1 year since diagnosis and a lot of hope.... here's what is working for me :)

Discussion in 'Your Living Room' started by FloridaKatie, May 14, 2025.

  1. FloridaKatie

    FloridaKatie New Member

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    I've written my story/history as well as what I believe has helped me. There is so much hope, I have had to make major lifestyle changes, but it is worth it. I hope my story helps someone.

    Last March, around my 43rd birthday, I began experiencing severe random vertigo attacks that caused hours of spinning, vomiting and exhaustion. These attacks happened with no warning, and all I could do was lay down where I was and ride it out. I had been dealing with a feeling of ear fullness for months and so I attributed this to just having a “stuffy ear” after years of general ear problems. My ears always bothered me when flying or diving and I thought maybe a recent flight was the cause. I started doing exercises for BPPV, a condition that many people have where crystals become dislodged in the ear canal and cause dizzy spells. However, nothing helped, and I began experiencing sensitivity to noises that were physically painful (hyperacusis), tinnitus that sounded like a roar in my ear, and severe anxiety over when or if an attack was coming. All these symptoms were “silent” to others, and it felt like I was genuinely going crazy. After a particularly awful attack at work in April, I got in the next day to see the ENT locally. After a few tests including a hearing test, I was told it was very likely I was suffering from Meniere’s disease- a rare and poorly understood illness for which there was no cure and few treatment options.

    I was told to try a low sodium diet and to consider a hearing aid for hearing loss which was irreversible and likely to worsen (my hearing test showed I had lost 60% of my hearing in my left ear). This diagnosis brought me to my knees- I wasn’t sure if I would be able to work, drive, be active, travel, etc. How could I function if I never knew when I would experience an attack? Would I lose my hearing completely? I was terrified and felt frozen. While I remain incredibly thankful that this wasn’t a life-threatening diagnosis, it was one of the more life-altering ones for sure. Online forums of this disease were grim- I read worst case scenarios of severe disability. I immediately started digging deeper online, doing research and finding out everything I could. I found several resources indicating a possible viral link to this disease, and when I questioned my local ENT, I was quickly dismissed and told there was no real evidence to support this. However, I knew in my heart there had to be more to this theory- my regular ear symptoms were noticeably worse after I had COVID. My research led me to doctors at Tampa Bay Balance and Hearing, I called for an appointment and was scheduled out several months. I asked their scheduler to please call me if there was a cancellation and hoped for the best. That afternoon, she called me and asked if I could be there the next morning.

    I flew to Tampa that night, and the next day I walked in their lobby and knew immediately that I was exactly where I was supposed to be. At check in, underneath the name of the office was the verse Rev 2:7 “He who has an ear let him hear what the Spirit says”. My new ENT doctor, Dr. Kyle Allen gave me comfort, hope and a plan that completely changed my outlook. Over the next two months after starting antivirals, I had only two vertigo attacks which were significantly shorter and less intense than the previous ones. I started feeling better and I noticed my hearing seemed to improve. At my July checkup, my hearing had returned to almost normal in my affected ear. During this time, I had only disclosed my illness with my best friends, some family and my co-workers who obviously needed to know what was going on. The love and care I received was amazing. While I have made significant lifestyle changes, have a very strict routine and have adapted a plethora of vitamins and supplements in addition to the antiviral I will likely take for life, there is one piece of this story that I know without a doubt has saved me- the love and grace of JESUS. I was in a place where I felt hopeless, and I found hope in him. I know God did not cause this but used this to get my attention and reminded me that HE has always been there, will ALWAYS BE and that I need only to trust HIM. I am still hardly able to type or even speak this without weeping, because I have never felt what I’ve felt over the last year of my life. It is truly indescribable and that is how I know it is real. I have always been a believer, considered myself a Christian and prayed, but like so many times in life, I prayed only when I needed something.


    Everything has changed completely since this time last year, and what I thought I would never get through I have found the strength and courage to because of Jesus. Each time I feel anxious I am reminded I rest in the hands of the most loving God. There is truth to “the peace that passes all understanding”. While I still have mild symptoms that are sometimes quite inconvenient, I have not had a vertigo attack since June of last year. I do not know what the future holds but I know who holds my future and I am confident I can deal with whatever may come. I no longer live in a constant state of fear; I live my life. However, I do not live a normal life- I live an extraordinary life. I feel like I am awake, I take nothing for granted, I listen to the birds sing every day, the wind blow and I find joy in the smallest of things. I see beauty that takes my breath away daily that I would have taken for granted previously. My husband, my animals and those I love I cherish like never before, and I don’t worry about people or things I cannot control. Nothing about our lives is ordinary when you really appreciate what you have. I hope that by sharing my story I can be of help to someone who may need it and that the love and peace of the most loving God finds its way to your heart through this message. Lysa Terkeurst has a devotional “you’re going to make it” which changed my life forever. I only hope I can give back the love, forgiveness and kindness I’ve been given. Psalm 40:2.

    **UPDATE**- I just returned from a week on St John, USVI where I have traveled for almost 20 years. I had NO issues with the flights, did several freedives with zero problems, hiked difficult and steep trails and snorkeled all day long. I had ZERO symptoms this entire time. You can still live a beautiful life if you have this. I realize I may simply be in a period of remission even though I believe nothing is truly incurable, and it is possible that vertigo, hearing loss, tinnitus could return, but I refuse to live in fear and will continue to do everything I have been given the ability to do as long as I possibly can.

    I adhere to the following:

    Vitamins/Supplements:

    Probiotic

    Vitamin D

    Vitamin E

    COQ10

    Omega 3 DHA

    Multivitamin

    NAC

    Vitamin C

    Niacin 500 (Heliocare Advanced)



    Added after diagnosis:

    Lysine

    Valacyclovir BID (only RX item)

    Vinpocetine

    Alpha Lipoic Acid

    Vitamin B complex (B6 & B12)

    Magnesium

    Garlic softgels



    Powder/Nutritional supplements:

    Gingko Biloba

    Ginger

    Turmeric

    Ashwagandha

    Matcha

    Collagen

    Chlorella

    Powdered beets

    Selenium (1-2 brazil nuts daily)



    Lifestyle:

    64+ oz water daily

    1-2 Cups Dandelion tea daily (natural diuretic)

    Low sodium diet ~1500-2000 MG daily max

    Broccoli sprouts 3-4 times week (potent antioxidant and has proven to attenuate hearing loss in studies)

    Red light therapy 3-4 times week (Lumebox red light)

    Prayer and mindfulness DAILY

    Loop ear plugs on hand always in case loud noises bother me

    Grounding

    Walks in nature 3-4 times week

    **I have been sincerely helped and influenced by many on this forum; I found the Facebook groups to be incredibly depressing and not helpful. Thanks to John of Ohio and his regimen which is also antiviral in nature, as well as the story of Joe Bongiorno, a musician diagnosed almost 20 years ago who took an anti-fungal approach and is still without symptoms to this day. His story is here: Meniere's Disease - a success story and treatment plan - Joe Bongiorno **

    God bless and may you all experience better days ahead.
     
    • Like Like x 2
  2. stemcell 1

    stemcell 1 Member

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    Great story.
    One question. Did you get the SHOT?
    You selection of supplement is almost perfect.
    I would add:
    Sperimine from wheat germ, brown rice or sourgum.
    In creases the life of cells.
    HMB: helps the conversion of fat to muscle including heart.
    PEA: Maintains neurological health.
    Larry
     
  3. FloridaKatie

    FloridaKatie New Member

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    Thank you for the info. I haven't received any vaccinations of any kind since I was 18 years old. (44 yo currently) For my entire adult life I have had only a handful of bad colds and 1-2 bouts with the flu, all of which consistently caused significant ear problems. My ears seem to be vulnerable to these viruses.
     
  4. stemcell 1

    stemcell 1 Member

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    It's not because your ears are specifically subject to viruses. Here is why.
    The pathway for a virus that enters the nasal cavity is: Rest, relax and
    grow a colony. When the colon get large enough it become an irritant. Detected
    by specialized cells that secreat histimine. The histamine is the messenger to other
    cells and your pituitar gland that there has been an invasion. The pituitary react by
    telling the hypothalamus to raise your body temperature. (Another whole story).
    Because your sinuses are near your eustacian tube, A direct connection to your inner
    ear, the histamine will inflame surrounds cells. So it is not the virus per se, that
    is causing the inflamation. That part one.
    Part two is what happens when your immunogloblins ( igG and IgM) bind to the virus.
    The form a complex . This complex is a irritant and the local cells send out the same signal
    as if the cause was live. Histamine. So until you body has cleaned up the debris you nose will run.
    Bottom line, using natual anti inflamatorys throughout the process will help to ameliorate
    your symptoms.
    Note: With viral infections the damge is done by you own body.
    Hope I wasn't too wordy.
     
  5. mountain_man

    mountain_man Member

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    So until you body has cleaned up the debris you nose will run.
    Bottom line, using natual anti inflamatorys throughout the process will help to ameliorate
    your symptoms.

    That's interesting, because my nose is often runny too.

    What do you recommend?
     
  6. stemcell 1

    stemcell 1 Member

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    If one has an illness, the first step to relief is understanding what causes the illness.
    So here is a way to watch your immune system work.
    Take you temperature, infraredis best, a number of times to establish a normal. Around
    97.?F.
    First you need some forign antigen. Meet with friends from out of town, go to an
    indoor theater. The following day, about 24 hrs later you will feel a chill. Maybe only once.
    Take your temperature it will probably be below your normal. Take your temperature about every 15 minutes
    it will climb to about 98.6F. And return to your normal and a bit below then back to your normal.
    What you witnessed was you immune system being temporally being activated. As stage one defense
    which could be cytokines or even IgM.
    At this point there may even be enough stimuli to trigger histamine and you may cough, sneeze of
    have a temporary runny nose.
    If any of these symptoms bother you, take 500 mg L-arginine (amino acid) they will usually stop in
    5-10 minutes.
    For reduction of daily inflammation I suggest Flax seed oil, prime rose oil 2 to1.
    And P.E.A (Palmitoyethanolamide) 600mg x 2 day.
    Any question ask.
     
  7. mountain_man

    mountain_man Member

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    For reduction of daily inflammation I suggest Flax seed oil, prime rose oil 2 to1.
    And P.E.A (Palmitoyethanolamide) 600mg x 2 day.
    Any question ask.[/QUOTE]


    Many thanks for your tips. What do I do with the mixed oils?
     
  8. Mosen

    Mosen New Member

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    Hi FloridaKatie and thank you for sharing your experience. I've had a similar experience and thank to John's regiment, I have gotten amazingly better. I was wondering what dosage of Valacyclovir BID do you take and how often? Can you share any foresight into what you learned out of your from the Tampa Bay clinic that could further help me and others? It would be much appreciated. Thank you




    sss
     
    • Like Like x 1
  9. stemcell 1

    stemcell 1 Member

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    Many thanks for your tips. What do I do with the mixed oils?[/QUOTE]
    Let me preface my reply by saying I am a retired medical researcher.
    I have a lab in my house and I study how to reverse aging.
    My suggestions are based on oral administration of natural amino acids and
    fatty acids. Though we do use oral administration of some, the targeted ones are
    administered transdermally. So my suggestions are based on my understanding
    of the immune system.
    My suggestion of flax seed oil is because of it's fatty acid content and it use for many different
    problems, even spinal disk. Contains: Alpha linolenic acid (ALA),linoleic acid,Oleic, Palmitic acid
    and Stearic acid. Most are directly anti-inflammatory some are metabolized to anti-inflammatory
    product.
    Primrose oil: Linoleic acid and Gamma-Linolenic acid.
    To do a follow up. Use Brave search engine. Enter : effects of ( the fatty acid )
    Another note. To enhanse the effect of the fatty acid take 500mg L-Arginine to
    dilate the small arteries and allow more anti-inflammatory fatty acids to reach their target.
    Take fatty acids, like Calcium , on an empty stomach.
    Hope this helped.
     
    • Fistbump/thanks Fistbump/thanks x 1
  10. FloridaKatie

    FloridaKatie New Member

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    I take 500 MG Valacyclovir twice a day, initially I took it 3 times a day for 2 months. When I go for my follow up appointment in September I am going to inquire if I'll stay on my current dosage long term. The Tampa Bay hearing and balance center actually has a great deal of information on their website. Here is the link:
    Ménière's Disease | Tampa Bay Hearing and Balance Center

    They also did a publication which was very informative:
    Office-based Meniere’s disease management - ScienceDirect

    I am glad to hear you're doing much better. :)
     
  11. stemcell 1

    stemcell 1 Member

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    You had mentioned that you had recurrent herpes. ( what Valacyclovir is for.)
    Recurrent viral infections fall into 2 major groups. Infectious and auto immune.
    With herpes it can be either. Active infections would be with a defect in your immune
    system. In that your body does not have an early recognition system in place.
    Although I dislike AI here is a link that might help.Amino Acids and Herpes. Also, With certain reservations)
    raising your bodty temperature to 37c will help in most infectious situations.
    If, on the otherhand, it is an autoimmune and your body only harbours ithe virus
    when you reinfect, the anti-inflammators are the course of action.
    Glad your doing better.
     
  12. Mosen

    Mosen New Member

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    Thank you for your response and the valuable links you provided. Wish & pray for your continued good health and much joy and happiness.
     
  13. stemcell 1

    stemcell 1 Member

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    And thank you for your links. The rupturing of the membrane answered a question that I had.
    Story: This past summer I began to have the last two symptoms of Meniere's disease.
    Along with tightness in the back of the neck I developed blurred and double vision and
    the vertigo. I could not drive. I used a cream I make on the neck and it helped.
    I research aging and incurable and idiopathic diseases. And I ran across Meniere's disease.
    It matched my symptoms perferctly. My hearing has slowly beed declining over the last
    6 years I have been tracking it. I when to get fitted for hearing aids. The tech placed
    one hearing aid in my left ear, thay was fine. But when she placed the aid in my right ear
    something un expected happened. There was pain and my inner ear began to itch terribly.
    The tech could could not explain it. On the way home I knew was had happened ( though not
    the specifics, Till now. The pain was because something moved. the Itch was because of an allergic reaction..
    The next morning I made one of my transdermal lotions. it has anti-inflammatory fatty acids that are active
    again autoimmune problems. Except this time I added L-arginine to dilate the arteries leadind to the inner
    ear. I applied a few drops to the area of the submaxillary gland and to the biforcation of the caroid.
    Within minues all symptoms were gone.
    Since the I have found that the lotion has a lowering effect on blood pressure And may
    have a beneficial effect on a idiopathic retial disease. It's by the grace of God that I knew what to do.
    I treated the disease as if it was an autoimmune and it responded.
    I know a lot about allergies and immunology. I am allergic to my house.
    Thanks again for the piece of the puzzle.
     
  14. mountain_man

    mountain_man Member

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    Primrose oil: Linoleic acid and Gamma-Linolenic acid.
    To do a follow up. Use Brave search engine. Enter : effects of ( the fatty acid )
    Another note. To enhanse the effect of the fatty acid take 500mg L-Arginine to
    dilate the small arteries and allow more anti-inflammatory fatty acids to reach their target.
    Take fatty acids, like Calcium , on an empty stomach.
    Hope this helped.[/QUOTE]

    Thank you very much for your additions. I have now started with the linseed oil and the PEA. Unfortunately, primrose oil is not so easy to get here. I have also reduced the foods with a lot of histamine. Let's see if anything changes.
    Thanks again for your tip.
     
  15. stemcell 1

    stemcell 1 Member

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    Thank you very much for your additions. I have now started with the linseed oil and the PEA. Unfortunately, primrose oil is not so easy to get here. I have also reduced the foods with a lot of histamine. Let's see if anything changes.
    Thanks again for your tip.[/QUOTE]
    Flax seed oil. Not linseed oil ( unless you want to finish wood.) Super primrose from NOW (1300 mg).
    Search : effects of taurine on BRAVE AI.
    Note to anyone who wonders what I do: I study how to reverse aging. And auto immune disease is part of it.
    Note on L-Arginine: It can be used for quick on set of sneezing, cough or broncial spasm.
    Any questions, ask. At my age knowledge is free.
     
  16. mountain_man

    mountain_man Member

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    Flax seed oil. Not linseed oil ( unless you want to finish wood.) Super primrose from NOW (1300 mg).
    Search : effects of taurine on BRAVE AI.

    Sorry, I meant Flax seed oil.
    Then I will now look where I can buy Super primrose from NOW (1300 mg).
    Thanks again
     
  17. Michael B

    Michael B Member

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    Stemcell 1, so are you recommending this as a daily dose to keep things at bay or when you feel a flair up? Also, is the L-Arginine considered a daily dose or just for flair ups? I am trying to read between the lines on your posts, but I don’t think I fully understood. I figured better to just directly ask instead of just make assumptions. (And if you ask my wife my assumptions are always wrong ). I do greatly appreciate your willingness to share here. This forum is amazing and packed with great stories and info.
     
  18. stemcell 1

    stemcell 1 Member

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    I use it as needed. Arerobic exercise, sneezing fit, coughing spell etc. My wife uses it daily for blood pressure
    control and brocial spasms. It it also a mild diuretic.
    Flax seed and primrose are most effect for interstinal inflammation. I.E. transient diverticulosis.
    P.E.A is a naturally occuring fatty acid who's main job is protecting nerves.
    Here is a AI for L-arginine. I normally don't trust AI, but this is pretty good.

    L-Arginine Effects
    L-arginine is an amino acid that plays a key role in various bodily functions, primarily by serving as a precursor for nitric oxide (NO), a molecule that helps blood vessels relax and improves circulation. This vasodilatory effect is linked to several potential health benefits, including improved blood flow, which may help reduce symptoms of angina, lower blood pressure (particularly in hypertensive adults and pregnant women with gestational hypertension), and improve outcomes in peripheral arterial disease. It is also used to support erectile function by enhancing penile blood flow, and may aid in wound healing, immune function, and muscle recovery due to its role in protein synthesis and hormone secretion. While generally considered safe, potential side effects include gastrointestinal issues like nausea and diarrhea, and it may worsen asthma or trigger herpes outbreaks; it can also interact with medications for blood pressure, diabetes, and erectile dysfunction, so medical consultation is advised before use.
    Larry

    AI-generated answer. Please verify critical facts.
    [​IMG]
    sciencedirect.com
    Anti-aging effects of l-arginine - ScienceDirect

    [​IMG]
    augustahealth.com
    L-arginine – Augusta Health

    [​IMG]
    rxlist.com
    L-arginine: Health Benefits, Side Effects, Uses, Dose & Precautions

    [​IMG]
    verywellhealth.com
    L-Arginine Benefits: Uses, Side Effects, and More

    [​IMG]
    webmd.com
    Arginine (L-arginine): Heart Benefits and Side Effects

    [​IMG]
    dreminozbek.com
    What is L-Arginine and what
     
  19. Michael B

    Michael B Member

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    Stemcell 1, thank you very much for taking the time to clarify this. As I and many are grasping at straws with this diagnosis and symptoms your help is greatly appreciated.
     
  20. arcticblueice

    arcticblueice Member

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    Very inspirational! Praise the Lord

     

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