Wednesday, September 30, 2009

Meniere’s disease and herpes

If you have read much on the web about Meniere’s disease you will find that most say the main cause of this disorder is due to an increase of fluid in the membranous labyrinth, which is in the inner ear. This area is filled with a fluid called endolymph which moves around the membranous labyrinth sending signals to the brain about your balance. When there is a rupture in the membranous labyrinth, the endolymph may mix with something called perilymph, which in turn causes the symptoms of Meniere’s disease. For a more detailed explanation go to NIDCD, the National Institute of Deafness and Other Communication Disorder.

In the past I have written about the reason that I think I have Meniere’s disease. Another interesting theory is the connection between Herpes and Meniere’s disease. There is evidence that the Herpes simplex virus is presence in the endolymphic sac due to a virus can cause Meniere’s disease symptoms and if you have the symptoms you are considered to have the disease. However having Herpes simplex virus in the endolymphic sac is not a guarantee that you will get Meniere’s disease. This could be the reason that there has been some success with the drug acyclovir, an anti-herpes drug.
Dr. Hain has an excellent explanation of all this on his website.

As usual there is no definitive answer as to what causes Meniere’s disease.

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  1. David, I also have herpes simplex (cold sores on lips) but never wondered if it might have something to do with my Meniere's. I started the Meniere's journey in 2000, following a very bad case of bronchitis that ended up affecting my left ear. Since then, it's been a roller coaster in many ways. I'm so happy to have found your blog... so many of the online support groups are utterly useless, but your observations are smart and insightful. I will probably be a regular visitor...
    September was a horrible month for me, with repeated attacks of varying severity. I lost my job a month ago, which probably resulted in stress that exacerbated the symptoms. Now I wonder if I'll be able to hold a full-time job again. I'm working with my ENT, considering getting second or third opinions, desperately seeking a way to control the symptoms.
    I'll be in touch. Thanks again for starting and maintaining such a sensible compendium on this heinous disease.

  2. Hi Peggy,
    I went on disability last year because of Menieres and right now I am on fmla which is a program where I have can miss days, without pay, but my absenses wouldn't be held against me.

    But I am worried about the future because if I had to find another job I know that it would be difficult because of my illness.

    I appreciate the kind words and let me know if there is anything I can help you with

  3. I'm curious... if you interviewed for a new job, would you tell them up front about the Meniere's? I had a job interview last week, with a company where I had worked a few years ago, and if they offer me the position, I am terribly conflicted about whether I should disclose the Meniere's or take the job, hope for the best, and tell them what I need to when problems arise. I'm a journalist, and a lot of my work could be done from home, but I worry about "brain fog." It's such a difficult balancing act, and now it's a bit of a moral dilemma. I'm a very honest person, and have no plans to shortchange an employer, but I have to live.
    I guess I will start looking into disability and see where that gets me. How I wish someone would find a real answer to this illness.

  4. If you can do your job mostly at home then it you shouldn't worry about telling them. But if your conscience is going to bother you, mention it but reassure the company that you are capable of doing the job.
    You'll make the right decision
    good luck

  5. I might ask my doctor about this. Before my Meniere's announced itself four years ago (with tinnitus), I'd had a sore mouth then throat for about nine months. It started with a very bad outbreak of sores on my tongue and inner cheeks at Christmas and never quite went away. As my ear problem developed I often felt that whatever it was was periodically moving between my mouth and my ear - if my ear felt normal, my mouth didn't and vice versa.

    I don't believe I've ever had any anti-virals so trying one might be worth a go, although as I understand it it might not be a cure as such, just a suppressant.

  6. That sounds very painful! It seems like there might be a connection there with you getting meniere's shortly after the outbreak of sores.

  7. Being as my Meniere's cluster is still on the go I've been to the doc this morning and I'm starting a two-week course of Acyclovir (Aciclovir her in the UK), 5*200mg daily. It'll be interesting to see what difference it makes, if any. I'm stage two Meniere's (middle) and I did read that later on anti-virals are less effective, but as ever I'm hopeful!

  8. good luck Jeff! I hope that the acyclovir are effective for you

  9. I can report that unfortunately the Aciclovir didn't do much for me. I had a run of good days at the beginning of the course but then went back to normal for the remainder. Discussing it with the doctor he felt this was just coincidence and I now agree; since then I've had a few runs of attack-free days. It's possible that the dosage wasn't high enough, but for now I'm going to move onto other ideas.

  10. Hi David,
    I am happy to find your blog. I have a question for you -- Have you ever tried taking Acyclovir? I am only 31 years old, and I have had tinnitus since 16. Now I've been diagnosed with MD. I have occasional outbreaks of cold sores on my lips, and I've acquired chicken pox when I was a kid. Do you think taking Acyclovir could help?

  11. Hi Miss D,
    I haven't tried Acyclovir. It is best to check with your doctor about taking it.

  12. hey all,
    i am from india. i have been had 2 drop episodesfew minutes) and 2 longer episodes in the last 4 years. the recent big one being last week and the 2 drop ones in the last 6 months. i have a cold blister on lip once in a way. the first time i was prescribed acyclovir(diagnosis being herpes simplex). this time though its been a long week of dizziness especially when i try tio pick something or lie down face down or turn around when i lie flat. it just comes and goes. the doc has asked me to focus on a object and visually create a balance. i was getting a kind of drowning sensation last week(like something holding my nose n face). is this meniere's? the doc says so.

  13. Rose, it could be benign positional paroxysmal vertigo (BPPV), which occurs when tiny crystals in your inner ear are out of position and actually move around. They respond to your body movements, which causes the vertigo sensation.

    Does the vertigo always happen when you change the position of your head? When you look up or down, or move your head from side to side? Those are the symptoms to look for in BPPV.

    But there are many types of vertigo, with different causes. If it's BPPV, there are physical therapy treatments a doctor can do in the office for you, and exercises you can do at home.

    But it sounds like you might need to keep looking for answers.

    I'm a bit skeptical of the herpes connection. I also get a cold sore on my lip from time to time, but I have no idea whether there's any connection.

    I hope you find some answers soon.

  14. I suffered from sudden onset of sensonueral hearing loss at the age of 24, it started as tinnitus and never went away. I experienced slight vertigo but seemed to just adjust over about a month. What is interesting is at the time i was being treated for swollen glands in my neck and sore throat, and had been put on antibiotics for an infection in my wisdom teeth i also had a urinary tract infection and my whole body just felt sick!, so naturaly my body said HEY! as if your not stressed enough... here.... have a cold sore.... my doctor said none of it was related! Anyway had MRI and hearing tests and saw ENT spec and he just put it down to a virus and said i will never get my hearing back... thats all!!!!!
    Does this sound like Ménière’s Disease?

  15. Hi,
    whenever I am in doubt of any diagnosis I try to get a second opinion or even third opinion.
    thanks for the comment and stay in touch

  16. Very happy to find this blog. I think there is definitely a connection with the cold sores. Last month (Aug.) I had 3 cold sores, one after another. I have one trying to come up but I keep icing it and it keeps it at bay for a short time. Last night, I got a deep brain fog and then the hearing went. Like I was under water. When I woke up, the hearing was worse.

    30 years ago, a doctor suspect I may have Menieres, but my symptoms resolved.

    Now, I am under a tremendous amount of stress in every area of my life, and I attributed the cold sores to the stress, now, coupled with the Menier's symptoms, I can just about diagnois myself. I have no insurance so I cannot see a physician, but after reading about this disease today, it appears there's not much a physician can even do.

    I started a new job FOUR days ago, (paralegal). It is extremely stressful in that office. I've worked for attorneys for 30 years, but this place wins for the most dysfunctional.

    Now, as I sit here in bed with my laptop, I wonder, what's next. I don't know where to go with this. I've called in sick on my 4th day and have $36 in the bank and a house note due yesterday.

    Depressing day.


  17. Can anyone suggest exactly which type of doctor I should begin with for this road I'm about to embark on? I don't want to spend money on my GP just to have him send me to some specialist and spend more money. ENT? After a full day of this now, I am certain that I cannot return to work on Tuesday (after the holiday). I am hoping that the firm will agree to let me do some typing or phone calls from home to still make a little $$$.

    I'm a bit devastated over all of this right now. The hearing loss has gotten worse and the ringing has begin. I took a nap today and prayed that when I woke up that it would all be gone, but, it wasn't.

    So, ENT? Or some other physician? I'm in Austin, Texas in case anyone has any suggestions.

    Prayers to all.


  18. Hi Jennifer,
    If you have ringing in your ear and hearing loss you probably need to go to an ENT. I know it is difficult right now but things will get better.
    stay in touch and let us know how things are going.

  19. Definitely an ENT. I'm so sorry you're going through this, Jennifer, but there actually is quite a lot that doctors can do to help alleviate symptoms, so don't give up. It is just difficult to have to sort through all the therapies to find which one helps you.

    The common thread here might be stress. Stress makes the symptoms of Meniere's Disease worse, and it brings out cold sores. The two might be connected, because some people say the medications that treat cold sores also help with Meniere's. I've always known that stress makes my Meniere's soar off the charts... ditto cold sores. There could be a connection between the illnesses, but the bottom line for me is to avoid stress as much as is humanly possible.

    I hate to say it, Jennifer, but this might be a very bad job for you, and you might be better off getting out of it. I used to work for law firms, too, and there are vast differences between them. I've been thinking lately that if I can't get the Social Security Disability approved, I might try to do transcription work for law firms.

    But first things first: See an ENT. Sorry I have no suggestions for anyone in Texas, but perhaps your GP can refer you to someone who is good in this area? It's worth asking. Good luck.

  20. Thanks to both of you for the kind words and information. As odd as this may sound, when I was at work last week, I met an attorney that is rather down on his luck and is in town to care for his brother that has a very serious form of cancer. Apparently this attorney had been sleeping at the hospial and riding his bike to work. His brother is getting released today and David, the attorney I work with needed a place to stay. My house is in between his brother's house and where we work. I offered him a room and he is moving in today and paying rent. That will help. I'm going to talk to him tonight about my job situation there. Though he is definitely not in any for a decision maker at the firm, he could give me some good advice on how to handle this in the immediate future.

    I will contact my mother's ENT on Tuesday and try and get in to see him. I'm sure she will pay for the visit. Thankfully! I would like to start having my symptoms documented and I am curious to see how much hearing is gone and if he thinks it will return.

    Though I do feel a bit dizzy, I'm not experiencing the severe vertigo that I've read about. It's the hearing and the roar in my ear/head. The slightest noise seem very muddled and magnified. I can't really tell where certain sounds are coming from if that makes sense. It's all rather distorted.

    Thanks again, and thanks for this blog.


  21. hello jennifer
    few things you can do before you see an ent specialist:
    no smoking
    no drinking alocohol
    gluten free diet
    low histamine diet
    non fatty foods
    stay away from msg, sugary food, e numbers
    no stimulants
    and also to save you alot of money and time head to an ent who is a neuro-otology ent thats specialises in menieres, remeber not all can help with menieres.
    stay strong and who knows you may be one of the lucky ones that have it just for a while.

  22. Jennifer, the items from Ali's list that most doctors will tell you to avoid are the alcohol and caffeine. What he doesn't list is salt... that is, frankly, the most important thing doctors will tell you to avoid if you have Meniere's or just tinnitus. The rest of the stuff on his list are things doctors will tell you might or might not work, but they won't really recommend you avoid those things because there's no medical evidence for or against them.

    Mostly, if you stay away from salt, alcohol, and caffeine, it could help. It doesn't work for everyone, but it can't hurt.

    An ENT should be able to tell you whether you have Meniere's or something else. Without vertigo, it could be early stage Meniere's or something entirely different. It might even be something they can treat and get rid of!

    I'm glad you have found a colleague who can help you defray costs and maybe advise you about how to handle your job. Be a little cautious how you approach that with anyone, but it couldn't hurt to bounce some ideas off him, I suppose.

  23. hello peggy
    jennifer is someone who needs answers at the littlest expense possible due to financial restrictions.
    sorting out your diet is something that could cure her (the only one i missed out was salt, but you right that is the number one on the list lol, stimulants encompasses coffee and chocolate).
    what we have here on this site is mainly the hardcore set of sufferers, there are alot of the new ones that through diet can be clear of this problem. hence i recommended what i did.
    its funny when you say there is no medical evidence, that is the exact problem with doctors there is no grey area. its just black or white for them.
    please do everything on that list including salt as it could save you alot of money and time.

  24. In general, I sort of agree with you, Ali, although I'm not at all convinced about a lot of the things on your list. In addition, I have to admit that cutting salt, caffeine, and alcohol don't seem to have made the slightest difference to my own situation.

    It's true that Meniere's is filled with grey areas and uncertainty, and for that reason I would really hesitate to say that diet could ever "cure" anyone. It could be worth a try, though.

  25. how do you get a doctor to listen when you suggest meniers disease??

  26. Hi All,

    I have an appt. with a top ENT here in Austin today at 2:30. My symptoms have gotten worse the past few days. Last night I could not eat much, nor keep any dinner down. I'll report back this evening after I see the ENT.

    p.s. I post as Anonymous because I don't want any google searches pulling up my email address which I have posted below, with spaces.

    Bradley787 @

  27. Carkly, did you mention it to a GP or to an ENT? And what are your symptoms? A GP who doesn't see much Meniere's Disease might not recognize it, but an ENT would consider it if they thought the symptoms were consistent with the disease's profile.

    Jennifer, good luck with the visit to the ENT. Hope they help you find relief.

  28. Good news to report. He diagnoised me with

    Apparently there is no cure, rather it will take several weeks to resolve.

    I'm so relieved and so glad you urged me to see an ENT, it was worth the $300 my mother paid.

    Thank you to all!


  29. Woo-hoo! Excellent news, Jennifer! :)

  30. hi peggy and all else,
    my symptoms when i have an attack are intense headaches, and i get stupidly clumsy, not so much vertigo, unless its affecting me in the way of insanely clumsy and bad nausea, the ringing in ear turns to screaming, cold sores, tonsilitis ( or throat infection), and the only way i can describe is i feel sick all over, feels like my body is under attack. First time was 2 1/2 yrs ago when i got sick like that then lost my hearing and my ear started ringing, seems almost exactly 2years and i had another attack exactly the same, got scared i was gonna lose hearing in both my ears, but i didnt. over it again for now, getting another hearing test in a few days and lookin at getting a hearing aid....
    The only reason i want a hearing aid is to maybe relieve the ringing in my ear.... does a hearing aid help that does anyone know????
    it drives me crazy and messes with my anxiety and depression.
    when i saw the ENT he looked at my MRI, said no nasty tumors there, and literally told me i lost my hearing due to a virus and i'll never get it back.... took y money and sent me packing..... i just want a break, im trying to be a good mum.... this makes it hard :(

  31. Hi Carkly,
    It sounds you have tinnitus. If I were you I would try to get another opinion from another doctor about what can be done about your hearing problem.

    I don't know if I have ever heard anyone say that tinnitus can be helped by a hearing aid.

    Stay in touch and let us know how things are going

  32. Carkly, so sorry you're going through all this. I will second what David said -- you should get a second opinion about all this. And, unfortunately, I don't think hearing aids are any help in getting rid of tinnitus. I'm not sure there's anything that can be done about tinnitus... YET. I keep hoping they will figure out a cure for that, and all the rest of what happens to people who have these problems.

    For now, if the only reason you're getting a hearing aid is to get rid of tinnitus, save your money. I found that a hearing aid didn't do much for me, and it did nothing about the tinnitus.

    Good luck, and I hope you will look for another, better, ENT.

  33. hello carkly
    this site is probably the most informed site about menieres on the internet, but be careful reading to much into this site(as it could make you panic more), as alot of people on here are the hardcore of menieres/balance problems. i believe most people within a year of balance problems/tinnitus can overcome the severity.
    alot of people can live normal lifes with a few lifestyle changes, for sure you need a new ent dr though.
    but until you get a new dr try the following things for your tinnititus.
    vitamin b6 b12 niacin
    cranial osteopath
    neck stretches
    diet changes, eat very basic no stimulants and spices in your food, also try a low histamine diet.
    keep your stress down

  34. Ali,
    I agree with some of what you said but there really isn't any data that says that most folks don't have any problem controlling meniere's by making lifestyle changes.

  35. From what I have been reading, it seems to be the medical community who puts forth that most folks can control Menieres with diet and diuretics.(course they aren't suffering from the symptoms)
    Yet when you hear from people with actually have Menieres, tinnitus,vertigo,etc....they are miserable in many cases, and trying hard to hang on and get through it. They might choose to disagree with what the Doctor's think.God knows I do.
    It seems like it really depends on what degree you have it. For those who have it bad, it's a daily struggle.
    Speaking for myself, the more attacks I have, the worse all other symptoms become.
    Severity and frequency appear to play a big role in all of this.

  36. Ali, on what do you base your statements? I'd be very curious to know where your statistics about "most" Meniere's patients are coming from.

    Please be careful when you're tempted to make sweeping statements or recommendations -- there's such a wide range of inner ear and balance problems, and no one solution works for everyone, regardless of the severity of the problem.

    Carkly, I wanted to go back to something else you said in your earlier post about becoming clumsy. I have known for a long time that I'm much more clumsy than I used to be.

    My husband, who is ordinarily very sensitive about anything to do with my Meniere's problems, is not very kind when I do something clumsy. But I might not have noticed how prevalent it's become if he hadn't started teasing me about it.

    I'm wondering if my clumsiness, and yours, might be due to compromised balance. I've learned I cannot squat down on my heels any more, period. I managed to fall over in Home Depot the other day while trying to read a tag on a low shelf. I'm still trying to learn NOT to try to do things like that any more. It's frustrating.

    It's a process, learning what's wrong with us and what helps make things better. We just have to keep trying to figure it all out.

  37. hello david
    i am having surgery, so i am in the bracket of serious menieres, what my point was is that there is alot of people out there who can be helped by lifestyle changes, without going to our levels.
    when i first got menieres it was awful (still is lol), but lifestyle changes/medicines have not cured me of the syndrome, but i can for sure say that it has helped me alot.

  38. Ali,
    What surgery are you having? I'm actually having my 2nd surgery Tuesday. He's going to put a shunt in this time. I'm anxious to see if it works. The pressure has been unbearable and I have been having lots of episodes at night, which makes me exhausted during the day. What I experienced during my first surgery, whas that recovery was terrible for about a week. My ear felt like it was going to explode, but that's only due to all the swelling from surgery. After that, the pressure went away, so did the other symptoms. I only started feeling bad again after I had Thyroid surgery, which don't they say can be related?
    Anyways, hope everything goes well for you!

  39. hello tara
    i am at the first stage in rleation to surgery, my surgeon is putting a grommit in and injecting stelroids into my inner ear.
    good luck with yours also

  40. i fall over when i close my eyes.... its a little bit funny, ... sometimes... kinda, ... for other ppl.... i close my eyes to kiss my partner and i lean and fall as if ive just had a dizzy wizzy ( uno when you hold onto kids hand and spin em around) And like you Peggy, my partner teases me :( in a nice way :)
    The last 2 days my ear feels like it has a bubbleof air or water or something, never had this feeling before and i cant seeem to shake it,i feel it most breathing in and out, feels like a bubble of rushing air or water.
    i guess reading these posts i feel i have something in common and that there are other ppl who feel my pain and frustration, even though i am not diagnosed with meniers.
    Thanx everyone!

  41. And thanx for reading and replying even though i am not diagnosed, still helps.

  42. another cold sore yesterday... how can this not be related??? Im over it i cant do this anymore, there is no hope

  43. Hi Carkly,
    I know that this can all be difficult at times but please don't give up.
    Hang in there

  44. hello carkly
    do you take L-Lysine, i have heard many good things about this stuff. (ref:cold sores)
    keep strong my first 4 years of menieres was hell but through medicine and lifestyle changes i have some great days. always remeber there are people much worse off.

  45. Carkly, it is horrible to keep having these dreadful symptoms and not have a doctor working with you to resolve it. I really recommend you see another doctor.

    It's not enough for your doctor to tell you your hearing was destroyed by a virus and that's it... you need someone working on your vertigo and other symptoms. You could also go on Valtrex to get the cold sores under control. There are treatments that will help, but it takes some time and experimentation to find them.

    Don't give up. There might not be a cure, but there will be something that helps relieve your symptoms. But you have to keep going to find some answers.

    Find another doctor. Get someone who is on your side and will work with you towards a better existence. Don't let one doctor condemn you to hopeless misery, because it's unnecessary.

  46. Carkly's plight has me thinking about how important it is for Meniere's patients to have advocates who will help them sort it all out. I know Lauri has also had issues with a doctor who resisted ideas that were not his and was generally not helpful or open-minded.

    It's maddening to me when doctors, who should be a Meniere's patient's best defense against this awful disease and their strongest advocate in achieving a better life, are often either ill-informed or simply indifferent.

    I would strongly advise anyone who has Meniere's Disease to find a doctor who is really on your side, willing to listen to you, and very up-to-date about symptoms and treatments that are available.

    Even more important for me is a doctor who is willing to LEARN more about the disease, rather than assuming they know it all already. There's so much information out there, but we all need an expert who can help sort out the best approaches for individual patients. It's not a simple disease, and it doesn't have a simple, one-size-fits-all solution.

    Keep looking for a doctor who doesn't just want to take the easy way out, everyone!

  47. I have just begun to suspect I have Ménière's disease, as yet unconfirmed. The number of visits on my insurance is limited to 7 per year and I must wait until May 2012.

    I have had tinnitus and right ear hearing loss since 1996 when I had a case of bell's palsy.

    In January of this year I had a severe first case of vertigo, did not know it was vertigo and went to the emergency room. Then just three weeks ago I woke up in the night with vertigo, got up to go get my meclizine and had an EXTREME episode of vertigo and then a "drop attack". I fell on the tile floor, knocked my head pretty good and fractured my right ankle...another emergency room visit. The whole thing really scared me. Both of the above incidents were preceded by one MD giving me a B12 shot and the other MD starting me on a new supplement regimen.

    I also have chronic fatigue syndrome and the MD's were trying to kick start my immune system. What happens at that point is my body goes into a "healing crisis" and my sinuses and ears fill up with fluid, then I get sick with a cold. I try to manage the episodes with antihistamines and other allergy medicines, but it is difficult.

    Additionally I've had trigeminal neuralgia after episodes of ear and throat drainage. This is a condition in which one side of the head experiences incessant ice pick pains. It is called the "suicide" condition. The pain is on the right side, the same side I have the hearing loss and bell's palsy (only regained 75% use of right side of face). I manage this with Lyrica, which if I take soon enough, will stamp out the pain. If I let it go, the pain just builds on itself exponentially and is hard to get under control.

    So, what all three of these conditions have in common as to their suspected cause is:

    1) virus - I have latent Epstein Barr virus in my body, currently in remission. Virus is big suspect, but don't forget it could be bacterial or fungal. Because of the state of my immune system due to CFS, I have dealt with chronic bacterial and fungal infections for two years. Since my gut permeability has been affected by CFS, I suspect systemic issues with both bacteria and fungus in my body organs. When the CFS first started, I got chronic herpes simplex virus on my lips and had tremendous allergies. I've learned to control them with supplements for the immune system, primarily vitamins b6, b12, c, and d3 and also a product called acetyl glutathione, a detoxer. I take upwards of 50 different supplements and prescriptions a day.

    2) Osteopathic issues in cervical spine due to whiplash - guess what, I had severe whiplash in C1, C2 and C3 as a teenager, which was never really treated properly.

    3) Allergies, colds, fluid buildup - I am susceptible to these all the time due to CFS and immune system issues.

    This is my history...vertigo, drop episode, tinnitus, hearing loss, trigeminal neuralgia, bell's palsy, chronic fatigue syndrome. There are a long list of other issues with CFS that I deal with on a daily basis, too long to mention here. By the way, my name is Debra and I live in Austin Texas.

    1. Wow. I feel like I don't know where to begin so I'll just throw it out there.

      I have had episodes of vertigo for 13 years. BPPV diagnosed early on.

      Fast Forward to three years ago. I had my last bad episode of BPPV. A couple months later I contracted HSV1 Virus which I took valtrex on and off for last couple years as needed to keep outbreaks at bay. Shortly after the HSV1 diagnosis I was also diagnosed with Epstein Barr Virus. I have been in an active status for approximately two years. Which is when my secondary issue to my ears came about. I have always had mild tinnitus. Then one day close to two years ago I woke up with super loud ringing in my left ear and basically it has not left me. There are a few days when it is not horrible but always present. When it is horrible I can expect to have a vertigo attack soon. And they are severe (and these attacks started again about 6-8 months ago) and I have them fairly frequently and they last anywhere from 3 to 7 hours where my whole world spins....I am in a cold hot sweat and vomiting the whole time and no balance. Absolutely horrible. I have had three attacks at work alone. I take meclazine almost on a daily basis. Anyways....referral to UCLA Head and Neck. Spent all day Friday there. I was diagnosed with Meneire's Disease and basically the option given to me was Vestibular Nerve Dissection. I spoke with one of the neurosurgeons today and am in the process of setting up balance testing and mri prior to scheduling my surgery. I was honestly resigned to surgery and now reading these comments about Herpes Virus and MD....I am going to ask my doc about them when I go for my MRI. I don't want my skull cracked open if it's not necessary.

    2. Gigi, what an awful time you are going through! Those symptoms do sound like intractable Meniere's Disease, but what other treatments have the doctors tried? Yes, the nerve section is a good option for intractable Meniere's (symptoms won't go away for more than a year despite trying numerous treatments); however, I am a little concerned that your doctors have leaped straight to surgery... Have they tried other options?

      I'm not knocking the surgical option: I had a labyrinthectomy myself after more than a year of trying every treatment known to medical science. Nothing else worked, so after a year my doctor suggested surgery, and even then I got a second opinion before going ahead with it. My symptoms were very much like yours.

      Forgive me for questioning the plan your doctors have developed, particularly if you have already tried a lot of other approaches to stop the symptoms. And good luck with the surgery and recovery, assuming you are going ahead with it.

      There are a number of threads on this blog about various surgeries related to Meniere's. You should scan a few of them for more thoughts on different treatments and opinions on the surgeries that are available.

      Good luck.

    3. Yes, I think you should educate yourself before jumping into the most drastic of surgeries. Know the risks that you are taking...especially if you go bilateral.
      Like Peggy said, there is a many years of experience on this blog site.
      Was anything less invasive or less destructive offered or did they go straight to this?
      Best of luck with whatever you choose to do. Ask questions.

  48. Hi Debra,
    You have certainly gone through a lot with the vertigo, tinnitus and other ailments. I certainly hope you don't have meniere's disease too.
    I appreciate your comment and please stay in touch and let us know how things are going.

  49. Hi Debra~
    I have fibromyalgia in addition to Menieres disease, so the CFS comes into play.
    I have heard of others who had experienced Bells Palsey and went on to have Menieres.
    I've often thought there must be some link between it all.
    Have your Dr.'s ever tried you on Acyclovir (ant-viral med)?
    I'd like to at least try it..but my ENT is one of the non-believers in it working, despite some help it has been to others. Doesn't work for everyone though.
    I also hope you have not gone into true Menieres. Enough is enough.
    Take care!

  50. Debra, I'm so sorry for what you're going through. What I find interesting about your story is the connection some doctors think exists between immune disorders and Meniere's Disease. I think it's possible that the efforts to boost your immune system might have cause the symptoms that look like Meniere's. But that would be a Catch 22, because you need a strong immune system to fight some of your other health issues.

    I've read about possible links between bell's palsy and Meniere's, between herpes and Meniere's, and cervical spine problems and Meniere's. You have to start wondering whether that's too much of a coincidence, since you have all of those things. I would suspect they all fit together. But don't take my word for it, because I'm not a doctor. I've just done a lot of my own research on this syndrome, and remember coming across references to those other problems.

    Do you have several different doctors working on your various health issues? If so, it would be a good idea for them to talk to each other and look for a holistic way of treating all the issues together, rather than independently. But you say your insurance is limited, too. That does make it a lot more difficult. I'm sorry.

    Have you tried the dietary changes that others have suggested on this blog, and supplements that are supposed to help with Meniere's? Cutting out salt, alcohol, caffeine and so on could help, and it could also help to cut down grains, glutens, and allergenic foods (Ali posted about this on another thread in this blog). B12 is known to help with tinnitus, and there are some other supplements that could be beneficial.

    I think if I were in your shoes, I would try every remedy that's out there for Meniere's that doesn't involve doctor visits and prescription medications. I would search the Internet high and low for everything that's been tried, including some of the really strict dietary regimens (John's Diet, is it? I forgot the name...). There are a lot of theories out there, and it can't hurt to try them while you are waiting for your next appointment.

    I hope you find some relief soon.

  51. Hello all...

    Because of the chronic fatigue syndrome and food allergies, I am on a strict diet which is limited to meat, vegetables, some fruit low in sugar, a little rice, and nuts...low carbs. I am also gluten, sugar and lactose intolerant. I have not had any grains, sodas, chocolate, sugar, condiments, alcohol or any other stimulants in two years.

    I spend about $400 - $500 a month on supplements, including high doses of B12 and other immune system enhancers. My immune system is impaired so much that it can't fight normal bacteria, fungus or virus, so I must take daily meds to fight them off. This year alone, I've taken 5 rounds of antibiotics...not good! With the help of a Doctor of Osteopathy, she's gotten me off the antibiotics and I'm eating bentonite clay every day. This draws bacteria and fungus to the clay molecules and then is passed out in a bowel movement. This process works better than anything I've tried and I have tried almost everything. It has also helped, but not cured my irritable bowel syndrome and chronic constipation. The bentonite clay is also a good chelator of toxins...when first taking it, the toxin release is overwhelming, but it levels out in a couple of days.

    I have taken anti-virals in the past (Valtrex) when the trigeminal neuralgia first flared up.

    My adrenal gland and thyroid function have been affected by the CFS and at my MD's suggestion, I take a morning dose of celtic sea salt, lemon and water to balance my electrolytes and help with extremely low blood pressure with orthostatic hypotension. I need to talk with the MD about this. Orthostatic hypotension is dizziness when getting up. I have no problem discerning the difference between this dizziness and the vertigo, where I am spinning uncontrollably...very different issues.

    I am already on the suggested diet, except for the salt.

    I have spent hours and hours on the internet researching every aspect of what I am dealing I'm sure we all have. Some things work, some things don't.

    Daily Meclizine helps keep the vertigo under control. it's just the gotchas when the immune system is being challenged to work.

    Thank you all for responding...Debra

  52. Debra, you raise an interesting point for me: Osteopathy. It sounds like your D.O. is thinking through every possible angle and approach. I think I will look into that again, since I don't currently have a primary care doctor (just a small tribe of specialists in several areas).

    I don't know what to say to all the medical problems you're facing -- I would be overwhelmed. Salt is one of the first things an ENT will tell you to give up when you have Meniere's, but with the thyroid and hypotension problems, you might not be able to give it up. I imagine that would be a tough balance to hit.

    Good luck... :(

  53. I was wondering if anyone had Bells Palsy before they got MD? Bells Palsy is also said to be caused by the Herpes virus. I had Bells Palsy a year before I got MD and the palsy was on the same side as my ear with the disease.

  54. Anonymous~
    I didn't have Bells, but a month or two before the Menieres hit I began to have really strange viral type symptoms, sudden high blood pressure, teeth pain, and vision issues.
    After 3 years of Menieres, I STILL cycle back through the same symptoms about every 3-4 months..and the vision I realize now was (and still is) Nystagmus(the eye shaking).
    I do believe that it all has a connection.

  55. I'm 45, male from CA who has been living in Thailand for the past year. I'm moving back to CA in two days and will see a doctor when I get there. I started losing hearing in my left ear some time in '09. I noticed it when I talked on the phone but didn't think anything of it. Old age? Nope. Meniere's. I keep track of my dizzy spells and categorize them like hurricanes, 1 to 5 with 5 being the worst. I had my first two dizzy spells in mid June of '10 with a 3rd, severe dizzy spell about 2 weeks later. The 3rd dizzy spell was two hours of living hell, truly a category 5 hurricane and I really thought I was going to die. I was working out in the morning at a park and it just hit me. Severe vomiting, heavy sweats, blurred, shaky vision, roaring in my left ear and difficulty walking. Except for tinnitus and a roaring sound I was fine until 10 Sept 2010 when I had the worst ever spell. Another cat. 5. From my first dizzy spell until July 2011 I would get dizzy spells that varied in severity about every 4 to 6 weeks. In late July of 2011 I moved to Thailand. As my plane pulled into the gate in Bangkok I felt a dizzy spell coming on and it turned out to be a cat. 5 spell. I spent about an hour in a bathroom stall vomiting/dry heaving. I'm sure I must have looked drunk as I walked to the nearest restroom. Thankfully, Thai people are often late so I was able to have some "me time" while my friend was driving to the airport. I had another cat. 2 spell about a week later then for the most part have been symptom free while living here. I did have one spell last January but it was so mild I'm not sure if it was related to Meniere's. 2 days ago I was outside and I went to spit. I couldn't spit properly and I couldn't whistle. The next morning the left side of my face was 80-90% paralyzed. I started to really get worried. I didn't know what was wrong with me. After reading about facial paralysis I'm guessing it's Bell's Palsy. Anyway, since '09 I haven't changed my diet in any way. In fact, in the past year I would say that my diet is less healthy than it was in CA as my vitamin regimine has been sporadic while living here. My wife and I have a Thai restaurant in CA so Thai food was part of my diet back in CA. I also still smoke a lot and drink very little alcohol. I'm a little worried about returning to CA. Will my dizzy spells return with greater frequency like before I moved here? I hope not. I saw an ENT and had an MRI in July of 2010. I don't even recall specifically what the doctor said because she didn't say anything. She had no clue. I just decided to forget about it and just deal with it as it comes. But having lived here in Bangkok with its dirty, smoggy air for the past year and being virtually symptom free has really got me thinking. On the other hand what's up with this Bell's Palsy? Could the Bell's Palsy, or whatever it is, be environmentally caused? Ok, I've blathered on long enough. I'll try to let you know what happens in the next few months or so. Go Giants! ;-)

  56. Keith, you have been been put through hell! Regarding the Bell's Palsy, it's a neurological disorder, and I'm sure it would be a good idea to see a neurologist as well as an ENT once you are back in CA. There has been a lot of speculation that Bell's and Meniere's are somehow related, and I think both are also related to migraines, which I've begun having. Which makes me think there's a neurological component to Meniere's that's not getting its full share of attention.

    I also wonder if perhaps what made you feel better in Thailand might have been a more laid-back lifestyle. That has a huge impact on Meniere's patients. Pollution (and that includes smoking, by the way) can only make matters worse, by limiting oxygen to the brain and affecting your pulmonary function. And don't forget that most Meniere's patients can have prolonged remissions, then relapse, no matter where they are.

    Anyway, good luck, and I hope you get good results from whatever doctors you see.

  57. I just turned 31 this year. I was having a lot of stomach trouble. My doctor was putting me thru some very bad tests when I started feeling dizzy and nausias. After three days my right ear completely went silent and I felt like I was on a boat and could not focus. I spent two weeks like this. When I told my doctor he called and ent right away and went thru a series of test to confirm a Mieners diagnosis. I feel like my life is over! What can I do?

  58. I know that it can really be a troubling time when you first are diagnosed with meniere's but things will get better, try not to give up.
    Hang in there and stay in touch

  59. david- I have a "soft" daignosis of MD although my Dr seems reluctant to use the term. I saw a neurotologist...symptoms are imbalance(no rotary vertigo) but has recently developed tinnitus...I have a fullness in my left ear and constantly am holding my nose and blowing trying to clear it. My anxiety level is high...kinda waiting to see what presents itself next. I had a similar set of symptoms 2 years lasted about 2 months then passed only to return more severe in the last month. Any thoughts from those here regarding the onset of MD would be appreciated....Mike

  60. Hi Mike,
    It seems that a lot of doctors are also relutant to use the term as well because there isn't a cure for it. most of the folks that I have heard from with meniere's have rotary vertigo along with some kind of tinnitus. Although you can never tell with MD.
    I would definitely go to get another opinion especially if your anxiety level is high (I can certainly understand that!)

    Good luck and stay in touch