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My meniere story

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

  1. Punture

    Punture Member

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    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 Active 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 Member

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    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 Member

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    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 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 Member

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    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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    The lemon bioflavonoids in JOH regimen seems to reduce my fullness.
     
    • Like Like x 1
  11. Punture

    Punture 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….
     
  12. Punture

    Punture Member

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    Sep 4, 2021
    Sorry for the double post but I didn’t see an option to edit my original post.

    Received 5/5 IT steroid shots. I was fine the day of but developed fullness the day after. It resolved with mild vertigo that lasted about an hour. Afterwards, my hearing fluctuation is minimal. I don’t really get too much aural fullness but I did develop this lower frequency tinnitus (which is new) in the background of high frequency tinnitus (which I am used to). I am not too sure what the significance of this is yet. Could it be just another form of fullness?

    The biggest problem for me is the chronic imbalance and brain fog. I sometimes get slightly better days but usually this is lingering.

    Yesterday I tried going swimming for the first time in a year. This is something I did to keep my health up after last flare up of Meniere’s 6 years ago. I kept it up for 5 years until COVID started and stopped for a year now. My body right now is so weak because I couldn’t really eat well. I felt very tired the day after I swam.

    I am very scared that I am nearing my limit. That I have to quit my job… That might be good to be able to focus on recovery but what if the recovery never happens? Then what… I am feeling more depressed and anxious each week.

    My ENT prescribed Serc to me after I kept asking if I can take anything. He seemed to be not that eager to give it to me. I filled it but haven’t taken it yet. Randomized trial studies don’t seem to show good effect. I am not sure if I should take it.

    I am now constantly tired and exhausted of this. Thank you for hearing my rant. I just need to get this off chest.

    Most people on the forum and facebook groups are ones with chronic symptoms. It makes it seem biased that this diseases never gets better. But what happened to all the other people who are no longer active? Are they no longer symptomatic and moved on? Did they do definite surgery? Did they unfortunately succumb to the disease?
     
  13. Union Man

    Union Man New Member

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    I have not found caffeine to be a trigger for me. In fact, I find that when I go through withdrawal (get off my morning coffee schedule) I am more likely to have an attack.

    I'm still feeling out alcohol as a trigger, past few attacks were preceded by 1 or 2 beers the evening before.

    Not convinced about salt either, don't see a pattern there for me.
     
  14. Punture

    Punture Member

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    I agree with you about Caffeine. Although I am too scared to start right now, I remember drinking it in the morning actually helped me focus and think less of the dizziness.

    also, during the remission, I would routinely eat high sodium diet and no affect on my ear.

    however, I feel heavy alcohol is definitely a trigger. So far, I had 3 long streak of meniere attacks (current one being my third). 2 out of 3 times, it was the day after I binge drinked heavy alcohol without hydrating myself. The other time was when I was sleep deprived.

    i guess everyone is different
     
  15. John R

    John R New Member

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    Oct 5, 2021
    Puncture,

    Can you tell if the IT steroid injections have worked for you at this point?
     
  16. Punture

    Punture Member

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    At this point I would like to say I got some benefit out of it. My vertigo, fullness, hearing fluctuation are milder and less frequent. However, I am still having 24/7 background imbalance/trouble concentrating.
     
  17. John R

    John R New Member

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    Thank you, Puncture. I think it's good to know that IT steroid injections are an option that's available and might provide some relief.

    I hope your background imbalance/trouble concentrating issues improve soon.
     
  18. Punture

    Punture Member

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    Thanks John.
    At this point I am trying to do everything that I can to get back on my feet.

    Hope you are doing well.
     
  19. Blakeh

    Blakeh Active Member

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    Thanks for sharing. I’ve had Menieres for 8 years. I have tried just about every treatment. Unfortunately I saved the most effective treatment until last.

    I had a labyrinthectomy
    2 months ago and have my life back. I could not be happier. My point is, there are solutions available. I only wish I would of gotten a labyrinthectomy 8 years ago. I would of saved myself alot of suffering.

    There is hope. Myself and many others on this site have gotten there life back and you can to!
     
    • Agree Agree x 1
  20. Punture

    Punture Member

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    Thanks Blakeh.
    I read your post and your journey is truly amazing. I don’t think I am ready for a labyrintectomy yet as I feel I still have fair bit of hearing left. But it is good to hear that at least there is a definitive solution if I am willing to give up my hearing.

    one question I have is before the surgery, did you have background imbalance and brain fog? If so, did they go away after the surgery?
     

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