Q&A with BÉA



Q&A with BÉA: Frequently Asked Questions (FAQ)

Sometimes people offline ask me questions about my experience with Ménière’s Disease. Below are my answers to some of those questions. If you have a question not addressed in my posts, please leave a comment below and I will try to answer it.

Cheers,

Beatrice T J


Q: What type/frequency/intensity of symptoms did you have when you first started having symptoms?

A: Hmm, well for me symptoms started with unilateral hearing loss for a month of so followed by long periods of remission. There was some aural fullness too. The hearing loss basically happened over night. I went to bed fine then woke up the next day noticing that I’d had some hearing loss in one ear. I confirmed my suspicion by listening to the dial tone on my phone alternating from my bad ear to my good ear. By doing this I got a good idea about what sort of hearing loss I had. From this I knew that I’d lost some hearing in the low frequency tones of my left ear. After some tests, this was professionally diagnosed by an ENT as Cochlear Hydrops.

The hearing loss at this early stage was annoying but it didn’t greatly impact my life. I could still hear people well enough to converse with them without trying like I do now.

Cochlear Hydrops is often the diagnosis preceding the Ménière’s Disease diagnosis. I wasn’t diagnosed with Ménière’s Disease until a few weeks before my first Meniere’s vertigo attack (when the hearing loss started again), which was about four years after the initial Cochlear Hydrops diagnosis. I was lucky to have a three year remission in between both diagnoses. Ah, those were the days!


Q: How have each of your symptoms changed since the beginning (I think that you indicated that you have had symptoms for 8 years now)?

A: Well let’s go through the symptoms.

1.     Fluctuating, progressive unilateral hearing loss
This symptom stems from the damaged cilia (hair cells) in the cochlea & the fluid pressure changes of the inner ear.

After four years since my Ménière’s Disease diagnosis the hearing in my bad (left) ear doesn’t really fluctuate anymore. It’s still slowly progressively getting worse, but I don’t have those real hearing loss drops that I initially had followed by good gains during remission. On the days when I started going into remission, usually during a course of prednisone (steroid tablets), the improvement in my hearing was really obvious to me. It was as obvious as being let out of a dark room into a sunny daylight. Unmistakable and almost as fast.

2.     Aural fullness
This symptom is due to the increased fluid pressure in all of the inner ear: the cochlea & the vestibular (which includes the semicircular canals & the otolithic organs).

Aural fullness is one of the things you notice when the hearing starts to go, or within hours or a day prior to having a vertigo attack.

For me it’s probably one of the least debilitating aspects of Ménière’s Disease. At first it’s annoying, but there are many far worse things about Menieres than aural fullness. Like they say, “don’t sweat the small stuff”.

The thing that’s interesting about aural fullness that it’s like “a canary in a coal mine”. When aural fullness becomes more noticeable, cancel your appointments for the next few days and prepare for some quiet time at home as an attack may be imminent.

I probably have aural fullness now, but until it fluctuates one way or the other I don’t really notice it on a daily basis.

To me, aural fullness is the symptom that holds the key to curing Ménière’s Disease. Stop aural fullness and you can stop Ménière’s Disease.

3.     Tinnitus
This symptom is due to damaged cilia (hair cells) in the cochlea of the inner ear.

Ah, the dreaded tinnitus. This symptom fluctuates like aural fullness but it’s much more noticeable and annoying (particularly to spell). I notice tinnitus first thing in the morning when I wake up and the last thing at night when I’m in my quiet bedroom before I drift off to sleep.

I do notice tinnitus on and off throughout the day, but usually I’m concentrating on other things so my attention is not drawn to it.

If it’s noticeably louder (not just because I’m in a quiet room), then that often means a vertigo attack is imminent. So again, cancel your appointments for the next few days and prepare for some quiet time at home. Aural fullness & tinnitus are colluding against my work & social life.

4.     Dizziness, Disequilibrium & Brain Fog
These symptoms are due to fluid pressure in all the vestibular (including the semicircular canals & the otolithic organs) which damages the hair cells and membrane. This affects vision via the Vestibulo-ocular-reflex (VOR). This in turn affects the message being sent along the vestibular nerve to the brain. The brain then needs to adapt via neuroplasticity.

I put these symptoms in one category because they’re basically variations of the same thing. Dizziness, disequilibrium & brain fog are in my opinion are almost as bad as vertigo attacks because it is ever present and makes everything that much harder to do.

In the early stage of my Ménière’s Disease diagnosis, these symptoms weren’t really an issue for me. It has only been since my hearing levelled out around moderate hearing loss that I really noticed their debilitating effects. Dizziness & disequilibrium make me bump into things more often like doorways and coffee tables. They also make it much harder for me to any kind of action or movement on TV (even a slow pan movement). Plus I find that reading or scrolling text on a screen is aggravated by these symptoms.

Since the moderate vestibular damage (45% weakness) I’ve incurred from Ménière’s Disease I often find it difficult to think, type, or put sentences together the way I used to. It sometimes feels like Dyslexia. If you could only see how much trouble I have typing. Thank God for spellcheck. J

I used to be much more quick-witted; a mind like a steel trap. Hard to believe I know ;-). Now four years into this disease, I’m so thankful when I have a day with clarity of mind. It almost makes me feel like going for a drive, which I haven’t done for about nine months now. If I didn’t have this constant sense of disequilibrium & brain fog I would be driving and have my independence back again.

I’ve also found that I get mental fatigue more easily. I can’t push myself mentally the way I used to. I’m also more prone to headaches and sometimes migraines. Because of this I keep my days fairly open and try not to over commit myself with multiple events in one day or over consecutive days.

In many respects dizziness, disequilibrium & brain fog are the most debilitating aspect of Ménière’s Disease. At least attacks have a time frame of disability. You know that they will eventually pass. This is not the case with dizziness, disequilibrium & brain fog. You really have to alter your entire life around the intensity of these symptoms.

5.     Nausea
This symptom is due to fluid pressure in all the vestibular (including the semicircular canals & the otolithic organs) which damages the hair cells and membrane. This affects vision via the Vestibulo-ocular-reflex (VOR). This in turn affects the message being sent along the vestibular nerve to the brain. The brain then needs to adapt via neuroplasticity.

Dizziness & disequilibrium can make me feel nauseous, particularly in shopping centres aisles. Most of the time I don’t feel nauseous. It’s mainly when there are consecutive rainy days, on days when I’m feeling run down, or on days when I feel like I might have a vertigo attack. Watching movement on TV (like action sequences) can make me feel nauseous too.

Usually I’ll make a cup of ginger tea first (or chew on a ginger lolly or tablet) and see how I go with that. Fresh air, a glass of water and a lie down are also a good start.

I find that a Stemetil (Stemzine) 5mg tablet or a Zofran Zydis 4mg wafer helps with nausea. You don’t want to be using these prescription medications on a daily basis as they can have some bad long-term consequences.

6.     Sudden Vertigo Attacks
I believe this symptom is due to two things.

In the early stages of Meniere’s Disease, I believe acute vertigo attacks (1-6hrs) are due to the endolymph fluid pressure (in the entire inner ear) rupturing into the perilymph at the apex of the cochlea. The fluids mix causing a chemical & movement imbalance in the fluid which sends corrupted messages from the otolithic organs (of the affected ear) along the vestibular nerve to the brain. This affects vision via the Vestibulo-ocular-reflex (VOR).

As the disease progresses to moderate hearing & vestibular damage (over a number of years), acute vertigo attacks are replaced by more frequent mild vertigo attacks (5-30mins). I believe these mild vertigo attacks are due to the brain having difficulty processing the conflicting movement messages received from the damaged vestibular, versus the healthy vision & proprioception. These attacks are mostly triggered by perceived visual movement. If I’m feeling run down, these attacks can also be triggered by stressful thoughts or thoughts that require a lot of cognition (like trying to work out something technical).

I try to minimise attacks by simplifying my life as well as:
·         watching my diet (reduced sodium, caffeine & alcohol)
·         taking medication (Serc, Natrilix SR, Valium, Stemetil, Zofran)
·         complementary medicines (fish oil, ginkgo biloba, women’s multi-vitamin, vinpocetine, bioflavonoid, etc… see John of Ohio regimen on the Diet page for more info)
·         Vertigoheel
·         intratympanic dexamethasone injection/s
·         meditation
·         affirmations
·         vestibular rehabilitation therapy
·         cognitive behavioural therapy
·         lifestyle changes
·         I also make a conscious effort to bring more joy into my life and not to sweat the small stuff.


MORE Q&A COMING SOON!!

19 comments:

  1. Do you know of a researcher engaged in stem-cell research w/ Meniere's, lambyrinthitis,etc... anything related to regeneration of semi-circular canal function.. esp regarding vertigo? Thanks so much. If has information on this, please write me at sdietrich.boston@gmail.com Thanks!!!

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    1. Hi Susan,

      That’s a good question.

      I did a quick search of www.ncbi.nlm.nih.gov and www.plosone.org but couldn’t find any articles.

      The best people to speak to regarding regeneration of semi-circular canal function via stem cell therapy might be the Stanford Initiative to Cure Hearing Loss (SICHL) http://hearinglosscure.stanford.edu/stem-cell-therapy/ .They are conducting research into stem cell therapy to repair the inner ear (which includes the vestibular).

      However as the underlying issue with Meniere’s disease is the dysfunctional Endolymphatic Sac caused by herpes viruses & immunity issues (genetics may also be an issue), stem cell therapy probably won’t be of assistance until these issues are addressed.

      I don’t work in the medical profession, but I would think that if stem cell therapy is of any benefit to people affected by Endolymphatic Hydrops or Meniere’s Disease, then it will be best utilised after the viral & immunological issues are under control.

      In the meantime you might want to try a high dose Intratympanic Dexamethasone Injection and a high dose of Valtrex (valacyclovir) for 3 or 4 months (talk to your doctor to see if this is suitable for you). Also, try to boost your immune system by improving your diet.

      LESS
      Gluten
      Refined carbohydrates
      Sugars & synthetic sweeteners

      MORE
      Daily probiotic fermented milk (like kefir or Yakult) &/or a good probiotic capsule
      Fresh fruit & vegetables
      Water
      Rice bran
      Salovum & or SPC-Flakes

      Good luck Susan. I hope you feel vertigo free soon. :-)

      Cheers,
      Beatrice

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    2. Bea,

      Thank you so much for all your effort on my behalf! Actually, on the behalf of my friend... much inner ear damage after cancer/chemo and severe symptoms as you might imagine. I had also done a search through NIH funded research, then articles on their site.. then found a great one by Matthew Kelley - stem cell and inner ear - online. NIH... rt hand doesn't know what the left... well, you know. But you may be interested in his article: http://tia.sagepub.com/content/16/1/4.abstract gives the summary; get the full PDF article from this page.

      Stem Cell Therapy for the Inner Ear: Recent Advances and Future Directions TRENDS AMPLIF March 2012 16: 4-18,
      Takayui Okano, MD, PhD, and Matthew Kelley, PhD NIH

      If anyone reading Bea's blog has additional suggestions for my friend, please email me at sdietrich.boston@gmail.com.

      Again my thanks.

      Susan

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  2. Hi there Bea,
    this is the first time i have joined in with a forum or any sort of chat about Menieres.I have had this disease for approx 8-9 years and been passed from pillar to post with consultants. I have at last been passed to someone who actually appears to be interested in the problem. About 18 months ago I was given a gentomicin injection but have since been told that this is infact a very outdated treatment and can cause very significant probs as you get older. My new consultant is going to give me a dexamethasone injection on the 8.4.13 but where i was given a general anaesthetic before, he wants me to have a local this time and I admit to being worried about this but think it will be ok. After reading your blog it made me feel better just knowing that other people have the same dificulties and I dont feel quit so isolated, it could have been me i was reading about. Thanks for being so positive about this very debilitating illness

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  3. Bea,

    Have you heard of Dana White, the CEO of UFC who claims he had the orthokine treatment done in Germany and says to be 100% cured of the meniere's he had. I have contacted Dr. Wheling of who is the pioneer of this treatment and it's use to combat pain due to sports injuries and the sort. There office claims that since they do not have double blinded studies that reproduce the effects on Meniere's he cannot yet see patients for simply Meniere's. Dr. Wehling works with doctors here in the US and they offer essentially the same treatment and it's called regenokine therapy. It is cost prohibitive since the procedure is nearly $10,000.00 but as a meniere's sufferer if they could guarantee some results there is no question that I would GLADLY find a way to pay for the treatment. Your thoughts? Have you heard of this?

    Many Regards,

    Diego

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  4. Bea,

    Quiclky and I'm sorry for bothering again. Have you heard of Dr. Burcon of the Burcon institute in Michigan who claims that he has cured 291 of 300 Meniere's patients with chirocpractic procedures? His results are not nearly as high unfortunately with the tinnitus, but these results are impressive. What do you think?

    Diego

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  5. Hi Bea,

    I have just been diagnosed with cochlear hydrops after the same initial experience as you and I've had a lot of trouble finding information on it. If you could point me to some resources or may be connect me with other people you know who have, I would really appreciate it!

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  6. Hi Bea, thank you for this website. Yes, Menieres disease is really debilitating disease and affects all aspect of the suffere's life and the loved once. I also do have it, and was confirmed by ENT that the second ear is affected as well. I have to say my disease started with dental work, just ringing tinnitus. After pregnancy it progressed to hissing tinnitus and vertigo. Another dental works caused the second tinitus in my left ear. There was more issues that time and I could not complain. If I did I found myself in tho position that it is in your head and put yourself together. I do belive this discrimination must be challanged, specially if you know that some health professionals out of the NHS accept this cause of menieres disease and others ignores the cause and do not accept it. From my experience i know that the diagnose and treatment of tinnitus should be taken on the first place seriously. As there is a diffirent causes for tinnitus and loss of body balance and vertigo, people need to find the cause first to find the treatment for the cause of their menieres. Why to priscribe medication for something you do not know what is the cause as they say? At the end you take the medication and still you have symtoms going on, including the hissing tinnitus.The solution could be also high dose low level laser therapy from Dr Wilden in Germany (The DR mooved to Ibiza as far as I know). The laser kills bacteria, virus, renew inner ear cells and works on the tinnitus caused by a noise/trauma. In the case of resistant bacteria, it works on it as well, but you will have site effects as the bacteria release toxins and it has effect on the surroundings area. It will stop the vertigo as well, but only temporary ( if your ears are both affected). To know more please feel free to go to: www.menieresdentistry.co.uk
    I wish you the best Katerina

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  7. I had tinnitus (only) for 15 years before my 1st Meniere's attack. Then the onslaught started culminating in cluster attacks over a 3-day period.

    However, I am cautiously pleased to say that not only have I been M-attack free for 4 weeks now but an unexpected bonus is that my Tinnitus noise level has dropped to (almost) nothing and my hearing in the affected ear (right only) is now at 80-85% of what is, for me, normal.

    My treatment was as follows:

    1] Betahistine 16mg tabs - 4 tablets 3-times a day and 2 tablets at bedtime. (224 mg/day). My GP started me at 16mg 3-times a day which is a sorry joke. France, Germany and other European countries have been prescribing 288mg - 480mg a day with great results and little to none side effects.

    2] Apo-Triazide 50/25mg. (I don't know what 50/25 means but that's what's on the container). A diuretic which removes fluid & salt from your body (i.e.: the fluid in your inner ewar).

    3] Xanax 0.25mg. I had Xanax on hand as I had panic attacks since I was 16. My regular med's have that under control but I could still get too apprehensive over meetings in crowds, dinner out and so on. I started taking Xanax once my Meniere's attack had subsided as it helped to calm me down. Now I believe that the Xanax "may" have played a role in the Tinnitus removal process.

    Finally, all this good news (for me) has only been in effect for a week or so. I understand that the Meniere's, Tinnitus and hearing loss may return at any time, however, I feel prepared knowing that the combination of med's worked once and (I hope) could, or should, work again.

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  8. hi Beatrice, i just found your blog. it has some great information. I am relieved to know that the fog you talked about happens to someone else!!! I just started a blog after 12 years of menieres. there is information on a study going on now if you want to read about it my blog address is http://healthfulmenieres.com/. take a look and tell me what you think. i have only taken different holistic and prescription meds. I have hesitated about steroid injections simply because i dont want to get worse!!!

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  9. Hi all, I've had Meniere's for about 2 years now and went through the process of first feeling like my ear was 'just clogged' then on to pressure on the right side of my head, then on to feeling movement 'like I was on a boat' especially when I laid down, then on to a vertigo attack that lasted 2 days, could not move could not walk and the slightest movement resulted in severe vomiting and I was hospitalized. I've researched, I did 4 months of acupuncture, salt free diet and now also take ativan to give me a few hours a day where I can function as close to normal as it gets; however the worst part of this disease is the lack of knowledge of the medical community and the isolation that comes with Menieres. Some days it seems that life itself ie: engaging in conversation, noise and lights make my symptoms worse, so that makes me pull back 'just to feel ok'. I've lost most of my hearing on my right side, developed pulsating tinnitus in December and went on to purchase a hearing device with a tinnitus function which does help with the daytime tinnitus but I am extremely frustrated with the lack of medical options know for this disease. So....

    I am American, however I'm in the process of trying to be accepted into a stem cell treatment program in Europe and if I am successful in getting in, and receiving treatment I will pass along (hopefully) any progress that waits in the future. Wishing us all a cure. JT

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    1. Hello, I live in Europe and I was diagnosed Meniere 7 years ago. I recognize myself in each single word you say about this disease. How did you get through with the stem cell treatment program? Could you tell me about your experience with this new treatment? Are you going better? Best wishes, MC

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    2. Steam cell? Could you please share your experience. I am trying acupuncture now, along iwht dietary changes of salt less than 1500g a day, gluten free diet, very little to no refine sugar. If you have had the steam cell treatment, my hope is hat you recover well.

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  10. I am wondering if you come across people that have vertigo balance loss and tinnitus but no hearing loss. I don't have a Menieres diagnosis because of no hearing loss. I do have bilateral hypofunction shown on ENG, abnormal Vemp testing. I have not run into people with my testing results and no hearing loss. I had cat scan looking for SCD but that was normal. I wonder if antivirals would help me too.

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  11. Dear Beatrice
    Thank you so much for sharing all this very helpful information. It means a lot for all people affected with MD.
    I am suffering a low frequency hearing loss but no vertigo. The doctors cannot yet say whether it is MD or not. I have had a steroid injection in my ear today and your account of the process helped me go though this. Thank you. It was actually not painful and I am glad I have done it. I hope it will restore some of my hearing. I know you have stated that aural fulness is not the most debilitating factor in the disease but with me its constant for weeks/months now and I wonder whether this will ever go away. I would be grateful for your or anyone's else experience about continuous aural fulness and how to deal with it. Many thanks.

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  12. Hello Bea

    This is my first time on a blog. But I had my first episode April 2014. In May I went to the ENT dr. had a few test done (hearing test, and ECoG) I have mild hearing loss in the left ear. The symptoms that took me there was aural fullness, buzzing in the ear, and obvious hearing loss in the left ear, DR also saw some fluid in ear. Prior to me seeing the ENT the above symptoms took me to the ER I was given steroids for 5 day fullness went away but there was still a low frequency buzzing in ear.
    The ENT DR diagnosed me with early MD. Since April I have been to the ER 3 times with aural fullness and treated with steroids. Are there any trial or studies been done regarding this disease, I do not want to be put on steroids long term. Apart from changing our diets is there anything suffers can do to slow down the disease process or minimize the symptoms. I know its been a short time since I was diagnosed but my head is reeling, from knowing that there is no treatment for MD to stop the progression. I am thankful for not having any vertigo or nausea. Thanks for your blog and would be grateful for any advice on how to deal with this going forward. Thanks

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  13. I have been dealing with this monster for 3 years. Medical management has failed. Sac decomp. surgery has failed. Still have vertigo. Next step vestibular nerve section. I really don't want to do this, but I can't live with vertigo and puking and not knowing when it will strike. I will keep you posted.

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    1. I recently was diagnosed with cochlear hydrous. Someone recommended the clinic House. Has anyone tried this clinic. It sounds like this clinic only specialty is the ear. There are neurotologists, ENT, otologist allergist, audiologists and otologist/neurologist surgeons. Some of them have done some research with Menieir's. Also does anyone wear a hearing aid? Has it been helpful?

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    2. The House Ear Clinic in LA, is one of the best otology places on the planet. I was diagnosed with Meniere's eventually, after going through all of the symptoms discussed on this blog. I have been to House, they are very good.

      On another matter, there seems to be a growing body of evidence that CSF leaks, specifically those related to Superior Canal Dehiscence (SCD) could be playing a significant role in Meniere's.

      I recently (within the last week) experienced a prolonged period of oscillopsia, followed by sudden hearing loss in my remaining good ear. I just had the first intratympanic steriod injection this morning (on Oral Prednisone). On my way to see Dr. Schievink (Cedars-Sinai, LA) about helping to diagnose any CSF/SCD problems. Fly down tomorrow (from SF Bay area).

      A note to anyone new to his business. Any sudden hearing loss needs to be treated as a medical emergency, go to your nearest ER and demand high-dose oral Prednisone treatments, followed by intratympanic injectiosn. Most ENTs, particulary the older ones, one know anything about this. Be insistent.

      Cheers and good luck,
      Mark

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