Do you ear what I ear?
June 1, 2009 at 6:35 pm 29 comments
Often I am asked what Meniere’s Disease is so I thought I’d take some time to explain. Here is the Mayo Clinic’s definition:
“Meniere’s disease is a disorder of the inner ear that causes abnormal sensory perceptions, including a sensation of a spinning motion (vertigo), hearing loss usually in one ear, fullness or pressure in the same ear, and ringing in the same ear (tinnitus).”
Sounds so simple, doesn’t it. What they don’t say is that sometimes it leads to complete deafness in one ear and also could affect the other ear and leave you completely deaf.
Let me take you through a small tour of my life with Meniere’s:
Phase 1=The best phase 
Me at my best, living life happily. It’s at this time I could stub my toe, my car could break down, or I could have sneezed while putting on mascara and I’d say “Well, at least I still have my health”.
Phase 2=My ear becomes slightly full. Ever been to a rock concert and forgotten your ear plugs? You know the next day how everything is muffled in your ear? That’s phase 2. It’s at this time I start the dreadful diuretic and pray it clears.
Phase 3=My ear goes from slightly muffled to OMG it’s loud! It feels like my head has weights in it, as it pulls to one side. Usually my neck muscles on that side feel strained and even though I can’t hear certain things, I grow completely irritated at any loud noises. The sound of normal talking human conversations, the TV, the sound of a spoon scraping a bowl, etc.
Phase 4=And I’m out. Attack hits. This is the scariest part. My ear goes from loud to me seriously believing a train is rushing around in my ear. Once it starts screaming my entire body starts to panic as everything starts spinning. And I don’t mean slightly. Try drinking a 12 pack of beer and stepping onto the spinning tea cups at Disney with a ruthless kid who thinks it’s fun to go faster and faster and then we’d be talking on the same level. At this point, it’s very difficult because I start developing food poisoning symptoms where I have to get to the bathroom NOW. But I can’t. I’m spinning. This is where the most accidents happen. I’ve become pretty bruised up trying to reach my destination. Once I somehow crawl to the bathroom, the symptoms start-and yes, by food poisoning symptoms I mean not only making it to the bathroom, but having to pull out a trash can in front of you as well. And keep in mind, I’m still on the twirling ride. So, I get massively sick and then strangely, I start yawning uncontrollably. Yawn after yawn after yawn. Once the yawning subsides, I start crying uncontrollably. Tears come and usually I try to think of something sad because what my body is trying to do is rid itself of the excess water crap in my ear, so I treat it like a friend-I try to help it along. So after that I get so tired, I land on the floor. Keep in mind I’m still spinning. I have to lie there exhausted on the floor and stare at one mark. Sometimes it’s a small mark on the wall, or a toy on the bathroom floor, whatever. Then as I lie there, it happens again. I have to get up and I get sick all over again. Then I lie back down and cope until the spinning has stopped.
Total time of Phase 4-Takes 2 hours, usually on the dot. Then I’m so exhausted I sleep for the rest of the day. But not until I have an apple. Yes, for some reason my body craves an apple after the attack.
And now I will comment on a lot of questions and comments I’ve received…
1) Aren’t you scared a lot?
Yes and No. Phase 1-2 No. I go through life happy and trying to cope. Phase 3-Yes, slightly. I know it’s coming and do everything in my power to stop it. Phase 4-Intense panic. Also, over the years I’ve developed a major fear of throwing up (that I seem to be slowly conquering due to Meniere’s). So, yes, it terrifies me.
2) My ear rings a lot too.
Well, great. Count your blessings that’s all you go through.
3) Can I have your phone number? I could probably whisper sweet nothings in your ear to heal you.
When I ever see this as a possible cure, I’ll consider it.
4) Can’t they do anything to stop it?
They could, but they don’t want to unless I’ve done everything possible to cope. In other words, they want me to suffer for as long as possible. The problem with surgery is it could automatically cause deafness. So, they’d rather not add you to the list of people they’ve screwed up.
5) You seem bitter.
Nope, just in Phase 3 right now and starting to feel a little worried.
6) Want me to go get you a sponge? You can swallow that and maybe it would soak up some of that excess water.
Gee, thanks Ian. I knew I could count on you. LOL
7) Do you ever leave the house?
All the time. Fortunately, I experience Phase 1 & 2 a whole lot more in my life. I will usually stay close to home when Phase 3 strikes and always pray to the gods of love and healing I’m home when Phase 4 hits.
8.) I saw it on my blog I can cure you. Can I have your phone number now?
Sorry, still not buying it.
9) Why don’t you just eat an apple before the attack, that’s obviously what your body needs.
Do you want the simple answer or the smart ass answer? Simple answer:I’ve tried that. Thanks for trying to help. Smart-ass answer: Why thank you Sir Issac Newton! You’ve just solved what every doctor in America hasn’t been able to and you barely graduated from high school. To what do I pay this honor?
10) What have you done to cope?
I’ve stood on my head, I’ve tried chiropractors, I’ve tried virus and bacteria meds, I’ve tried ibprofen, I’ve tried OTC allergy medicines, I’ve tried crying a lot, I’ve tried massages, I’ve tried diuretics, I’ve tried sleeping it off, I’ve tried natural diuretics, I’ve tried accupressure points, I’ve tried exercise, I’ve tried low salt diets, I’ve tried drinking more water than I should, I now have an addiction to Gatorade. Nothing has worked so far.
10) Oh, so that’s why you work from home.
Uh, no. I work from home b/c it’s been a proven fact I’m smarter in business than most of my ex-bosses have been.
11) What’s the scariest attack you’ve had?
I was taking my daughter to school and it hit. Luckily the force was with me and I was able to drop her off and get home before I hit the floor. The school is only 5 minutes away. Still very scary and hard when you come up to a red light and everything starts spinning. I know better now. Once I hit Phase 3, I put my keys away and rely on the beautiful friendships I have.
12) I think I have Meniere’s, where can I go for more info?
First, don’t go to your regular doctor. I can’t tell you how much time and money I’ve wasted going to general practioners and chiropractors who claimed they could “heal” me. I advise you to go to a ENT doctor first. I’ve heard chiropractors can help ease symptoms, but be wary of the ones who claim they can heal! Afterall, this is a disease, a force to be reckoned with.
Conclusion
Even though there are times I’m down and the best part of my day is watching Bonanza on TV, I always think it could be worse. I could be suffering in both ears or be completely deaf. So for that, I am still thankful to be me
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1.
Dan | June 1, 2009 at 6:57 pm
Wow! I’m so sorry that you are going through this, Amy. But thanks for taking the time to tell others about it. I’m sure that they will appreciate the struggle, especially if they share it. If there is anything I can do let me know.
2.
Amy | June 2, 2009 at 10:38 am
Thanks Dan
Will continue with EFT and see how it goes 
3.
Jared Earle | June 1, 2009 at 7:09 pm
The food poisoning symptoms are caused by sea-sickness. It’s all ear/balance related.
Closing your eyes (or even better, total darkness) removes the visual cues that disagree with the fake balance signals your ear is sending and reduces the chance of vomiting.
Oh, and un Europe, we get Betahistine and that has kept me pretty much attack-free for over a year.
http://en.wikipedia.org/wiki/Betahistine
4.
Tiffany | June 2, 2009 at 9:55 am
is that drug not available in the US? sounds pretty ideal…
5.
Amy | June 2, 2009 at 10:39 am
I was thinking the same thing. I don’t know if we have that here. We should, but I haven’t heard anything about it. We need to ask our docs about it!
I can’t close my eyes. For some reason it makes it a lot worse. But I am glad you’ve found some relief, Jared!
6.
Karin | June 2, 2009 at 7:28 pm
Just wanted to comment on Betahistine or Serc as it is known here in Canada – tried it last fall and it did stabilize me during a couple of weeks of really debilitating attacks, but at the cost of extreme stomach pain. I had to stop taking it. Still have a large supply and if I am in a weeks worth of bad episodes would likely take it again.
Ironically not prescribed in the US, and Meclizine no longer available in Canada for some reason. I buy Mec in bulk when in the US, though it hasn’t been helping me as much as Gravol in recent weeks.
7.
Tiffany | June 2, 2009 at 6:38 am
I really like your post– while my meniere’s doesn’t follow the exact same pattern, it is amazing how closely I can relate. The steps are essentially the same, and since they can often make you feel crazy– especially the sensory sensitivity– I can’t tell you how nice it is to share. It is not always easy to explain to someone, “Well, I can’t hear what you are saying, but your printer is squealing at such a high pitch I can hear it across the office building when you can’t even hear it from your desk.” The validation is wonderful.
The only thing I would say is that the “right” kind of care really depends on the patient and the doctor. I went to an ENT right away and got essentially no response other than “well, pray it gets better. Oh, and here is some essentially pointless but highly addictive Valium. See if that helps” Then I dropped the ENT and found a great general practitioner. He has helped me find a vestibular clinic in the state, PT to help stave off attacks and to help me prepare for any dizziness and vertigo I do experience. He is also highly supportive of non-traditional techniques that I find really helpful, including regular bodywork and craniosacral therapy, pranayama (yogic breathing), and meniere’s-specific chiropractic care.
My point is DO NOT STOP LOOKING FOR THE RIGHT CARE FOR YOU. If your family doctor is not offering help and hope, look for a great ENT, or vice versa. If traditional medicine isn’t helping, try some non-traditional approaches. There are ways to manage your meniere’s, decrease the frequency of attacks, and live a life with less, if not zero, debilitation.
8.
Amy | June 2, 2009 at 10:45 am
Thanks for your sweet words Tiffany
I am still searching for the right combination and try to do everything I can to prevent it, for I have already experienced some hearing loss in that ear. What I wish for is that it will one day just go away. Strange this has happened in some people. Let’s hope we can all be so lucky 
9.
Karin | June 2, 2009 at 9:51 am
What an excellent blog. I am recently diagnosed and can relate to everything you have written about. I too have tried many different methods to see if they help – massage therapy, acupumcture, diuretics, etc.
Right now my drugs of choice are Ativan and Gravol. Meclizine worked for a long time for me but doesn’t seem to help as much as Gravol does now.
My triggers seem to be 1) STRESS!! the most beloved of our daily companions, 2) barometric pressure changes.
Am still journalling and trying to see what else might affect me.
Right now seem to be in a remission period (fingers crossed) after being hospitalized 9 times since last October with paralytic vertigo and vomiting. I have decided if a remake of the Exorcist is ever shot in my town that I will apply as a stunt double.
Fantastic support group on Facebook got me through a suicidal winter and I am doing quite well other than tinnitus 24/7 and general imbalance.
I think once I really knew it wouldn’t kill me that I was better able to cope more calmly with the attacks, though I sleep for about 3 days after one.
Anyway, thanks for the article and best of luck.
10.
Amy | June 2, 2009 at 10:53 am
Karin, it looks like you’re taking an active approach through journaling to recover
Very good advice to all 
A friend of mine helped me through one of my attacks. I told him to take a picture of me while I was down because I could very well be the new spokeswoman for Meniere’s, LOL A Meniere’s Cover Girl 
I’ve found I mostly have symptoms in the Spring and Fall, which my ENT thinks allergies aggravate it. Being a Southern Gal doesn’t help, b/c we have the worst allergies of all. And yes, stress is not fun
I laughed about your Exorcist comment
I’m glad you were able to survive the hospitalizations and suicidal emptyness!
Keep in touch-I’d love to continue to know more about your journey
11.
Amy | June 2, 2009 at 2:49 pm
Wow. And also by my last comment you can see I love smiley faces
12.
Karin | June 2, 2009 at 7:10 pm
Thanks for the words of support. It was a bittersweet winter as I was also trying to maintain a long distance romance (but that’s a REALLY long story for another time LOL) while struggling through thoughts of trying to end my life when I was at my lowest.
My long distance love was a big reason to keep pushing onwards and praying I was going to feel better then I did at certain moments.
Started back to Yoga again after several years away, but have been finding a lot of the poses difficult in terms of balance issues. My yoga teacher feels that they will ultimately aid in restoring balance, but since she has never actually experienced severe vertigo she can’t really understand the fear and paranoia a yoga pose can create, once I start to feel woozy.
Anxiety around attacks has been a huge struggle to overcome, and I have daily moments where I have to talk myself ‘down’ from getting worked up when I start to feel particularly heady or have mini spins (as I like to call them).
I guess what I found most frustrating was my ENT’s reluctance to diagnose me for many months. I understood the need to eliminate tumours, etc, but even the paramedics carrying me out of my house during bad attacks and the ER doctors all recognized it as Meniere’s.
SIgh…anyway, onwards and upwards.
Flying to Michigan June 24 and it will be the first time I have flown since early January and I will admit some tiny anxieties about possible problems, but have never found flying to affect me before.
I am yammering on, sorry. Good to connect with others who have this ridiculous disease. So much more study needs to be done to help people with it.
Have a great day!!
13.
happynspirit | June 2, 2009 at 9:20 pm
I understand the anxiety you feel. You start to panic and then have to remind yourself to try to remain calm b/c the extra stress can make it worse!
I have not flown yet since diagnosed, but got my passport last year and I’m ready to use it! Do you wait until you are symptom free before you board? I heard about a boy who lost his hearing completely while the plane was descending, of course he had it in both ears. I have troubles with the pressure in the car while I have symptoms, couldn’t imagine a plane ride!
Has anyone tried the Wii Fit? I heard it’s got a lot of balance games that help.
14.
Rob Stefanovski | June 3, 2009 at 5:22 am
That pretty much sums it up!! Thank’s for sharing that, you’re not alone. I flew from Australia to New York with sypmtoms and didn’t have too much problem with my ears and equalising.I also flew back after a pretty serious attack in VA beach.I only suffer in the right ear.That was 2 and half years ago, just suffered my first attack since then 3 weeks ago.Hope it’s a long time before the next one!
15.
happynspirit | June 4, 2009 at 11:16 am
Wow, so I bet you thought you were not going to have to deal with it again! Sorry to hear it reared its ugly head! Hope it doesn’t come back!
16.
Terron Vawter | June 3, 2009 at 6:02 pm
I have a Wii Fit. Love it! You’ll have to come over and balance on it! It is fun. It’s not real fair when it tells you whether you’re ‘Overweight’, ‘Normal’, or ‘Underweight’. It assumes you’re all fat and doesn’t have a way to judge whether the weight is fat or muscle. I’m not saying I’m muscular, but I don’t necessarily agree with Wii’s assessment. LoL
OK, that’s enough about my Wii. I read where it says 1 in 500 people have Meniere’s. About as many that have MS. The whole thing sounds unpleasant to say the least. From a medical perspective, I am fascinated by it. It’s just too bad that people have to suffer physically. I’ll stay tuned to see what others have to say.
I hope everyone feels better soon!
17.
Dan | June 3, 2009 at 11:39 pm
I have used EFT before to help people with nervous system disorders. Sometimes when it doesn’t seem to be working I ask what they eat and what they cook with. Often they cook with Canola oil. You should Google that stuff. It is rape seed oil which is not fit for animal consumption. The way that it has to be processed makes it a super stable oil which means it won’t go rancid and it is a harsh way to extract oil. As a rule of thumb, anything that doesn’t go rancid usually is not good for you.
Peanut or coconut oil are better. Even lard is better though it has a bad rap.
Then try EFT and usually see your results start to come.
http://emofree.com is a good website for finding out more on EFT.
Hope that helps someone.
18.
happynspirit | June 4, 2009 at 11:35 am
Dan, I only use Olive Oil when cooking, and I’m not so sure about your rule of thumb. Honey doesn’t go rancid, does it? And honey is good for you
19.
Dan | June 5, 2009 at 12:14 am
Hey Amy,
How’s it going?
That’s why it’s a rule. To rules there are sometimes exceptions. Fermented foods don’t go bad for a very long time and can be very beneficial. And another exception is honey. Of course, it isn’t always good for you and amounts of anything is something to consider. But the rule is pretty solid. If something is sitting on a grocery store shelf and is outlasting the metal shelf itself
you do well to ask if it is healthful.
Olive oil is not a good oil to cook with. In terms of healthiness it is way overrated as well. Grocery store shelves are full of the stuff following the myth that it is responsible for the famous health and diet of the people of the Mediterranean. But there is much data that shows that olives and it’s oils have only a fraction to do with this phenomenon.
Olive oil is a short chain oil that cannot endure very much heat without transforming into long chain transfats. It’s a good cold use oil you can put it on salads but it’s not good to cook with. That is why I recommended the ones above.
Transfats get misinterpreted by our bodies as omegas (3′s & 6′s) and the cells incorporate them as omegas…in nutrient carrying and metabolizing and structural duties among various other vital jobs. Transfats make us sick and diseased when employed thus.
20.
happynspirit | June 4, 2009 at 11:36 am
Terron, I’m going to have to try the Wii Fit!! I’ve heard it’s fun, are there any balancing games that could possibly help? (Please turn away when it gives me my assessment
)
Yeah, Meniere’s isn’t fun, but you enjoy the times you are well and make the best of life
21.
Justice | June 4, 2009 at 2:49 pm
Thanks for writing this up. It’s good to understand what other Menieres folks are dealing with. By your scale, I live in a Phase 3 almost all the time. With nice super duper attacks happening whenever they feel like.
Keep up the writing and the working from home. Wii Fit would be a good exercise for us balance challenged. I’m going to have to try it myself. Vestibular rahab isn’t too different from the exercises I’ve seen on wii fit.
22.
happynspirit | June 4, 2009 at 5:05 pm
Wow, Justice! I’m so sorry! What medications have you tried? Hang in there!
And too bad Count Vertigo is a DC Comics supervillian instead of superhero
23.
Positively Present | June 15, 2009 at 4:36 pm
I really enjoyed reading about you here. Thanks for sharing so much of your journey. It’s great to be able to open up and share the way you have here.
24.
happynspirit | June 15, 2009 at 5:14 pm
Thank you! I enjoy your blog as well! I especially loved this article: http://www.positivelypresent.com/2009/06/the-classroom-of-life.html
25.
Marie | June 15, 2009 at 9:55 pm
My doc put me on naproxen and loratadine for mine. I must say the combo did wonders for my sinuses and arthritis but nothing for my ear (right one). I’m interested in the meds mentioned above too…anyone know yet if its available here in the usa.
I take motion sickness tabs (that’s their name, CVS) would an attack hits for me, it knocks me out but when I wake up things aren’t so spinny and out of control.
26.
happynspirit | June 15, 2009 at 11:10 pm
As far as I know we don’t have that certain drug in the States. Were you diagnosed with Meniere’s or is something else going on with your ear? Are you a lot of the time dizzy or do you have certain attacks? Regardless having ear problems isn’t fun! If you do have Meniere’s for sure you may want to find a specialist and try diuretics. It is no cure, but I have found them to be helpful. Good luck!
27.
Maggie | June 19, 2009 at 2:59 pm
2 hour attacks? Lucky you. Bi-lateral here, 8 hour attacks were the norm. First one ear would go off, then the other just for kicks. Rarely at the same time, that would be too economical.
Note the past tense. Haven’t had an attack of any kind in 5 years (knock on wood). Price of being dizzy-free is steep, though: Can’t hear boo. I’ll take the deafness, thankyouverymuch as they have cochlear implants now (which oddly seem to relieve Meniere’s symptoms as well, so I’m told)
You only have it in one ear? Some folks get all the luck. ;^)
28.
happynspirit | June 19, 2009 at 8:00 pm
Wow Maggie! I’m so sorry you’ve had to go through that! The good thing is that (knocking on wood for you) you haven’t had an attack for 5 years! Do you have hearing aids or thinking of getting the surgery?
29.
Maggie | June 20, 2009 at 2:14 am
No worries. It’s been 14 years since my first vertigo attack. It truly doesn’t bug me anymore. I’ve got a better life now than I did before so it’s tough to begrudge anything that got me here. I have one ear that’s totally “dead” (no hearing or balance left). The other ear worked like a trooper to compensate and did admirably for several years, but I’m left now with a hearing aid in that ear and while I can “hear” most all sounds, I can’t make out the fine-tuning of speech anymore (everyone sounds like they’re talking through a bad bus depot loudspeaker complete with static). I’m a candidate for a cochlear implant now and I’m looking forward to that.
As for your attacks, just ride them out knowing that they’ll eventually pass. Take it easy, stop to smell the roses, keep stress levels down, don’t over-commit your time and let everyone know that your attendance at work or social events is always “…Meniere’s permitting…” You have permission to flake with no notice. Slowing down is really the best gift Meniere’s gave me (though I was resentful for years at being “forced”). The world is beautiful and if it weren’t for Meniere’s I don’t know that I would have taken the time to notice. (I’m enjoying your writing – you have talent).