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Newly diagnosed and interested in all advice

Discussion in 'Your Living Room' started by Jeana, Apr 28, 2022.

  1. Jeana

    Jeana New Member

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    Apr 28, 2022
    Hi all!
    I am a 44 year old divorced female who was just diagnosed last week. If it wasn’t for my boss’s friend going through this recently, I still would not have a diagnosis.
    I have been having dizzy and nausea episodes for about 2 years or so, then headaches on a daily basis since last summer. Unfortunately the timing of symptoms did not help pinpoint the diagnosis because of three things:
    1. I started a protective order/divorce from my abusive ex last June.
    2. They found black mold in my home last August which took 6 months and three full kitchen tear outs to complete.
    3. I have a long history of horrible anxiety.
    So, long story short- they initially thought it was anxiety, then stress from working four jobs, then ptsd, then mold exposure, then migraines, then persistent postural perception dizziness. When my amazing boss cared enough to ask me about my symptoms, she immediately recommended I speak with her friend in another state who had similar symptoms for years. The moment I spoke with her- I knew for sure the diagnosis was correct.

    Currently I am experiencing the following symptoms:
    Dizziness- occasionally it is as if my surroundings are being pulled away from me, but 95% of the time the room is just spiraling. Closing my eyes seems to make it worse, so I try to focus on one item without moving. My adult son who moved in with me last year was sweet and put a mural on my ceiling with lights and clouds to focus on. I’ve had really bad episodes where I couldn’t sit or stand and was rushed by ambulance, bad episodes where I have to just lay down until it goes away, and now I seem to have mild dizziness most of the time where I am expecting the bad episodes to start.
    Headaches- mostly controlled by amitryptaline but the dosage keeps being increased to compensate.
    Nausea- obviously associated with the dizziness.
    Ringing in ears- initially was a whooshing sound, then it progressed quickly to various sounds. (Humming, ringing, hearing things, and the worst was sons of a pinball machine next to my head)
    Numbness/tingling in left ear- very hard to explain… feels partially like it’s numb, partially like long loose hairs tickling inside of ear, mostly constant.
    Unable to focus- it usually feels the worst during and about 24 hours after bad dizzy episode. Had just feels weird, slight spinning sensation, just confused.

    I’m fortunate to work from home and only drive once a week for about an hour, but I’m now getting very concerned about driving at all.

    Any advice, tips, experience is much appreciated! Still trying to understand and figure this all out. The more information I have, the less anxiety I have which seems to help decrease the bad episodes.
     
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  2. yellowboy

    yellowboy Member

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    The main thing you need to do first is get your vertigo under control , you need to see a doctor who is familiar with Menieres, not just any MD. For me Betahistine stopped the vertigo almost completely. I am now 2 1/2 years out from diagnosis and considering a cochlear implant.
     
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  3. Lilja

    Lilja New Member

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    3 times 48 mg is what I get.
    Best wishes Lilja
     
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  4. JonBubo

    JonBubo Active Member

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    welcome.

    you are not alone with a mold exposure infection. DNA research has shown form 2000 samples of Meniere's patients that 70% previously had a mold infection. Most don't even get it cleared!

    I have an anti-mold treatment protocol that works great. just takes time. Propolis is the heavy hitter and its good for you.
    also, as we say all the time...have you started on a broad based antiviral treatment yet?
    good news is that the propolis plus is complimentary to an antiviral effort but you need more than that for sure.

    GL!
     
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  5. Jeana

    Jeana New Member

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    Apr 28, 2022
    Thank you! I’m definitely going to look into this treatment!
     
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  6. Kevinb003

    Kevinb003 Active Member

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    Sorry to learn you are going through all of this! Research this site for antiviral methods. Dr prescribed (acyclovir) as well as over the counter methods like JoH can be a big help, especially when combined. Best of luck and I hope you find some relief soon!
     
  7. JonBubo

    JonBubo Active Member

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    you got it.

    best way...
    propolis ---- activated charcoal--- and then probiotics...repeat daily for a month.
    antivirals can be done on your own and with a dr. you dont need it but it helps to have acyclovir. feel free to reach out to me direct.

    all the best.
     
  8. Mike B

    Mike B Member

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    Jeana..no disrespect to the posters above, but any medical treatment advice you
    get on a forum is generally only worth what you pay for it.

    Have you seen a Neurotologist? If not, that would be the very next step.
    Have you had a brain cat scan? Besides Meniere's, there are other medical
    issues (as you've noted) that could be the cause. In my thinking, especially
    with the headaches you have, I would want to insure that there was not a
    vestibular tumor or other neurological issue at the root of the problem.

    My two centavos...
     
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  9. yellowboy

    yellowboy Member

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    Jul 11, 2020
    well...like you said ...............
     
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  10. Jeana

    Jeana New Member

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    Apr 28, 2022
    Thank you for your message and advice!
     
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  11. Mike B

    Mike B Member

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    May 26, 2017
    Just to clarify: I wasn't suggesting treatment, but to see a qualified MD who knows what the hell
    they're talking about.
     
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  12. Steven Putnam

    Steven Putnam New Member

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    Ive been diagnosed with Meneiers for about 7 years, I know it's frustrating, and trying things that don't work over and over sucks, but ... keep experimenting what works for some might not work for others. It seems you have to dial in what gives you some relief.

    Im getting good results believe it or not vaping D8/CBD mix and if you can't get D8 in your state definitely try CBD . Trying a tincture today, as it does come back though not as intense and at a different pitch For me though something about inhaling it in my sinuses makes my ears canal click repeatedly you can feel them drain and release pressure. D8 by itself has also seemed to lessen the severity over the last few months. Just added the CBD 2 days ago and the ringing is gone for a longer period of time than Ive noticed in the last 5 years. I fell asleep in a nap immediately it felt so so good. When I woke it was back but a few more tokes calmed it down, again Im gonna try a tincture right where my jaw and left ear meet and see if that helps.

    FWIW my affliction seems to part because of my TMJ, I highly recommend a mouth guard if you do grind your teeth. wearing one seemed to get the ball rolling. Also, think turmeric and magnesium help with inflammation and muscle relaxation too.
     
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  13. JonBubo

    JonBubo Active Member

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    big fan of cbd. much better than advil etc.

    also, like that you are talking about mouthguards. SOO important if you teeth grind. you will never feel completely well and have your symptoms low if you teeth grind or have alignment issues.
    thanks!
     
  14. AnneT

    AnneT Active Member

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    I have Ménière’s for sure. and maybe some Migraine Associated Vertigo.

    I had an MRI to rule out tumours and a VNG test to confirm Ménière’s.

    For my vertigo attacks- get still and quiet, sniff (don’t drink lol!) rubbing alcohol to prevent vomiting, take lots of drugs (Ativan or clonazepam, gravol or meclizine, Advil, Tylenol). I keep some mint leaves and tea handy, and candied ginger.

    I tried soooo many of the medical and alternative medicine options that you’ll see here. It’s worth a try… 80% if Ménière’s can resolve spontaneously. I probably stayed there too long (antivirals, Serc, JOH, ear piercing, diuretics, valproate, acupuncture, nucca chiropractic, vestibular physiotherapy, omg….).

    Eventually I got gentamicin intratympanic injections. They kill my vertigo attacks for about 12-18 months - sweet relief! For some people, that’s the final cure, but you do risk losing more hearing and balance.

    I’m now working on controlling the migraine aspect, and trying to convince my doctor to give me a labyrinthectomy. She’s keener on a nerve section, but I am not.

    I hope you don’t have to do the “full journey”, that you’ll be one of the lucky 80%!!
     
  15. Steven Putnam

    Steven Putnam New Member

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    Ive been fortunate I had my bouts with severe vertigo, in the first couple of years. During one attack while driving, I was extremely fortunate to be able to get over and park safely. My last severe vertigo attack was now over 2 years ago, I literally couldn't even get out of bed and had to vomit on a towel, those episodes wipe me out for hours. Allergies are a definite trigger for me Zyrtec daily helps as part of mine is sinuses and ear canal drainage, blockage infection? Flonase nose spray also helps.

    My situation is also tied to the shingles Herpes Zoster etc. acyclovir helped at first then it became less effective. I do take a lysine supplement and I do seem to do better when I do take it regularly

    Ginger is an absolute must for the nauseous feeling pretty much take it daily and as needed, and I agree that smelling rubbing alcohol helps me too. I also use smelling salts sometimes to help clear my head. I know I must sound like an herbalist mentioning oils and spices etc. but really Im just a guy trying to deal with this and try and continue to try to find something to knock down all these debilitating overt symptoms. FWIW the smell of Rose Geranium oil can sometimes calm me down and knock down the severity of an attack.

    But the ringing, the constant almost never-ending ringing. It's maddening Ive have to have constant white noise in the background.

    It's back this morning so I am trying my CBD tincture and vaping my D8/CBD, after a few minutes the pitch is already softer less piercing. But it is still there.....always. except for a few hours here recently.Frustration


    my doctor definitely thinks my sleep apnea is trigger somehow too
     
  16. JonBubo

    JonBubo Active Member

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    I would recommend changing out your acyclovir for 3 months and starting a stronger antiherpetic and more broad based. can be standardized olive leaf or monolaurin or oregano oil gel caps. you likely developed some viral resistance to the drug. (happens often).
     
  17. Hickspanic

    Hickspanic New Member

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    I was diagnosed with less than a year ago so it is still new to me. Im still experimenting, but in my experience switching to a 95% bland based diet has helped reduce the dizziness/derealization. Also Cannabis has helped tremendously with the retching and nausea. I dropped soda, caffeine, salt, sugar etc. That has helped to lower the severity of symptoms. Hope you find some relief.
     
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