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Desperate please read

Discussion in 'Your Living Room' started by Lana, Dec 15, 2021.

  1. Lana

    Lana Member

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    Thank you for responding. Can you please let me know who Frank is? I have reviewed all responses and do not see anyone by name Frank.
     
  2. Jimii

    Jimii Member

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    Post #38 was signed Frank.
     
  3. Lana

    Lana Member

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    Thank you
     
  4. Rubygirl

    Rubygirl Member

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    Hi Lana!

    I believe this disease is multifactorial. There is no one cause. It's a culmination of many things that all contribute to overwhelm the body. And that's why there is no "cure" and that's why some things help some people but not all. So you have to take the approach of addressing, at the same time, multiple streams of things that will impair your health at once. For example:
    • Ditch the salt. Read labels and try to keep things around 1500 mgs per day of sodium. Processed foods are the worst and eating out, even if you think it's healthy, is often loaded with sodium so check nutritional information at your restaurants and watch the sodium content.
    • Up the potassium (if your kidneys are healthy) as this balances sodium - read up on potassium rich foods
    • Avoid foods high in arginine (or that don't have a balance between arginine and lysine, ideally 1:1 or more lysine)... this is because many feel that MD has a viral component and arginine feeds viruses. Especially if you are eating a lot of nuts or nut milks....
    • Look into having an IgG antibody food allergy/sensitivity test done. Eating foods that your body is reacting too will mess up your immune system and cause inflammation
    • As a woman of your age - everything goes crazy in the perimenopausal years. Bizarre symptoms emerge. So have your hormones tested, and not only estrogen and progesterone but also testosterone (because this is often a zero when we need some even as a woman!) and thyroid hormone (often hypoactive). Cortisol and DHEA too if you can. Hormones are critical to good health.
    • Follow the John of Ohio regimen (found on these forums)
    • Read up on Candidiasis and see if this rings a bell (if you have taken courses of antibiotics over your lifetime quite possibly... in fact if you get yeast infections from time to time.... it's guaranteed)
    These are some of the main things that I think can help turn things around.

    And yes, we've all been in the same place you are now. We totally understand but there is hope for sure!
     
  5. Bobby Smith

    Bobby Smith New Member

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    So sorry! I worked at a job for 27 years. I was first diagnosed with Meniere's after working there 4 years. I don't know how your job is, but I had to do the Family Medical Leave every so often to keep my job. I thought that was a law. But not sure. People on here have given you good advice. Different things work for different people. My wife finally talked me into putting in for Disability, and I got approved. I'm 61 and I look at it like early retirement. I keep a pillow in all my vehicles and have to pull over sometimes and take an anxiety med and lay still till it goes away. She's still working so I'm on my own during the day. You have to do whatever you gotta do to get through this.
     
  6. Lana

    Lana Member

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    Thank you, Ruby. Appreciate all the details provided and the time you took to respond. I will look into this.
     
  7. Lana

    Lana Member

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    Thank you for responding. I live in the US. At work, I can get a short term leave of 6 weeks (paid 60%) and also up to six months leave (paid up to 60%) and if I don't come back I lose my job. MD is very unpredictable and I can’t take that time with symptoms on and off. The American Disability Act is not protecting people with MD (unless proven as a disability that you can’t work which is almost impossible) and therefore there is no way I am protected at my job. The probability of staying in the same position for another 18 years is almost impossible given the type of industry I work in. I live by myself (have a mortgage and other bills to pay). As long as my parents live I can rely on their support. Once they are gone, I am left on my own which means that I would be on the street one way or the other. The terminal illness diagnosis would have been a mercy in comparison to all of this. Either way, my life is over. I don't want to live just to survive another day. I have talked to the therapist and psychologist. They said a lot of positive things and gave me a prescription for an antidepressant. I am going to stay strong for my parents. Once they are gone there is nothing left for me. I just don't fit into society anymore. A lot of people on this forum took the time to respond to my post. Almost everyone has a partner, family structure and some sort of security. I don't have any of it. After my parents are gone no one would care what happened to me anyway. Maybe I can just freeze to death when I am on the street. I just don't fit into society anymore.
     
  8. LorEst

    LorEst New Member

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    Lana

    This forum is full of wonderful suggestions but it seems to me that the first thing you need to do is change your mindset towards your future. You are the only one that can do that, not a partner, not parents but you. I have had meniere’s for 5 years and yes it sucks but I ski, mountain bike, run and travel. I decided I would figure out a way to live my life. I was just diagnosed with MAV too. I’ve tried diuretics and diet modification. JOH helped a ton so I continued that. I track my symptoms, I wear hearing aides, I’ve tried chiropractic and vestibular therapy. I gave up caffeine and red wine. I started on Effexor which has been shown to calm your vestibular system and decrease anxiety. I use a TENS machine every day. I never leave the house without water and Valium and antivert. I eat throughout the day and never get dehydrated. Doing all this may be placebo but who cares? It makes me feel in control and that decreases my stress/anxiety which are big triggers for me. Your life has changed but that doesn’t mean it’s over. I wish you luck as you navigate this disease!
     
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  9. Lana

    Lana Member

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    Thank you for responding and sharing your story. I understand your point. I don't see how I am going to be able to keep my job or any job with unpredictability of MD in both ears and support myself financially for another 18 years. Literally I have no options left other than living on the street. Not tomorrow but probably in the near future. I worked so hard to be where I am and I am sure like everyone else suffered a lot in life. I don't see how I am going to survive this.
     
  10. Dying Ear

    Dying Ear New Member

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    Hello. I can only report my own findings. Before I get onto that, I selected my name Dying Ear BEFORE I tried some of the solutions on here - I would now choose a different moniker.
    I've had it for around two years and it's caused dizziness, SS deafness and the obvious side effects (mainly depression).
    I'd tried acetozolomide which seemed to help initially but then didn't. It's really important for me to be well too as I'm in my mid-40s, am a musician and am about to become a father.
    About six weeks ago it finally all got on top of me and I decided to move to the John of Ohio regimin - or as near as dammit. The results have been very encouraging.
    I started taking six lipo-flavanoids a day (two morning, mid-afternoon and then just before bed). Then a few days later I upped it to this (per day):
    6 Lipo Flavanoids
    6 slow acting Vit C pills (6,000mg)
    6 L-Lysine
    1 MSM
    1 Ginkgo-Biloba

    My ear feels clearer, though much of the deafness remains, I've had 0 dizzy spells. In fact the ear has remained fairly clear throughout. Incredibly, for the first two weeks, the tinnitus pretty much disappeared (something which hasn't happened for two years).

    I am aware I'm not taking the actual JOH regimin. I plan to switch to this in the next few weeks. I didn't start the regimin properly because I couldn't get hold of the vinpocetine and I'd already bought a bottle of the Lipo Flavanoids. I'm taking what I think are some of the most important elements, especially the Lysine and Vit C.

    Interestingly, I started it just as I'd developed a cold sore. I have suffered with them throughout my life and the JOH theory runs that Meniere's is the cold sore (herpes simplex) virus which has spread to the inner ear.

    The cold sore I had went away - I thought because I had taken the Lysine - but this morning I woke up and there is another cold sore developing on another part of my lip. This is unprecedented - it's always the case that once a cold sore clears up, I don't get one for another year or so; so two in six weeks??!!

    Also, my ear started kind of throbbing occasionally (I can hear my hearbeat in the bad ear) - kind of a mini step backwards.

    Now, I'm sure I read that the problem sometimes gets worse before it gets better. Someone I think theorised that this was the virus going into fight mode because it's under attack. I wonder if this is what is happening with me?

    Anyway, I hope you feel better. My advice - consider the regimin because there are a lot of anecdotal positive stories on here about it. It seems to be working for me - touch wood. Hope you feel better.
     
  11. Lana

    Lana Member

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    Thank you for taking the time to read and respond to my long post.
     
  12. Will S.

    Will S. New Member

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    Sorry to hear about your situation, it is bad but not the end to a successful life
    My Menieres started over 35 years ago, one side only, lived with it best I could but eventually had my sac pierced to drain fluid, works great but hole closes up and high fluid level returns.
    Eventually had a labyrinthectomy, fixed problem but lost hearing in that ear.
    Continued driving my motorcycle so balance works fine with just 1 ear, hearing Ok.
    15 years later second ear started same symptoms, not as bad as before but eventually lost most hearing in that ear as well. Made easy decision to kill that ear as well chemically.
    No hearing and no natural balance. Neither is big problem, received Cochlear implants in both ears can hear better now than since this started. Balance changes over to your eyes can do just about anything but did give up my motorcycle. Cannot walk when in total darkness, flashlight or street lights etc fixes that
    Have not had a balance nor nausea issue for over 10 years, never stopped working, drive car every day, now retired, go to gym 6 days a week, play racketball, pickle ball swim etc.
    This may seem excessive but the alternative of doing just symptom relief is way worse as you know
    Best of luck, glad to answer any questions
     
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  13. Cheryl

    Cheryl Active Member

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    Congratulations on fight through and conquering. I love a story with a happy ending.
     
  14. Woodsrider

    Woodsrider Member

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    Mine started 26 years ago. I’m the same age as you. I’m bilateral and thought all the same thoughts. Was married for 20 years then she walked out on me and my 11 year old about a year ago. No family to lean on sucks. My parents are elderly as well. I had the sac surgery on both ears, which did help. I’m deaf in my left ear and wear cross hearing aids which are great. Most of my problems come from my left ear. Im going to have it chemically taken care of so it will relieve most of my problems. I feel your pain of having to work with this. Getting divorced was basically having to start life over again. I was planning on disability in four years when the house was paid off. Now I have a new mortgage and a child to take care of on my own. You have to stay positive and play the cards you were dealt. I would look for a doctor who specializes in just ears and not an ENT. I got the Michigan ear institute. Which is around the metro Detroit area. I wish you the best of luck. My post might not help much but there is hope.
     
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  15. EkkoMusic

    EkkoMusic Member

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    Just curious, how do you close your eyes to sleep at night if total darkness leads to balance issues?
     
  16. Will S.

    Will S. New Member

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    With balance issues in total darkness I mean it is very difficult to walk or even stand when there is no visible horizon or other reference points
    When laying down, or even sitting, the is no need to balance oneself and you can relax all muscles and brain can take a break from resolving quadratic equations, or whatever, to maintain balance. Falling asleep is very easy
    When I get up at night I don’t turn any lights on, the various LEDs and lit clock faces etc around the house are sufficient to figure out how to stay upright. only total darkness is an issue.
    I remember even when I was having severe dizziness, spinning issues, now long ago, the best way to get past that was to lay down and fall asleep, that was not always easy, not so now
     
  17. EkkoMusic

    EkkoMusic Member

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    Interesting! My presumed PPPD is worst when I'm lying flat in bed with my eyes closed -- feels like I'm rocking around in a boat and slightly spinning. The moment I open my eyes, it gets better. I wonder what that means...
     
  18. Woodsrider

    Woodsrider Member

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  19. Woodsrider

    Woodsrider Member

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    Reading your post has given me more hope in being bilateral. Thank you for sharing
     

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