Retaking Control of My Life

I thought this might be a good place to write out a journal of sorts detailing my experience with the JOH regimen as well as anti-viral therapy. I’ll detail pertinent medical history, my symptoms and what I am doing about it.

I have had very BRIEF episodes of vertigo a handful of times since I was probably 25 or so. I’m 37 now. None of those occasions were even remotely long lasting. They usually subsided inside 10 minutes. I’ve also had tinnitus for a long time. I don’t really even remember when that started, but probably 10-15 years ago.

I grew up in the high desert in California. Lived there till I was 22 or so. Then my wife and I moved to Colorado. I have had non-stop environmental allergy problems ever since. My nose was constantly running and congested. I feel very certain that my allergies played at a strong role in the development of my meniere’s disease symptoms. 3 years ago I had a particular bad several months with my allergies. My right ear became congested and my I began having problems hearing out of that ear. It wasn’t until several months later that an ENT gave me a hearing test, looked at my history and gave me a diagnosis of Meniere’s Disease. That didn’t actually seem to be that big a deal at the time. I was more concerned driving away that the 30% loss of hearing I had thus far sustained was “permanent” according to the doctor. I didn’t really have any lasting symptoms after that for several years. Then last August, I began to feel distinctly dizzy one evening after dinner. I vomited and took my diuretic, which I had not been taking since the ENT prescribed them 2.5 years earlier. This was 1 day before my 15 year anniversary weekend with my wife! Talk about bad timing. I spent most of the weekend dizzy and nauseated in bed in our hotel room. Not how I planned on spending the time.

Thus began the nightmare. I’ve had fairly regular vertigo attacks since, some lasting for as long as 12 hours, and I’ve lost more hearing. I’m down to 40-50% loss. The worst attacks are the ones that wake me up in the middle of the night! I HATE those!

I had to get back in to see the ENT. He was unwilling to put me on his schedule in the near future however. The soonest he was willing to see me was 2 months out. Yeah, he was immediately fired. I found another doc. He is young and inexperienced, straight out of his ENT fellowship. But he was able to see me soon. He got me the prescriptions I needed and introduced me to the concept of using valium and anti-nausea medication. That saved my bacon a number of times in the following weeks.

He gave me 1 steroid injection to help me deal with the vertigo attacks, which I was having at a rate of 2-4 times a month, sometimes more frequently. It seemed to help for a short while but I had more vertigo attacks anyway. I should have gone back for more injections, but the numbing agent hurt like hell and I said no. I may yet get more steroid injections, we’ll see.

It always seemed to me(right or wrong) that what I ate was the strongest correlating factor to these debilitating vertigo attacks. I thus dramatically altered the way I ate during the last 6 months. Virtually all processed foods have been completely elliminated. Very little sugar. Lots of meat and veggies and fruit. Ultimately, it’s actually a really healthy way to eat. But I also would sometimes stop eating for a day or 2 after an attack. And when I did start eating again, I was so certain that food was the trigger that I would barely consume enough calories to live on. As a result, I’ve lost a lot of weight over the last 6 months. I started around 295 pounds. I now weigh in at 227. So I’ve lost almost 70 pounds. That ultimately is good for my health, but I wouldn’t recommend doing it that way. I was not in control, reacting out of fear and despair for much of the last 6 months.

Next that doctor told me that there was not much else he could do for me, and referred me to an inner ear and balance specialist. A guy who specializes in Meniere’s Disease. He is my current doctor, though I fear he will not be open to anti-viral therapy. He initially put me on a double dose of the diuretics. That seemed to control the vertigo a lot better at first. But I’m still having occasional attacks. And, the diuretics are stripping the potassium out of my body at an alarming rate. My potassium numbers were 2.7 from my last blood test.

During my last appointment with him, he said the diuretic treatment is not going well due to the potassium loss. He said our next step is gent or shunt surgery. Being faced with destructive procedures has really lit a fire in my belly though. I don’t want to do things that have a significant possibility of harming me further. None of these things that this doctor are suggesting do ANYTHING to address WHY this disease is taking over my life to begin with. I have always been a why guy. I always ask why. Until I know why a thing is so, I can never believe or put any faith or stock in it. So I began doing more reading and research. On facebook, google searches, etc.

That was how I discovered the possibility, largely through this forum, that the herpes virus is the cause of this disease and the theory that anti-herptic medicines could beat this thing back. Something that actually at least attempted to answer the question of WHY this was happening to me and proved it through clinical experience.

I have never understood why doctors are content to write prescriptions and cut people open without knowing WHY they are sick to begin with. The few doctors who don’t view their patients in that light have sharply stood out to me. They are the ones who genuinely help people. They are unfortunately very hard to find sometimes.

Another several items of note. I was diagnosed with celiac disease several years ago. I’ve been completely gluten free for quite a while, 4-5 years now I think. So being gluten free hasn’t done a dang thing to help the health of my ears, though perhaps I would be even worse today if not for having gone gluten free.

I also definitely have TMJD. My jaw has clicked loudly since I was a boy every single time I open it. That may be an avenue to look into at some point if I don’t get relief from other courses of treatment.

I also had a herniated disk in my neck when I was a boy. So chiropractic care may also be required to effect some positive change to my symptoms. I might try that in the near future. I found a chiropractor not too far away who actually deals with patients who have meniere’s disease and he boasts that all of his patients are at least somewhat better off for having seen him. In part, I figure that if I throw enough 90% solutions at this thing, one of them is bound to stick! Lol

Sleep quality also seems to be an important factor. So loosing weight and getting back into decent shape has been of HUGE benefit to the quality and quantity of my sleep. My wife tells me that I no longer snore. And as heavy as I was, I was probably having sleep apnea almost every night. That can negatively affect everything in your whole body! Not getting into REM sleep and going without oxygen for a small time every 10-15 minutes? Uggg. I’ll never let myself get that heavy again.

The only thing is that I do need to segregate some of these potential solutions to an extent, or I won’t really know what has made positive changes, assuming I see some. So this will unfortunately be an iterative process. But I figure, what have I got to lose? I could go deaf anyway from going through more destructive/invasive procedures from the conventional medicine approach anyway. So who cares? What’s a few more vertigo attacks?

One theory I had heard in my reading over the last several months that made some sense to me, is that this disease is caused by atherclerosis in the inner ear. Disease of the arteries and blood vessels. That seemed to make a lot of sense to me. I was over weight and way out of shape. My blood pressure was slowly creeping up. It made sense that I was probably pre-diabetic, or close to it, and that some early atherclerotic disease was afflicting my inner ear. If the blood flow was cut off, part of the balance system would stop sending balance information to my brain, thus the vertigo. SO I began to engage in vigorous exercise. Along with loosing weight. I now don’t really believe that to be the causal factor, though I do suspect that it has negatively contributed to a multi-factored equation that has harmed the health of my ears. Exercise, lowered carbohydrate consumption, sugar illumination are going to remain strong elements of my ongoing efforts to remain healthy. All so that I get the best circulation in my ears possible. My diet could loosely be called a bastardized version of paleo. Meat and vegetables, some fruit, little starch and no sugar. Though I also do still consume dairy. Mostly low salt cheese like swiss and sour cream. And I have upped my carbohydrate consumption some over the last month or so. I actually want to STOP loosing so much weight. Though candy and sodas are gone forever which is a bummer. I miss Squirt and peanut butter M&Ms!

One article I read that influenced some of the thoughts regarding atherosclerosis was this.

http://www.eurekalert.org/pub_releases/2013-12/uocd-crm120613.php

I still strongly believe that loss of blood flow to the ear is probably what causes individual attacks, I just think it’s not actually the root cause of the disease. There is a deeper causal factor at work. I think inflammation from the herpes virus or possibly a fungal infection is more likely to be the cause. That actually makes sense.

The primary changes I am now making, and the main things I want to start journaling about are beginning the JOH regimen and the anti-viral therapy I have yet to even start.

I’ve sent the letter to my doctor including the Dr. Gacek study and treatment protocol. He has not gotten back to me yet. If he doesn’t, I’ll go back to the young buck straight out of his ENT fellowship and see if he will work with me. He’ll probably be open to it. If not either of them, then I’ll just go to my primary care doctor and see what he says.

Another interesting thought. I found the Italian study on Pycnogenol probably 4 months ago or so, long before I read any of the information here, which is a real pity. I took 2 months worth of the stuff, but stopped taking it, becoming quite discouraged with the ongoing vertigo attacks. I’m back on it now though. I did notice that my tinnitus wasn’t quite as loud while taking it. So I think that given the rest of the JOH stack, the pycnogenol will probably interact well there.

I’m now on day 3 with lysine and I started the lemon bioflavonoids this morning. My ears are popping well and only occasionally off balance. Tinitus at a medium volume. But I’m still on the diuretic and VERY low salt diet. That will have to change soon given the potassium loss. I’m not looking forward to that. I wouldn’t be surprised if I have an attack or two just because of going off of the diuretic.

My last attack was actually only a near attack, though the one before that lasted for 12 hours. A big storm moved in with a fairly dramatic temperature/pressure drop last Saturday. I was off balance all evening and the room started to move just a little. I went to bed and slept that one off. Sometimes if I can go to bed early enough in the symptom curve, it will subside. My vertigo usually builds up over the course of an hour or so before becoming a full blown, room spinning violently, barfing my brains out attack.

Your thoughts, critiques and input are welcome.

 

I've also done allergy shots (mold, grass and dust) for several years. They make my allergies more manageable most of the time. But whatever I'm allergic to during the last fall/winter months still gets me every year. The only thing I can think is that the mold allergy shots don't actually do anything to help my body stop reacting so badly to the mold. Cause nothing is blooming in the late fall/winter around here. And if the dust allergy shots weren't effective against dust, then I would still have year 'round problems because I am a terrible house keeper and my house is full of dust!

 

What did you do? Labyrinthectomy? Nerve section?

I would certainly agree that the disease itself is already destructive enough. If I can't deal with it via the means I am pursuing, I will become willing to do almost anything. In the middle of one of the bad vertigo attacks, I would do anything, ANYTHING, to make it all stop. When I say these things are destructive, I am referring to the fact that many of the surgical answers involve irreversible steps that cause damage in themselves or carry risks of other things being damaged. What angers me is that modern medicine's approach to so many things like this is to try to eliminate symptoms, instead of eliminating causes. It's backwards and upside down. And while surgery might give me back control of my life, it does so at a price, and I'm not just talking financial. What if after the surgery the cause of the disease decides to travel to my remaining good ear? What if I'm one of the unfortunate few who don't experience the relief promised from the procedure and things stay the same?

I understand what you are saying though. Thanks for the input.

 

I appreciate the encouragement, I truly do.

This is an interesting statement BullDog. It seems that not all here agree with it though. There are known causes, or at least many people who seem to strongly believe there are known causes. And while those causes don't always indicate the possibility of a cure, they can indicate effective courses of treatment.

If I were to venture into the murky waters of non-medical conjecture, based on my reading and personal experience, I would guess that Meniere's is caused by a number of things. Each of which has a common downstream consequence of... inflammation in the inner ear. And since the inner ear is land locked inside a bone, any inflammation there can manifest as a common set of symptoms. Tinnitus, fullness, vertigo, hearing loss, etc. All a result of insufficient blood flow due to ischemic conditions, and poor nutrient delivery, etc.. To the degree that medical science thinks these symptoms MUST be caused by a single agent, they will always be barking up the wrong tree because they are by definition looking at a number of causes. There will always be cases that defy their current hypothesis of the cause. When what we are really looking at is meniere's disease of multiple flavors. Some caused by the herpes virus, some caused by a fungal or mold infection, some caused by spinal alignment problems, some caused by jaw alignment problems, etc.

It's kind of like a flat tire. Flat tires always manifest with the exact or very similar "symptoms". Yet, what caused it? Might have been a nail. Might have been a screw. Might have been bald tires. Might have been a hot day combined with a flaw in the rubber. Many different causes. Do doctors look for multiple causes in attempting to discern the cause of the disease? Or do they assume that because they are dealing with the same symptoms in virtually all people, it must be an identical cause among them all? If so, then they are missing the forest for the trees. Buried in the data is an answer they maybe have not conceived of and will never conceive of with their current frame of mind. Multiple causes of inner ear inflammation which subsequently causes this set of symptoms. So if anti-virals works for me, then what I really have is an active inner ear herpes infection causing MM symptoms. If they don't, then I have a different flavor of MM. It is simply a matter of finding the right flavor.

The bummer would be when the inflammation is caused by something that has not yet been identified. At that point, you are left with the options you describe.

 

So there is an ace in the hole should all else fail. That is good to know.

 

So far I'm up to taking the lysine, Vit C, Vit E and the lemon bioflavonoids. The vinpocetine actually hasn't even arrived in the mail yet. No significant adverse affects noticed. I also take pycnogenol, though based on Santa's experience, I'm thinking of switching to a different brand. There is always a question of the potency or purity of what you are buying. That sucks.

It's been 2 week since my last vertigo attack. Though I am still on the diuretic. I took the potassium blood test last Wednesday and the doctor hasn't gotten back to me yet. I also dropped off my request and the Gacek research on the same day. He probably thinks I'm nuts. Getting close to time to find a new doctor.

The tinnitus in my bad ear is sometimes both a low pitch rushing sound and a high pitch eeeeeee sound. Lately, it is only the high pitch sound, which is hopeful. Still feel balancy every day. You know that sensation when you move and your balance system tells you things it shouldn't, giving you a momentary nauseated feeling. I hate that. Thankfully though, it hasn't been persistent. I can tell I'm in trouble when I feel that way and it doesn't go away after a few moments.

My ear is mostly open over the last week. That is always a good thing. Able to pop it whenever I feel the need.

I'm also taking an easy week on my working out. I've been pushing my conditioning levels pretty hard for a while now and my body needs a break. So it'll be less intense workouts this week. Back into it hard and heavy this weekend.

 

I'm now up to taking 4G of l-lysine, Vit C, Vit E, lemon, MSM, pycnogenol and vinpocetine. I'll add the ginkgo this weekend.

I've noticed some interesting things. I haven't had a vertigo attack, but the symptoms I do still deal with on a daily basis have fluctuated quite a bit. One morning I woke up and the tinnitus was really loud. Many days though, it has been quieter than normal. And it seems that my bad ear is not as deaf as it normally is. One day I actually felt the residual swirls I normally feel, those not quite dizzy or vertigo sensations we deal with, actually went away for almost an entire evening. That happened right after a workout. I feel more and more convinced that the problem in the ear is circulation related. I am working out again today and I'm going to take 2G of lysine before I do. All the movement and activity and increased blood pressure should result in good blood flow to the ear and hopefully deliver a good bit of lysine to the places that need it most.

I have also noticed that when my ears pop, they have been popping deeper than they normally have over the last month.

It kinda hard to tell though. Are these things just in my head? Am I dreaming them up because I want this to work so badly? lol We'll see.

Still on the diuretic but my blood potassium is now higher. It was 2.8, now it is 4.4. The doc upped my potassium pills to 6 a day. Those things are hard to swallow! He still hasn't answered me about the anti-virals so I took the paper work to my last ENT to see if he will be willing to prescribe the stuff. If I don't hear from him soon, I'll go to my primary care doc.

 

I'm now taking the whole regimen. Had a minor attack last night. Difficult to know if it was salt or the regimen. Perhaps both. I ate around 100-200 MG combined of additional salt last night. I make a home made salsa with no salt and I buy some very low salt corn chips from whole foods. I didn't even eat that much, but perhaps it was enough. Or, the regimen is affecting the balance of power in my ears and things are just more sensitive in there for now.

It wasn't that bad of an attack though, thankfully. I have a couple different kinds of attacks. Sometimes I wake up in the middle of the night and the alarm clock on my wife's side of the bed is moving. Sometimes I can roll over and go back to sleep, sometimes I can't. This time I could at least. So no vomiting or dramatic fireworks. Just a little more off balance than normal this morning and slightly deafer in my bad ear. I should get it back though. At least this wasn't one of those 6-12 hour barf fests that leaves a bunch of blown capillaries in my face.

On the anti-viral front... I've asked a second doctor if he would consider the Gacek treatment protocol. He said the paper was "interesting", but since he doesn't know much about it he isn't comfortable doing it. He then gave me the option of referring me to yet another ENT in Denver, an hour and a half away from here. Like I can drive that far. lol

The other doctor just hasn't read the paper yet, even though I gave it to him going on 2 weeks ago. I called him again yesterday and his secretary told me he would finish the paper this weekend.

Sigh. Why is this so hard?

I'm thinking of going the high dose vitamin C route instead, or in addition to anti-virals, assuming I can find a doctor at some point who will prescribe them. I read of Solari's experience with vitamin C, and that of several others in the "Database" here. Perhaps that will give me the anti-viral impact I need.

 

I can absolutely respect the decision that you made, beyond any question. If I get to the same point of having tried everything and am still experiencing vertigo attacks, I'll probably do the same thing. I hope you can see from my perspective as well though, that I don't want to have to cut my ear out in order to get relief. If that's what it comes to, then so be it. I get a little more motivated to find relief every time I experience vertigo. Although I have other reasons why even that will be challenging beyond the obvious. Unless I am mistaken, you can't blow your nose after vestibular surgery, right? It sounds gross, but my allergies are so bad(despite just about everything medicine has to offer), my sinuses would be clogged to the point that I couldn't breath in a day or two. Yet I have always slept with my mouth closed, breathing through my nose. I have to use breath right strips just to make it through one night, but that's how it goes because I can't breath through my mouth while I'm sleeping. I suppose I could try to make the adjustment of breathing through my mouth when I sleep, but that is hardly something I can consciously control.

I'll cross that bridge if I have to one day, but I'll be damned if I'm going to go there right up front, especially when so many people have gotten relief from these home/internet/clinical therapies. My mother gave me my ears, I prefer to keep them.

Enjoy your Chillies. I ate home made low salt fried chicken and french fries. It was good, but not as good as Chillies. I haven't eaten out in months. I miss hamburgers.

 

There seems an inherent contradiction in your post redwing. If there is no known cause, and yet something like anti-virals actually works for someone, hasn't that person discovered the cause of their meniere's disease? Go talk to vicki or Solari or John of Ohio and ask if there are no known causes.

Given the fact that medical science hasn't discovered a "cause" in the 150 years they have known about this disease AND the fact that many experience remission of symptoms from one protocol or another, doesn't the available evidence suggest that we are looking at a common set of symptoms with multiple etiologies? In essence, Meniere's Disease subsequent to X, where X is potentially different for all sufferers. The thing to do it seems, is to attempt probable solutions for the suggested potential causes (plural) and see if something sticks. It is entirely likely that there is no singular cause. Those looking for it are looking for something that doesn't exist. There will always be contradictions in their research because multiple things can cause this condition.

I'd remind all the laby preachers that many of you also once choose as I am, to pursue a number of other potential therapies prior to choosing the laby. You say that you would not have chosen that knowing what you know now. Yet, it is ENTIRELY likely that your meniere's and mine are not the same. I still have A LOT of functional hearing in my bad ear. And I have heard numerous reports of those who have gained effective relief from one of these therapies that they even gained back some of the hearing they lost. Why go straight to the end state of a laby if something else has a statistically significant chance of helping me? Gacek reports 90%. That's pretty freaking high!

Not to mention if one effectively finds the cause of their disease, you will also deal with the host of other accompanying symptoms. I admit they are minor considerations when stacked against a rotational vertigo attack. Yet if it's possible that I can hit them all with the same baseball bat... then I'm sure going to try.

Interesting dichotomy of sub-cultures on this board. Some who want to convince others of the potential effectiveness of these medically fringe therapies, and those who want others to go straight for a scalpel.