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To All the Recent Newbies (July 2021)

Discussion in 'Your Living Room' started by Donamo, Jul 11, 2021.

  1. Donamo

    Donamo Active Member

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    There seems to be a lot of people recently diagnosed here and confused.

    Here are my suggestions:

    I doubt you will find a cure but if you have patience and keep trying, you may very well find a treatment that gets you to a comfortable remission.

    The first thing I did was to give up on doctors.

    Then I tried the MEGA Vitamin C thing, where you take so much vitamin C you get diarrhea and then back off a bit. It is not comfortable, very gassy, but damned if it didn't work! It gave me hope that maybe I could fix this myself, maybe I had a life.

    Next I tried the JOH suggestions of many supplements, it helped but didn't get me to a good spot.

    Next I read the "Heal Your Headache" book - That helped a lot! And I still follow that diet somewhat. It's a very good book.

    I also tried a very expensive treatment from a lawyer in Australia (desperate people do desperate things) - it was a waste of money and time.

    Somewhere in there I managed to source AntiVirals (Famvir mostly) and they, along with Heal Your Headache suggestions have given me back my life. I still take a maintenace dose and increase it if things get out of wack.

    So, there is hope.

    Currently I have tinnitus of fluctuating intensity. Today I have reasonable hearing in my bad ear, last week I had no hearing. I'm not sure what exactly caused the bad hearing week but it improved. This happens from time to time. 80% of the time, my hearing is at about 50% of good, never better, sometimes worse.

    One bad trigger for me is a certain type of stress which, when combined with careless eating and shortage of AVs can cause me grief but so far I've always been able to get back to "normal".

    So, my point is, do not despair. There are many things that you can do, starting today, to fix yourself. Oh, and as June says, keep a journal. It is amazing how quickly you forget little things that could be very important in your quest.

    Good luck to you!
     
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  2. Bulldogs

    Bulldogs Well-Known Member

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    Hey Don

    Sounds like your doing great.
    How’s that golf game my friend?
    How about Phil winning the PGA….what a great watch.
     
  3. Corn

    Corn New Member

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    Thanks Donamo for advice. I just got “diagnosed “ with meneries . I was a healthy person up till April 2021. Had no symptoms until then because of ear fullness and noise sensitivity. But my theory is that ENTs just group it all into that main meneries disease . And then you google it and become really scared and frantic because you figure there is no hope anymore. I’m slowly getting the handle on it. I have no dizziness or nausea just hearing issues and pressure in left ear.
     
  4. Donamo

    Donamo Active Member

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    Hi Buddy - Golf game doing pretty good! Got a hole in one and broke 80 for the first time 2 weeks ago. The game after my 79 was a freaking nightmare in the high nineties LOL. What a stupid game :)
     
  5. Donamo

    Donamo Active Member

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    My advice is to get right at it with diet etc. Try to stop it before the damage occurs.
     
  6. jaypr

    jaypr Member

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    You are right to give up on doctors when you have an illness that is idiopathic. We know more about our own illnesses than the majority of specialists, so little point in consulting them. You will only end up extremely frustrated. I have had and still have some idiopathic conditions like D.I.S.H. , chronic fatigue and stomach troubles. Best to work them out for yourself through trial and error to get some control over the symptoms. A lot of specialists annoy me, not because they don't know what they are talking about but because they pretend to know what they are talking about and worse still they try to belittle you at the same time
     
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  7. Donamo

    Donamo Active Member

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    Hi Jaypr! Good to "see" you. Jaypr is another longtime member here that has learned to manage his issues on his own. I'm pretty sure it was Jaypr that introduced me to the Heal Your Headache book for which I am forever grateful! Here's a virtual "man hug" :)
     
  8. Onedayatatime

    Onedayatatime Active Member

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    Glad ur in a good spot Donamo. Lord knows I’ve bemoaned my share of ENT’s on this forum. However, it was my Oto/neuro that i did a surgical consult with who turned my sitch around. After a VNG, he pushed to treat for MAV against one very pissed off vertigo tripping cowboy. Very blunt and direct, he made my vertigo go away. Not all are idiots. I do beleive ent’s are not qualified to treat or diagnose MD. Best to you and yours.
     
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  9. Bahamasoutloud

    Bahamasoutloud New Member

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    Just diagnosed a couple of weeks ago so I am trying to figure everything out. I'm curious if you have ever had cognitive issues when your tinnitus kicks in? Or any other time for that matter related to the Meniere's?
     
  10. Bahamasoutloud

    Bahamasoutloud New Member

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    Is the Heal your Headache suggestions for the tinnitus?
     
  11. Donamo

    Donamo Active Member

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    Yes for cognitive issues - we call it Brain Fog - it's very similar to how your brain feels when you have done something physical to the point of utter exhaustion. Dull, hard to focus. I've always thought of it as brain exhaustion due to trying to interpret conflicting or at least confusing signals from each ear. I still do get the occasional day of brain fog. I find physical activity, like walking, helps diminish it.

    As for the book and tinnitus - not so much. Tinnitus seems to have a life of its own and many people can "fix" the vertigo but the tinnitus lives on. Once you've experienced a couple of years of vertigo attacks, the importance of tinnitus is greatly diminished. :) I just live with it
     
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  12. Pa Cowboy

    Pa Cowboy Member

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    When I was bad my Brain Fog was absolutely brutal, had trouble stringing sentences together and would lose track of what I had just said. Thank God that disappeared when I got better. The tinnitus is greatly reduced but continues on to this day.
     
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  13. IvanNew

    IvanNew Member

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    My brain fog was also three or four months in which I would not stop having severe dizziness and headaches. After two months I thought that it would never get better and I thought about taking my life by taking the whole box of sulpiride. Now it may sound exaggerated, but dealing with the appearance of this disease three weeks before the Covid arrived and the entire closure of my country was quite hard.
     
  14. Onedayatatime

    Onedayatatime Active Member

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    The Heal your headache book is examine the role migraine activity plays in our vertigo attacks. The day my neuro/oto dr. Started treating me for migraines, my vertigo went away. Been two years approx. in my case, i have been diagnosed with MAV, MD and they found a large pituitary tumor when they did an mri. It can get complicated when you start digging. I am thankful for each non-vertigo day.
     
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  15. Donamo

    Donamo Active Member

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    Yes Ivan, it can definitely make you consider ALL options. I am having a light headed, off balance "Menieresy Day" today which is very annoying. No cause that I can think of but there it is. FXXK OFF MD

    I will up my intake of Lysine and AVs and hope it passes. I still played golf :)
     
  16. Donamo

    Donamo Active Member

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    More on Brain Fog:
    A friend of mine suffered quite a bit with Brain Fog after his 2nd Moderna shot so I Googled it in relation to the vaccine and found an excellent research paper (which I can no longer find :mad:). I will try to describe what I understood from the article. The Brain Fog side effect is known and often shows up a couple of weeks after the shot. The researchers did all sorts of brain scans and MRIs, the works, and found nothing that would link to the Brain Fog.

    Then they examined the fluid surrounding the brain and found a very high concentration of cytokines, which you can read about but they are essentially first response immune system proteins and trigger inflammation. The researchers were surprised to find these cytokines in the fluid because they thought the membrane that protects the brain from undesirables would have kept them on the other side.

    So, my take on this as it relates both to Meniere's and Covid is that the immune systems cytokine response to a virus can cause brain pressure/inflammation which we feel as brain fog. Maybe when the virus is more active, replicating, the cytokine response ramps up, sometimes causing ear fullness and brain fog, both for MD and Covid and maybe other viruses as well?
     
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  17. Bahamasoutloud

    Bahamasoutloud New Member

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    What are your thoughts or have you found any information pointing to COVID as the main culprit for newly diagnosed Meniere's? AND, what are your thoughts on getting the vaccine? I had COVID in November and was dx this June. Franky, I'm scared to death to put any more stress on my body at this point with a vaccine. Thanks in advance
     
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  18. Donamo

    Donamo Active Member

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    Well, I had both shots and it had no effect on my Meniere's but I did feel quite wiped out by the 2nd shot. If you are absolutely sure you had Covid then you at least have some immunity. It's a tough call for you, I'd say. It depends on your living surroundings, i.e. are you out in public a lot, are you in an area where 80% of the people are vaccinated, do you have loved ones at risk if you were to give it to them.

    From what I have seen, on this forum, the shot does not seem to affect the MD, they seem to be quite separate. That's my take anyway.
     
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  19. NLS

    NLS New Member

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    Just my personal observation on my Brain Fog is that taking a walk definitely lessens it. Maybe physical activity helps to 'reactivate the brain' or something like that. Give it a try.
     
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  20. Donamo

    Donamo Active Member

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    Yes, I absolutely agree. It may not be what you feel like doing, but for me, it helps.
     
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