there really were such a thing as 'wet ears' I'm sure I would have had it 15 years ago when I was lifeguarding at a YMCA camp.
 
Believe what you want it doesn't hurt me a bit, i used H.P. in my ears 12 years ago when i had those same symptoms and i havent had a problem since, but hey do what you want.
I always get different opinions, from different doctors, you don't ever go to another doctor and tell him what the other one said, let him diangose the symptoms without the knowledge of anothers diagnoses, you can do this by pulling the diagnoses out of your medical records, they tend to stick up for each other, they're like cops, even when they're wrong they'll agree with what's going on, for the sake of the field they're inn.
I've used it on my kids too when they would get really bad earachs, and they would always get better.
I understand your point of being a swimmer, i was on a german swimming team myself, and my wife was a swimmer, but you have to remember, when you're young you can bounce back fast because your body has a fast metabilism.
Once a doctor almost killed my father by giving him the wrong medication, he's epileptic and they thought he was a diabetic.
There are good doctors but just as many ducks out there too, lately the best doctor i ever saw works in the er, if he doesn't know he'll tell you that instead of putting a quick diagnoses and hope by chance that it's the right one.
They can sometimes tell you what you want to hear, and believe it or not if you think you've got something without being objectable than you can exude if not intensify symptoms that aren't even there, and when you do go to another doctor you're already buying into the first diagnoses, and your mind can start exuding the symptoms without you even realizing it.
And i'm not mad at any doctors, i know how stupid they can be sometimes and unfortunatly when they make mistakes people can die.
Shoot, i hope for you the best.
Oh yeah, check out the symptoms for mad cow disease, it's incurable.
One of the symptoms is virtigo.
Honestly, i wish you the best, in your openening op you said you had an invisible disability, i'd think twice before you start calling the kettle black.
Know you may have minors disease, but i'd like to hope and pray that you don't, that you can over come this by home remedies, i guess you can call it wishfull thinking on me for your sake.
I always go by a simple rule, if they can't find anything on an cat scan, mri, blood tests, etc. etc., then the doctor is basing his diagnoses on symptoms alone, when this occurs be extremely cautious, and do the reasearch yourself, you never know you could end up saving your own life, the same stuff the doctors learn in school can be read right here on the internet, theres no difference what so ever in the readings. So basically you can learn just like they do, you just don't get to poke at a cadiver.
Good luck, and i mean it, god bless.
chris
p.s. I already know i'm bat shit crazy, so that's no revelation.
 
Wow He is just a crazy and dumb as "saccharine and skank"!
"Mad Cow" disease? from having vertigo,you have come up with a diagnoses of "Mad Cow"? Please stop giving out this crazy, ill thought
bad advice. Some one,God forbid,might take it seriously, and you'd be responsible for harming yet another person, with your maniacal meanderings.You can't learn to be a doctor, simply from reading lafeverish!
You just can't.Thank God NJ is smarter than, to even think about pouring piss in her ears!
There is no such disease as "Wilson's disease." Every institution who has investigated it,has found no basis for it. It is a compilation of other symptons, from other well known disorders. Give it up.
Lafeverish,you cannot pick and choose what parts of your medical records you want to present to a doctor,who would be so stupid as to take out relevant information,that could lead a doctor in the wrong direction.
Seriously dude,see a shrink,quickly.
Sorry for the rant NJ,couldn't let this go unchallenged!
cigarbabe:saevil:
 
I've deleted my posts from this blog, i was trying to be helpfull but if you ladies want to keep being mean than so be it.
chris
 

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