Your history...

Discussion in 'Your Living Room' started by dancing_kiwi1986, May 8, 2009.

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  1. dancing_kiwi1986

    dancing_kiwi1986 New Member

    As you can tell by all the post have been posting lately, I am really bored and looking for something to fill my time. I have been sick for about a week and a half with constant dizziness or light headedness and I can't go out into the world because it only seems to make it worse...so I was just wondering if people could share their MM history and diagnosis with me...just curiouse to hear what others have had to go through and how many have found releife...I'll go first! ;D

    Well I have been sick since I was 7...first I would just get dizzy...when I reached about fourth grade, it became more frequent (not too bad though) and I was vomitting with the attacks. My mom didn't believe me that I was sick so she would yell at me when I was or accuse me of ruining whatever function we had going on that day...she thought it was something I would fake in order to get out of school, gym, going places, etc. I would even write notes to get myself out of gym (because the screaming and physical activity often made me have attacks)...when I reached 6th grade I would fall often in the middle of gym class and kind of black out and I was missing alot of school from all this...my gym teacher finally told my mom that she needed to get me checked. She took me to a nerologist who said it was migrains and puberty and put me on meds for migraines...although the meds didn't help any, this answer saticfied my mom, but I continued to get yelled at from time to time when I would get sick in public or at school. When I reached 9th grade in highschool, the attacks got less frequent...but by 10th grade, they were back in full force...my mom took me to the same nuerologist who again said it was migrains and puberty...she took me to another nerologist who put me through many test while I was hooked up to an EKG or something and she said she saw some activity but not enough to go on...this saticfied my mom and once again the doctors visits stopped. I had been rushed to the hospital twice by ambulance...once from my friends house and once from school...I avoided telling people that I was sick because I had no explanations to give them when they asked why my mom didn't take me to more doctors and all...I married my highschool sweet heart (who I also kept it from when we started dating for about three months until he whitnessed it with his own eyes and it freaked him out...he even cried as he sat by my bed, it was very sweet but I felt terrible for not warning him) when we got married, he got a job with insurance and I went to my family physician, explained the situation, he referred me to an ENT, and within two weeks I was diagnosed, put on diuretics and a low so diet. I was so releived...my husband had actually been the first to diagnose me because he looked my symptoms up on line and found MM...so when I heard that is what I had, I wasn't a complete stranger to what it was...but we researched more about it anyway...and since my diagnosis, I have been through four years of continuous trial and error and so far no treatment has been successful. I still get anxiety at times when we go to big places. I am terrified to get sick in public and yes, I blame it on my mom for yelling at me and not believing me for so many years...I know logically I will not get yelled at any more, but it has scared me enough to not go out when I don't feel well...Even though my husband helped me get diagnosed, I can tell he is getting a little fed up with it because I am sick sometimes for weeks at a time so we don't go out and do anything if I am feeling too bad and he gets a little annoyed at having to drive me everywhere because my ENT strongly advises against it and he advises against me getting a job too, I can't claim dissability because my husband has a 401k even though lo so diets are more expensive then most everything else...and my doctors appointments and the fact that I can't work, and the fact that we want to save our 401k so my husband has something to retire on, and the cost of meds...none of that seems to matter to our great state of Alabama government...so anyway, that's my history in a nut shell...i thought it would be shorter then that though. Oh well. How did it happen to you?
     
  2. peggoins

    peggoins Stop the world from spinning!!

    I took an ear infection in the middle of 1999.. Went to the doctor they gave me meds then the vertigo attacks never left nor did the stuffy feeling in my head or the tinnitus so jan 2000 i was referred to an ent they done tests and told me it was mm.. I was put on salt restriction and meclizine said there was nothing they could do so i stopped the ent visits.. fast forward a year i went back to a different ent same story same dx.. fast forward 2 years all my symptoms were worse went to another ent same story same dx.. In 2006 i started having some diff symptoms so i was referred to a neurologist because of the 24/7 lightheadedness/dizziness, tunnel vision, migraines etc.. dx was mav along with the mm.. have been to the new ent regular since 2006.. Over the years i have seen 6 different ent's and a neurologist.. All the same dx and all the same meds except the meclizine, i went to valium.. And thats my 2 cents worth.. I mostly went to so many ents because i guess i just didnt want to face the facts of having mm and mav and i always hoped for a different dx but no such luck!! And my hubby has been great through all this!! ;D Peg
     
  3. rose

    rose New Member

    Dancing, sounds like you went through a pretty rough adolesence (sp?). My story begins in about 1994 when my husband and I were living in Iceland (he was stationed at the NATO base at the time). We had been living there since 1991. I would fly home to Florida at least twice a year, usually in the winter. One day, when I dropped my youngest off at daycare, I went to take off my seat belt and when I turned my head, I got this off balance/dizzy feeling. I thought it a little strange, but ignored it. It continued, so I went to the base doctor who couldn't find anything wrong and I can't even remember if they even contributed it to anything. This was long ago and my memory is not so good anymore, so bare with me here. It kind of went away for a little while, don't remember how long. But, it came back, and came back hard. I never vomitted, but sure felt like I was going to, and I couldn't move my head a fraction of an inch without feeling like I was spinning madly about. I again saw the base doc, who, again, didn't find anything and referred me to a civilian ent (remember, this is in Iceland). I remember this ent looked in my ears, up my nose, and down my throat. He did some strange "test" in which he shoved wet paper towels up my nose :eek: ??? That was very uncomfortable, to say the least. He also could not find anything wrong and I once again can't remember if he gave me anything for it (I don't think so). So, I just went along my merry way and continued having these attacks. I did start to notice that right before having one, I would get a soft ringing in my ear. Kind of like the sound you hear when having a hearing test. In 1995, we moved back to the good ole USA and I never had another attack. In October of 2008, I noticed my hearing in my left ear was really bad. Went and had a hearing test by my occupational health nurse and discovered I had 70% loss in the high pitch range. That is when I started noticing the tinnitus. Went to an ent at the local hearing and balance center and went through all the hearing/balance tests and was dx w/mm. I was told to go on the lo so diet, so I did and it helps the tinnitus, but still have it 24/7. I get the slight dizzies every now and then, but have not suffered any attacks (knock on wood) :) I am very, very thankful of that. I go next Tuesday for a follow-up and am anxious to see if I lost any more hearing and what the doc will say. That is my story.
     
  4. Daize

    Daize New Member

    This all started for me in 2000, because of very strong chemo., I was dx with Ovarian cancer stage 3 in May 1997, I was in my late 40's. I went from 125 lbs. to 89 lbs. I truely thought I was going to die.

    My husband and I were told by my oncologist on Nov. 11, 1997 that I was in remission, tears flowed, and I even hugged my doctor. My two children and all family and friends were beyond words.

    Everything was going along okay, then while in kitchen in summer of 2000, the room was spinning and I slowly layed on floor, the room came moving, I threw up (sorry for description) and somehow, got up and got washcloth, wet it and put on my face and wrist. what seemed to be hours was only 10 min....the vertigo stopped, and I drank some water, went to bed and rested, the next day called my primary care who saw me right away and then refererred me to ENT in next town.

    I talked to him and he LISTENED to me, we talked, he talked and dx. was Menieres disease. Told him about chemo. and cancer and he stated that was the cause of menieres....one of the side affects of the chemo, was possible hearing loss. ENT put me on meclizine, dyrenium, and HCTZ and also had hearing test done. Gave me a pamplet (sp) on menieres and I see him every 4 months from that day on.

    As time has gone on, I have had sparatic vertigo attacks. However, I have 24/7 tinnitus, 25% hearing in left ear and 75% in right ear. I am hearing impaired, wear hearing aids as of March of this year.

    I have a calendar journal that I keep of my meds, and make a note of what sets me off.

    I do balance exercises as I tend to lean back but not fall back, went to PT for this. Also have had MRI w/dye by neuro. doctor and all negative.

    My husband, two grown kids, and my whole family are very supportive.

    This site is my savior.

    I am very grateful to be alive. Live one day at a time. some days good...some not so good.


    low sodium foods, some I just can't have.


    That is my history.

    Thank you for posting this title.

    Have a good day.
    Ruth :)
     
  5. dancing_kiwi1986

    dancing_kiwi1986 New Member

    I was put on meclizine back when first diagnosed also...I stopped taking it because I couldn't do anything because I was over come with extreme fatigue! There were times when I was so tired I couldn't even lift my arms to feed myself or even chew the food...my mother had to feed me many times because she felt so bad for my zombie like state. It was the worst medication I have ever taken!

     
  6. dancing_kiwi1986

    dancing_kiwi1986 New Member

    I couldn't help but LOL when I read the part about the wet paper towels...I wonder what the doc thought that would do, LOL. Very funny. Its good you haven't had any more attacks. I am very happy about that.
     
  7. dancing_kiwi1986

    dancing_kiwi1986 New Member

    Your welcome, and I am sooo glad you cancer is in remission. Yeah I know that talking about their history with MM helps people deal with it, I know it does me. Even though my mom is supportive now, she wasn't always...and still isn't very supportive when it comes to my diet...talking about it makes me not blame her so much...I still think, however, that had I went to the doc and been diagnosed sooner that maybe I wouldn't suffer from it so regularly now. But luckily my severe attacks went from every week (where I was throwing up blood regularly) to every two weeks where I only throw up blood every once and a while after i was put on a diet and meds.
     
  8. connordr

    connordr Me with grandkids

    My first vertigo attack was in 1991, and I got a prescription for antivert, but no mention of MM. Then my hearing began to go. I had to hold a phone to my left ear, sit at the right-hand cornert of the table in group, etc. and finally went to an audiologist in '02 who told me my problem was the inner ear, but recommended a consult with an ENT doc. I had continued to have occasional vertigo and nausea but figured the Arby's ham and swiss sandwich must have been tainted. I never connected it with the hearing loss. Before I went to the ENT doc, however, I had a monster vertigo attack with nausea so did a search on vertigo, found the Northwestern Med School site, and lo and behold, learned a new word: Meniere's.
    Checked the Johns Hopkins site for a complete run-down.
    When I went to the ENT doc, he asked me why I was there, so I told him Meniere's. He was properly skeptical of my self-diagnosis, had his own audiologist test me with identical results as the other one, and said, Gee, I was right!
    Just to make sure he had me get an MRI to make sure I did not have a brain tumor. No tumor, so MM it is. Cut back the salt.
    ME: "How low?"
    HE: "As low as you can get."
    So I keep the sodium intake to under a gram a day, and space it out.
    Other than that, my diet has not had to change. I drink coffee, eat chocolate, drink wine or a shot of whiskey every day, and no problem. My other triggers are loud persistent noise. I use ear plugs when I run the vacuum cleaner, Fluorescent lights, twisty mountain roads, and just plain fatigue. I have found I dare not skip meals.
    It's been about five months since my last real vertigo episode --the room spinning, this time from right to left which was an innovation-- but I have had a few minute or less light-headed incidents, or dro attacks. I gripped the arms of the chair for dear life thinking the whole world was tilting 30 degrees to starboard, and we were not at sea!
    DC
     
  9. yiraheerai

    yiraheerai Crystal

    I think I've blocked most of it out. I remember having to ask my mom about some details and looking through copies of my medical records for others. I wrote it out in my journal for my friends to read, actually.

    In 1998, I'd been on the Swim Team during my middle school years. I never actually went to a meet but I went to every practice. We did some diving, I think my best stroke was the backstroke. Naturally, when my hearing started to cloud over, we figured it was swimmer's ear. I was in choir too. That was the main thing I remember, I think -being at a concert and telling my mom I couldn't hear very well. Everything was clouded.

    Then it's the weekend, my parents are fussing over me, and my mother puts her lips to my ear and yells that we're going to the ER. I did have some sort of inner ear infection, I think, and according to the entry I wrote back then there were multiple visits to the ER over it. I only remember one ???

    I do remember going to the House Ear Institute in LA over it and all they could tell us was what Dr. Horn in Albuquerque and Dr. Davies in Carlsbad had already told us. Never found out the cause.

    I also remember my hearing aid being stolen, mostly because I never wore it. The little boxes look like something you'd have jewelery in, yeah? Someone probably snatched it out of my bag thinking "Oohhh shiny!

    "...Wait, this is... Well, crap."

    It's stable for the most part now. The hearing seems to get worse a little at a time. I can remember working retail in 2004 and working it now and thinking "..It wasn't NEARLY this hard back then."
     
  10. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    Kiwi

    The story of your youth and teen years really got to me. Those times are tough enough even when you just have the "normal" problems to deal with but to have this superimposed and nobody believing you must have been awful. I also feel badly for some of the others here who are now or started young. People in college or dating or with young kids and careers that are just starting. I remember it was bad enough with all the work pressures and young daughter and house payments, and Yadda Yadda.

    I suppose that's what sometimes, in a perverse sort of way, feel fortunate that this thing didn't hit me till late life. It has screwed up our plans for retirement and I not only feel bad for me but for my wife. For years, I kept postponing and putting off a lot of the travel and things she wanted to do because I was "too busy at work" or this contract or that proposal or some "important" event had to be done with such a tight schedule. It was always "we'll do that after I retire" and now...... I "retired" about 15 months ago but still work part time (too much part time) because they keep dragging their feet in geTting a replacement that I can mentor and "this thing is too important" or "that thing has to get done" and I've had it out several times with them. I only stay because I've sort of made a "personal commitment" to some long time customers not to leave them hanging out to dry. However, I know I can walk out at a second's notice, I don't have to take crap from anybody, I don't need the money, and it helps to keep the stress level down

    In any case, my wife and I did at least did get a nice trip into Italy before this mess hit me about a year ago. It started in the classic way, weeks of "ear fullness" and reduced hearing which were attributed to "allergies". After three serious 2-3 hour full blown vertigo attacks in two weeks (two at work) they were still saying "allergies". It wasn't till after two more 2 hours sweatting puking spinners that I begged, insisted, threatened that I needed a specialist. So I was finally officialy diagnosed the day before my mother dropped deat suddenly in her garden of a massive heart attack. Then my daughter lost her job an was afraid of losing her house. Last summer was supposed to be a fun retirement time of motorcycle trips, golf, and travel but it turned into one of the worst, most depressing times of my life.

    Anyway, after about three or four months I sort of got my act together. My wife (thank God cooking is a bit of a hobby with her) and I come up with some good lo-so alternatives for eating. I admit I was raised on spicy tasty food and I can't live with "mush in a can". I forced myself to hit the golf course as much as possible and forced myself back onto the bike now and then to feel alive again. In October we decided to take our first cruise vacation of our life because I was a bit afraid to try flying again and the thought of long hours driving concerned me. It was great and we're going on another one in three weeks. Tie that to my daughter finaloly finding a new job about a month ago, and I figure this may be as good as it gets.

    I still live with a plugged ear most of the time, can't hear in my right ear or have hypercussus so bad it's painful. I still get minor dizzies a lot of time and vertigo attacka maybe every month on average, but I figure this is now who I am and I have to do as much as I can with my life before it gets worse. I figure I'm not ready to jump in the grave just yet.

    Good luck. Hang in. Keep the faith. It could always be worse, is my motto now.

    Tony
     

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