June 15th 2007 11:20 am
You Don’t Have To Read This
Edited 1/23/2008 to add: I have decided to close comments on this post because I am uncomfortable with some peoples’ view of my website as a Meniere’s “group.” I appreciate that so many people have responded to what I wrote but this is simply an account of one patient’s battle with MD and not an appropriate place to ask medical questions, give medical advice, or seek support from a group. Please read the lengthy post I wrote about some of the many online resources available where you can find more information or support groups. If you want a quick link to people to talk to please visit menieres.org. They have several forums and you can register and participate for free.
But I need to write it.
Third time is the charm. That’s what the doctor said, that’s what Stephen says, and I need to make myself believe it. I know that the mind has powerful effects on the body and that this third injection of poison into my ear has a better chance of working if I believe it is going to work. But it’s hard.
I was diagnosed with Meniere’s Disease five years ago this summer (July 2002). At the time, I was glad to have a diagnosis so I could learn more about it and how to deal with it. With treatment for MD, you start at the very beginning, it is of course a very good place to start. So, low sodium diet and diuretics. I believed that would work. It didn’t. Add on some Antivert to control the dizziness. I believed that would work. It didn’t. How about some Valium? Surely that would work. It didn’t. Then I found out about this amazing new device called the Meniett and I said sign me up, that’s gonna work! It didn’t.
I should say that all of these things worked to some degree. Or maybe helped is a better word. I discovered that sodium does indeed affect my symptoms and so making changes in my diet helped, but not enough. Same for all the meds, they helped with the symptoms when they happened but not enough and they didn’t stop them from happening in the first place. When I started the Meniett, we thought it was a miracle but then it slowly seemed to be helping less. It seems to help with pressure build-up but it won’t stop vertigo.
In February 2003, I had to quit grad school, move back to St. Louis and in with my parents. By August of 2003 we were desperate. I had switched from a general ear nose and throat doctor to my current doctor, a neurotologist, who specializes in these things. My mom had to quit her job to take care of me since I’d been home-bound and sometimes bed-bound for about six months. And we had quickly used up all of the traditional, non-invasive treatments for Meniere’s Disease. So, in August 2003 I had endolymphatic sac surgery. And I believed it was going to work. It was rough. Really rough. I had massive headaches and had a very hard time being weaned from the Vicodin. All kinds of other things in my body seemed to stop working properly. I couldn’t tell if the surgery had helped or not.
Jump forward another six months to February 2004. At this point I was finally at a point where the vertigo and other symptoms were under control. I was out of bed, out of the house, and able to live a much more normal life. I still had to be careful, avoid places that were too loud, too chaotic, too brightly lit, and any other number of triggers I learned to watch out for. At the time I thought, finally something has worked. Looking back now, I wonder if the surgery did work. Six months is a hell of a long recovery. Maybe it was just a spontaneous remission. That happens with MD.
So, with the Meniere’s ever present but under control, I continued on with my life. That took some time. A lot changes when you go through something like that. I had a lot of time to evaluate my life and myself and decided on a career change from education to librarianship. That was rough. It was rough on my friends and I came out on the other end with not as many as I’d started with. It was rough on my relationship I’d been in for several years at that point which then finally ended after we realized that I was doing better and we were still a mess. Basically, life as I had known it before MD was gone.
So I started over. In the fall I started library school thanks to a distance education program that allowed me to attend classes in St. Louis and online. I re-established old friendships and tried to go back to the way things were before to some degree. But it wasn’t working and then the depression struck. Depression is something I’ve dealt with off and on since I was a teenager but this was an exceptionally bad episode. Finally, in February 2005, the depression was under control and I was back on track. But again, things were different. Most of the friends that had stuck with me through the Meniere’s weren’t able to stick with me through the depression. I don’t really blame them, it must have been very difficult to be friends with me for those few years and I am eternally grateful to those that did stick with me.
But I was different then. After the year long battle with MD, I came out different but didn’t want to believe it, I wanted my life to go back to how it had been. When I tried to, it came crashing down around me, hence the subsequent battle with depression. And when that was over, I knew I was different and I was ready to move on with a new life. I got a job working 10 hours a week at a local public library and that made all the difference in the world. I focused on school and work and family and myself and found a sort of peace with all the elements in my life. And finally, finally the Meniere’s was under control.
In 2006, I went up to 27 hours a week at the library and kept on plowing through school. Things were going well. I didn’t have a big group of friends but I neither needed nor wanted them. I’d realized that I am in many ways a loner and a homebody and I was happy with that. That summer I met a wonderful man in a class on special libraries. In January of 2007 I went up to 32 hours a week at the library and began my last semester of library school. Work was good, school was good, and Stephen and I were making plans to move in together. See what’s coming?
They say that being diagnosed with a chronic illness triggers the same stages of grieving as someone who has lost a loved one. I feel like I cycle through them continuously. It’s quite easy to be accepting of it when its in remission so I hung out in that stage for a good few years there. So when I started having episodes in March, I went straight into denial. Nope, this wasn’t Meniere’s, this was just some symptoms flaring up a little bit. We’d crank some of my meds back up and it would be smooth sailing. The Meniere’s wasn’t back. It couldn’t be. Everything in my life was going so well. It wasn’t fair.
Denial didn’t last long as I barely finished up my degree and was missing a lot of work. I knew the only thing to do was accept that it was back and deal with it. I once again became a regular at my doctors office as we went through the options and eventually decided it was time to go ahead with the Gentamicin injections. Treament 1 had no noticeable affect. Treatment 2 had some effect but still did not control the vertigo. Treatment 3 was yesterday. Which brings me back to needing to believe that the third time is the charm. But you see now why it is so hard for me to believe that? I have believed so many other things would work, only to be let down. My Meniere’s has always been “stubborn” as my doc likes to say and resistant to treatments. Why should this work when the first two haven’t? I’m trying not to think that way but at this point it gets really scary. If this treatment doesn’t work, we won’t try anymore. The doctor’s opinion, and I agree, is that more treatments are unlikely to work if these ones haven’t and the risk of damaging my hearing only increases.
According to my doctor, I have only two good things going for me right now. One is that my hearing remains intact. He seems to think this is quite amazing considering how jacked up my ear is otherwise. The other good thing is that my Meniere’s is only in my left ear. That means I have one good ear, one ear sending good balance signals to my brain. The scariest thing possible is for the MD to develop in my other ear. But the doctor says that the chance of that happening if it hasn’t happened in the first three years is low. I’ve got five years under my belt and still just the one ear so that is encouraging. Especially since if this treatment doesn’t work, the next thing requires one good ear.
The next thing would be a Vestibular Nerve Section. All those bad, wrong balance signals that my bad ear is sending to my brain? The doctor goes in and cuts the nerve that conducts those signals. The brain adjusts to depend on the good ear. It has much the same goal as the Gentamicin treatments but with more control and no going back. It has a very high success rate but it is dangerous. It is brain surgery. The balance (vestibular) nerve and the hearing (cochlear) nerve are very close together, sometimes partially intertwined, along with one of the facial nerves. And of course, the most terrifying possibility in my mind is having a VNS and then having Meniere’s develop in my one good ear. But that is the next thing if this third treatment does not work and I do not have a spontaneous remission sometime soon. That is why I need to believe that the third time is the charm, I need this to work. I need to squelch that uneasy feeling in my gut that keeps saying, “why should this work when nothing else has?”
June was supposed to be when I started working full time at the library. Instead June is when I started a sick leave of absence from the library. I am moved in with Stephen and that is wonderful. But I find myself back in that nasty stage of grieving: anger. Bitterness. I’m just plain pissed off that this is happening again, that this is happening now. Of course there is nothing or no one at which to direct my anger. It just churns inside me. I’m trying to let it go, to believe this is going to work. But I think a way to do that is to briefly, just for a little while, let myself be angry. And that’s why I have dumped all this here, my poor blog readers. I don’t need or want anything from you, you don’t have to say anything, I just needed to say all of this. I needed to get it out of me so I can stop laying awake in bed at night thinking about it over and over. I need to believe that this time, the treatment is going to work.
Edited to add: For those who are looking for more help or people to talk to, please read this post I wrote on the many resources and online communities that are available for you to investigate further. Best of luck to all of you who are living with Meniere’s Disease.
56 Comments »
56 Responses to “You Don’t Have To Read This”
Dobee on 15 Jun 2007 at 3:57 pm #
I had an aunt Mabel - I wrote a little about her in one of my stories on my blog. She had an inner ear problem too, but it was before anybody heard much about Meniere’s disease. When she got older, she would just fall over. Afterwards, she would laugh and it never seemed to affect her life much or the way any of us felt about her. Of course she couldn’t drive, but few women did in those days. It seemed to fit her personality actually.
I don’t know why I wrote that. I really just wanted to let you know that I read your little rant in its entirety and I feel for you too. I used to have terrible anxiety and panic attacks and suffered much like you are now, and lost most of my friends, but one day the attacks went away. Now I have gout and gall-bladder disease and high blood pressure and most of the time I feel like I’m carrying a load of bricks on my back. The funny part is that my life didn’t end. I know you’re having trouble seeing beyond the next thing right now, but there is a life waiting there. Sometimes I wish I could just go back to the time of my worst panic attack. Just knowing that I was going to get through it would have made it so much easier to bear.
Get better, Annie. You deserve it.
Dorothy on 16 Jun 2007 at 5:29 pm #
Annie, Your article is the most interesting I have read on Menieres. I am a four-year veteran of the disease and have been thru all the treatments short of surgery. Your reactions to the surgeries and Meniette are so interesting (to me) because I keep thinking perhaps there is more I could be doing. The surgeon who spoke with me said “poisoning” the ear could make me worse . . . that was enough to scare me out of it. A 3-month remission is the longest I’ve had. I’m 74 this month (I think you are 25). Makes me feel fortunate that MD started when I was 70 and retired. Drs. I have seen believe my symptoms are more migraine than Menieres, but have diagnosed me with both. Looks like they share the same symptoms. I do have hearing loss in my one bad ear. Someone on the internet calls it “mean ears” disease. I agree 100%. I admire your fortitude, even bravery. I plan to watch your website. God bless you, and may the U.S. start paying more atteniton to these diseases.
Dorothy
Brenda on 17 Jun 2007 at 1:39 am #
Hi Annie,
My mom (Dorothy, who posted above)forwarded your post to me. I, too, sympathize with your struggle. I pray that help is on its way for my mother and for others who suffer from this debilitating illness. I will keep you all in my thoughts and prayers, and pray that this 3rd time is the charm!
Brenda
P.S. Happy Father’s Day, Dad!
Eunah Choi on 18 Jun 2007 at 5:39 am #
Hello, Annie,
This article is very inspiring. The subject of your post said, “You don’t need to read this,” but I read your article in its entirety anyhow.
Thank you for sharing your story. As a Librivoxer, I am really grateful to you for spending your precious time to make all those wonderful recordings despite having such a hard time. I am an avid listener of your recording of Anne of Green Gables, you know.
Keep up the good work!
May God bless you, and I hope all things shall go well in your life.
Cheers!!!
In Seoul, South Korea,
Eunah Choi
Tina on 18 Jun 2007 at 10:20 am #
Hi Annie,
I really feel for you. I too suffer from this debiiltating disease and know first hand what you are dealing with. I had an anttack on May 27th and it lasted over two weeks. I felt it getting better and finally I was free of it but low and behold, 6 days later, here it is again. I have been crying, and depressed and miserable. Constant anxiety and hopelessness are all I feel. I am a competetive horse back rider with two imported horses. I take it very seriously, and now I am considering the possibility of having to give up my dream. I am lost and don’t know what to do, but was happy to hear from another sufferer who can relate. Thank you for your letter,
Tina
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Gini on 23 Jun 2007 at 3:17 pm #
Annie,
I have had Meniere’s Disease for 35 years! and I have it in both ears. I occasionally have bad bouts of vertigo, but not too often. I take antivert when it happens and it does help take the edge off. I am sorry that you have this disease and it is a real pain sometimes. It got so bad one time that I couldn’t hear for almost a week and I was a scrub nurse in an OR at the time. My Otolaryngologist told me to try and keep a good attitude because stress could help trigger the symptoms. I am on a salt and caffeine restricted diet, too. I take lipoflavinoids and I think that it helps. I know this is going to be really hard to do, but think about something else and don’t dwell on the disease. I have lived with this disease for so long that I don’t even think about it anymore. I have osteoarthritis which is much worse and hurts a lot and restricts my activities.
Believe me, I know what youare going through. There are times at work that I have to run my hand along the wall to keep my balance, but I refuse to give in to this disease.
kayray on 24 Jun 2007 at 6:39 pm #
Annie, I just discovered that I had subscribed to the wrong address in my feed reader! But I’ve got the right one now and will be able to keep up with you
I just want to give you a million hugs and say thank you so much for everything you’ve done for LibriVox, and give you my best wishes for good health and happy times! oxoxox
sumita on 24 Jun 2007 at 10:39 pm #
Hi Annie
I feel your pain.I have had MD since 2002. Just like you i have tried several diffrent treatments the last one was meniett device which worked for good two years till i went to a dentist for a regular clean up.The dentist decided to clean the whole mouth and somehow damaged the tube.The meniett device would not work,I started having my spells.My Doctor changed the tube,but no luck.I started researching for herbal medication and found something for MD.The medication is called clear eye & sharp ear from balanceuticals.I have been taking this medication for 14 months and it did help me.April 2007 it all came back, I am taking the herbal medication and at the same time making use of the meniett device but suddenly i cannot not hear at all from my left ear,and pressure builing up in my right ear.I have an appointment on july 2nd with my doctor…..but do not know what to to do….I was thinking of endolymphatic sac surgery but have changed my mind.Annie thank you for your letter,am very happy to hear from another sufferer who can relate. Sumita June 24 2007 Orlando Fl
Teena on 26 Jun 2007 at 8:54 am #
What a long battle an dyou have made a lot of good self-growth through it. I have been doing some study lately and one article I read (Food Allergy: A Chronic Problem- by Bradley Bongiovanni, ND and J. Alexander Bralley, PhD of the Metamatrix Clinical Labs in Altanta) mentions that food allergies- or even that unique and rare combination of exposure to a food culprit simultaneous with an inhalant culprit may bring on Meniere’s disease symptoms (or even anaphylaxis.) With the simplicity and low cost of a blood test for food allergies, it may be worth it prior to another surgery. You can even get a test kit and do the test from your own home- email me to learn more. Best to you! Teena
Teena on 26 Jun 2007 at 8:56 am #
Oops- My email did not show up on number 10 above- for info on that test kit… teenaj@tx.rr.com
Alex on 28 Jun 2007 at 3:19 pm #
Annie,
Hang in there!! I’m at the exactly same stage right now, but with 15 years of misery under my belt and 60% drop in hearing, left side ( I was like you for 10 years, no hearing loss, my ENT could not believe it….but finally my ear gave up….).
Don’t stop believing!
Alex 34 years old, 2 kids under 2.
William Phipps on 10 Jul 2007 at 8:26 am #
Hello Annie:
That is a very informative and interesting article. I am 37 years old and I have had MD for 4 years. At this time I have been on different drugs which include diuretics and Serc. They worked for quite a long time, but now they don’t seem to have any effect. At this time I am considering the Gentamicin injections like you are having now.
One thing that realy scares me is the possibility of going “bilateral” i.e. getting MD in the other ear. Right now I only have it in my right ear. I did have a question for you though. I get loud tinitus in my right ear. Occasionally though I also get it in my left ear, but not as loud. Do you think I could be getting MD in my left ear as well? I told my doctor about tinitus in my left ear, and he said it was not necessarily indicitive of MD in that ear.
By the way, I am located in London, Ontario, Canada. Apparently the drug Serc is not approved in the US, but I believe it is the biggest drug prescribed for MD worldwide and it really helps some people to a great extent. There are no side effects with it either.
Best of luck.
Will
Sandra on 11 Jul 2007 at 2:44 pm #
Hi Annie,
It’s so good to have others out there to talk to. I have had MD for 8Yrs now. I do have it in both ears. My vertigo is good it happens less and less as time goes on. I have learned to keep myself calm. STRESS is so bad for you right now.My hearing is another story.my Right ear is pretty well gone, and now my left ear is going to. I get really scared sometimes about that. I wonder what life will be like. I hope that I will always be able to hear noise, (just not be able to make out what is being said0. Doc says that will most likely be what happens.
Shannon on 18 Jul 2007 at 7:42 am #
Hi Annie,
I’m 24 and have had MD for about 2 years now - I seem to be stuck in your “anger” stage as well. To top it off, I have Reynould’s Disease as well, so believe me, the depression is something I’m most sympathetic to! Just yesterday I had a Tumarkin, which I thought I had under control…how embarassing, and at the gym no less! I never thought at my age I’d be afraid to go out in public, or have to wear a stupid med bracelet, or have to struggle to explain what’s wrong with me. How ironic stress triggers this, but how can you NOT be stressed all the time? I’m glad to see you’re in the same boat I am…well, not happy for you, haha, but it’s nice to see I’m not the only one who is nonresponsive to treatments, but like you I do still have a great deal of hearing intact. They won’t perform surgery on me, however, because of my age and risks, although I’d gladly go if it meant some kind of relief.
joy van vlack weis on 19 Jul 2007 at 9:27 am #
I also suffered with MD from childhood. I am profoundly hearing impaired in the worse L ear. Geatamycin injections made me worse. I had a vestibular nerve resection almost 13 years ago. It was the best thing I have ever done. I went from almost daily attacks to maybe 1 every 2 years from my right ear. I do not balance in the dark, and I can’t stand up with my eyes closed, I’m very visual based for balance. I would tell anyone it was worth it. The surgery is intense, recovery was over 3 months. I am grateful every day I made that choice.
kathy on 19 Jul 2007 at 10:07 am #
Gee, I may be finding the answers FINALLY! I’ve had ringing in my ears for approx. 6 months….from out of nowhere! I’m 57, and coupled with extreame exhaustion, coupled with what I thought was a chonic sinustiuts, I went to a knowledgeable ear, nose and throut specialist. I have excellent hearing, other than acid reflux, throut is fine, and nothing conclusive regarding the ears ringing almost constantly. On rare occassion I will awake with no ringing…blessed silence, and for no apparant reason, it returns in a day or two, or later that same day. Mental confusion…feeling unable to focus is becoming more and more difficult, and foregetfulness is mounting! I’m otherwise in reasonably great shape physically. I never use salt, havn’t for decades…no salty snacks of foods…I do however smoke, and drink coffee. My right ear seems to be the source, tenderness with an ear swab, and sometimes feel like it has fluid in it. Today I bought Lipo falvonoid, where in the product literature mentions Meniere;s disease…this prompted the search here on the internet….VERY INTERESTING, Perhaps an answer, or at least a direction to explore….IT”S DRIVING ME UTTERLY CRAZY! Thanks for the info folks.
Carolyn on 19 Jul 2007 at 1:51 pm #
Hi Annie, Thank you so much for this site. My ears have rung for ten years, but it was not until A few months ago, that I had my first attack of vertigo.The docs did not know what was wrong, because my symptoms did not make sense.This is because I had a neurofibroma on my L4&L5. I was in bed for 2 months.In addition, they found a telangeistases in the Pons of my brain, which was an incidental finding. I am having such a pity party & felt so alone.Interestingly enough, I am going to school to be a counselor for people with chronic illness.I was diagnosed with MD, 2 weeks ago, after a major roaring in my left ear, and MAJOR vertigo.I have only had a few days where I feel o.k. I am visually affected as well. Patterns or movement bother me. Strangely, driving in the car does not…I had to quit my job as a hairdresser, and will try and continue school in the fall. Reading bothers me as well as writing, but come hell or high water, I will finish this degree. I have a constant low grade headache, and both my ears actually hurt from the pressure. I need to get over the “why me?”, and think “why not me?”If I had a job, I would donate to this cause. You can bet that I will, as soon as I can. Thanks to everyone who posts. I don’t feel as alone. Lucky for me, I have a sweet husband who will do anything for me.I can not imagine being alone with this ..
connie on 21 Jul 2007 at 7:25 pm #
My meniere’s symptoms are exactly the same as Carolyn’s. I could have been reading about myself. My MD was under control with the use of Xanax, which I have been taking for ten years. It worked almost immediately for me. MD returned a month ago. My neurologist started me on Lexacor last week. I’ll see how that goes. Antivert helps some. I wish there was a magic cure!
connie on 21 Jul 2007 at 7:27 pm #
sorry..the medication is lexapro.
Robin Ganley on 24 Jul 2007 at 1:09 pm #
Annie:
Thank you for allowing me to read your story. After 22 years of symptoms that Doctors thought were my imagination, I was diagnosed with MD in my left ear.
Incidentally, I am 100% deaf in my right ear and the canal was actually sewn shut approx. 20 years ago. Anyway, after appointments with all the local yay-hoos - I went to a Doc that was sent from Heaven. He was compassionate, empathetic and very knowledgeable. He says (the Doc), “I am a textbook case”.
I was nervous relieved and grateful all at the same time. I can’t imagine what your life must have been like for all those years. I see the psychological effects the whole ‘ear thing’ has had on me. I’d love a chance to hear from you. Good luck and take care of yourself..God Bless….Robin G
Robin Ganley on 24 Jul 2007 at 1:10 pm #
P.S. The fullness in the ear is what caused me the most distress!! Robin G
Jakob on 26 Jul 2007 at 3:09 pm #
This is exactly what I expected to find out after reading the title t Have To Read This. Thanks for informative article
Jen on 28 Jul 2007 at 9:24 am #
Hi Annie,
Just like you, I have had meniere’s disease for about five year.
I have gone through the stages of depression that you have gone through.
Don’t give up. If you want to pursue a degree in Education do it. I struggled through college and finally finished my degree in Education last year. Remember, DON’T GIVE UP and keep your faith in God.
Take care, Jenn
Bev Althouse on 28 Jul 2007 at 3:43 pm #
I too have MD - but not nearly as rough as you. I am in Canada and SERC is the drug that works for me. I have visited a neurologist that told me to use Gravol if I can stand it. Doesn’t make me sleepy as prolonged useage of antivert can actually amplify the symptoms. Don’t know about anyone else but air pressure changes (storms coming on and such) really affect me. I have found reduced salt, caffeine and eliminating as much junk food as possible have helped. I have had the problem for 6 plus years now and it can really hamper your life for sure but I made it through raising a teenager and working full time. Keep you chin up and I’m glad I found your site.
Bev
Saskatchewan, Canada
Nicole-Australia on 31 Jul 2007 at 10:54 pm #
Hi Annie,
I to have MD, I have had it for the past 2 1/2 yrs. Im 37 and have 3 children. I have tried fluid tablets, serc, valium and maxalon for the nausea. none of which seemed to do a great deal. I had the endo sac decompression 1 year ago and was vetigo free for only 6 months. My doctor said the next step is gentiamicn or a VNS. but said because of my age a VNS was a better option. as gentamicin can destroy all of my hearing that I have left in my right ear (only 20% left anyway) but he said that was enough to be able to have a hearing aid when I want onne. It is great to read what others think. I hope all goes well for you. Keep smiling
Nicole
Australia
Kristin on 13 Aug 2007 at 9:06 pm #
Annie, I think you’re getting some very well veiled spam comments (this comment and a few others I’ve recently seen).
Scott on 14 Aug 2007 at 3:23 pm #
I have no veritgo, little if any ringing in my ear but my ears do pop and crack at the smallest change in elevation. My biggest complaint is the lack of appetite and nausea and I have lost 15 pounds. I also have difficultly sleeping throught the night and my nausea is greatest when I wake up in the morning. I have gotten relief for 1 week and then it comes back. All blood work and tests seem to say that I am fine. My doctors seem to think it is depression but I wondering if it is MD…..anyone know any good doctors in NYC area that you can recommend that know how to diagonose MD? or any input?
Melody on 14 Aug 2007 at 5:11 pm #
Reading all these blogs, makes me wonder if I will ever be normal again. Does anyone out there have a normal day without wondering if they will be hit with nausea, dizzy or in my case spinning and upchucking. I can be fine and the next minute it hits me, Im afraid to make any plans any more, I’ve used most my sick days from work and I mad as hell over this, I also have a lot of heart problems but having MD is the worst thing that anyone can have, Im suppose to have heart surgery , to replace a valve but Im scared to death that my MD will kick in while Im recovering, I get very sick with my MD every time the bathroom is my best friend it you know what I mean…I think with all the medication out there and all the studies they do for all other illness they could find some kind of cure for us. Everyday I think today will be better, but really its not because I’ worried about tomorrow.
Helen on 15 Aug 2007 at 9:32 am #
Hi Annie,
Thanks for sharing your feelings - I don’t read it as a rant at all - it really helps me to understand what my daughter is going through. She has had Meniere’s for about 7 years now, it hit when she was about 12. While she gets episodes of vertigo and is really struggling with her hearing, the most debilitating symptom for her is the tinnitus, which is extremely loud and never stops. As a result she can’t sleep during the night or function during the day. It is heartbreaking not to be able to help her. We have seen every specialist, but to no avail. The only relief came from traditional Chinese medicine (acupuncture) but we have since moved and can’t find a good pracitioner and she now seems disinterested in that option. All this to say that I know that most people just don’t understand that Meniere’s can be isolating and demoralizing. Most doctors have told my daughter to just live with it. If only they could see how depressed and deflated she is, how she is afraid to go to bed at night, and how lonely she is. You are doing so well, good for you - and thank you for telling us your story.
Annie on 18 Aug 2007 at 2:24 am #
For those who are looking for more help or people to talk to, please read this post I wrote on the many resources and online communities that are available for you to investigate further. Best of luck to all of you who are living with Meniere’s Disease.
anniecoleman.com » Blog Archive » Boland Bridge Is Coming Down … on 18 Aug 2007 at 2:51 am #
[...] Annie: For those who are looking for more help or people to talk to, please read this post I wrote on the many… [...]
Alvin on 21 Aug 2007 at 11:40 pm #
Annie- A bilateral here, I share your pain and understand your need to rant. Personally I have not and will not do the surgeries and go through all the doctor suggested hope things. I have done much research and it seems to me controlling your stress levels when at all possible, whether xanaxing compltely out , or just shutting out the surce of the stress has been my best aid in this fight.
The disease disabled me, I was employed in a career that required 260 miles or so a day driving. With MD thats like a alcoholic behind the wheel everyday, it was not a matter of if was I going to have an accident and either kill myself or even worse someone else, it eas just when it would happen.
I hate to seem so down and hopeless snding, but the fact is there is no cure for MD.
The sooner I actually faced that thought , and started learning when i might have a good day and when I definately knew I was in for a rough time, I began to be able to work with my disease rather than continue to fight it.
To fight it is to invite it to react, allow it to happen, let it run its course, keep awaay from STESS and things do get better, so far at least they have for me.
MD since 1992, disabled in 2005.
My hardest thing was to accept the FACT it is INCURABLE. Facing and accepting that fact I believe has helped me more than anything I have read of or done to this date.
Keep your spirits up it is incurable, but not deadly. Live with it not against it. I am afraid I am not helping any here , for what do I know. We are all left to the mercy of this illness.
Wendy Blais on 22 Aug 2007 at 6:18 pm #
Annie,
I struggled with Meniere’s disease just as you describe for many years with many losses and changes. I had the vestibular nerve section at the House Ear Clinic in Los Angeles in 1998 and am fully recovered with a new life, marriage and career.
Can you go there?? They are the best in the world. If I knew many years ago what I know now, I would have had the surgery much, much earlier. Feel free to write if I can answer any questions or offer any support.
Wendy
Carolyn on 23 Aug 2007 at 2:18 pm #
I had my first bought with MD(severe vertigo) in December of 2006.I am 31 years old with a husband and 3 children. I am a substitute teacher and a bus driver. My ear clogged up one morning(I thought I had water in it)and the next day I had a vertigo attack.I didnt know what was happening,scared me to death!! It lasted 4 hours!! I have went to a regular doc who said it was viral.I went to an ENT and he said because my ear had clogged up in the past(with no vertigo) that he felt like it was MD. I have the “clogging” in BOTH ears,I exerience nausea a lot but I havent had another vertigo attack since December.I am on water pills and have to watch my sodium.My hearing thus far is ok but I am worried about what the future holds. I am depressed a lot and on the “bad days” I just lay around and cry. I just went through 2 months of feeling about 85% normal but now I am queezy again and feeling”Not quite right”..also “brain fog” has consumed me again.I think sometimes my husband gets tired of hearing me complain…he doesnt say it,But i am afraid he will just get tired of it.I am glad that I am NOT alone…hearing everyones stories makes me feel better..they are inspiring. I am DETERMINED to raise my children like i want to and go to work!!I’ll be praying for us all!! We cant give up!!
Rhonda on 29 Aug 2007 at 10:25 am #
I was diagnosed with MD 14 years ago. Unfortunately for me, I am already completely deaf in one ear since early childhood. The usual medications have helped, but I stll have gradual hearing loss after each attack (some more frequent than others). My doctor told me that I would most likely be deaf around the age of 40. (I turned 40 last month and am at the point that a hearing aide is no longer working). I understand it’s very difficult to go on disability and that is the last thing that I want as I love my job, but the required frequent traveling is causing a problem due to the vertigo and dizzyness, but what is a person to do? I still have 2 teenage children to see after also. How do you go on living? I am not suicidal, but I really need someone to communicate with that can relate to what I am going through.
DALE on 02 Sep 2007 at 1:19 pm #
I WAS DIAGNOSED WITH MD IN 1978, I HAD SEVERE VERTIGO USUALLY LASTING FROM 3 TO 6 DAYS. ONCE OR TWICE PER MONTH FOR SEVERAL MONTHS ,ALMOST CONTINEOUS VOMITING . AFTER ALL THE USUAL EAR TESTS & BRAIN SCANS I WAS TAKEN TO MAYO HOSPITAL BY AIR AMBULANCE . THIS WAS WHEN I FIRST NOTICED BAROMETRIC PRESSURE HAD A BIG INFLUENCE ON MY MD. FLYING AT 10′000 FT. NO VERTIGO. COMING IN TO LAND IT ALL CAME BACK.[WOULD LIKE TO KNOW IF ANYONE ELSE HAS PROBLEMS WITH BAROMETRIC PRESSURE] AFTER 8 DAYS IN ST MARYS HOSP. I CAME HOME USING A VITAMIN KNOWN AS LIPOFLAVINOID . THIS WORKED QUITE WELL FOR ME. I HAVE ONLY HAD ONE SEVERE ATTACK SINCE THEN. I STILL HAVE MILD VERTIGO FAIRLY OFTEN. HEARING IS ABOUT 30% IN MY LEFT EAR & THE RINGING HAS BEEN STEADY SINCE 1978. I HAVE HAD CANCER, SLEEP APENA, HEART PROBLEMS. FOR ME PERSONALY THE MD CAUSED ME THE MOST SICKNESS &FEAR. I AM NOW 68 YRS YOUNG & HAVE HAD MANY VERY NORMAL DAYS. I WISH THE SAME FOR ALL OF YOU WITH MD
Dusan Popovic on 06 Sep 2007 at 9:12 pm #
Hi Annie and all the rest of the sufferers! I have just turned 26 and have been battling with hearing loss for about 4 years. I have now gone totally deaf in my left ear and over the past few months my hearing in my right side has deteriorated so badly that I dont know how much longer I will be blessed with the wonderful ability to hear, that I have taken for granted all this time. Like one of you said, it’s the thought of what life will be like when I’m totally deaf that scares me. Moreso, the tinnitus and aural fullness that just wont go away is so hard to cope with. Well, I’m not here to give advice, I just thought I would put up some of my thoughts for all of you to read as listening to your symptoms made me somewhat relaxed and comforted! I am trying acupuncture next Tuesday, fingers crossed that may work - I will let you know.
Best of luck to everyone.
Dushan, South Australia
Paola on 08 Sep 2007 at 3:03 pm #
I’m 24 and I am quite sure I have MD, I just have to find a competent doctor here in Italy to write down the diagnosis. I lost my earing in my right ear when I was 10 y.o. and since last January I had mild vertigo. I confused them with low blood pressure & stress until on Easter day I woke up during a violent vertigo crisis, vomiting, with my head spinning and diarrhea. I spent a few days at the hospital and I was okay. They gave me cortisone and glicerol. Within one week the attack came back. They lasted about 6 hrs, forced me to bed and happened on alternate days. Now I have nausea and vertigo, I burp and cannot drive.
I am finishing my master and want to move to Canada, start to work and have a career . What am I gonna do? Travel oversea and being sick & alone does not sounds ok. I wonder if I’ll be ever able to get a life! After a few months of calm (with very mild attacks) the nigthmare is now back and increasing again. I am so afraid I will have to give up my dreams because of this. I have difficulties in bearing I’m half deaf (on my left hear I have lost 80%, but with a hearing aid I have only a 40% loss), I struggled to go to school normally and to attend university, I fought to learn English as languages are my great passion…but this f*** MD sucks!
Sorry for the bitterness, but I thought it was all gone and it was just some virus. I am scared. If anyone wants to share his/her experience my email is m4rn13-at-gmail-dot-com
Paola
Judith on 21 Sep 2007 at 5:44 pm #
Annie,
I was just diagnosed with this disease 9 months ago and have had 5 attacks of vertigo, the last being today. I usually sleep it off with antivert. The hearing issues are what scare me. I have a 60 % loss in the right ear and constant tinnitus in that ear. An aide does’t seem to help. I use a hearing aid in the left ear and it offers some improved hearing but not much.
After reading blogs for the past 3 hours on the web, I am now afraid of total deafness. I am 57 and have 10 years before retirement.
Any thoughts? Is this inevitable?
Also, does anyone have suggestions on how to get Serc in the US?
Thanks for being here for all of us. How is your MD after your June / 3rd treatment?
Judith
Lisa on 24 Sep 2007 at 6:45 pm #
Annie-
Joe Hardy on 03 Oct 2007 at 4:23 am #
Hi Anne
I have just been on the following web site:-
http://www.meniere’s-Disease.ca
Have you seen this and if so what is this ’system’ they are offering to control the Vertigo aspect of the disease?
I have nothing but admiration for you
Alan Wilder on 03 Oct 2007 at 9:54 am #
Hello, Annie,
Isn’t it wonderful to have a problem
with no cause and no cure? To short
cut this reply, age is 75, perhaps
had since I was 40. Diagnosed as
allergy to molds, since usually had
one fairly mild attack each Nov. Until
last year, good hearing both sides.
Pressure change landing at Logan in
Boston caused worst headpain ever,loss
of nearly all hearing, and two days
later first real attack. Woke up,
middle of night, crawled to bathroom
2-3 hrs of vomiting, cold sweats. Had
again, about once a month, while trying
to get thru the medical system to a
“real” Dr. My Dr. knew as much as any.
Said he could do little, started
Prednezone, and I ultimately got to
Mass eye and ear in Boston. Yup, they
think MD. Advised low salt, alcohol,
caffeine. No further attacks over the
fall and winter, but when I tried to
fly, it happened again, in spite of
all sorts of things, the earplanes,
medication to make sure tubes were
open, etc. Repeated bouts of vertigo.
Back to Boston, had genemycin in the
ear. Spent 3-4 days on back, and now
total of about 2 months since. No
vertigo or dizziness, and you know
the difference I bet! Most of balance i
is back, I can swivel head now, and
can drive. I think I am better for
having had the injection, but still
not 100%. Basic question: Any one
else have this triggered by flying?
I understand 3-5% of MD types do. I
wonder now if I can fly again. Have
been to 40 countries, and hate to
quit flying. Does the injection stop
the problem, and allow me to fly?
I suspect the answer is the same as
all MD answers….everyone is unique,
nobody knows. Hang Tough!
Al
Joe Hardy on 08 Oct 2007 at 10:54 am #
I think we got our wires crossed
On the attched site they are suggesting that a system using vitamins has helped to reduce the attacks of Virtigo.
Do you know anyone who has tried this system?
http://www.meniere’s-Disease.ca
The new response you pointed me too makes no reference to this system.
Alvin on 08 Oct 2007 at 12:19 pm #
Hello again Guys. To people New to MD or just visiting this site. Please be aware of what medications doctors give you during your Diagnosis process. I had my first Bout with MD in 1992, just light no big deal I thought. I got hit with a bad attack In 1996 extreme Vertigo,near vomiting,hot sweat and on and on that lasted about 20 Minutes or so. That began the process of the CT scans,ENT visits, well you guy’s know the routine. I was finally sent to a Neuroligal Doc, who really by looking at the items on his wall in the exam room, mainly just concerned himself with Migrain Headache/alzhiemer type patients it seemed. He listened to me about my symptoms, vertigo,cold sweats,naseau,ears ringing, and hearing loss at an excellerated rate, but really ran no tests on me and decided I had migrain headache troubles. So he prescribed Nortyptilene for me, which according to him aided in the process of preventing Migraine’s.
Well to make this shorter I was finally diagnosed with MD in December 2004. I made many visits to that doctor complaining that the symptoms were just getting worse, but he continued his course and just increased my dosage amount. By that time I had gotten to where I barely could sleep, I would go 2-3-4 days with no sleep , then either by aid of Ambien or sheer exhaustion would finally got to sleep and then sleep about 18-20 hours and then the process would repeat. I never thought to look at the side effects of any medications I took until these past 2 years, because I took so many pills I started looking. Well I of course quit taking the Nortyptiline in 2004 and just looked at the side effects today.
My,MY, look at these side effects and see if you think that Doctor was helping me.
Bipolar Medications Library
Catalogue of side effects for the tricyclic antidepressant Nortriptyline - sold under the brand names Pamelor, Aventyl and others - which is sometimes used in the treatment of bipolar disorder and other mood disorders and mental illnesses.
Common Side Effects:
Check with your doctor if any of the following side effects continue or are bothersome:
Dizziness; drowsiness; dryness of mouth; headache; increased appetite (may include craving for sweets); nausea; tiredness or weakness (mild); unpleasant taste; weight gain
Less Common Side Effects:
Check with your doctor if any of the following side effects continue or are bothersome:
Diarrhea; heartburn; increased sweating; trouble in sleeping (more common with protriptyline, especially when taken late in the day); vomiting
Always Notify Doctor:
Less Common: Blurred vision; confusion or delirium; constipation (especially in the elderly); decreased sexual ability (more common with amoxapine and clomipramine); difficulty in speaking or swallowing; eye pain; fainting; fast or irregular heartbeat (pounding, racing, skipping); hallucinations; loss of balance control; mask-like face; nervousness or restlessness; problems in urinating; shakiness or trembling; shuffling walk; slowed movements; stiffness of arms and legs
Rare: Anxiety; breast enlargement in both males and females; hair loss; inappropriate secretion of milk - in females; increased sensitivity to sunlight; irritability; muscle twitching; red or brownish spots on skin; ringing, buzzing, or other unexplained sounds in the ears; seizures (more common with clomipramine); skin rash and itching; sore throat and fever; swelling of face and tongue; swelling of testicles (more common with amoxapine); trouble with teeth or gums (more common with clomipramine); weakness; yellow eyes or skin
Withdrawal Side Effects - Notify Doctor:
Headache; irritability; nausea, vomiting, or diarrhea; restlessness; trouble in sleeping, with vivid dreams; unusual excitement
Overdose Effects - Notify Doctor:
Confusion; convulsions (seizures); disturbed concentration; drowsiness (severe); enlarged pupils; fast, slow, or irregular heartbeat; fever; hallucinations (seeing, hearing, or feeling things that are not there); restlessness and agitation; shortness of breath or troubled breathing; unusual tiredness or weakness (severe); vomiting
Other side effects not listed above may also occur in some patients.
So please research your medications, especially pre-diagnosis
Kay Zoucha on 14 Oct 2007 at 3:30 pm #
I developed Meniere’s disease approximately 12 years ago. Vertigo was only about every three to six months at first. Gradually developed in a monthly recurrence. I was lucky enough to live in Nebraska at that time. Best doctor in the world - Dr Britt Thedinger - is in Omaha. When it got unbearable and nothing helped, he immediately did vestibular nerve section. Operation was a great success. I have no hearing loss and no vertigo. This November will be nine years since the surgery. I can’t imagine why people try other “cures” before the nerve section. When you have a competent neurosurgeon and someone like Dr. Thedinger, you can’t help but go for it. I am very thankful that someone directed me to this doctor. Everyone should be so lucky.
Giselle on 01 Dec 2007 at 12:08 am #
Ive been living with MD for 10 years, can’t tolerate the severe vertigo and drop attacks that I’ve been experiencing for the past two months. I am having Vestibular Nerve Section in 3 weeks. Please I’d love to know how long would it take me to get back on my feet and perfom normal daily activities after the VNS surgery.Thanks
Wendy on 01 Dec 2007 at 4:41 pm #
Giselle,
I had the VNS ten years ago, it gave me my life back, and I wish I’d had it years earlier. I had general imbalance for about 6 - 8 months, as did other people I spoke with who had the same surgery. There’s no more vertigo, though! You can still function, but be prepared for very imcremental progress. Sometimes you’ll think that you’re not going to get any better, feel despair, then there will be a breakthrough. Improvements continued for me for the next 2 years. Good luck, and be patient with the recovery.
Giselle on 03 Dec 2007 at 1:18 am #
Wendy,
Thank you so much for your comments. It really means alot to me. I appreciate the time you took to reply. I’ll take your advise and be very patient. Thanks
Wendy, May I ask you? After the surgery,How soon were you able to walk on your own without any help?
Thanks again
Wendy on 03 Dec 2007 at 7:37 pm #
Giselle,
After the surgery I could walk short distances, around the house, by myself. I think everyone is different, depending on how used to being dizzy you already are, how physically fit you are, how you respond neurologically to the surgery, etc. My doctor wouldn’t let me take meclazine anymore and encouraged me to do PT exercises that helped–it’s important to challenge your balance as much as possible, as uncomfortable as it feels, which speeds your recovery. Some days you will feel despair, but I’m told that the surgery always works, given time. The best thing is knowing you are free from vertigo. I have been offering help to people who had the surgery for 9 years through the House Ear Clinic. Someone helped me at the time and it made all the difference. Feel free to email me questions at wendyb02@socal.rr.com.
Carrie on 04 Dec 2007 at 3:50 pm #
I am in shock as I read as much as I can of the above. I’ve never heard of any of this until today.
No one will take me serious. I can’t even realy sort my thoughts right now because I currently have so many of the above symptoms.
Annie - I live in St. Louis. Please tell me the doctors that you have seen. I am seeing my ENT on Monday and I have a great Primary but I can’t find a Neurologist.
My mind races, I feel like I am floating, my left side of my body does worse than the right sometimes. I shake and I jerk. my head hurts. I feel embaressd to be around people. I don’t know what to do.
Can you tell me a neurologist to see in st. louis?
Carolyn on 24 Dec 2007 at 2:00 am #
I left a message on here in August.I felt bad up until around mid October but have been feeling mostly good since then.No nausea and only mild dizziness.My doctor put me on a new medicine and I take it when i feel a little “off” and it helps.It seems like I will have a good 2 or 3 months and then it will hit me for a month or two.So far I have still only had the one major vertigo attack and that was last year December so I have went over a year now with no severe vertigo. My balance is a little off on most days but not so much that people notice.I just keep chuggin along!! Hang in there everyone!!
Wendy on 26 Dec 2007 at 11:00 pm #
Hi. I was diagnosed with MD several years ago, but with the attacks being few and far between have kept it under control. Two attacks less than three weeks apart got me back into the searching for answers- It’s been awhile since I’ve read up on this, but it doesn’t look like much has changed. Here’s a few things I’m wondering about: Is this possibly linked to the fluid retention that I deal with during my monthly cycle? I recently has Endometrial Ablation done because of heavy menstrual bleeding and my cycle has been all messed up since then and I’ve had two attacks. I’ve never heard anyone suggest this, but it always seems to be the case with me. I am feeling such a loss of control in my life with these attacks occuring again, so frequently. I hate not knowing when, and at a time when I’ve otherwise never felt better. The only things I’m doing are Meclazine and an otc deuretic. Any other hopeful preventatives out there you can suggest? Thanks for your help- I sympathize with anyone who deals with this terrible problem, and I know I’m to a lesser degree than many.
Wendy on 26 Dec 2007 at 11:04 pm #
Oh, yeah. I also forgot to ask if anyone’s heard Dr. Wallach’s theories on this. My brother-in-law is a firm believer in him, while I remain skeptical. The guy has actually taken it upon himself to rename MD “Wallach’s Vertigo”, which I find a bit arrogant, but when desperate for a cure it makes one wonder. Also, I read about Clear Eye & Sharp Ear herbal supplement, which claims to prevent attacks. Any input on these would also be helpful.
Karen on 22 Jan 2008 at 9:31 pm #
Oh Lord, I thought I was the only one in the world living with this hell! I will be 53 soon and was diagnosed with MD 2 years ago, I have the vertigo, tinitus, and drop attacks. Went through all the testing to find out I have MD in both ears. On the morning of Sept 23 I woke up with total hearing loss in my right ear, again more test and all they tell me is that is not typical of MD. I’ve lost my job, can’t drive, can’t think and just did stop using a walker to get around in my home (I use the walls) this just isn’t worth the strugle. What in God’s name is there to look forward to?
Annie on 23 Jan 2008 at 2:18 pm #
I have decided to close comments on this post because I am uncomfortable with some peoples’ view of my website as a Meniere’s “group.” I appreciate that so many people have responded to what I wrote but this is simply an account of one patient’s battle with MD and not an appropriate place to ask medical questions, give medical advice, or seek support from a group.
Please visit http://www.anniecoleman.com/2007/06/26/menieres-disease-information-and-health-update/ for a lengthy post I wrote about some of the many online resources available where you can find more information or support groups.
If you want a quick link to people to talk to please visit http://www.menieres.org — they have several forums and you can register and participate for free.