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Living in Japan with Meniere’s

Discussion in 'Your Living Room' started by MikeinJPN, Jul 25, 2021.

  1. MikeinJPN

    MikeinJPN New Member

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    Hello everyone,

    I’m new to this website but not brand new to MD. I am originally from the US but have been living in Japan for the past 6 years. My Japanese is very conversational but I have some trouble understanding everything the ENT is saying.
    Because I am living in a foreign country and have been having problems I am hoping to talk with others that speak English fluently about some of my questions…
    I have been recently diagnosed with MD by 2 different ENT’s in Japan. At first I questioned the diagnosis but now I am just going with the flow. My symptoms seem to fit in line with the disease. I have had the classic ear pressure recently and some tinnitus but the real problem has been vertigo. I have had some major vertigo attacks that last for about 8-10 hours with vomiting. It feels like I’m on one of those things they use to train astonauts. I’ve had two MRI’s that have been normal but my wife got worried during the last attack and called an ambulance….that was an experience for me…
    Before the MD became a real problem for me I struggled with panic attacks. Sometimes I would go for a long time without any panic and sometimes it would hit me and stay with me for months. I’m wondering if years of intense panic caused some problem with my ears???

    For me…the big problem is the recent 24/7 feeling like I’m on a boat or drunk. I get this pressure in my head that started when I was in graduate school about 10 years ago. Sometimes it’s constantly there and sometimes it’s gone…it’s really difficult to describe. It’s not a headache but it’s just a heavy feeling with pressure….it’s difficult to pinpoint a location….but I’ve had that for years and now I get vertigo/dizzy with a water like feeling in my ear(s) I have issues with both ears but the real pressure was my left. Anyway, is this pressure like feeling what people describe as “brain fog?” It definitely 100% makes it difficult to concentrate. I went to a few doctors in the US when I was in school and had a camera shoved up my nose and had MRI but they didn’t find anything. At the time it was my only system…..after a while I started to develop the panic attacks….intense fear for no apparent reason.

    In Japan they give betahistine and diuretics for MD…..also steroids (pill) which I didn’t take. I asked about antifungal or antiviral medication and was basically told absolutely not. Actually Japanese doctors are not used to having patients ask them for medication. It’s a totally different medical system from the US. Some ways better but in many ways way worse.
    I already eat extremely healthy and exercise. After finding this site I am trying the John of Ohio treatment. I’ve been doing that for a week but finding supplements in Japan is difficult. I’m not sure if the betahistine works or not. I’ve been taking it for about a month. I can say stress makes these symptoms a lot worse!!!
    Honesty I can live with a few random vertigo attacks but the 24/7 rocking feeling is the worst part for me. It’s a constant reminder of the disease……sitting still is the thing I have trouble with because that’s when I really feel it. If I run or ride my bike I feel normal for the most part. As soon as I’m still I really feel it. I am trying to not dwell on symptoms and to stay positive. I could type forever about my situation. I really appreciate any feedback. This is the first time I’ve been able to talk about this in English!! I’m happy I found this site.

    Any recommendation about the boat rocking feeling would be appreciated….is that real or is it just imagined?? Is it my brain just being hyper sensitive to another attack??

    also is that strange head pressure (difficult to describe) feeling a symptom or MD???

    thanks!!
     
  2. Blakeh

    Blakeh Active Member

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    Sorry to hear what your experiencing.

    The boat rocking is definitely real for me, at times there will be weeks of me feeling dizzy and off balance.

    in my early days of Menieres antivirals worked well and gave me my life back. Now they do not work, so I’m looking at surgery.

    There is a lot of good info on this site,
    and there are ways to find relief, antivirals, jOH regimen, surgeries etc.

    All is not lost, there is hope.
     
    • Like Like x 1
  3. MikeinJPN

    MikeinJPN New Member

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    Thanks for your reply!
    It might be difficult to get antiviral medication from the doctor in Japan… but I’ll try. I’m starting the JOH supplements. I’ve been taking the lysine and lemon bioflavonoids. I have the vinpocetine but haven’t tried it yet. I’ll try that adding that later this week.
    I went and had acupuncture yesterday because my neck has been extremely sore…it actually feels better today. I’m also going to a traditional Chinese medicine doctor to see what they can give me… if anything works I’ll let everyone know what it was they gave me.
    To be honest I’m not sure if my problem is actually MD or migraine. It’s easy to get an appointment at an ENT in Japan but you’re in and out very quickly with only seeing the actual doctor for about 3 minutes. They told me MD based on hearing test and just my description of symptoms. MRI is normal…..
    So I could have MD or maybe migraine even though I don’t get headaches.
    I will post about something that definitely helps with dealing with the stress… the wim hoff method is absolute gold. Cold showers and the breathing method are a game changer. Also magnesium and cbd taken together at night. …..Also exercise. I feel dizzy 24/7 but it’s still important to get out and run or walk. It definitely helps getting the blood moving.
     
  4. Rubygirl

    Rubygirl Member

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    I get the rocking kind of feeling too. When I am having a real attack, it's like being on those brutal twisty turny amusment park rides that are moving in all planes of motion all at once. Or yes, like standing on a canoe in a violent sea being tossed and turned around. With the head pressure and the tinnitus and my hearing in one ear is definitely diminished. Yup, nausea/vomiting and sweating it out like I'm having hot flashes. Ugh.

    And I too have had a lifetime of extreme stress and there is no sign of that letting up.... anxiety is my constant companion..... Not knowing when your next attack will be adds on top of that.

    Anyway, some supplement companies will ship internationally. I am in Canada and get my supplements from Piping Rock, Swanson and Life Extension which are all in the States but ship to other countries.

    Definitely go with the JOH regimen and keep up the Lysine. I have added Fucoidan as another antiviral as well as glutathione as a potent antioxidant which seems to help MD sufferers.

    Are you watching the sodium intake? I noticed that a few of the attacks I had came on after a meal of sushi (dunked in lots of soy sauce which is brutal on the sodium) and keeping your sodium intake under 2000mg/day is key for most people with Meniere's. Asian food is riddled with sodium unfortunately. I still eat sushi from time to time but I will substitute coconut aminos for the soy sauce and use sparingly.

    But go through the forums as there is a lot of good info on here. You are not alone!
     
  5. MikeinJPN

    MikeinJPN New Member

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    I have always been a health nut. I actually tell my wife I’m the most unhealthy healthy person on the planet;)
    I have always exercised and eat extremely healthy. I don’t drink alcohol and stopped drinking caffeine year ago to combat stress. I basically only eat meat, vegetables, some fruit, and a few different sources of complex carbs. I haven’t eaten dairy in a long time as well. If my diet is the issue then I don’t know what to eat…..Maybe if I wasn’t so strict my situation would be a lot worse. My first major vertigo attack was February 2020 and I’ve had maybe 6 in total. They last all day. If they were only a few hours that would be great. I barely made it home with the first one. I had to ride a crowded Tokyo train to get back. I now have a card in my wallet that says my problem written in Japanese so if I can’t get home then I can just pull out the card if I’m stuck laying on the floor somewhere….it’s like the card the joker has in the movie that explains his condition….only mine is written in Japanese.
    I’ve been reading about MAV as well and can convince myself I have that…..actually someone else at my work was also diagnosed with MD…what are the chances. They told me they nothing positive really and honestly their situation didn’t sound like what I have.
    Staying positive and deep breathing really helps.
     
  6. MikeinJPN

    MikeinJPN New Member

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    Quick update. I went to an “eastern” doctor here today. They took some blood and gave me a look over. I got a lot of kampo medicine, which is traditional Chinese medicine. The place was a lot more official then I thought it would be. In Japan you have to get a prescription to get this and I’m not exactly sure what is in it. I’ll let you know if it works. He said it doesn’t seem like I have Ménière’s….we shall see. I asked him if I should continue taking the betahistine and he said no….quickly said no…
     
  7. jose suarez

    jose suarez Member

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    Add chamomille tea to tour diet it will help you keep calm and said bye to tour anxiety. I drink it everyday all day

    and the joh diet use it it help to relief all that symptoms that you describe, this diet , JOH help me a lot
     
  8. MikeinJPN

    MikeinJPN New Member

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    Definitely love chamomile!! I’ve been drinking that and Jasmine tea. My panic and anxiety comes and goes in waves. I think recently I’ve developed a lot of new tools at controlling the anxiety. Deep breathing is a must. Meditation is also vital and staying present in the moment. I have a bad habit of trying to avoid feelings of stress and anxiety. Staying present and just acknowledging the panic and letting it move through your body has been very helpful. I recently read a book called “rewire your anxious brain” by catherine pittman. It was extremely helpful. I highly recommend it to anyone with anxiety issues.
     
  9. PleaseNoDizzy

    PleaseNoDizzy Active Member

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    I dealt with severe Meniere's symptoms for 7 years until I had a labyrinthectomy in 2018. Early on, my Oto-neuro suspected I also had elements of vestibular migraine. Like you, I really didn't have many headaches, migraine or otherwise. Once the definite Meniere's symptoms were erased by the laby (namely, the severe vertigo attacks and ear pressure), it kind of unmasked the migraine side. Admittedly as crappy as that can be, it wasn't as bad as the Meniere's. One of the key features of that side of things is the "on a boat" feeling and constant imbalance. Ironically I did start getting traditional migraine headaches about a year after my surgery. I'm still muddling through treatment for this side of things with a neurologist. I've gotten a lot better with migraine preventative meds, supplements like Mg and B2, and also vestibular therapy. I just wanted to mention that Meniere's and migraine (and specifically, vestibular migraine) can often go hand in hand. Some docs even say it's two sides of the same coin.
     
    • Like Like x 1
  10. MikeinJPN

    MikeinJPN New Member

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    It’s really difficult to understand what I have…considering Ménière’s is overly diagnosed I question the doctor here. I had a few hearing tests and told him my symptoms and that was it….he said Ménière’s. So that’s where I’m at. My hearing was only poor for a few weeks when I had ear pressure and tinnitus but that went away after my last attack. Now I just deal with neck pain and the daily boat rocking feeling.

    the Chinese medicine doctor yesterday took my blood and looked me over….asked about my sleep and looked at my tongue. It was an interesting experience. I was giving a variety of different kampo medication and took them last night (they tasted awesome by the way).
    He said he didn’t think I have Ménière’s (although I’m not sure why he thinks that) and told me to not take the betahistine because I don’t need it..the pharmacist said I can take it if I want to though…. I’m not sure if it’s helping or not.
    After a week of taking this kampo I will go back and talk about my blood work and will maybe be given a new type of kampo medicine.
    I’ll keep you updated about what he says and if the medicine works or not. I have three different kampo. One for the dizziness, one for stress, and another for sleep. I have no idea what is in them but it’s a variety of different things. Like I said, they taste good. One probably has cinnamon or something.
    Mentally I feel better taking this stuff compared to the betahistine, which I felt wasn’t doing anything for me. The kampo would be more comparable to the JOH system perhaps….more natural supplements to bring balance to your body.
    Oh yeah…. I also have some stuff to control my body temperature. I’m always hot but my hands and feet are always cold to the touch. So we shall see how that goes….
    Thanks again for all the replies
     

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