Retaking Control of My Life

Discussion in 'Your Living Room' started by VikingMan, Feb 27, 2015.

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  1. nicmger

    nicmger Member

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    Wow. Not sure if this post was intended to be rude but that is how I read it.

    In my opinion EACH person's thoughts and decisions on how to deal with THEIR symptoms and how it impact THEIR life should not be called into question nor treated with anything but respect. This disease does not impact everyone the same way - some are impacted much worse than others. Every treatment - other than laby or vns - does NOT work for everyone. And that includes anti virals, JOH, diet, low sodium, no caffeine, etc.. Yes there are many (like me) who seem to have had positive relief from anti virals but not everyone.

    In terms of "sub cultures", again, it is different people who are trying to find relief in whatever manner possible. Since it does not even appear that even two doctors will agree on the exact same protocol I am not sure why anyone here would believe that there is a one fix for all.

    My first year of being diagnosed if my doctor (or doctors as the case would be) would have agreed to the surgery I would have went "straight to the scapel". But they wouldn't so I was forced to suffer for several more years before finally finding a doctor that would agree to try the anti virals.

    i visit this board to get everyone's thoughts and opinions and experiences while knowing that ultimately it is up to me to research and determine what is best for me. I respect everyone here who walks in my shoes and quite honestly respect those that have found relief through treatment or surgery but STILL take the time to come here and share their wisdom even more. Those people have found it different ways but each one of them is happy with their results. JOH, Vicki, Bulldog, Redwing, etc. they are doing well but taking their time to come here and help those that are not. I thank them for that.
     
  2. Bulldogs

    Bulldogs Well-Known Member

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    Good Luck VickingMan, I wish you the best in this shit disease, but I am bowing out of your thread because I am in Sarasota to see the Orioles for Spring Training this week and also to go to the beach and enjoy life.

    I wish you the best, but if you think Vicki (my dear friend) or JOH or anybody else has found the cure to this disease you are being naive and gullible. Be good.
    Again, good luck with the vitamins and supplements and av's.

    Nobody should suffer from this crap. Be good!

    I'm gone! Off to see baseball and surf with my brother and best buddy this week.
     
  3. redwing1951

    redwing1951 Well-Known Member

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    Vikingman if you would go back and read my posts you will see that I have never suggested anyone go straight to the scalpel. I am not a laby preacher I have only stated if it comes to the point where all else fails do not be afraid of the surgery. I respect everyone on this board and whatever works, JOH Antivirals, surgery to end the misery than by all means do it.

    We could go on and on about cause and cures and what works and what doesn't. We have had many debates over the years on this forum but none of them have ever ended with anyone being 100% right or wrong. I am not sure what your intent is but I do know this I hope your symptoms never get to the point that my did. I hope you never need surgery. I wouldn't wish my experience on my worse enemy.

    Thank you nicmger for your thoughtful post. I believe your take on what this forum is about is spot on.
     
  4. VikingMan

    VikingMan Guest

    Not at all how I intended it. I simply meant what I said. There seems to be those who want to subtly talk down to alternative treatment methodologies or to those interested in them. I'll even fully admit that they may not work, but clearly they have worked for some. Are those people "cured"? Probably not because if they stopped the treatment that is working, they would probably become symptomatic again. Is that gullible? I don't see how that is gullible. I'm going into this eyes wide open and with the idea of a laby or whatever down the road if it doesn't work, though I would probably do gent first. But I simply feel it would be easier to live with sucking down some pills every day than re-training my brain on how to freaking walk and being deaf. Are those things the end of the world? Hell no. And I ABSOLUTELY respect the decision made by those who have gone the laby route. I just don't understand why they come onto a thread I started to detail my attempts at solving this problem in less invasive ways and tell me about the Chillies they are eating, and the fun life activities they are attending, going to the beach, etc. Seriously? THAT is rude. I'm debating on whether or not I should drive today. I woke up this morning way more off balance than normal. Not sure why. Maybe the JOH regimen is still causing changes in my inner ear or maybe I'm barking up the wrong damn tree and the thing is just continuing to destroy my ear. How the hell can I know unless I try?

    What I feel is that MY decision is being called into question in this thread. I respect the folks who have gone the route of labys. We ALL have been there, vomiting until our freaking eyes bleed unable to get up off the ground. What I can't respect is them coming here talking down to me when I have placed a small amount of hope in plausible theories regarding the cause and seek to take action based on those theories. Heck, even my argumentative wife who trusts in traditional medicine is respecting that. One way or another, we are all going to be dealing with this most likely for the rest of our lives. I'd rather it be WITH my hearing intact than without. It's a simple desire and an honest one. Why can others not respect that?

    It may be that I one day am forced to join you, and should such a day come, then so be it. I just don't want to capitulate to that end without putting up a fight first. If you want to call that rude, then so be it.

    Peace.
     
  5. VikingMan

    VikingMan Guest

    Maybe I am simply misreading yall's posts. If so, then I humbly ask your forgiveness. I'm doing my damndest to beat this f*cking disease and be a good husband and father. At present, in my current frame of mind, that means fighting to keep what I've got. I appreciate your input that I have other options.
     
  6. redwing1951

    redwing1951 Well-Known Member

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    Keep exercising and try to keep the stress level down. These two suggestions from my OTO proved to be invaluable.
     
  7. VikingMan

    VikingMan Guest

    Advice I thoroughly intend to keep. This 6+ month long season of my life was preceded by a period of exercise that I stopped. I went back to eating peanut butter M&M's and drinking Squirt every night while I watched a movie instead, slowly drifting towards 300LBS. I was NOT healthy. Shortly after that, I had my first vertigo attack in 3 years, right before my anniversary weekend with my wife. Ruined our weekend. I was not amused. Since then I have lost 70LBS and my conditioning levels are better than they have been for a long time. My workouts are intense and painful, which I love. Squats, pushups, pullups, situps, high intensity intervals, dumbbell snatches and lots of other pain inducing arrangements of madness. :D The vascular health component has seemed really important to me since the start. It's of course difficult to say which things make a difference when dealing with something that takes a long time to heal, assuming healing is or can take place, and when other things are simultaneously being done. But, I feel strongly about doing it and whether from the increased diuretic dose the doc currently has me on or because I am healthier in general, the last several attacks haven't been quite as bad and they are further apart.

    It has been doubly challenging to get this healthy during this season of my life, because what I really want to do during a really bad vertigo attack and for days and days after is to just stop eating and die. In fact, that's part of why I lost so much weight. Some days I would eat an apple for breakfast and a carrot or two for lunch. This from a 300LB big strong guy who loves hamburgers and steak! To eat anyway and get my unbalanced rear end into the gym has been an assertion of life, that this is MY life and I will not let this thing take it from me. I'm down to 225LBS and am in very good shape. At this point, I actually don't want to loose any more weight. I'm 6FT tall and have always had a large muscular frame. I could stand to loose another 10LBS of weight around my middle, but I'll be content to slowly recomp over the coming months.

    All the movement from working out also helps my balance system cope with the changing input from my bad ear, which helps me not feel so unbalanced.

    Sigh. Such is life huh? Take the hand you are dealt and live with it.
     
  8. hurricaneone

    hurricaneone Member

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    The Laby works period and I wish I had went straight to the Laby and not tried everthing out there. I would have suffered about 3 years less. Good Luck to all and my advice to single sided menieres people is get the Laby and get on with life dont let menieres control your life.
     
  9. VikingMan

    VikingMan Guest

    I don't understand why you guys keep banging on this drum. It's been beat enough times already.

    Hurricaneone... is this what you would say to the many folks who have by way of this forum or other means found significant relief via non-destructive therapies? That they should have gotten a labyrinthectomy? Your high dose vitamine C isn't good enough, doesn't matter that you are now symptom free. You should have gotten a laby! lol

    There is a high probability that one of these things is going to stick for me. Gacek reports 90% of his patients experience significant relief by use of anti-viral drugs. Do they all? NO! Because this can be caused by more than just the herpes virus, obviously. Should Gacek instead go straight for his scalpel and cut their ears out?

    You are suggesting that doctors abandon their oath to first do no harm! Just because it has been YOUR experience, doesn't mean it WILL be everyone's. Many, perhaps even MOST people with this disease can be significantly helped without having to cut their ears out.

    Wouldn't it be nice to both have relief from meniere's symptoms AND have your hearing? I've only lost 30-40% of the hearing in my right ear, and some days lately it doesn't even feel that bad. I still have a ton of hearing left. If I can find relief without sacrificing my hearing, isn't that worth trying?

    Good grief. I start a thread to document my attempts at successful relief via alternative means and all these folks come out of the wood work telling me I should go straight to a laby. ENOUGH! I've heard it before and I'm not doing it. It may yet come to that, but I am not going there straight away. PERIOD.
     
  10. hurricaneone

    hurricaneone Member

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    I am saying that I would on hind sight have went straight to the laby. I hope you do explore all possible cures as I did. Each one of us must do whatever we can while fighting the demon Just remember when you have had enough there is a way out. Good Luck my friend I will read your post from time to time.
     
  11. redwing1951

    redwing1951 Well-Known Member

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    Vikingman you really need to calm down. No one is telling you to run and get your ears cut out. This is a forum to help people make decisions. You are trying to get control of you life and we are here to support you. But you keep accusing the "laby preachers" for you to go straight for the scalpel. Not so. Do what you need to do, hopefully you will find relief. In the meantime get to the gym and get rid of some of your built up anger against the people who are trying to show another alternative. Get it through your head we are not against antivirals, JOH, or whatever it takes. Have a peaceful, stress-less day.
     
  12. VikingMan

    VikingMan Guest

    Do you honestly believe I was unaware of end stage options of dealing with this disease? Perhaps there are folks out there who are unaware of the availability of destructive end stage procedures like the labyrinthectomy, or gentamiacin injections, or vestibular nerve sections. Or mid line destructive procedures like sac decompression or shunts or steroid injections. Do I sound ignorant? Like I haven't been reading up on my own regarding this condition for months now? If traditional medicine had anything substantive to offer that didn't involve cutting my ear out of my head, how would I even have ended up on this forum? lol

    There is a reason your doctor doesn't suggest a laby when you first walk into his office.

    I've been accused of being gullible. Needlessly reminded that "there is no cure". Taunted with the fun things you guys who have successfully mitigated this condition are now able to do(as if those who found relief from some other therapy can't do likewise). And point blank told I should just go get a laby(read like 3 posts above this dude, it has been said). A I need to calm down? Are you sure all these voices are here to help? How can I come to that conclusion?

    Why are we even still talking about this? Haven't I acknowledged like 10 times now that I'll go there if needs be? This is my thread man. I started it to detail my efforts at finding relief via non-destructive means in the hopes that I can be successful and provide someone other poor guy down the road with hope. I didn't start this thread to argue endlessly about whether or not I should cut to the end and go get a laby. So drop it already. Huh?
     
  13. Halos

    Halos Member

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    Good luck VickingMan

    I read all this thread and I must say I am thankful people like redwing, bulldogs and hurricaneone still come around to tell their story. Thank you all.

    I must admit it is ironic that they are out traveling, playing golf, swimming, skiing and living life and you seem upset they are able to do those things and according to your posts you indicate you are in a bad place with the day to day living. I hope we can all enjoy those things one day as well as they do.


    I hope he does not mind me saying this but I am the recipient of hearing aids on behalf of bulldogs and his company's generosity through its charitable foundation. Thank you Joannie for recommending I write and contact them and being my best friend.

    I wish you nothing but the best VickingMan and I hope you are able to conquer this life altering condition as best you can.

    I had the shunt surgery and so far no vertigo but I do have dizziness and my hearing continues to get worse.

    All the best to everyone

    Trisha
     
  14. VikingMan

    VikingMan Guest

    I am not even remotely upset that they are able to live life. Far from it. I am striving to achieve the same thing.

    So moving along. I'm done with this topic. No more posting about labys or this discussion please. I do welcome constructive comments, even criticisms if based on reason and not irrationally levied.

    I am now taking the full JOH stack, and also slowly upping my vitamin C intake. Today it'll be 4.5 grams. I bought some bulk powdered vit c. If I were to be taking as much as 15-20G a day, this bulk stuff would only cost around 15 dollars a month. I'm also interested in it from the perspective of being more resistant to colds and flus. I'd love to not have to wrestle with those and this beast at the same time.

    I'm having more frequent moments during my days of feeling almost normal. Like no residual balance issues. Although the tinitus is still there in my bad ear. It does sometimes go away in my good ear, which is new. And the tinnitus in my bad ear used to have 2 frequencies. One low pitch one high pitch. The low pitch one is gone. I wouldn't go so far as to yet say that the regimen is working. This could all be my hopeful interpretations of simple fluctuations in how I feel. But it is more hope than I've had in quite a while so I'll take it.

    Also of interest... I met someone on a facebook meniere's group who started the JOH regimen a year ago. She told me it "saved her life".
     
  15. VikingMan

    VikingMan Guest

    I'm trying right now to get my ENT to write me a script for them. I've asked one ENT and he said it was "interesting" but told me no because "he didn't know much about it". Duh, genius. That's why I gave you an article all about it. The other ENT I have given the Gacek paper to has had it for almost 2 weeks. I was told he would finish the article over the weekend. Though he has surgery on Mondays, so I don't expect to hear from him today. If I don't hear from him this week, I'll take the paper to my primary care doctor. I've also considered calling the Otolaryngology department at UMass and asking if they know of any ENTs in the Denver/Colorado Springs area that are familiar with Dr. Gacek's protocol.

    In the mean time, I'm increasing my vit c dose in the hopes of achieving the same results, assuming I don't find a doctor anytime soon who will prescribe the anti-virals. Though even if I do I'll continue upping the dose on vitamin c.

    Something is wrong with a system that confers advanced degrees on such closed minded individuals.
     
  16. nicmger

    nicmger Member

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    While I agree that it would be nice if doctors were more open minded, I feel compelled to advocate a bit on their behalf. We live in a sue-happy society where the same people who request something will turn around and sue someone saying they should have known it was bad. Plus while anti virals are FDA approved they are not specific to Meniere's and a lot of doctors fear prescribing drugs off label because of liability issues. And because Meniere's is so random, sporadic on again/off again it is hard to get any conclusions on what works because there is the question on whether someone is better because of the treatment or "just because". I believe that is why there are so few clinical trials exploring this thing for treatment. So again, I agree it is frustrating with doctors, at the same time there are reasons why they are more cautious.
     
  17. VikingMan

    VikingMan Guest

    Thus the reason why tort reform would be beneficial. Mal practice insurance premiums would fall and the system would function better and cheaper for everyone. Then perhaps doctors could be concerned about patient care and not getting sued.

    But yes, I can see your point. Perhaps they are just cautious. There is more safety, legally speaking to sticking with well established protocols. The doctor would be less likely to be found liable should something go wrong in a less time tested, conventional, institutional therapy.
     
  18. VikingMan

    VikingMan Guest

    This dynamic of course, leaves those suffering from devastating illness out in the cold.
     
  19. VikingMan

    VikingMan Guest

    Well, we'll certainly see. I can't prescribe myself the anti-virals. lol Several of the accounts here that I read regarding the effectiveness of vitamin c that worked said it worked fairly quickly. Weeks vs months. And as it doesn't seem I'll find a doc who will prescribe the anti-virals anytime soon, I probably have time to test this hypothesis without muddying the waters with anti-viral meds.

    Up to 6G today. Slightly deafer in my bad ear though it is still popping. That doesn't concern me that much at this point. Still lots of daily fluctuations in my symptoms.
     
  20. Chrisk

    Chrisk Member

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    Hey Viking Man. I was DX with this disease in 1984 over 30 years ago. just over 15 years ago I had a VNS, I have been vertigo free ever since. I'll repeat that, I've been vertigo free ever since. No diets, no regimens, no expensive medications, no repeated trips to doctors. In fact I just had a hearing test and 15 years post surgery my test is almost identical to the one I had immediately post surgery. My "brain fog" and constant dizziness also went away, I consider myself cured.

    Although you may consider this "banging the drum" it couldn't be further from the truth, I'm sharing me experience with MM just as everyone else on here is.

    Surgery is not for everyone, but it has been successful for many, right now you may not not be in a place where hearing about successful surgery is what you want to hear, but this forum is for everyone, not just you. There may be someone on the fence about surgery right now and maybe my post will push them in that direction, and it just might be the thing they waited for their entire life, I know I waited 15 years, and if I had the knowledge I have now, I would have had the VNS way sooner than 15 years.

    I'm not trying to upset you or "bang the drum" more but after 15 years of suffering and now 15 years of medical bliss I feel like stranding on the tallest rooftop and screaming it at the top of my lungs. "I beat MM and you can too."

    The alternative; those of us who have been cured can go back to a normal life and not share our experience with those still suffering, and many have, but I for one will continue to share my experience as will others like hurricaneone and BD who have also had success, because our intent is to reassure people that there are alternatives and if you're lucky and select the right treatment you too may one day be as content with your health as I and the others like me are.
     
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