Retaking Control of My Life

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.

 

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.

 

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. 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.

 

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.

 

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?

 

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".

 

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.

 

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.

 

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

 

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.