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My meniere story

Discussion in 'Your Living Room' started by Punture, Sep 4, 2021.

  1. Punture

    Punture New Member

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    Sep 4, 2021
    Hi everyone,

    I hope it is okay to share/vent my story here. I just had alot on my chest recently. If it is not, please delete.

    I was diagnosed with Meniere’s 6 years ago when I was 25. At the time I was a medical student. I woke up with a sudden vigorous vertigo that we are all familiar with. I was so miserable at the time having to go through 24 hour call shifts and studying for exams with the symptoms - somehow I powered through. At the time, I did 60mg prednisone taper. That was also when Dr. Gracek’s paper on AV was published. Luckily my ENT agreed to prescribe me the AV after showing him the study. I also remember finding the older version of this forum where I learned about JOH. Although I always take claims of benefit with a grain of salt, I had nothing to lose so I started taking them too. His manuscript made sense to me since if I was subscribing to the viral theory of Meniere’s. I remember that as soon as I started taking the AV my vertigo attacks stopped. However, I was left with imbalance, tinnitus and hearing loss. Fortunately, those things subsided to a manageable level in about a year.

    For the next 6 years I was left with mild hearing loss and tinnitus but no other symptoms. I became careless - stopped AV, JOH. Started drinking more coffee, alcohol, salt.

    Then it all came back this July/August. Looking back, it was the perfect storm - heavy alcohol, thunderstorm, high salt intake and possibly barotrauma from going to an amusement park few days before. I woke up with that dreaded ear fullness, hearing loss that I knew would progress to vertigo attack. Since then, it has been the same constant cycle. My quality of life immediately went to 0.

    I did the prednisone taper again and immediately started on AV and JOH. However, vertigo attacks didn’t stop like last time. I met with my ENT who recommended intratympanic steroids. I took 2 injections so far. It seems that the symptoms get worse for the first few days after the injection and improve later on. But I feel it is a bit early to tell.

    At this point I am scared for my future. What if despite all the treatment and supplements it will not resolve this time? This time things are different. Now I have a career and a family that would feel the impact.

    I constantly look through this forum, reddit, and Facebook for any new information.

    I also did a deep medical literature review but nothing much has changed in this field. Only thing significant since 2015 was a recent treatment consensus guideline which gave a favourable view to IT steroid injection.

    I can already tell the onset of anxiety and depression. Only thing left is to pray…
     
    • Like Like x 1
  2. IvanNew

    IvanNew Member

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    JOH and AV can take months to take effect, you say so yourself when you indicate that it took a year to alleviate the rest of the symptoms.

    I can understand that you stop the antivirals when you get better, but I don't know why you stopped taking lysine. In any case, if it worked 6 years ago it will work again now, just insist and prepare for several months being wrong.

    Salt, alcohol, etc. They have nothing to do with Meniere, many people say that they are his triggers and it may be like that in specific cases, but they are not something common and majority, and they have not been triggers in your case because you were well drinking salt and alcohol for years, yes your Meniere happened because of this you would not have been well for years.

    When people get dizzy they tend to look for an explanation of what made those days that caused the dizziness. Then you will find several who claim to have eaten salty or have had some alcohol and conclude that this has to be the cause, but the reality is that 99% of humans eat salty or drink alcohol from time to time so anything that they happen will have this in common. For example, almost certainly 99% of income from covid was people who ate salty or drank alcohol in recent weeks.

    You are a doctor so you will have more access to the databases of medical publications, trace all the studies that were done to show that taking salt could make Meniere worse, you will see that none of them managed to prove it but the opposite. I would even say that there are people who are getting dizzy thinking that it is because of Meniere when in reality it is that they have low blood pressure or that they do not take the necessary sodium per day.

    About alcohol I found a publication two years ago about two groups of Meniere's patients, one of people who did not consume alcohol and the other who did so frequently, the final results were that those who consumed alcohol had taken an average of 7 years longer to develop your symptoms than those that don't.

    I do believe that stress is something that most of the Meniere sufferers have in common, almost everyone when recounting their lives agrees that before they started having Meniere they had been living for years under a lot of stress, sleeping little and badly, etc. . Almost always for work or studies. I was under a lot of stress due to my university career, not finding a job and even in my leisure moments playing online video games I spent a year with strong discussions and problems with the people I played with at that time. So I was for 2-3 years before my Meniere in a 24/7 cycle of constant stress. It would be good to look for studies on cortisol levels in Meniere's sufferers and their improvement by taking cortisol-lowering medications (if they exist).

    In any case, give JOH and VA 6-7 months and try to relax and not be stressed.
     
    • Like Like x 2
  3. John of Ohio

    John of Ohio Active Member

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    I would also suggest that you consider taking about 7000IU of vitamin D-3 each day, 5000 in the morning, and 2000 just before going to bed. As medical person, you are aware of the immune system's support by sufficient vitamin D.

    But also take two vitamin D cofactors, a bioavailable magnesium, and a vitamin K supplement, with vitamin K-2 of the enaquinone-7 form. This K-2 keeps calcium out of arteries, etc; properly partitions Ca ions in the body.

    Vitamin D does not function well without adequate magnesium; at least 400mg per day.

    Here's the K-2 I take:
    Vitacost Vitamin K2 MK-7 with Nattokinase -- 100 mcg - 200 Softgels - Vitacost

    These are the D-3's I take (total 7000IU each day):
    NOW Vitamin D-3 -- 1000 IU - 360 Softgels - Vitacost
    Vitacost Vitamin D3 Mini Gels -- 5000 IU - 365 Softgels - Vitacost

    This is the magnesium I take:
    Kal Magnesium Glycinate -- 400 mg - 180 Tablets - Vitacost

    All of this profoundly supports the immune system, enabling it to suppress herpes virus replication and consequent inflammation.

    But continue with the lysine, too; being sure to take it at least 20min before a meal, or 2hrs after a meal.

    --John of Ohio
     
    • Like Like x 3
  4. Punture

    Punture New Member

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    Sep 4, 2021
    Thanks for the suggestions.

    I am going to keep taking AV and JOH regardless. Just a bit discouraged this time.

    Regards to the potential triggers, there are so many mixed data that general rule of thumb seems to be “avoid it if it has any chance of being a trigger”. At this point, I just want things to stop so I will avoid anything that I feel could be the cause. But you are right that probably most of those things are not a true trigger. It’s just difficult to tease them apart.
     
  5. Punture

    Punture New Member

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    Sep 4, 2021
    Hi John,

    Thanks so much for the reply.

    I am taking 2500IU of vitamin D but may bump it up as you suggested.
    Unfortunately, I get diarrhea with magnesium so I had to stop that.

    I will look into Vitamin K-2 as I haven’t heard of that much.

    I am also taking vitamin b complex, omega-3, and olive leaf extract in addition to your regimen.
     
  6. arcticblueice

    arcticblueice New Member

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    Hey Punture, I have bilateral MD and have been using the JOH regimen for 4 years and 24mg betahistine every 8 hours. Betahistine may provide you with relief in 2-3 weeks or less while you are waiting for the JOH regimen and the AV to kick in. The results are mixed but it may be worth considering. All the best -
     
  7. John of Ohio

    John of Ohio Active Member

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    Magnesium oxide, and some others, can cause diarrhea. I have that same problem. The magnesium I take, magnesium glycinate, reduces the problem. I also split a tablet in half, and take them at different times, reducing the at-once magnesium loading.
    --John of Ohio
     
  8. Rubygirl

    Rubygirl Member

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    I am 100% behind everything JOH advises. In addition, take a keen look at your diet but from the perspective of a) keeping high arginine foods out of it and b) removing foods you are allergic/sensitive to.

    Foods that are high in arginine and low in lysine (most notably nuts and many grains) can "feed" viruses like the ones we are trying to suppress like Herpes, EBV, etc. This includes most of the "milk alternatives" like almond milk, oat milk, etc. Pull up a handy chart on the arginine/lysine ratio of foods and focus on those that are 1:1 or low in arginine.

    Then I found it very helpful to do an IgG allergy test (blood) such as the one offered by Genova Diagnostics (Allergix IgG4 Food Antibodies). I have found it very accurate and I figure that anything that causes my immune system to react is going to impair it overall, especially if I am eating these foods day in and day out... and that can only either allow viruses to flourish or cause allergy symptoms that then cause MD, etc.
    And definitely get on a really good multivitamin. Look for one that has methylated B vitamins like methylcobalamin (B12) instead of cyanocobalamin. The better quality ones have that.... and you are looking for about 50mg of B6 for example.

    Good luck!
     
  9. Punture

    Punture New Member

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    Sep 4, 2021
    Update to my situation.

    Currently on Valacyclovir and JOH regimen. Did 3/5 IT steroid injection.

    I think there has been gradual improvement although difficult to be certain due to fluctuating nature of the disease.

    Interestingly, the symptoms always get aggravated right after I get the steroid injection but after I recover from it, I feel my baseline symptoms have improved. When I told my ENT this, he said he was kind of hoping the steroid will make me feel better immediately but I will take what I have right now.

    Of course I don’t want to be certain of anything until I get at least a good stretch of reduced symptoms.

    I still feel my ear getting a bit plugged up after I sleep. It get plugged up pretty quickly. I went to sleep at around 10 with no fullness and I woke up at 2 am with some. I haven’t really figured out anything that helps with this. Tried mouth guard, drinking lots of water, etc. Maybe viral particle or whatever is causing MM accumulates when you sleep and not mobile.

    Thanks for listening to my story. I am trying to keep my hopes up and trying to live my life.
     
  10. wendy

    wendy Member

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    May 18, 2019
    The lemon bioflavonoids in JOH regimen seems to reduce my fullness.
     
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  11. Punture

    Punture New Member

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    Sep 4, 2021
    Update with my 4/5 intratympanic steroid injection. Everytime I get the injection, my ear responds differently. This time my hearing went down significantly but interestingly it is not associated with aural fullness. It just feels like I went more deaf in the ear. Interestingly my imbalance has improved (I always noticed an inverse relationship with my hearing). No vertigo attack so far, but I usually do get one after the shot.

    I am a bit scared because my hearing has never went down like this after previous shots… makes me wonder if my ear drum got damaged or something.

    Hopefully this clears up….
     

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