Ménière’s Disease – my story

In the above illustrations of the inner ear the one on the left is a normal ear.
The illustration on the right is having a Meniere’s attack.
Notice how much more fluid is built up in the Meniere’s ear. (the blue areas)

Meniere’s disease is an abnormality of the inner ear causing a host of symptoms, including vertigo, tinnitus (a ringing or roaring sound in the ears), fluctuating hearing loss, and the sensation of pressure (feeling of fullness) in the affected ear. The disorder usually affects only one ear. Named after French physician Prosper Ménière who first described the syndrome in 1861.  (you can read more about Meniere’s Diesese on the National Institute on Deafness and other Communitcation Disorders site. Meniere’s Disease.)

My Story with Meniere’s Disease:

I had Meniere’s Disease for years before I was officially diagnosed.  Each time I had a vertigo attack I thought I had food poisoning or caught he worst virus known to man. I had horrible ear infections when I was growing up, I was even hospitalized for them a couple of times, so when my ears felt fuller, or my hearing was off, it just wasn’t anything new.  I just racked it up to my wacky ears.  Plus, for much of this time I didn’t have health insurance, or had very little, and since the attacks would go away I didn’t go to the doctor.

The first vertigo attack I can remember happened in 1994.  I only had severe vertigo about once or twice a year for a number of years.

Then one day in 2001 I had the worst attack yet, and I had health insurance this time.  I had been having rotational vertigo for over 7 hours and throwing up the whole time.  My boyfriend (now my husband) decided to take me to the ER.  It was there that I first heard of Meniere’s.  The ER doctor told me I should see an ENT (Ear, Nose and Throat Doctor), because he thought I could either have those calcium deposits in my inner ear that cause vertigo, or I could have Meniere’s Disease.

So I went to an ENT, and he said I had Meniere’s.  I now know that I should have had more test than he conducted, and that he really didn’t know enough about this disease.  Unfortunately, it took me years to find that out.  in October of 2009 I had a vertigo attack that showed I was now having symptoms in both ears.  It was at this time he told me that I may need to see someone else, that he really didn’t know that much about this disease.  (yes I had been seeing this doctor for over 7 years and he finally told me he didn’t know much about this disease)  Luckily, during most of this time I would have long periods without an attack.  He put tubes in my ears and said that was why I wasn’t having attacks.  I’m pretty sure I was just not having attacks because I was in remission for those time periods.

After he told me he didn’t really know that much about Meniere’s I went on a search for someone who did.  I found a doctor, at Duke’s Otolaryngology, Head and Neck, ENT department and Vestibular Disorders Clinic.  He is a neuro-otologists specializing in diseases of the inner ear such as Meniere’s disease, benign paroxysmal positional vertigo (BPPV), vestibular neuronitis, vestibular labyrinthitis, migraine associated vertigo, among others disorders.

Before I could even see him they had to put me through a series of Balance Functioning tests to make sure I had Meniere’s and not something else.  These test included:

  • VideoNystagmography/ElectroNystagmography (VNG/ENG)
  • Rotational chair
  • Vestibular evoked myogenic potential (VEMP)

Learn more about those test here: Balance Functioning Tests (This site explains what they do during the test.)  It is also explained on the Duke’s Vestibular Disorders Clinic site.

I was given all the tests except for the one where they run warm and cold water in your ears, I had tubes in my ears so this test wouldn’t have worked.

The results ruled out other causes and it was determined that I have Meniere’s Disease.  Dr. K prescribed a low sodium diet, (I was already following this) a diuretic, and steroids to try to slow things down.  He also prescribed Valium and Phenergan to help when I had an attack.  Unfortunately, I continued to have 2-5 attacks a week.  I couldn’t do anything without help.  It was during this time that I had an attack so bad that I started hallucinating and I was rushed to the hospital in an ambulance.  The ER worked at getting me calm, and trying to stop the vomiting.  I was there for 6 hours.  At one point the doctor told me that he couldn’t understand how I could still be throwing up with all the medication they had given me.

When I went back to see Dr. K we decided to try Endolymphatic Sac Enhancement Surgery.  After much searching, I found that different doctors do different surgeries and call it the same thing (Endolymphatic Shunt Surgery, Endolymphatic Decompression Surgery…  some insert a “shunt” some do not.  my doctor did not).  Basically I had a Mastoidectomy.  (surgical removal of the mastoid process) with a bit of extra stuff.  Dr. K removes more bone so the sac can decompress (on its own) and will have more room to expand.  Leaving the endolymphatic sac and dura with no bone covering it.  However, most of this is under your ear, so it’s pretty protected.  This is to allow the sacs in the ear to have room to expand when they fill with fluid.  You have 2 different fluids (endolymp and perilymph) in your ear and if they mix then you end up having horrible vertigo.  The hole is left open in the skull.  The surgery takes about 2 hours.  They cut from the top of the ear all around the back to the bottom of the ear and fold the ear forward to be able to get to the area they need to.  This is a pretty invasive operation, you do get to come home the same day, but recovery can be long and painful  (I had this surgery on each ear.  The surgery on the first was painful but without any other symptoms really, the second was not painful but I had severe vertigo for a week.  I’ve been told that my recovery was unusual in both cases, normally this is not a hard surgery to recover from.)  However, it was worth it, I only had one real vertigo attack from April 28th – August 11th.  Unfortunately, I have bilateral Meniere’s and my left ear started causing me to have attack after attack.

Dr. K and another doctor at Duke, Dr. Linda Gray Leithe, noticed that some people who present having symptoms of Meniere’s were actually having an imbalance of cerebrospinal fluid pressure (CSF).  Dr. Gray is a neuro-radiologist,  They decided to see if I was one of those patients.   On November 3, 2010 Dr. Gray performed a lumbar puncture on me.  She found that I had low pressure.  On November 24th, she patched 4 leaks that they found.  (She found a total of 6, but she didn’t want to have my pressure go too high by patching more.)  Unfortunately, those patches didn’t hold and I had to have it done again in January 2011.  That time they used something different to patch my leaks and it should hold.  I felt better for 5 months.  NO vertigo!  The hearing in my left ear was staying up and stable, my right ear’s hearing didn’t come back (that was not unexpected), and I still had tinnitus in both ears, but life was good.

Unfortunately, in June of 2011, my symptoms started to return.  The hearing in my left ear dropped from 96% word recognition on a hearing test to 0% in 6 months time.  My right ear has only dropped a little, but I soon began to notice it was getting more distorted.   I went back in for another Lumbar Puncture and found my CSF was low again, I was patched up again…this happened 5 times between the beginning of July 2011 until November 2011.  The doctors tell me they have learned much from me.  I presented as having low CSF pressure, so they treated it with patches, but I kept “blowing them out”.  It appears I may actually have high pressure that have caused me to “blow out” leaks in my spinal column.  Every time they tested my pressure was after a blow out, and I would be low.  I was in such a miserable state by this time, I needed some relief.  I spent nearly 6 months of 2011 having vertigo nearly every day, I rarely left my bed, and very rarely without help.  So we decided to go another route.

On December 1st. 2011, I had the Endolymphatic Sac Enhancement Surgery on my left ear.  The initial recovery from this surgery was so drastically different from the first surgery if I hadn’t known it was the same surgery I would have sworn something else was going on.  After the first surgery I had a lot of pain, but no real vertigo, this time I had minimal pain, but severe constant vertigo for over a week.  The vertigo got better.  Over all my vertigo was reduced after the surgery, but it did not go away.  I would say it was reduced about 60%, and the intensity was reduced quite a bit.

After this I was treated for High CSF for quite some time.  Idiopathic Intracranial Hypertension.  It helped for a while.  The migraines got better, the vertigo got a bit better, but nothing went away unfortunately.

I was on medication for CSF for a while but it didn’t seem to help much.  Today I’m on a migraine medication that could help a little with high CSF but really I’m not treating it and things aren’t different than they were.  I’m not having symptoms of Idiopathic Intracranial Hypertension.  The pressure in my eyes are normal.  I don’t really know about the CSF, and I don’t think the doctors do either.

I lost my hearing and have to have cochlear implants to hear.  In July of 2012 I received my first cochlear implant in my left ear.  In September of 2013 I received my second.

Today I still have vertigo on a regular basis.  I go through spells where I have less, and spells where I have more.  I am disabled due to the Meniere’s.  I no longer drive.  I use a walker most of the time.  I am on disability.  I’ve lost a lot of my independence.  I live day to day, and I enjoy every moment to the best of my ability.

 

 

70 thoughts on “Ménière’s Disease – my story

  1. You are the first person I have met since my diagnosis with Meniere’s who also has Meniere’s. It is interesting to find how parts of our stories are similar. I just started seeing a neuro-otologist and we just did some steroid injections that did nothing. I have symptoms in my Right ear, but I started having symptoms in my left. However, my dr. is wanting to hold out on officially saying that I have it in my left ear yet. I’m excited to get to know you and hear about your experiences since we both have Meneire’s and chronic Migraines. Thanks for commenting on my blog so I could find my way to yours.

  2. Hi there,
    wonderful news…Can you tell me what your symptoms were? How was the experience of getting the LP and the blood patches??
    Thanks so much!!

    • Lisa,
      My symptoms were normal Meniere’s symptoms, but they were extreme. Vertigo 3-6 times a week…. The LP was not bad at all. I was a bit sore the next day, but that’s about it. (I have a wonderful doctor.) The blood patches and then later the tissel patches were not bad either. The hardest part of all was just having to be still. Unfortunately, my blood patches didn’t hold, so I had to have something else. After the blood patches I felt better immediately, after the tissel patches it took a couple of weeks to feel my best. After the myelogram, and patches you have to lay still, well not still, just with your head no more than a 30 degree angle (I think that’s right) for a couple of hours. I was pretty sore after the patches for a few days. But really nothing bad.
      If you click on the tab CSF you can read the posts all about this. There is one that has pictures when I was getting the Blood Patches.
      If you have any other questions, just let me know.
      I have been having some symptoms for the last month. Nothing like before, no real vertigo, just what a friend calls “slosh head”, and hearing dropped in one ear. However, I have been under a tremendous amount of stress.
      Dr. Kaylie, said he is confident I’ll continue to be better. If the vertigo starts to come back regularly we’ll do another myelogram to be sure I don’t have another leak.

      Do you have Meniere’s? Are you bilateral?
      Good luck.
      wendy

  3. I also wanted to know how long it took for the LP and patches and if it was painful? Did you have to lay still after the patches for long? Also, how soon did you feel results??
    Thanks again!!!!

  4. Wow. I seem to be having similar problems. Until now, I could minimize them with a low sodium diet. I live in Arizona so don’t know where to go from here.

    • Kilovars,
      Are your symptoms getting worse? Is the low sodium diet not helping any longer?
      There are many treatments to consider, my biggest suggestion is to make sure you have a good doctor.
      I say this because I had an ENT for nearly 8 years when he finally turned to me and said, “I really don’t know that much about Meniere’s.” I immediately dropped him! I searched the internet for doctors in my area who had a special interest or specialization in Menier’s. I found one at Duke, and one at UNC. Duke is closer to me, so I went there, and I’m so very happy I did!!

      If you click on the tab Meniere’s Treatments, on my blog, you will find a series of posts written by me and other Meniere’s patients and what each of us have tried. It seems something that works for one of us, may not work for another. You many have to try more than one thing.

      If you think you many have CSF issues, you can get in touch with my doctors, they may be able to suggest a doctor in your area who may be able to help.

      Just last week, a patient from California who read about my (and another woman’s) experience on a Meniere’s board came to see Dr. Kaylie and Dr. Gray. Found out he has high pressure, and Dr. Gray started him on medication, and will be helping him find a doctor in his area to keep his treatment going. Another girl from Utah, has been in touch with Dr. Gray, and she recommended a doctor in Utah for her to see. (she also ended up having high pressure).

      Good luck, and please keep me posted.
      wendy

        • I have not seen an MD in Utah, what made you think I had?
          The first doctor I saw for Meniere’s was in Raleigh, NC.
          I don’t think I ever mentioned on here that I ever lived in Utah, I was only there for a few months while in AmeriCORPS.
          I did have a couple of Meniere’s attacks while there..actually you’d probably call it one long one, I was sick for a few days, but had not been diagnosed then.
          It happened right after I got there and they thought I had altitude sickness. I know now that it was Meniere’s.
          So, to answer your question, I haven’t seen an MD in Utah. sorry I couldn’t help.

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    • Lydia,
      thank you for the healing thoughts.
      Good luck on your vestibular rehab.
      I’ll drop by your blog to see how you are doing.
      Please come by here any time. There is a great group of people here who support one another.
      wendy

  6. Dear Wendy,
    I just read Judy Westerfield’s blog and found out about you. I will hold you
    in my thoughts and prayers. I so sorry to hear what you have had to go
    through. I’m glad you found these doctors, who are specialist. Keep us posted.

    Ida Gatwood

    • Ida,
      I just saw that post. Judy is the best! It made me cry and am filled with such love…she is something else!
      Thank you for the healing thoughts!
      I will keep posting…I’m pretty hard to keep quiet sometimes. : )
      thank you again,
      wendy

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  8. Just starting to research this. The doc didn’t say that I have Meniere’s, but he sent me home with some meds that treat verigo and Meniere’s. I go back in a week to see if that helps. I have had vertigo off and on for 13 years but very infrequently. I went in because for 6 months now it has felt like there is something stuck in my ear…sort of muffled hearing. All he could diagnose was that I have high frequency hearing loss. So…we’ll see what comes of this week!

    • Jocelyn,
      I hope you don’t have Meniere’s. There are a lot of things that can cause vertigo without it being Meniere’s. I’m surprised that you’ve had vertigo for so long without hearing loss before now. Usually you have fluctuating hearing loss along with the vertigo attacks if it is Meniere’s.
      Good luck to you.
      please let me know what they come up with. Unfortunately, often they have no idea what causes vertigo, and other vestibular symptoms. I know a few people who have some of the symptoms of Meniere’s but not all, and they simply do not have a real diagnosis. They have a vestibular disorder…that’s all they can be told. It’s hard on people when they don’t have a clear diagnosis.
      again, good luck, and I hope they can find out what is wrong, and can help you feel better.
      wendy

      • The thing that bothers me most is the feeling that there is something stuck in my ear. I could deal with the infrequent (yet crazy) vertigo. It wouldn’t last more than about 30 minutes tops (I think?) and was really infrequent, though I do more often get dizzy but nothing like that carnival ride – G-force – can’t move feeling when I am really having it (which I had no idea was something I could have/should have seen the doc for! ha!) Anyway it occurred to me now because in doing some research online regarding that stuffed feeling in my ear they do talk about the vertigo and I went oh…yes!! Anyway…is this feeling like there is something stuck in my ear typical for Meniere’s? It is making me nuts! I have been putting up with it thinking it will drain or something, eventually…but then it hasn’t and has been 6 months already. I had no idea I had some hearing loss as well. At least he found *something* otherwise I’m afraid I’d be sent home with nothing to go on regarding this ear stuffed feeling. (like when you have a cold or really need to pop it from going up and down in elevation yet it will never pop or the “cold” won’t heal – know what I mean?) Thanks!

        • PS – I have a genetic lung disease so I do know what you mean about the frustration of not having a name for something! 🙂 I had to self diagnose (ask for a blood test to be done) for my BHD. Trying to heal with diet and herbs! Now I need to add ears to the mix! LOL

        • Hi Jocelyn, Yes that stuffed feeling is a symptom of Meniere’s. I often say mine feels like I have wet cotton in my ears. But it’s been going on so long now I don’t really notice it much any longer, unless someone ask me about it. Are you having symptoms in both ears or just one. Most people have unilateral Meniere’s. And those of us who do have bi-lateral usually start uni-lateral. It’s much rarer to be bilateral. Usually it happens within the first 5 years of having the first symptoms. I’m a freak, I went bilateral 15 years after my first vertigo attack. I tell you, after I got worse and the vertigo came so often I would have done anything to stop it! But I started having numerous attacks a week that lasted for hours and hours, and I threw up the whole time.

          When my symptoms first started I kept thinking I was just sick. I thought I got food poisoning…things like that. It took a trip to the ER after I had vertigo for over 9 hours, and threw up the whole time to have a doctor tell me I should see an ENT. He said the way my eyes were vibrating it usually means the vertigo is being caused by a vestibular problem. He even mentioned Meniere’s, and BPPV. But my point was, it’s not uncommon for you to think it’s nothing you should see the doctor for, it ends and you feel better, so why go?

          If you have any other questions please feel free. I don’t want my experience to scare you. I really am a rare case. I went bilateral very late, then the disease took off very fast. I’ve lost most of my hearing in the past 2 years. I lost all of my hearing in my left ear last July. We were hoping it would fluctuate back, and I can hear a little with a hearing aid, but it’s so distorted it hurts. That’s why I’m getting a cochlear implant next week. My doctor has been shocked at my progression. (and I’m lucky I see a specialist at Duke Medical Center.) I will say, my first ENT was a quack. After 7 years seeing him, I went bilateral, and he said….”To tell the truth I don’t really know much about Meniere’s” Can you believe that? After 7 years. Sometimes I wonder if I had been treated by someone who knew more earlier if this still would have progressed so much. But I can’t dwell on that. I just take one day at a time. This isn’t how I expected my life to be now, so I’m simply changing my expectations!

          good luck to you. keep in touch. wendy

          • Thanks for your story! No I am not scared. I have been through enough scary stuff not to get freaked out. I have the full feeling in one ear (my left). Wishing you all the best for your cochlear implant next week! I read your other post about finding about about Meniere’s and the doc not knowing much about it. Ugh!

  9. I have all the symptoms but I cannot face any myore surguries in my life for now, I find using sinus allergy meds help, I slow myself down, no direct talk on phone is now my next plan-speaker only; avoiding many noises, keeping calm, atmosphere of detente, positive feeding of the mind, being close to God, reading my Holy Bible when I can focus, because reading is impossible when the spells hit me. I drink hot liquids but not always caffeine filled lol, my grandparents had serious ear problems(one almost deaf), my daughter had tubes in her ears, her children had many ear infections, I am now wondering if hereditary genes are involved and what researchers have show on this??I do not use cell phones !
    I rarely allow a headset to be on my ears, because it is sore if I do it too long. It is on my left side, and this has been getting gradually-slowly worse with years, I am 57 now. it started maybe mostly 3 yrs ago or so!..my prayers are there for you. I have chronic illnesses-lung and post traumatic distress disorder:on meds for it too… I have to take . calcium and Vit-D for my bones which shrunk me 2 inches already, I had so many surgeries on me, tests, specialists and now this, I feel too faint to allow another doctor to cut into me..I finally read of what I may have just last night because doctors are so hard to find in Quebec, emergencies are overloaded, hospitals understaffed here in Québec Province so I am working hard to help myself with no real people in my life to help me, so many are too busy or make suggestions which I cannot afford it all .lol Now I lean on God for the next step and read up since yesterday for information as much as possible..I will soon go to a clinic because I have no choice; it is getting worse..I am alone and know I must act for myself..with what I have. sincerely

  10. Hi, I ran across this just this week.
    I was diagnosed with Menieres in 2004.
    It has been a long hard journey.
    I need someone who has Menieres to talk to. I have been to many many Drs. I just had another Steriod injection in my ear last week. It has been five years since I have had one. We found a new ENT local. I can’t tell that it is has helped at all yet. I am so discouraged ! He mentioned I might need a shunt if I don’t see any relief from this injection. The shunt was mentioned. I don’t know if I will do it. I really really don’t. I have been through so much each ending in a let down.
    I just want my life back.
    I am 43 !!
    Carina

  11. I had the endolymphatic sac decompression after the vertigo was increasing in frequency and I had two drop falls within 1 week. I am in so much pain (had surgery Tues). I am praying this works.

    • The first time I had the surgery I was in a lot of pain, the second time I had vertigo so bad for a week I could not lift my head off the pillow. yes that means I had was confined to bed for everything.
      I was told that I’m unusual, that it’s normally not that bad. I don’t know.
      I can tell you my severe vertigo attacks have gone from 2-3 a week to 2-3 a year.

      It was a miracle for me. I still have many mini attacks, but I also have Migraine Associated Vertigo, so I think most of those mini attacks are from the migraines. I just don’t know, but I do know I can handle them much easier than I could the violent attacks. the mini attacks don’t last long, and I’ve gotten so used to them I don’t panic, I take my meds, do deep breathing, and chant a calming word over and over. Or talk to my husband to keep my mind off of it.

      I’ll be thinking of you and sending hopeful and healing thoughts your way. Please let me know how it turns out for you.

  12. Have you ever tried the Meniett Device? I didn’t notice this in any of your information. I am scheduled for tubes in my ears and came across this treatment. I saw where getting tubes was one of your first attempts at relief. I too have symptoms with Migraines and also Periods and Weather changes. I have had Migraines since I was a child. Hormones are a common culprit in women with Meniere’s Disease. And I am currently peri-menopausal…oh the luck. I watch my salt intake and I am unable to eat out very often due to all the salt/msg that restaurants add to their foods. I have contacted my ENT to find out which would be the best treatment for me at this point before getting tubes put in. The Meniett Device makes sense to me but will have to wait for my Dr.’s response to find out if he recommends it or if I am a even a candidate. All I wish for is to have a little bit of my life back. I’m tired of missing out on family events and holidays or suffering through them.
    Good luck to you with being well again.

    • wanttoliveagain,
      Personally, I have not used the Meniett Device. I had a guest writer at one point write about her experience with it, https://picnicwithants.wordpress.com/2011/03/25/menieres-treatments-guest-post-deb/
      Since this time I think she has had some periods of time when it didn’t work quite so well, but she had good results for a long time.

      In retrospect, I (nor my otologist from Duke) think that the tubes did any good. I did have fewer attacks after getting them for a while, but it was early in my disease and we think it was just because I was not in the accute phase. When I would again have an accute phase I would go to my ENT at the time and he would say…oh it’s because your tubes fell out….but that could have happened months before. Who knows. The specialist I see now told me that studies have shown that tubes don’t help any more than placebo. I don’t know if it’s true. I just know when my Meniere’s accelerated the tubes did no good at all.

      I have also had migraines since I was a child….around 11 yrs of age. I started my menses at 10. I too am peri-menopausal, and have been shocked at how many women I’ve found who have not entered this stage in their life naturally. I do not know anyone I can talk with about this as those I would talk to had surgical procedures that made them go into menopause early. Just shocked me. I used to have more attacks during my period, and of course many more headaches, but I haven’t had a period since May. I still have those symptoms but can’t place them to that time of the month. i actually think I’m having more vertigo….less severe attacks, but very, very often.

      I do watch my salt intake, mainly because I’m so used to it I don’t like the taste of too much salt. I’m on a very..ummm…VERY…strong diuretic because of the Idiopathic Intracranial Hypertension (high Cerebral Spinal Fluid), so watching my salt isn’t as important. The endolymphatic sac surgery helped a lot! I have cut my severe vertigo attacks by about 80%. The less severe attacks I can handle as long as they go away some times, and they aren’t like the very severe ones….I shudder just thinking of it.

      I only eat out at places that cater to people with allergies and intolerances. Then I can ask for special things and I get it. it’s tough, but I have a lot of foods I have to avoid, so getting them to cut the salt and such is easy.

      I sometimes think about missing my old life. Wishing I could socialize more…but I found it didn’t do me any good to think about it so much…and then I ended up being able to do a bit more. But mostly, I am happy that my loved ones can do what I can’t. I feel joy in their joy. I have decided not to look at this with reminders of what I can’t do, I’ve decided to focus on what I can do. Or the choice of how I look at things. (that sound criptic, but I’m going to post about it soon…and I’d write a book here)

      i hope you get relief.
      and be as well as you can.
      wendy

  13. Hi there. I know that this site is old but I’m getting the Endolymphatic Shunt in 4 days and I’m more scared than I’m letting people know. I have Meniere’s, diagnosed over a year ago, and the vertigo is pretty much daily now. I live alone and so the attacks can be devastating because there isn’t anyone to help me. I’m praying I get fixed and life will go back to normal. Any suggestions on recovery? Thanks

    • Melinda,
      Sorry I’m a bit late in responding. I had Cochlear Implant surgery 2 weeks ago, and since then I haven’t felt much like being on the computer. Which brings me to an answer to your question really. Every surgery is different. I’ve had 2 Endolymphatic Sac Shunt surgeries, one on each ear, and this is my second CI…each surgery’s recovery was different. (BTW…I didn’t actually have a shunt put in, my doctor called it that but it’s simply because the fluid is being shunted elsewhere, what I had was more Endolymphatic Enhancement Surgery. It’s mostly a mastoidectomy, and it gives the endolymphatic sac room to expand when it has extra fluid without leaking or bursting. Having the fluids in our ears meet causes vertigo. I’m not sure what else causes it, but I know that does.) However…remember I’m not a doctor, this is just my experience, and what I’ve researched or heard from my doctor at Duke.

      My first Endolymphatic surgery was painful, it was on my right ear…..funny thing, I just had the CI in that ear and it has been painful too, I’m thinking my right ear is just more sensitive. When I had the Endolymphatic surgery on my right ear I had vertigo for a week, but if I laid flat in the bed without too much motion of my head I was fine. So it was caused by the swelling, not Meniere’s type vertigo. However, it was pretty debilitating. Both of those recoveries are odd compared to most people. Of course, I normally hear from the people who had experiences like mine, but I know each of the people who told me they had hard recoveries have been pretty much vertigo free since then, and would do it again.
      I would do it again. I am bilateral, as you can tell from what I was saying. My Meniere’s has progressed fast after going bilateral, and it is not the norm. Most people never lose all of their hearing, and certainly never as fast as I did. My doctor says I’m very rare.
      When I had the first surgery I had no vertigo for a few months, then I started having a lot of attacks again…but it was being caused from the other ear. So I had the surgery on that one. I do still have vertigo. But NOTHING like it was. I used to have very severe attacks multiple times a week, now I have those a couple of times a year, and still they don’t last as long as they used to. I do have small attacks, or mini attacks. But I handle those pretty well.
      Personally, I don’t think anyone with Meniere’s will have their life go back to normal. It can be very close, but even if you are having no attacks, you will always have that fear in the back of your mind that they will come back. And this is a progressive disease. Most don’t progress like I did. But it does progress some. I don’t mean to take hope away, because there is hope. and this surgery does help more people than it doesn’t. I haven’t heard from anyone whom it didn’t help. I just don’t want you to think it will all be cured after this, because there is no cure….darnit! But there are treatments to help make it better.

      If you’ve only been diagnosed for a year, I’m assuming you are not bilateral. Please know that most people with Meniere’s do not go bilateral.

      I hope you have someone to help you for a few days after the surgery, it will make things so much easier on you. You won’t have to stress as much and as we know, stress makes things worse. (I’d love to meet someone with no stress. haha)

      If you look around the internet for people who have had this you will normally find the people who had a hard time with the surgery, but let’s face it, if you had no problems what so ever and everything turned out great, would you take the time to write about it? Or would you be out enjoying your life?

      So…..most people have no problems and recovery is easy. But some have hard recoveries. I would suggest that you prepare for the worst, but expect or at least hope for, the best.
      Rest as much as you can. If you are having vertigo you will have to. I couldn’t get out of bed for a week after the second one. But the first one, I was up and around, it just hurt. And then you will go through the itching stage.
      I don’t know of anyone who had a hard time that lasted more than a week.

      I hope I’ve given you some insight. and hope I haven’t scared you. It’s really not that bad, even when it’s that bad….if that makes sense.

      Please let me know how your recovery goes, and then later if it helps.
      I’ll be thinking of you and sending speedy recovery thoughts.
      w

    • I am SO SORRY, I didn’t know there was snow on my blog! I didn’t know it was automatically on unless you turned it off. That is new this year, I thought I had to ask for it to be turned on before it would be.
      again, I’m sorry. I would never have turned it on.

  14. Hi there, I am in the UK and came across your website after searching for recovery time from surgery for the sac decompression. I have been diagnosed with menieres and lived with it for quite a few years now. I am forty five and started off just feeling a little off it and dizzy. I was given stemitil and the episodes were infrequent. About one year later I had a massive vertigo attack whereby I collapsed at work and freaked them out totally as I was projectile vomiting everywhere. Even the ambulance crew didn’t know what to do so gave me drugs straight into my vein to calm me down, Anyhow these attacks came and went every couple of months ending up with me at A&E. I was under a registrar who carried out multiple tests but never an MRI brain scan. I had enough of being under this doctor for over a year without any progress so I decided to take matters into my own hands,
    I researched who was the leading consultant in this field locally and found a consultant who specialised in balance disorders. He put me on directics straight away and saw me again two weeks later. This had an immediate impact, and seeing this he then put me on beta blockers and also told me to take SERC 16mg, three times a day. This again had an immediate impact of reducing my attacks to virtually nothing. He also sent me for an MRI scan and found everything was normal. I first saw this consultant in January 2013 and have been under him ever since. My quality of life has improved dramatically over 2013 and I wanted to share that. However, recently I have noticed the hearing in my left ear has decreased significantly, this has coincided with tinnitus in my left ear increasing dramatically. I had my hearing test last week and this confirmed that at low and high pitch I am pretty much deaf. Anything in the mid range I can hear. I am waiting to see if I am going to have sac decompression in my left ear as this was discussed last week. As an aside, something I have noticed is that I am very sensitive to fluorescent lighting at work, So much, that I have had glasses made up that have full sunglasses tint at the top to nothing at the bottom. Something like Tony Stark wears in the Iron Man films. Since I have worn these, the lights have no effect…weird!
    I wish you well on your journey with this condition and please keep up the blog.

    • Brad,
      It sounds like you have been through a lot, but it also sounds like you have gotten a lot of help. I’m glad to hear that. Treatment in the US is often different than in other countries, I’ve noticed, but things are about the same.
      I’m glad a low sodium diet and diuretics helped….plus SERC (they don’t use that much here, for some reason it has to be filled in a compounding pharmacy…some FDA stuff…it’s so strange.) Still people can get it and I have heard good things about it. I haven’t used it, haven’t really discussed it with my doctor in specifics, I think it’s mostly because I have asthma, and have had peptic ulcers, those are two things you have to watch if taking it. But I’m probably past that point now anyway, was probably past that point when I finally found my good doctor. : ) Like you I was seen by a doctor who had no clue for a while, even though he said he did.

      The glasses seem awesome! I’m thrilled you have found something that works. I haven’t worked in a while, but my jobs were a bit physical and hazardous. (I was a custom Frameshop Manager….I worked a lot with cutting glass and wood and such. Even though I went to working just retail….and merchandising, it was too hard to keep up. But I’m a RARE case. I always try to tell people this. I advanced very quickly after going from unilateral to bilaterl (and went bilateral much later than most do). Please don’t let my story scare you. I’m doing alright, and happy with life, it’s just not as I expected…but life changes every moment right?

      I didn’t have the Endolymphatic Sac surgery until I was having vertigo multiple times a week. But as I said, I wasn’t working. Luckily, I got married shortly after being diagnosed (thankfully my husband knew what he was getting into…kind of…and has been the most supportive person you could ever imagine.) and my husband was able to take over all the finances.

      I had the Endolymphatic surgery twice. The first time actually happened before I started this blog I believe. I need to try to move some journal posts from somewhere else to the beginning of this blog so people can read more about it. I can say that I have been told and read that this is a relatively easy procedure for most. (I’m again the rarer one. but more on that) You can look up a mastoidectomy and find out pretty much exactly what they are going to do, it’s a little bit more, but not much…at least on my end. They did not put a shunt in my ears! And from what I understand most doctors don’t now. They often still call it that because they say they are “shunting” the fluid from one place to another, but getting an actual shunt is not smart…again in my opinion from studies I’ve read…but I’m not a doctor, just my experience! : ) let’s just make that my disclaimer here…ok?

      If you have any questions about the procedure itself, of course, ask your doctor. But if you want to know more about mine, please feel free to read about it. The last one I had was Dec. 1st 2012.

      Most people have little pain, and may have a tiny bit of vertigo at the beginning, but that’s all. I had two surgeries that were night and day!! All I can tell you is that it doesn’t matter if you see the same surgeon, the same hospital…everything, you never know exactly how it will turn out.
      The first surgery I had a lot of pain. The outside ear par hurt. I think this is because I hurt my outer ear years ago, and when they had to well to be blunt..peal the ear forward to get underneath, it aggravated the old injury..but that’s just my reasoning, the doctor really couldn’t figure out why I had so much pain. But it all worked out! The second time I had a lot of vertigo! A week of not moving my head. (the first surgery NO vertigo!) My husband had to do everything for me during the first week of the second surgery. But it was positional vertigo…thank goodness…so as long as I was still, I could even use my computer a bit..I was OK, but I could not move my head up off the bed! For some reason I had a lot more swelling with that surgery and the fluid caused the vertigo…again..who knows why. My doctor says I’m so different than any other patient he has with this. I just don’t follow the rules.
      But then I’ve never been one to follow the rules!

      I hope things go well for you. And I’m here. You can email me if you want..it’s under the About tab at the top of the blog.

      I have started blogging more about other illnesses I have…some have overlapping symptoms to my Meniere’s so it can get complicated. But Meniere’s is still my main object of interest….of course.

      Thank you for coming by, and commenting.
      I look forward to hearing more of your story. Please keep me informed.

      Peace to you.
      wendy

  15. My gosh, Wendy, you certainly have gone through so much! Are you still having vertigo even after all of this? I can’t believe how all of your symptoms (and diagnoses) you have had match mine from my past!). The only surgery I ever agreed to was a Septoplasty years ago for a Deviated Septum. It was causing head pressure, opposite ear inflammation/tinnitus and contributing to my lack of oxygen etc. Wish you the best and God bless you! Keep up that fighting spirit!

    • Yep,
      Still having vertigo after all of it. But I have more conditions that cause vertigo than just Meniere’s…so it’s hard to pinpoint the cause each time.
      Just living in the moment. We never know where life may take us. This may be a rough road, but it’s my road, and that’s OK.
      thank you for the well wishes.
      I’m still working on what works for me.
      wendy

  16. Hi Wendy I read the above article which I noted is dated a few years ago now so I hope you are doing well in 2014.
    My second daughter had what was called a colestetoma in her right ear when she was a small girl. It resulted in the removal of her hearing bones which meant she could never have an implant. Amazingly she compensates very well and if you didn’t know she was deaf in one ear you’d never suspect. The irony of her life is she is now an audiometrist and doing very well.

    • Oh my,
      I do need to update that page! I will get right on that. I am doing much better. I have 2 cochlear implants, and my balance is much better. I am handling my attacks much better. I still have vertigo, some bad attacks, many smaller attacks. But I handle them so much better. I use mindfulness practice to help me handle things in ways I never thought possible. Just a few months ago, I was mostly bedridden, now I’m able to get around so much better.

      The story of your daughter is amazing. She is an inspiration! thank you for sharing it. and thank you for pointing out that I have been so neglectful in updating my Meniere’s Page!
      best to you.
      wendy

  17. Wendy,

    Thank you for this webpage! There doesn’t seem to be much support for Meneire’s Disease. I have a recent diagnosis. Right now it is Cochlear hydrops or endolymphatic hydrops. I have all the symptoms except vertigo. I have been told that can come later on. I have tinnitus only in my left hear but has traveled to my head often and it it is really loud, it goes over to my right ear. I hear all kinds of sounds. The last couple of months it has been low, which I am thankful for.

    Does Mindfullness work during a vertigo attack? I know I use it for tinnitus, but since I have never had a vertigo attack I don’t know what I could do during the course of one.

    • Teri,
      Whew, Having the diagnosis of Endolymphatic of Choclear hydrops before vertigo is something I don’t hear about … people don’t usually find me until the vertigo hits. I know it happens. I’ve read up on it, but I also know it’s rare to be diagnosed before hand, I will have to read more though. some with Meniere’s are diagnosed with it, others have no idea. Some like me have been told maybe. I think most have been told maybe you have have hydrops, maybe not, buy you have Meniere’s, we don’t know what causes it.

      I hope you never get the vertigo!!! Tinnitus can drive you crazy. For me, I have gotten to the point that I can mostly tune it out…actually if it wasn’t there sometimes I think I would feel strange. One day, not too long ago, I had this moment when I woke up (I’m deaf now) and everything was completely silent. I freaked out. My husband was there and I said, “I can’t hear anything!!” He looked at me strange, like….ummm, honey you are deaf? and he looked worried. I then said, NO, there is no noise in my head. I hear NOTHING! no buzzing no humming, NOTHING!….as much as I have complained about my tinnitus, it scared me to not have it right then. It came back in just a bit, I don’t know what happened. I wish it would happen again, I’d like to see what it would be like without it. Especially lately as it has been driving me a bit insane. as you can tell, mine varies a LOT. I use my mindfulness to just calm me down when the noise gets so bad that I simply can’t hear anything else. but for the most part, I haven’t even thought of using for my tinnitus. Thanks for that.

      The vertigo, I do use if for, and yes it helps a lot. I did have a very severe attack recently that I couldn’t control, but for the most part, mindfulness has changed my life with the vertigo. If you have been reading some of my post…and you must have if you know I’ve been practicing mindfulness…I’m new at it so I’m not an expert by any means! You may have seen this post, but if not…I did write a post about how mindfulness has made me feel better and it describes how I use it to help with the vertigo. https://picnicwithants.com/2014/08/27/feeling-better-part-3-mindfulness/ maybe that will help.

      If I can help with anything else…please let me know.
      I do want you to know, I am a rare case with this rare disease. Most people NEVER get to the point I am at…and if they do, they don’t just hover here. So please don’t look at me and think that you are going to end up like me. I’m in the way, way out there minority!!

      Peace to you!
      wendy

  18. I am also a strange case. I was told 8 years ago that I had bilateral Menieres. After seeking another doctor because none of the treatments were working (meds, steroid injections), I was told I had fistula in both ears which would be insanely rare, I went to Cleavland Clinic and they said no way was that possible, but they still had no answers. So to Chicago dizzy doctors I went, put on a trial of VenlAfaxine for migraine associated vertigo, no help with the attacks. Now the Neuro I saw in Chicago is back to a meneieres diagnosis. Now it has been recommended that I get low dose gentamicin injections, possibly in both ears to see relief.

    My spells used to be super spinning for hours and are now relatively fast, lasting about 30 seconds of a drop attack and then having 20 minutes or so of a residual feeling where if I move my head even an inch it feels like I’m flying.

    Also, I have told doctors that I have a dripping like sensation in both of my ears and when I switch sides in bed I can feel my ears filling up or decompressing. Has anyone ever felt that as well?

    I am scheduled to get gentamicin this week starting with one ear, again in a low dose.

    It’s good to know I’m not the only one but I wish we were all better!

    • Gosh….you do sound like a rare case. And yes…I have that dripping sensation! And I haven’t heard anyone else say it unless they have an infection or something. it actually woke me up last night. I have 2 cochlear implants and my hearing still fluctuates a lot! Can’t find anyone else who has this. My audiologist says she has someone else who’s hearing changes every time they have an attack, but it’s not as much as mine.
      my spells have changed. But they are changing again.
      I’m wondering right now if it is the season, because it has changed a lot in the past month…month and a half.
      I haven’t jumped around seeing people. I saw an ENT who was very irresponsible in my opinion. And I’ve seen a doctor at Duke who I really trust. He would never do gent injections in a bilateral person….in both ears…never. You could end up with no balance at all….you may feel worse than you do now. Are they going to send you to a vestibular rehab person? To help you learn to balance more with your eyes?

      I’m trying hard to accept things as they are and not wish they were better. Just accept it as it is. That doesn’t mean I’m giving up. I just want to be OK with my life. To be able to live it as it is without constantly wishing it was different. Trying to live in this moment. I know I can’t predict the future. Can’t live in the past. So this moment is what I have, and I don’t want to spend it wishing it was different. But it has been very hard lately. I am having a very hard time hearing, it is so warped. I need to see my audiologist, but we recently moved and she is 3 hours away. So I need to see one here I guess, but I’ll have to pay for that….it’s free where I got my CI’s…and they have all my information. *sigh* complicated. I keep thinking, the hearing will settle down. I had the major attack 2 weeks ago! I have a lot of mini attacks now….and I just have this constant feeling of being on a boat. But I did have a major attack a couple of weeks ago.
      I do handle most of my attacks very well. The mini attacks may be much worse if I didn’t practice mindfulness. I can usually stop the attacks before they get bad. It has taken a long time, but I have come to live with my disease pretty well.
      (I’m just having things recently that have put me in a scare….I can’t focus on one spot without it moving…that scares me, I don’t want to be scared…..but that is a topic for a future post.)

      Thank you for commenting.
      It does makes me feel better to know I’m not alone…but I wish I was. I don’t want anyone to go through what I do.

      Good luck to you!
      If you ever want to talk or vent or anything…please feel free to contact me. apicnicwithants@gmail
      I would REALLY like to know how your treatment goes!!!!
      If it helps I would be interested if this constant motion doesn’t stop.

      Thank you again for coming by and commenting.
      wendy

      • I have also worried about the gent in both ears. My neuro in Chicago has told me that with the super low dose administered once and then again a month later if needed has seemed to do really well with bilateral folks. The docs name is Dr. Cherchi.

        It’s just all so strange. I’m sitting here now and have this moving pressure roaming around my head, it’s not dizziness but it makes it hard to walk. I call them head rushes but I’ve not met anyone with them before to even see if it sounds similar.

        I am already pretty much off balance most of the time and my hearing fluctuates drastically whether or not I am having vertigo or not.

        Started Vestibular therapy about a month ago and was doing pretty well but have for 3 weeks or so I’ve been so off kilter I am missing lots of work and in bed most the day.

        Thank you so much for your response I’ve never been able to talk to someone with similar issues.

  19. EEF,

    I have a lot of similar issues. I’ve been told I am a tough case. I haven’t found anyone who is to this extreme either. Well there is one person I have talked to on one board, but she has nerve damage also to the point where she couldn’t even be considered for a CI, so I can’t be sure her problems all stem from Meniere’s.

    my hearing fluctuates a lot too. Funny thing to say since I’m deaf! I Have 2 Cochlear Implants. I can’t find anyone who has their hearing fluctuate like mine does after they get CI’s! It’s driving me crazy. And it makes me even more wonky headed feeling….yeah my fancy name for it.

    Lately, every day. It is a bit better in the morning…the hearing part. By the evening, the tinnitus and hearing is so off I want to just bury my head! My muscles are so tight in my neck from the tension of it I want to scream. I’m trying so hard to meditate and calm it down…I had been doing so well at dealing with this, but this noise is driving me crazy.

    I’m part of an email board that’s part of the Say What Club…you can google it. There is a man on the board who had his balance nerve destroyed and he is doing wonderfully! So it can be done and he is a testament to it! I think though….he is a good story, but maybe the bad stories just don’t get on line?? You may want to talk to him about his story though. His name is Alan, come join the board and talk to him…you can always leave right after….I can tell you no one on there is like us. But they have good hearts. the other person I feel who has a very hard time, is also on there but she doesn’t post much any more. she has no support in real life, it is very sad.

    I haven’t worked in a very long time. I admire you for still trying.

    I went for a few months recently with little symptoms. i was having mini episodes daily, but I was dealing with it very well with mindfulness techniques. Then things started getting worse again. I started having episodes many times a day…and had a very major attack a couple of weeks ago. I was then put on steroids because of a herniated disc, but made sure it was a lose dose over a longer period (short and fast will throw me into a non stop bad vertigo) it helped the vertigo. It is still not great. I feel like I’m going to have a bad attack any time. but it hasn’t come again. However, I can’t focus on anything and it be still. If I look at something it is moving….just a little. I have this constant motion feeling. I said this to you before didn’t I?? sorry.

    I will say, my mindfulness practice helps me so much in dealing with a vertigo attack. During the time when I wasn’t having this horrible hearing thing going on…I posted about how much better I was feeling. and I still am feeling better in a lot of ways. I was having daily migraines and such..it was very bad for me for a long time. But this post tells how I deal with vertigo with mindfulness practice… https://picnicwithants.com/2014/08/27/feeling-better-part-3-mindfulness/ you may be interested.

    I have to run now.
    I’m so glad you came by here.
    I’m open to talk any time.

  20. Wendy. I have been diagnosed with meniere’s. I had my first bout 8 years ago and then nothing until a few months ago. During those 8 years i drank alcohol and ate salt and it had no effect. Is that normal? I should add that during this time I DID have very loud tinnitus (and that i can control that tinnitus by cleanching my jaw or pushing down on my head).

    Anyway, a few months ago had a big attack. It was preceded by the feeling of fullness in my ear.

    Now I just have a general feeling of lightheadedness (made much worse if i drink caffeine or alcohol). I do not have the feeling of fullness in my ear though.
    My question is. Is it normal to feel lightheaded for several weeks/months following an attack? And is it normal for the feeling of fullness in my ear to have abate?
    Cheers

    Stephen

    • Well Stephen, i’m no doctor, remember that.
      I’ll say….yes and no.
      I don’t think there is a real “normal”.
      for some, yes it is normal, for others…no not at all.
      for me….When I had my first attack I had no idea what it was…I had a few attacks over the years before I was diagnosed and didn’t change my lifestyle, the attacks could be over a year apart.
      Then I went more acute, I call it and I was more susceptible. some people have no problems with salt and such ever. It does not effect their attacks. So…shrug. Some people say they can’t have much at all or they notice it. I don’t eat a lot, why take the chance, and I just don’t like a lot. So I don’t know. I know with my allergies and such when my ears get stuffy I get more likely to start spinning.

      For a long time my attacks were very far apart. then they got closer together. The tinnitus was usually a low rumble but would get worse sometimes. Never could do anything to really change it. but it does get worse right before and during my attacks…I think.

      wait…your questions….attacks…often preceded by more fullness in the ear. often I would notice my hearing would be a little off. you may not.
      Months afterward a feeling of lightheadedness? Not normally. But yes….can be made worse with caffeine or alcohol. Your vestibular system sounds like it is on alert.
      Are you on a diuretic? That might help. Yes it is normal for the fullness to abate if you haven’t been having attacks a lot. I have it all the time, some people don’t. I have it MUCH worse before an attack. When it gets worse, it is a sign…beware.
      For me, before I got as advanced as I am…I used to have a good hour or two window of warning signs. I would have the fullness get much worse, the tinnitus would get worse, and I would just start to feel off….I knew to get some place safe, fast. I would then get really HOT. Then I had very little time before I would start spinning.

      Now I don’t have that kind of warning. I get a whoosh feeling and I know it is coming…or it just comes BAM!

      But I’m very advanced and most people do not get to this stage.

      many people can keep this under control with diet and diuretics and such.

      I’m amazed you didn’t have anything for 8 years.
      Have you been rechecked recently?
      do you have any hearing loss? if not I would really question this diagnosis.

      Good luck to you….
      let me know how it goes.
      Cheers
      wendy

  21. Well I had surgery DEC 15th I ended up in hospital until the 17th because I couldn’t walk. I am now using a Walker. I went from mild hearing loss to total deafness in left ear. Is this normal will I get and of my hearing back. I have been through vestibular therapy before and will have to repeat it now. I get sick from the vertigo whenever I get out of bed and I’ve not tried leaving my home yet. Please can anyone tell me if my hearing or balance will get better

    • What has your doctor said? No this is not normal. I don’t know of anyone who has had to stay in the hospital after this surgery or lost their hearing. Losing your hearing after this surgery is a very small chance…like less than 2%. It may be just from too much fluid an such, it may come back. All of this may be your body reacting to the surgery and things will calm down. No we can’t tell you that things will get better, nor can we tell you they will get worse, or stay the same. I’m sorry.

      I can tell you, the second time I had the surgery I was completely incapacitated for a while with vertigo. My body reacted badly to that surgery. I retained a lot of fluid in my ears and it was not good. so things were bad for a while. Things got better.
      A lot better. But I would say, it took me a good month before I felt better.

      I hope things level out for you. I’ve been thinking about you.

      I’m very curious to know what your doctor is telling you.

      Healing thoughts to you my fellow Meneire’s warrior.

  22. When I told the Dr I couldn’t hear he immediately put me on steroids. It has been a week today and hearing has not gotten any better. Vertigo has gotten better but balance is still way off. I’m using a walker. My ear feels plugged like its full of water. I’m praying I get some of the hearing back in it. I have no idea what my next step will be. Any advice would be wonderful.

    • Oh jen….I’m not qualified to give you any real advice. Mainly right now I’d say, try to stay calm. It is still very soon after your surgery. There is still a lot of swelling and fluid in there. It took me a long time to get to feeling right after my surgeries.
      This is a huge thing that is happening to you. I think a lot of people take this surgery too lightly…by that I mean the stress it puts on your body. Think about it. They just pealed your ear off, drilled a hole in your skull, and left it open….it’s a lot for the body to handle! I mean….they took your ear off! And drilled a hole in your head! Really, they cut into our skulls, into the dura mater, I don’t think this is something that every body just says….oh this is just a walk in the park. If our bodies have been under a huge amoutn of stress before…and let’s face it we were….then the surgery is bound to be more stressful. Stress causes things to be much worse. Especially for people with Meniere’s. (I hate it, but it’s true.)

      So my advice right now….Try to relax and take care of yourself as much as you can. Let yourself heal from this and then think about what comes next. Don’t think that much about what if…right now. Just heal. Heal from the surgery, and all the emotions that are surging through you right now. Playing the “what if” stories about the future in your head is not doing you any good. Accept what is happening right this moment and deal with this moment. Give it a good month before you freak out….and then, don’t freak out, look at it calmly.
      When things heal, and you find out what you have to deal with, then let’s think about what is next.

      Has your doctor said anything to you about your hearing loss? Does he think it is permanent?
      That will be a big thing to find out. Did he discuss the risk of this surgery beforehand? Were you informed that you could lose your hearing? It is a very, very slight risk, but there is a risk. I was told that. I told my doctor I was willing to lose my hearing to stop the vertigo….or even just slow it down. That is how bad the vertigo was with me.

      I think it is a very good sign that your vertigo is better, that means it was probably being caused from the surgery…..swelling and fluid…like mine was after the second surgery. It went away and my vertigo got much better for quite a while. I cannot tell you my balance got better, I don’t remember. I wasn’t looking for that…..I accepted that I would have bad disequilibrium, as long as the vertigo was better that is what I was looking for. that is the only thing that was looking for from this surgery. that is the only thing I was told it would help.

      Right now, I’d be asking myself if I trust my doctor, and that would be a big concern for me. If you are questioning that at all, then your first thing would be to try to find someone you trust.

      My big thing is the vertigo. I just can’t deal with the vertigo. I deal with it better than I used to, but still, it is so hard.
      I do deal with the rest ok. I get frustrated and have bouts of depression and crisis with all of this, but mainly I had to come to terms that if things didn’t get better……I still wanted to have a life, and I still wanted to love my life, I wanted to make the most out of it….whatever that meant for me. I’m not less of a person because I can’t hear and have balance issues. I have challenges…I’m working on them.

      I may be going to Johns Hopkins vestibular clinic, as Duke says this is more than Meniere’s and I have much more vertigo than I should at this stage. My balance sucks too. I accept it as a part of who I am, but I strive to make it better. I’m not giving up, but I had to accept that it is a part of me. I had to stop fighting it so very hard. I live with it…my illness is a part of me. I am not my illness, but I can’t escape it. It isn’t going away. So I learn to live with it. It has made my life much easier when I got to that point. When it clicked that I didn’t have to fight so hard….and that doesn’t mean I gave up.

      I’m rambling and I’m not sure this is helping at all.

      I wish I could reach out there and make it better.
      I wish no one else had to go through this.

      If you’d like to email me privately please feel free to. apicnicwithants@gmail.com

  23. I read all the posts and it is depressing..I have menieres for 38 years was misdiagnosed for the 1st 25 years by a renowned Dr in NY..he said I had otospnogeosis. I have classic Menieres symptoms..my ear should be dead after all these years however I still get attacks maybe once a year to some degree..one very violent and some more minor..after the last one I had add symptoms and could not understand them..left yet another Dr and then found out that I had bppv from the severe attack from the meneire..that was easily fixed….looking for a new dr here on Long Island because most are so disappointing ! my pt is a genius and he has done a lot for me with my neck and head to relieve the vertigo..another avenue to try..hope everyone find a way to find relief ..mine has been a battle but I have managed to keep living an almost full life..I wish they could figure out a cause or real pattern but it is not a “popular” disease to put a lot of research on…good luck to all and use meditation and awareness to help …Claudia

    • Claudia, I do sometimes worry that my blog can be depressing to those who have Meniere’s. I have been diagnosed with “More than Meniere’s”. I know I have all the Meniere’s symptoms, I also have Migraine Associated Vertigo (or Vestibular Migraines), and recurring BPPV…this is Positional, and yes it is easily fixed when it happens, so not so horrible. But I have symptoms that are very atypical of Meniere’s, I need to update my tabs…my “Ants” page and my Meniere’s page, telling my story.

      It sounds like you have this in one ear. There are treatments they can use with you they couldn’t use with me because I have bilateral. Have they tried Gentimyacin injections? I know a lot of people who are unilateral who have had a lot of success with that. If it gets really bad, the Endolyphatic Sac Decompression Surgery is good. I had it, and it was successful for a while, but as I said, I am very atypical. I know a few people other people who’ve had it, and they had much higher success.

      But it sounds like you don’t have many severe attacks. Do your mini attacks cause you to throw up and incapacitate you for long? If so you are having more severe attacks, they just aren’t lasting as long. Mini attacks should only last a few minutes. Have you lost your hearing at all? You mention that you have that this so long, so long, I’m surprise your hearing isn’t extremely bad, or gone, in that ear. Normally with every bad attack you lose a bit of your hearing, because every time you have an attack the fluids in your ear that aren’t supposed to mix do and each time it harms the little hairs in the ear, every time some are harmed your hearing decreases, when enough get harmed you can’t hear any more.

      I shouldn’t continue to have attacks after losing my hearing. However, I shouldn’t have lost my hearing as fast as I did. My doctor at Duke has been very surprised at my progression. So I don’t want my blog to depress you.
      Also remember, I have other disease too.
      I am hoping to go to John Hopkins Vestibular Clinic within the next year, we have to save up the money for it first. They have done much more research in the vestibular area then Duke has.

      There is actually a doctor here where I live who is supposed to be a specialist with Meniere’s disease and he has been useless with me. He talks to me like I just got the disease, and I’m deaf. Every time I go there he asks for a hearing test. I have refused it after the first time, I am not going to waste my insurances money. It just shows I can’t hear anything. I have cochlear implants for goodness sake.

      No Meniere’s isn’t a popular disease. It is often miss diagnosed because of that they have no idea how many people really have it.. It is still on the rare disease registry.

      As you said, I also believe that meditation and mindful awareness really help.

      Best to you.
      I hope you can find better treatment than you have.
      wendy

  24. I’ve had Ménière’s disease in my right ear for twenty years. Years back I had severe vertigo at tacks on a regular basis. Then for about four years I stopped having them. Then all of a sudden they came back this was August of 2011. Started mess again and helped but have lost all hearing in my right ear. Dr said the ear had burnt itself out. Last Saturday I woke up completely deaf. Scared me to death. Lasted for about 48 hours then started regaining my hearing in the left ear. Went to the dr today, test show I have 50 hearing loss in my good ear. He told me that I was in the early stages of Ménière’s in my left ear. I hate to think I may go thru all those vertigo attacks again. He’s going to monitor my hearing and if it gets worse he told me he could do a cochlear implant to restore the hearing in my left ear, he said the right ear was to far gone. I guess it a wait patiently and listen kinda deal. Not being able to hear is no fun. It was only for two days I cannot image being deaf all the time.

    • Bob,
      I’m not a doctor, but that sounds very odd to me. With Meniere’s you don’t lose your hearing until you’ve been having attacks. It’s the attacks that kills your hearing. The fluids mixing…that aren’t supposed to mix, that is what causes the vertigo, and it is what kills off some of the hairs in your ears, gradually and that is what makes you lose your hearing. You waking up not being able to hear all of a sudden, does not sound like Meniere’s. Did your doctor do extensive vestibular testing?
      As you mention…in your other ear you had severe vertigo attacks on a regular basis. when they came back in August of 2011, was it from the same ear? I assumed so, because you said you lost the hearing in that ear? Why didn’t they give you a cochlear implant in that ear then? and why can’t they give you a CI in that ear now? I’d get a second opinion on that. I have CI’s in both ears. Yes you can have problems where you can’t get them, but I’d still get a second opinion.

      If you have not had vertigo in your left ear, you do not have symptoms of Meniere’s. Meniere’s is a set of symptoms. Vertigo, fullness in the ears, tinnitus, and some hearing loss after attacks (often they don’t put the hearing loss in the description)…..if you don’t have all of these, you don’t have Meniere’s. Meniere’s is not a disease they have a test that they can test you for, it is diagnosed by you having a set of symptoms together. It doesn’t sound like you have these for your left ear.
      I’m trying to give you hope, not scare you.
      As I said, I’m not a doctor. I’ve been to a few. 🙂 I’ve been through extensive vestibular testing at Duke. They will not diagnose anyone with Meniere’s without doing these test and an MRI first. Have you had any of these test. Especially an MRI? If your hearing went away suddenly and came back, that is scary. I’d want some testing done.
      again….it’s my opinion…just from my experience….I’m not a professional. But I care about people. Especially people going through this. It concerns me when I hear that a doctor still uses phrases like “burnt out” and 50% hearing loss. They don’t normally use those terms any longer. They don’t say Meniere’s burns out any more, because some people have vertigo forever…some people never lose their hearing….some people continue to have vertigo after they lose their hearing. So that is not a term that is used a lot any longer. Saying someone has lost a percentage of their hearing doesn’t mean much because how much hearing did you have to begin with, we don’t all start with the same. They say you have Moderate, Severe, or Profound hearing loss. On the tests they put the decibels you can hear in each range. That makes a big difference. and they may tell you that you have Profound hearing loss in the higher frequencies…things like that. That makes a difference. Often with Meniere’s we have an upside down curve in hearing loss. We can hear very high frequencies and low frequencies but the middle ranges not so much. Have you seen your hearing tests?
      If you have lost what he is saying…50% of your hearing, how are you communicating? with no hearing in one ear and only half of your hearing in the other? That sounds horrible.

      When you are ready to get tested for a CI…do not guess when you get the test. Do not try to do good. I’m not telling you to lie, just don’t guess, if you don’t know, don’t try. You don’t want to pass the test. You want to fail. just remember that when the time comes.

      I hope I’ve made some sense. and I hope I haven’t offended you.

      I will tell you, being deaf is not as scary as you would think. At first it is kind of freaky but after a while, not as much. However, I got cochlear implants pretty fast. But I take them off often….I like the silence sometimes. Hearing with a CI is different. and it’s different for different people. yes, they help me, but I hear some people that say they hear as well as they did before, I don’t, but I can hear!! If you get a CI, you will never be deaf….unless you take it off.

      Please let me know how things go for you. I’m very concerned.
      w

  25. I have intracranial hypertension and intermittent hearing loss. My neuro always tried to tell me there is no connection. However I knew this to be false because when they treated me with the Diamox for my IIH my hearing also improved. Since my original diagnosis I have read various literature on the connection between the two.

    Thank you for sharing your story because I have periodic spinal leaks from my nose, my ears, and even my eyes. I would not allow my doctor to patch them because I feel like they are my pressure relief valves.

    I have had symptoms of IIH since infancy although I wasn’t diagnosed until I was 38. Weight isn’t necessarily a factor for me even though I’m currently overweight. Some of my thinnest moments in life were my sickest as well.

    The last MRI I had showed venous sinus problems but I was seeing a neuro who knows absolutely nothing about intracranial hypertension. Until I have good insurance and a doctor that specializes and my disease I have to make do.

    Diamox was eventually found to promote kidney damage in my case so I have to take it only when symptoms reach a stage of severity. The proper dosage for my treatment is 1000 mg per day. However because of the damage it was causing I can only take about 250 to 500 mg once every few days.

    • Hi Julie,
      I’m a complicated case with IIH too. Oh yeah, I think intermittent hearing loss can be caused by it…if they haven’t found any other reason. As you probably read, when I had my first LP, I could suddenly hear the doctor behind me. She said she had seen that before.

      My spinal fluid leaks happen lower, so I don’t see them. Once, only once, I’m pretty sure I had it from my nose. That was wicked. But ever since I’ve had patches….as you may have also read they thought I had low pressure because they kept reading my pressure right after blowouts. It was a mess. I’m not sure how long I’ve had symptoms since I also have severe migraines, cluster headaches, and vertigo from Meniere’s….and I get all of that from IIH.

      I’m in a pickle right now because I can’t have an MRI, I have cochlear implants. I’m beginning to regret getting them. I know I would be deaf, but I don’t feel like I was given a fair representation about how easy it would be to diagnose things with them in. CT scans do not show everything….but that’s another story.
      I hope you can find a doctor in the right specialty who you can see soon.

      I was on a high dose of Diamox too. It caused side effects too. I’m on methazolamide now. It is prescribed for the same thing, but with fewer side effects. I’m using less. We haven’t been able to find the right dosage to keep the blowouts from happening. I can keep the regular highs down, but suddenly it will go up and I’ll have a blowout…and feel like crap for a while. But this dose of Methazolamide is helping my headaches, I’m feeling better. And I haven’t had to be on potassium, kidney function if doing well…I don’t feel like crap like I did on diamox. But right now we are paying the deductable on insurance and it is expensive!! even though it is a generic. When insurance covered it, not so bad, now…I don’t know.

      Thank you for sharing your story with me.
      I haven’t talked about IIH much because … well they go off and on about it with me. When I saw the neuro-opthomologist it was all normal, of course I’d been on Diamox for a while. So that was kind of a waste. I felt like I was diagnosed then they didn’t send me to a doctor that would really treat me. My headache specialist is doing it. (she is a neurologist) It’s like after you are diagnosed they don’t have a place for you. (and I was diagnosed at Duke…yet all it says in my records is High CSF….ummm, that means IIH…my doctor told me IIH. Why does it not say that in my records?

      Sorry I’m in a “not such a good mood about doctors” today.

      again, thank you for your story, I’m glad you found my information helpful in any way.
      Good luck!!
      you aren’t alone.

  26. I came across your thread in trying to learn about symptoms related to what I have going on. I have come to believe it may be MD. When I was 11 I had a mastoidectomy on my left. Over time with everything going on I got used to the feeling of walking around in the clouds. I regained some of my hearing but not all. Now at age 48 as well as over the past years I have noticed that I am grabbing the walls to walk, stopping on the stairs because the area around me is moving and I am seeing lights and “Spinners”, I have even out of nowhere just fallen and have had to set for long period to regain my composure. I have more frequent migraines, constant ringing in my ears, on some occasions so bad i can hardly sleep. The feeling of being in an airplane comes and goes, but it seems that when I have that feeling is when i notice i’m grabbing the walls or stop and just set down until it slows down. I went into the ENT and they performed all the crazy tests on me, goggles, lights, rotating chairs, everything. In reading the results they concluded all normal except the results from the warm air in my left ear, it came back that my caloric level is abnormal, it read 173 degrees/sec left- beating. I have no idea what this means and i’m a little scared as they continue to say that the hyper responsive results is suggestive of central nervous system involvement. Not knowing what is going on and awaiting a consult follow up with the ENT, I am more than nervous. As I said after reading your posts it seems you have a great deal of experience dealing with Meniere’s disease, based on what i have explained above as well as the findings from the tests, does this indicate what you have?

  27. Hi!!! In 1990 I started filling strange and went to different doctors for 20 years without a diagnose. Six years ago I related my vomiting episodes to my ear and search for a dr who could help me so. In VEDA (Vestibular Disorders Association) they gave me different names of drs in differentstates and countries I ask them for. Finally I choose one of their drs and saw him, He was with me for 2 hrs checking everything I have done and all the studies I had. He told me I was going to hate him with the diet and life changes, I did not, My life changed for good, instead of having vertigo for weeks and then the crises as a cycle, with 1 hour of relief, I have 1 crisis a year.
    Things that really helped me and that I recomend:
    1. Sleep. Go to sleep every day at 8 pm and sleep for 10 hr until 6 am. Do not go out. (Probably by now you don’t go out any way). Do it for 6 months and after if you are feelling better go out twice a month and recover.
    2. Low sodium diet. Check all packages for 120 mg or less per serving. Check the serving size and the portions, they play with it and try to confuse you. No cans, no process food, no hams, etc. If it comes in a bag with no nutritional value chart don”t eat it.
    3. Reduce to minimal stress in your life.
    4. Take the dr prescription regularly.
    5. Become migrane free. Vitamins B2 and magnesium end them. Check with your dr.
    6. Do not eat sea food. Fish, clams, etc they live in salt water and have tons of sodium even if they don’t taste salty.

    Also check for labels on sweet foods, the have sodium as conservative!!!! Such as cocoa powder, cake mixture that come in a box, butter or margarine, yogurth, some rice, sandwich bread. You would be impresed of all the sodium some products have.
    Check all sodium in packages even if they say low sodium, they have more than 120 mg and you cannot eat them.
    I hope you feel better!!!!! There is hope and a life for you but discipline is the key!!!

    Regina.

    • Regina, I’m very glad you have found relief.
      I’ve been doing these things for years.
      I’m not migraine free, but I see a specialist for that.
      I stay on a very low sodium diet and I pay attention to every thing.
      I’m just one of those people that do not respond to the conservative treatments.
      My old dr is at Duke…I moved so I see someone else now. I’ve also been seen at John Hopkins.
      I’m one of the very, very few who have not found relief from anything.

      I appreciate you sharing your story, and wanting to help.
      Thank you so much.

    • I came close but the person stopped the text quickly when I said I was going to throw up.
      When I first had them I the rotational chair almost made me toss. I didn’t have the test where they put the warm and cool in your ears, people often puke from that.
      When I had them again recently, I didn’t have the chair, but I had the warm and cool air in my ears. I almost lost it, but I didn’t.
      I’m so used to things now that I rarely throw up. It’s kind of weird.
      I’m sorry the test made you so sick.
      the people giving me mine were so sweet they tried to make sure I didn’t.

  28. Pingback: #HAWMC Day 7 – Starting Advocacy | Picnic with Ants

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