I recently had the chance to connect with Louise Banks and her son, Ben Folland.

Louise is a big advocate for the Meniere’s disease community in the UK, but today, Ben has the spotlight. He recently surveyed 800 Meniere’s patients to find out what treatments they had tried and if they were effective. His results were submitted to the Meniere’s Society as an entry in their recent Meniere’s Essay Competition.

This is exactly the kind of family support I love to see!

Today, I’m happy to be able to share Ben’s essay with all of you!


Ménière’s Disease: A look at the rate of success of available treatments and procedures

By Ben Folland

The paper will focus on the success rates of the main treatments available for Meniere’s disease patients in the UK. I have surveyed exactly 800 people with Meniere’s disease about the effectiveness of a selection of treatments. I am going to cover the survey results throughout this essay.

What is Meniere’s disease? 

Meniere’s disease is a rare vestibular balance disorder that affects the inner ear. The main symptoms are; vertigo, tinnitus (ringing/buzzing or other sounds in the ear(s)), hearing loss, imbalance and a feeling of pressure deep inside the ear. People with Meniere’s disease have most of these symptoms episodically and can experience many associated symptoms. Vertigo is arguably the most debilitating symptom of Meniere’s disease so that is the focus of the treatments covered in my paper.

Treatments:

There are many treatments for the symptoms of Meniere’s disease but sadly, there is no cure for the condition itself. The treatments I am going to cover are; Lifestyle changes, Betahistine, Cyclizine Grommets, Steroid Injections, Gentamicin Injections, Sac Decompression & Nerve Section.

Diet and Lifestyle Changes:

A low sodium diet is said to reduce excess fluid in the inner ear which some experts believe will help the symptoms of Meniere’s disease, including vertigo. Some people believe caffeine increases tinnitus, as can smoking cigarettes, so giving up these things can potentially help tinnitus. Gentle exercise – such as walking – is often recommended to those with balance disorders.

Survey Results:

752 people report to have made diet and lifestyle changes. Of that, 504 report a positive improvement; 225 of which report a ‘good’ or ‘great improvement’. 208 report no change, 18 people said the changes made their symptoms worse and the remaining 22 noting they’re ‘unsure’ about the effectiveness of the changes.

diet-and-lifestyle-chart

That’s 67.01% reporting a positive improvement with diet and lifestyle changes and 33.9% reporting a ‘good’ or ‘great improvement’.

Medication Cyclizine (Similar to Meclazine)

Antihistamine, Cyclizine (C18H22N2), is used to treat sickness, travel sickness, and problems affecting the inner ear and balance.

Survey Results:

145 people say they have tried Cyclizine. Of that, 77 people report a positive improvement; 31 of which report a ‘good’ or ‘great improvement’ in their symptoms. 56 report no change, 5 people said the treatment made their symptoms worse with the remaining 7 noting they were ‘unsure’ about the effectiveness of the treatment.

cyclizine-chart

That’s 53.09% reporting a positive improvement with Cyclizine & 21.37% reporting a ‘good’ or ‘great improvement’.

Medication: Betahistine (Serc)

Betahistine (C8H14Cl2N2) is used to increase the blood flow around the inner ear. This is thought to reduce the fluid in the inner ear which some believe cause the symptoms of vertigo.

Survey Results:

408 people say they have tried Betahistine. Of that, 265 report a positive improvement; 169 of which report a ‘good/great improvement’ or ‘cured symptoms’. 109 report no change, 17 people said the treatment made their symptoms worse with the remaining 17 noting they’re ‘unsure’ about the effectiveness of the treatment.

betahistine-chart

That’s 74.93% reporting a positive improvement with Betahistine & 41.41% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Surgery: Grommets

Ventilation tubes or grommets are inserted into the tympanic membrane (eardrum) to reduce changes in pressure which is sometimes thought to trigger some symptoms of Meniere’s disease. It also forms access to the middle ear for treatments such as steroid injections.

Survey Results:

133 people say they have had grommet(s). Of that, 84 report a positive improvement; 47 of which report a ‘good/great improvement’ or ‘cured symptoms’. 36 report no change after having grommet(s) fitted, 9 people said the grommet(s) made their symptoms worse with the remaining 4 noting they’re ‘unsure’ about the effectiveness of the grommet(s).

grommet-chart

That’s 63.13% reporting a positive improvement with grommets & 35.32% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Steroid Injections

Intratympanic Steroids are used as a powerful anti-inflammatory medication when injected in the middle ear, in small, regular doses, as part of a course. When used for Meniere’s disease, the steroid injection is hoped to reduce the frequency and severity of vertigo attacks.

Survey Results:

211 people say they have tried steroid injections. Of that, 123 report a positive improvement; 65 of which report a ‘good/great improvement’ or ‘cured symptoms’. 59 report no change in their symptoms, 24 people said the steroids made their symptoms worse with the remaining 5 noting they’re ‘unsure’ about the effectiveness of the injections.

steroid-chart

That’s 58.27% reporting a positive improvement with steroid injections & 30.79% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Gentamicin Injections

Gentamicin (C21H43N5O7) is a medication that purposefully damages the inner ear (semi-circular canal). Semi-circular canals are circular, fluid filled tubes. This fluid moves around depending on the motion of the head. When the fluid is moved it sends a signal to the brain saying the head has moved in the X or Y or Z axis. This is how the brain perceives motion. Gentamicin damages the semi-circular canals that help percept motion so the patient is less likely to feel the perceived spinning sensation of vertigo.

Survey Results:

107 people say they have tried gentamicin. Of that, 66 report a positive improvement; 48 of which report a ‘good/great improvement’ or ‘cured symptoms’. 21 report no change after having gentamicin, 17 people said the treatment made their symptoms worse with the remaining 3 noting they’re ‘unsure’ about the effectiveness of the injections.

gentamicin-chart

That’s 61.66% reporting a positive improvement with Gentamicin & 44.84% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Surgery: Endolymphatic Sac Decompression

Endolymphatic Sac Decompression is used to help stop or control vertigo attacks. It is sometimes used to help stop progressive hearing loss. An incision behind the ear is made to expose the mastoid bone. The mastoid is opened and the facial nerve is identified. The bone over the endolymphatic sac is then exposed and once identified; the sac is opened. A valve is usually inserted into the sac to allow for future drainage, when fluid reforms; this is believed to help reduce symptoms.

Survey Results:

93 people say they have tried sac decompression. Of that, 68 report a positive improvement; 45 of which report a ‘good/great improvement’ or ‘cured symptoms’. 11 report no change in their symptoms after having sac decompression surgery, 11 people said the surgery made their symptoms worse with the remaining 3 noting they’re ‘unsure’ about the effectiveness of the surgery.

sac-decompression-chart

That’s 73.1% reporting a positive improvement with sac decompression & 48.37% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Surgery: Nerve Section

Nerve section is for severe cases of Meniere’s disease if other treatments have been unsuccessful. It can only be performed on one ear. Nerve section can be dangerous as it involves cutting out the vestibulo-cochlear nerve that is surrounded by arteries within the brain. Once the nerve is cut it stops the flow of balance information from that ear to the brain. The brain can then compensate for the loss by using only the opposite ear to maintain balance.

Survey Results:

35 people have tried nerve section. Of that, 29 report a positive improvement; 23 of which report a ‘good/great improvement’ or ‘cured symptoms’. 2 report no change after having the surgery, 2 people said the surgery made their symptoms worse with the remaining 2 noting they’re ‘unsure’ about the effectiveness of the surgery.

nerve-section-chart

That’s 82.84% reporting a positive improvement with nerve section & 65.7% reporting a ‘good/great improvement’ or ‘cured symptoms’.

Percentage of patients who answered ‘Good/Great Improvement’ or ‘Cured Symptoms’ by treatment:

treatment-success-table

Conclusions and Interesting Findings:

The treatment data shows the more drastic treatments/procedures seem to have more positive results in terms of improving or curing symptoms. Naturally, the more extreme the treatment, the more risks involved.

Betahistine, ranked ‘good improvement’, ‘great improvement’ or ‘cured symptoms’ by 41% of the 408 people said to have tried it. This shows it to be the most effective medication, outperforming steroid injections and cyclizine.

I was surprised that out of 752 people, 37 have not made any diet and lifestyle changes. I would be interested to learn why people may not have made any changes. Perhaps it’s because it hasn’t been suggested to them, or maybe they didn’t think it would help.

According to the NHS, Ménière’s disease most commonly affects people aged 20-60 years. My data suggests an average age of 36 years old, (out of 755 people), for when symptoms first develop.

age-data-graph

Finally, I find it very worrying that out of 715 people, the average wait for a confirmed diagnosis was 4.14 years. Five people surveyed waited more than 40 years before they received a diagnosis with the longest wait being a shocking 59 years.

(Click here to download a PDF copy of the essay)

  1. Thanks for all of your research and sharing it. I’m curious about two topics. Did your “no diet change” people just not change because they were “late bloomers” or because they tried a different diet and that it didn’t work so they went back to normal. My other question would be about the progression of treatment. How many who did the low salt went on to do the Endolymphatic shunt who went on to Gentamicin. I’ve run that gamut. I’m currently doing a series of steroid injections. I’m at my wits end and tired of being seasick. I’m ready for a lambrynthectomy but many don’t want to discuss it because of it’s destructive nature. I still have serviceable hearing in my MD ear, but I’m losing 3-5 days a month to my “couch days”. Any thoughts?

    • Good question Michael. I believe the case was that the no lifestyle change people hadn’t tried it at all. But I’d have to follow up with Ben Folland to find out for sure. In my personal opinion though, the lifestyle changes encompass far more than just diet. The lifestyle changes are really just a way to not only improve overall health, but to preemptively avoid common triggers. What’s more important is identifying what triggers affect you personally as everyone is different. And the best way to do that is to keep track of the right things in a journal. If you haven’t already, check out this free tool I created to help people identify their triggers.

      As far as the progression, avoiding triggers will only take certain people so far. Trying new approaches and new procedures is important, but I would hold off on the irreversible surgeries until you’ve exhausted all other options. I totally understand the desire to correct that, but a lambrynthectomy seems extreme at this point. Have you tried any medication based approaches?

      • I started with steroid injections and then moved to a diuretic. Both had little effect. I’ve had the Valium for the basic dizziness and nausea, but because of my work I couldn’t continue to take it. The Gentamicin treatment was last year. (I’d consider that medication.) I also ran the gamut of meds when they thought it might be migraine related (Gabbapentin(?) and others. I know the destructive procedures aren’t necessarily the best answer. I am, like many others I’m sure, feeling at the end of my rope. I’m doing my best to make those lifestyle changes (diet, meditation, less stress). I know that it helps mitigate triggers. It’s been that long uphill battle you spoke of. But we keep fighting the good fight. NEVER GIVE UP is one of the tattoos I have. Words to live by. Thanks for hosting this forum, by the way. I don’t have any personal friends that have been affected and it’s nice to be able to vent and share your story with someone.

  2. Michael,
    Can you please share why you went from Endolymphatic shunt surgery to Gentaminic injections ? What time frame did you and your ENT doctor allow in between procedures before moving onto the next step ?

    • I had shunt surgery in December 2012. It was effective for only about two years. The vertigo returned and we decided to move on to Gentamicin injections after a few more instances of vertigo. My Gent injection was in October 2015. It seemed effective for only six months or so. The seasickness and unsteadiness returned late summer. In November I had another rotational vertigo episode. I was able to fall asleep so my ENT only counted it as a 30 minute incident. In December I experienced a loud, shrill screeching in my ear for almost three hours. It was so loud that I couldn’t hear anything else and was very disoriented. It felt like one of my original attacks, but without the “drop” part. The steroid shots haven’t gained me much ground, but it’s early in the process.

      • Michael
        During the two years the Endolymphatic shunt was effective,were you completely symptom free ? Or did you have symptoms during that the frame ? If you did have symptoms can you tell me what your symptoms were ?
        A little about me.. August at the ER I was told I was experiencing a mild vertigo due to a sinus infection not draining. Given antibiotics and told it would my symptoms would go away. On August 28 I experienced my first violent episoded of vertigo, transported to hospital. Additional testing done, again I was told the fluid had not drained and given a 21 day antibiotics. I was symptom free and felt I was recovering until September 21, on my way to work I experienced another violent episoded of vertigo. Referred to ENT, more testing done. By early October I was diagnosed with MD, and surgery was scheduled on October 24, 2016. On October 24, my life changed forever. I expected surgery to resolve my issues with vertigo completely and not over time or gradually as now the doctor explains.
        Can you tell me about your recovery time after surgery ? What you experienced?

        • I was originally diagnosed about March of 2012. Before the extensive testing, I thought I was experiencing low blood sugar. Small bouts of dizziness and “empty-headedness”. After glucose tolerance tests disproved that I went through several MRI’s with a Neurologist. No abnormalities. I had had a bad case of rotational vertigo during the winter of 2011. I had no idea what was happening so I wrote it off as a possible virus. After the final MD diagnosis, I tried the low sodium and diuretic treatment to no avail. I then had a series of steroid injections. They helped a little, but the dizziness persisted. The shunt surgery followed. There were a lot of bad days following the surgery. Eventually the symptoms let up and I was just having occasional pressure and dizziness. No vertigo. So the recovery was at least a few months. I was relatively normal for about two years and then had another round of rotational vertigo. My doctor recommended the low dose Gent treatment. It seemed to work for about a year, but it is also just a band-aid for most people. The hair follicles can return because they grow in cycles and you can’t get to them all with one dose. My ENT is pretty cautious, I think, when it comes to treatment. The risk of hearing damage with the Gent can be high if the doses are high, but high doses normally do the destruction you’re looking for. (Disclaimer: I am not a doctor and only know what I do from these sorts of forums and reading the medical journal reports.) When I had another rotational vertigo episode this winter, I went back and we are starting at square one to see if any of the low risk treatments will work. Also, while I didn’t have any rotational vertigo over the summer, I started experiencing the aural pressure/pain and the “seasick”, dizziness and lack of focus this fall. So it’s been building. My hearing was only slightly damaged by the Gent, so if this round of steroids doesn’t work, I think another round of Gent is on the menu. Honestly, the pressure and seasickness is the worst of it for me. It seems that rotational vertigo is the gold standard, but the everyday vertigo, nausea and unsteady feelings affect me the most. I’m ready for the labrynthectomy. I know it’s destructive to your hearing, but I believe it will let me move past the constant pressure/pain and fear of another bad attack.
          Sorry to ramble. Once I start going on this subject, I tend to hold the floor.
          Hope you begin to feel better. Have they recommended vestibular therapy? That was actually a big help after the Gent treatment

          • Michael,
            Thank you for sharing your journey of MD with me.
            Based on your response recovery after Endolymphatic shunt surgery may take s few months. I’m on month 3, and looking forward to the symptoms subsiding. Are steroid injections the same as Gentamicin injections ?

            By the way, did you or do you drive ? Did you continue working ?
            Yes, vestibular rehabilitation was prescribed. I’ve started but have not attended for the last two weeks. One due to not feeling well – cold, upper respiratory infection. Two due to not driving, not able to get a ride, expenses of Urber are adding up. I have the handouts from when I did attend the VR. For now I do these exercises daily, until I am able to go back. My plan is to return next week.

        • My steroid injections are only to try and get the inner ear inflammation under control. Gentamicin is an antibiotic that is toxic to the hairs in the inner ear. When those are destroyed the brain stops listening to the bad signal it’s been getting. The big problem is that it is also toxic to the hearing section as well. That’s why my ENT is very cautious about using it.
          I didn’t drive for the first three-four weeks after the Gent shots. I got a ride to my first vestibular therapy sessions. About a week into the exercises I felt well enough to try and drive myself. But to be honest, that was probably too early. I do know that consistancy with your exercises is the key. Good luck in your journey. It’s been good to have someone to talk to about this stuff. There’s not a lot of personal experiences out there. Just a lot of technical papers on the disease.

          • Michael
            Thank you for explaining the difference between steroid injections and the antibiotics injections. When in rehabilitation how often did you attend per week ?
            What exercises in rehabilitation did you find difficult ? Or would bring on symptoms ? How long did you attend rehabilitation ?

  3. Glenn,
    Thank you so much for this inspirational site that provides informative information, passed experiences and a feeling of not being alone in this.

  4. Thank you for the interesting study.

    I have tried most of those treatments without much success for my bilateral meneires, vertigo and hearing loss. A couple years ago I was referred to Cedars-Sinai in Los Angeles where they began treating me with a drug called Simponi, which is usually used to tread autoimmune issues. It worked very will for me and apparently others who were given the injection. The use of Simponi for treatment of menieres is somewhat experimental, but the Cedars doctor are presenting their findings to get it officially sanctioned for such use.

    • That’s really interesting. There is some research to suggest an autoimmune related cause in some cases of Meniere’s disease. How well did Simponi control your symptoms?

      • The Simponi has worked quite well for me. My hearing in both ears has markedly improved. I still have low level vertigo but not the major knock-down attacks I used to get. In addition to the autoimmune issues, the doctors say Simponi works for Meneires patients who respond well to steroid treatment, without the nasty side-effects

        • Lon,
          Who do you see at Cedars-Sinai in Los Angeles ? Do you see a ENT or Neurologist ? I recently was referred to a Rheumatogist out of Cedars – Sinai, in the process of being tested for autoimmune diseases with blood work and a bone scan. He also referred me to a Neurologist based out of Cedars Sinai for the migraine headaches. Did you have any side effects using Simponi ? If so can you share.

  5. Dear Glenn, It is wonderful article on Meniere’s Disease and sharing of experience is always useful to every patient. I am also a patient of this. I tried many medications as well as Gentamycin. Ultimately, the greater relief was given by Vestibular exercises. It helps the patient to control the symptoms of vertigo in natural way. The dependency on medication has been reduced substantially. Many things are still unsaid in medical science though we claim that medical science is advanced.

  6. Lon,
    Who do you see at Cedars-Sinai in Los Angeles ? Do you see a ENT or Neurologist ? I recently was referred to a Rheumatogist out of Cedars – Sinai, in the process of being tested for autoimmune diseases with blood work and a bone scan. He also referred me to a Neurologist based out of Cedars Sinai for the migraine headaches. Did you have any side effects using Simponi ? If so can you share.

  7. I have Ototoxicity, and it is unkown what I came in contact to, but there is nothing they can do for it…..I was 19 when I started feeling the Vertigo and Panic Attack feeling, and started going from Dr. to Dr., to make a long story short, I went to an ENT, and he did all the testing, and did the caloric testing, and that was the results…….he said I wouldn’t be able to do the things I used to do, and gave me Meclzine which did nothing to help me. So I went to another Dr. I had been to before, and he had just returned from a Dizzy/Balance convention in New York, and he knew exactly what I was going through, and ordered a few more tests, including an MRI. He came to the conclusion that it was Ototoxicity, and that I would basically had to live with it, but put me on a couple of meds. that have reduced the anxiety, and calm the vertigo somewhat. He said they could do surgery, but suggested that it would be a 50-50 chance of making it worse, or losing my hearing on the left side. So from 19/ to 29 Dr,s; brushed me off saying it was just my nerves, and ready to send me to a loony bin……..and then Thankfully I found out what it was, I actually started crying…..not knowing or putting a NAME to it, is so much better than hearing, there is nothing wrong, just live with it. So I am now 58 and still on the same meds, but a few more different issues with the eyes. There is just so much more to this than anyone knows. If you have never experienced it, your lucky……..I wouldn’t wish this upon anyone. And I heard that Gentamicin is toxic, so why would they use it?
    Gentamicin Ototoxicity – Dizziness and Balance
    http://www.dizziness-and-balance.com/disorders/bilat/gentamicin%20toxicity.htm

  8. The Z pack that doctors prescribe is a aminoglycoside antibiotic.
    Aminoglycoside antibiotics All members of the aminoglycoside antibiotic family are well known for their potential to cause permanent ototoxicity if they enter the inner ear. Some of these drugs are more likely to cause hearing loss; others are more likely to cause vestibular loss. Others can cause either problem.

  9. Hello, this is my first post on your website. However, I am interested to see what you/people think of treating Meniere’s with antivirals such as Valtrex? Do you have any feedback from those patients who have tried this approach?

    • Hi Deborah. I know there was only a word count restriction on Ben’s report and that he wished he could have added more treatment options into the mix. I haven’t tried that approach myself, but I’ve seen people anecdotally report success with valocyclovir over the years.

      • After a very significant attack, and after some testing, I was originally diagnosed with MD sometime between 1992 and 1993. Constant Tinnitus didn’t really set in until 2004, along with some hearing loss, but not significant enough to warrant hearing aids until 2010. I have had subsequent significant and progressive hearing loss from 2015 to date. I was quite blessed with virtually no significant vertigo symptoms for the almost 25 years since my initial diagnosis. My thinking was I was one of the lucky ones who would only have one episode. However, in the spring of 2016 repeated days/weeks/months of vertigo, and all that is MD, hit me and hasn’t subsided since. Coincidentally, I stopped taking the 500mg Valtrex daily maintenance dosage (which was prescribed for me in 1999 for Herpes Simplex II) the same month that my MD vertigo began again. I didn’t realize there was any possible connection to my discontinuing my Valtrex and the onset of my MD nightmare. Recently, while doing whatever research I can on this condition, I noticed the Valtrex treatment results. I contacted my internist, who was willing to up the dosage and follow the plan described by Dr Gacek. I started this approximately 5 days ago. For other treatment options, last Oct I went to a specialist at Johns Hopkins, who did multiple testing and prescribed a migraine symptom diet. After 5 months, I have seen no change to my MD symptoms. I also have been in vestibular rehab for several months, yet my symptoms continue. So I’m hooking onto this Valtrex idea, however, I don’t know where to look on line for anyone else who has tried Valtrex treatments for MD, nor if there is any place to question my thinking that the coincidence of stopping the Valtrex and my MD symptoms are indeed not a coincidence at all. Do you have any suggestions for where/how I might further my search?

        • Deborah. I found this site several weeks ago, after beginning another round of Gent injections to try and get my symptoms to subside. I can’t speak for the accuracy of any posts, but there is a lot of information here.
          http://www.menieres.org
          I believe in getting as much data as possible. Hopefully you’ll find something that will be useful.

    • Veronica, this is something I’m not well versed in, but one theory of Meniere’s disease, at least in some cases, is that it’s caused by the herpes simplex virus. I don’t know enough to explain it more than this, but have you heard of the John of Ohio Meniere’s disease treatment? It doesn’t work for everyone, but I know many people who have benefitted tremendously from it, and it assumes a viral based cause. Here is some information on the treatment: http://www.zoominternet.net/~kcshop/JOH.PDF

  10. Why is no one mentioning anti virals?
    I’ve had huge relief from these and know of many many others who have too.
    I am part of a treatment plan in Australia and those on it all go on anti virals with great success! Try them people . Valtrex the best.

    • Good point! I know there was a lot more Ben wanted to include in the survey, but he was limited by the rules of the essay contest.

    • I totally agree with you about antivirals(Valtrex). there is a lot of support among another forum on the web where the success rate is also significant. I have been on Valacyclovir (3g daily) for three months. Improvement but not quite 100%. Staying at this dose for at least three more months..

      • I’m not sure there is an actual name for it. I would suggest you google Antiviral Approach to Meniere’s and see what you get. I’ll be happy to try to answer any other questions.

          • Hope it works for you. Please be aware that it may take “awhile” for everything to kick-in. As I mentioned I have been on these approaches for a little over three months and I’m still not 100% improved. Remarkably better, but I still have “off” days (in fact two this week). Are you going to take Valtrex or it’s generic? From what I’ve read/heard from others, it seems some manufacturers have better reputations than others when it comes to generics. Just sayin.

      • Hi Emma, I have two posts for you that I think are going to be extremely helpful. First up is my guide for the newly diagnosed, it’s everything I wish I knew early on: https://www.mindovermenieres.com/newly-diagnosed/

        Second is my list of dozens of Meniere’s disease treatments. There are far more than most people realize, and if one thing doesn’t work for you, there is still so many other things to try: https://www.mindovermenieres.com/menieres-disease-treatments/

        • I have gotten very substantial relief from my symptoms (especially vertigo) from using a combination of a low sodium diet, Betahistine and Valacyclovir. I take 24 mg. of Betahistine daily (8 mg. three times per day) and 1000 mg. of Valacyclovir daily (500 mg. two times per day). I have followed this routine for well over a year and I’ve had very good results, without a single vertigo attack in this period. I have never experienced any side effects from either Betahistine or Valacyclovir. Betahistine is expensive and generally not covered by health insurance since it’s not FDA approved and you have to buy it at a compounding pharmacy. However, I found it to be well worth the cost. You may want to discuss this approach with your ENT and give it a try. The combination of a low sodium diet and these two medications helped me get my life back. I hope this is helpful.

  11. I find this extremely helpful. I was diagnosed within 3 months of getting the vertigo however, I had to see several doctors before someone would actually take me serious and start tests/treatment and actually had to fire OHSU since all they were willing to do was google some at home exercises for Benign paroxysmal positional vertigo because this is what they “assumed” I had, even though I had the vertigo 24/7 for a week already and my ENT later told me my symptoms were not aligned with that of Benign paroxysmal positional vertigo. My friend works for an ENT dr who she said was awesome and could not have been more right. He sent me for vestibular testing, where I was diagnosed with bilateral Meniere’s disease. When I was diagnosed with bilateral Meniere’s, I was told I had cochlear hydrops since a child, based on my long term symptoms that no one has ever pursued since my ears appeared fine from the regular scope. My ENT suspected that an inner ear infection caused this to progress to Meniere’s in June, because the tests also found I had a weak inner ear function. They then started me on a diet/lifestyle change, along with diuretics and er meds (valium and Zofran). I am sort of always dizzy and then I have really bad attacks anywhere from 5-25 times per month. I was then started on oral steroids which only helped temporarily, and now I am getting steroid injections which I have yet to see if that is working, since I have to get 3 in each year over a 6 week period. I was researching what would need to be done if this does not help and found that most other procedures are not recommended for bilateral Meniere’s, due to them relying on the other ear for balance control, except the nerve section. I am wondering if this is something that would even be offered to me since it seems way radical and serious, due to the neurosurgeon part of it. seems scary however, since being diagnosed, my life is completely overwhelmed and wrapped around the severity of my spinning when I wake up. This is not a life I want to live forever. It feels quite defeating and is difficult to work a full time job. I am just lucky my job lets me work from home and miss days when its real bad, because I have fmla.

    • Thank you all. I feel so alone with this MD. I just finished my 6th episode in 2 weeks. My ENT and GP want me to have surgery…husband says no because I may be worse.I really need HELP for I am losing hope. I was diagnosed after a fall when I was 13. Had little trouble through the years but now at 70’s it came on full force. I’ve.had inner ear steroid injections….therapy for balance…eat very little salt…bppv exercises and take valium(2mg)twice a day and antivert 5mg. They help very little. How bad can this get? The ambulance took me to the hospital….my husband couldn’t pick me up.My ribs and back hurt for days from vomiting. Feel sorry for all of you!! Dee

      • Have you tried Betahistine? This has been the standard treatment for Meniere’s in many European countries (especially the U.K.) for decades. It has helped me a great deal. It’s expensive as it’s not approved by the FDA and you have to obtain it at a compound pharmacy (my prescription is $90 per month). However, it is well worth it to me as it has made a huge difference in managing my Meniere’s. I have never experienced any side effects from Betahistine. You may want to discuss this with your ENT and see if this is a viable option for your situation.

  12. Thank you for this great essay! Living with Meniere’s is so hard to live with because of the lack of information out there and the lack of platforms for us to find each other on. I wish I had the means to create a website specifically for all of us who have this condition to talk to each other and learn from one another. Thank you all for sharing your own stories. Here is mine…

    I was eating a salad and watching a football game four years ago almost to the day when my first attack happened. Everything started “spinning” and I had an overwhelming feeling of nausea. My wife helped me to a chair with a head rest and I sat there for about two hours. When I was able to at least get up, we went straight to urgent care. The vertigo itself had passed by that point but left me feel absolutely drained. I was lucky, that doctor thought right away that it was either labyrinthitis or Meneire’s and started me on a steriod pill for a week. After that did no good, I went back the following week for my checkup and, thankfully, taken off those pills (they never made me feel anything but bad). They ran some tests and concluded that it was Meneire’s.

    After that my wife and I tried to figure out what in the world just happened… Thinking back, I could remember what started it all. A week prior to my first attack I was sick. I remember blowing my nose and feeling a weird almost pressure pop in my ear(like elevation change) and it made my ear ring(tinnitus). It was exactly one week after that that I had the attack. The next 3 or 4 vertigo spells were happening only if my tinnitus would last that full week before, like a predecessor of what was to come. I felt kind of fortunate for that, knowing that there was a high chance of an attack, because I could at least warn my family.

    It took about a month before I saw my first ENT. He recommended a diuretic and a low sodium diet. I didn’t think too much of it because I thought I was pretty healthy and didn’t eat that much sodium. After eating something that was high in sodium and noticing that it directly affected how I was feeling, I went into an anxiety filled panic attack about salt. When that passed I started to change my lifestyle and eating habit. Within a few months my hearing, which was down 40%, had come back to 100% and my tinnitus was under control. On top of that, I had lost about 60lbs and looked like a different person(because I WAS eating too much salt). I was taken off of the diuretic at that time and was only to be seen for checkups or if symptoms changed.

    Now they are back and in full force! Last October my tinnitus started again, which I have been able to control and handle for a long time, and will not subside. It seemed to start around me having a sinus issue and stress. This time, however, I have only had two vertigo attacks with the tinnitus never subsiding. The first one was in February, which was the longest lasting attack so far at a full 7 days, and the last one just happened last week but was on and off for two days. It seems that every time I have an attack, it is somehow different than the time before. I have also started seeing a new ENT who has prescribed me something to help tell the sensor in the ear to let everything work right. Since starting that I have noticed that now I am hearing not only a ring in my ear, but also my pulse.

    The longer this has gone on, and the more things that keep happening, make me wonder is this really what we have or is it just a name for something else that we haven’t figured out how to explain yet? My goal since I got diagnosed was to try and figure out why this is happening. There has to be a common thing that we all had/have. That is why it is so important that we find a way to designate a place for us to talk. Patients talking to patients is way more beneficial than doctors talking to doctors. Is it a virus or sickness that first started your symptoms? Does anybody know if they had a head injury before this started? Medical procedure? Just stress in life? Pre-existing ear problems? I really hope we can all find relief somehow!

  13. My balance due md was a little off ent suggested gentamicin had 6 made my balance worse couldn’t drive and to hang on to husband to walk In PT has anyone had this happen don’t know if I should have a 7th

  14. I have been diagnosed for four years now and am wondering if anybody else has an allergy to mold? I believe that may be the actual cause of this disease for me specifically. Started taking an allergy pill daily and my tinnitus has almost gone away completely and my hearing has come back.

  15. Jacqueline St John-Jones

    The mold allergy/fungal infection idea has been explored by this gentleman, you can take prescription anti fungals then go on a candida diet, I found his path of treatment inspiring and have completed steroids, anti viral and now anti fungal treatments to cover all bases! https://joebongiorno.com/menieres-disease Hope this helps!

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