New to the forum here. I've been doing some reading, and a number of things give me hope I haven't felt in quite a while. Thank you for that. I was first diagnosed 3 years ago after a particularly bad October-December for my allergies. I grew up in the mojave desert in California, and never had any allergy issues at all until I moved to Colorado 14 years ago. It's been non-stop allergies ever since. I had lost about 30% of the hearing my right ear 3 years ago, and the ENT told me I had meniere's disease. I didn't think too much of it as I didn't have a whole lot of symptoms at the time, certainly none that imposed THAT badly on my life. Then last August rolled around and this whole thing became a whole new animal. Never knew I had it so good. I've had 2 periods in the last 6 months of around 4 weeks or so where I was vertigo attack free. Otherwise, it's been an attack a week or so the whole time, with occasional brief 2 week stints. I'm up to 40-50% loss of hearing. My old ENT told me I should probably find a better doctor than him. lol At least he was honest with me. The doc I've got now seemed totally and completely confident at first, and that was comforting. Yet the increased diuretic dose he's got me on is sucking all the potassium out of my body, and it is the potassium sparing kind. My kidneys don't seem to care. I'm taking 6 potassium pills a day right now. So clearly this isn't sustainable. He told me in my last appointment that my next step is gent injections or shunt surgery. I'm thinking of telling him hell no. I've seen John of Ohio's supplement stack and am intrigued. In part obviously because a good number of people around here seem to have had such positive results from it, but also from the perspective that someone out there is actually looking for what causes this stupid thing. Why don't doctors do that? If he doesn't know what is causing it, then by definition all he has are really expensive band aids. If the cause doesn't go away, then this will always be a problem. Anyway. 3 questions. I need time to test some of these internet grown theories out to see if they will be effective for me, but I'm under the gun time wise from my doc because of the potassium loss. The diuretic and ultra low salt is keeping me sane right now. So how do I convince him to just maintain the status quo for the month(s) it will take me to determine if some of these other therapies will be effective for me? Also. My wife thinks I'm nuts. She starts rolling her eyes every time I start talking about what I read on the internet that might indicate causal factors for this disease, and thus potentially effective courses of treatment. She is the one emptying the barf bucket when I'm stuck on the floor, and I wouldn't be able to do this without her. What do you do when your spouse wants you to go under the knife or have destructive chemicals injected into my ear before even giving these other things a try? And last question. Do you guys find that you have lost tons of weight because of this? I've lost 70 pounds since August, and not because I wanted to. Though I was at quite an unhealthy weight and so this is ultimately good. It seemed to me that the food I was consuming was the only independent variable, and so I cut out many, many foods. Right now I typically eat around 200-400 MG of salt a day, usually no more than what is naturally occurring in the food I eat. And some days I just stopped eating all together. So a lot of the weight loss can easily be explained by that. But I also found that in the days after an attack, I would loose a pound a day no matter what I did. This has been the single most destructive thing that has ever happened to me. I can't even put it into words most days, I just start crying instead. Here I am, great big huge strong burly man reduced to tears because I'm dizzy and scared. Thanks for the shoulder.
I'm so sorry for what you're going thru. Been there, most of us have. Answers from my experience: 1. The low salt diet made me much worse, along with the diuretics. I was so weak and sick. Also took potassium but blood tests were on the low side of normal. Once I added salt to my diet, began to feel better... 2. I agree that some things on the internet must be taken with a grain of salt. (yum) However, there is good info, especially on a forum like this. You can elect to try JOH and other remedies, but keep in mind that this nasty disease can disappear by itself or not. In other words, you can be very religious on low salt, no triggers, all natural, etc, etc. And it WILL KNOCK YOU DOWN AGAIN. No fault of your own! Many of us have asked, "what did I do? What didn't I do? What change happened?" The answer is nothing. Sometimes there is no answer. 3. Yes, I lost a lot of weight. Talk about an easy diet: nausea all day and no salt, cardboard for dinner. Yup, 8 pounds in 10 days. I was skinny, so 8 pounds is a lot. 4. Was working full time when it started. Valium kept the nausea at bay but I collapsed when finally home. It was an awful experience. Not sure how many of us are still using valium but it works for me. Low dose (2mg) as much as 3 x a day. It calms the vestibular system. For some people, it doesn't work at all. Believe me, I understand the tears and fright. I didn't want to live like I was. Luckily, slow improvement happened. Hang in there.
I would suggest to try an antiviral such as valcyclovir or acyclovir or famvir many of us including myself have gotten symptom relief from it. After having Meniere's for the 50 years, the last 2 years I have been vertigo free and No more dizzy spells. If you search our forums database you will find studies concluding that 90% of MM is caused by a herpes virus. Allergies are big triggers of MM so are some foods, stress, fatigue, illness, weather and a few others. Dr Gacek is a strong believer that MM is caused by an HSV and in his paper posted in the database it gives his dosages of antivirals for MM. I have never taken a diuretic.
Best chances of relief are a combination of my full regimen ( http://www.zoominternet.net/~kcshop/JOH.pdf ) and prescribed antiherpetics ( http://menieres.org/talk/index.php?topic=557.0 ). --John of Ohio
Welcome to the forum VikingMan. I too grew up in the High Desert (Hesperia) and never really noticed any allergies until I move from California to Utah, then Virginia and now Texas. Texas is the worse. I would find a good Neurotologist to help you with your meniers symptoms. I find valium helps me the best for vertigo. The low salt and water pills didn't really help me. Only relief I got was gentimicin injections. They didn't stop the vertigo but when I do get vertigo it last miniutes instead of hours now.
John, If I'm reading Dr. Gacek's study correctly, he is advocating putting patients on the herpes anti-virals indefinitely, yes? Have you guys found them to be necessary long term? Or has taking l-lysine been sufficient to keep the herpes in check after being set back by a course of anti-virals?
Hi VikingMan, Welcome to the forum. I'm in Colorado too -- moved here about a year and a half ago. Been dealing with Menieres for 3.5 years now. I really relate to the emotional side of this that you mention. Exact same boat here. As for practical advice and my own experience: -lo-so diet is key for me too. Though I don't go as low as you do, I need to keep it around 1000 mg/day with no huge spikes or splurges. My birthday was this weekend and we travelled locally a bit, eating out 4 meals straight and boy do I feel it today. -I was on diuretics for almost 3 years and though they may have provided some limited relief, they did a number on my kidneys. My potassium levels remained fine (with daily supplement) but my creatinine got and stayed high. I actually ended up w a kidney biopsy a couple weeks ago to rule out other causes. I'm off diuretics since last spring and probably for good. Not worth the risk for me. -I tried a limited run of AVs without much success. I also did an abbreviated version of JOH (first 3 elements) with not a ton of improvement and discontinued all but the lemon bio's after over a year. -what I AM currently having some success with, for the past few months, is betahistine. You can read more about it on other threads. It has removed vertigo from the equation and shifted around sone of my other symptoms. Aural fullness is not as extreme but tinnitus is worse during times I feel like I'd normally be facing vertigo. It's not typically prescribed here but you can still get it (via compounding pharmacies or online). Hth
Viking Man, welcome to the forum. I am sorry that you are having these issues. I will share my thoughts (for what they are worth!): Potassium - is your doctor checking your magnesium as well; my mom always had low potassium and through research I learned that the body needs both in order to work correctly; so if you are are low in potassium and magnesium taking potassium only is not going to be a great fix. For me, when I reduced my sodium significantly it dramatically lowered my blood pressure - which runs on the lower side anyway - so the doctor advised me to simply return to "in moderation". Have you "not" taken the dieurtic - and did it have any impact? I ask because honestly I stopped taking mine about 6 months ago and don't seen to notice one way or another. Stress and fatigue are major triggers for me. I second Vicki's advice - your doctor seems open and willing. There really is no major "harm" for the anti virals so if he/she were to give you the regiment you should know shortly within a few months. But make sure that it is full dose for the first 3-4 weeks. I was 3x a day for the first 4 weeks and then asked to continue at full 3x a day for another month as I was seeing some relief. I am now down to the 1x per day maintenance dose. It is my understanding that maintaining the med keeps it at bay. For any full vertigo attack that hits (violent room spinning, etc..) my doctor prescribed Ativan which I place under my tongue. It shortens the attack for me significantly - usually less than 2 hrs vs 6+ hrs. As a result it of course decreases the toilet hugging. LOL Ativan is highly addictive so not something to take daily but a thought for "the" days. Last but not least, while I am fortunate to not have weekly attacks (mine typically would come in clusters 1-2x week for a month and then go away for a few months) I would say that if my life gets to the point that it is that often and impacting my ongoing quality of life I would go straight to surgery. I would bypass shunt and gent, straight for the big guns of Laby or VNS. With that you may have a period of recovery..but you are recovering towards a better you, a better life. many here have had the surgery and have been so pleased with the outcome. (And many never come back here because they are off living life.) Good luck
I would be really nervous to try that. I'm on a double dose right now. I could ramp off of it, but I wouldn't be surprised to get hit with numerous attacks if I did that. I will eventually have to come off it, as my body is going through the potassium like candy right now. It's not a maintainable solution. 6 potassium horse pills a day is what I'm taking right now. That's interesting. I've certainly heard that from lots of sources, but I have found near zero correlation to stress. I have a blow up fight with my wife and no attack. Normal ho-hum day at work with no stress and I'm rocking and rolling shortly after lunch. I do think I need to speak with my doctor about a more powerful control medication for when I have accute attacks. The vallium doesn't seem to do much at all unless it is given via IV. I've been in the emergency room twice in the last 6 months, and when that stuff hits my veins directly, it's a nice little vacation from the room spinning like a top. Yet when I take the pill, I don't really feel much of anything. Sometimes it will take 2 5MG doses over 6 hours to really stop a full blown attack. I've thought about the vestibular nerve section. 2 things stop me from asking for it right now. The recovery time, and the possibility of the condition moving to my good ear. I'm the bread winner in my house. I've got a wife and 2 kids. My job would not be able to let me go for a month or two while I recover from that surgery. And if whatever underlying cause attacks my good ear down the road, then I'm really screwed. I'd MUCH rather find out why this damn thing is happening in the first place and deal with it there. I've got a call in to my doctor to find out if he would be willing to discuss alternate treatment plans. If he says no, I'll be doctor shopping.
Question Vicki, or John if he reads this again. Are there any threads where the development of John's regimen was documented? He quotes some success numbers in the PDF where his regimen is detailed. Did he gather those numbers himself? Or was that process documented somewhere here on the forum? Or the old forum? I'd really like to read more in depth on the development of his regimen, especially some of the success stories. Might give me hope that this thing can be beat.
I am not the one to answer questions on JOH's regime but I am not sure why you are dismissing a trial of antivirals to see if you get the relief as so many of us get from them.
VikingMan - since you are having to take such a high dose of "potassium sparing" dieurtics have you considered going to an alternate brand even if it isn't "sparing"? For my mom (heart issues) the potassium sparing ones did nothing for her. And since you are having to take so many perhaps you could take less with a traditional dieurtic. With regards to the surgery as an option, not sure if you are in the US? If you are, I believe that with a doctor's note your employer would have to allow the surgery. And if your current benefits package offered by them includes short term disability it would help with the bills. Not pushing you just letting you know there may be options. I can tell you that I researched every possible thing when I was first diagnosed. And my first 3 years were horrible. Even the periods between attacks still had constant ear pressure, ringing, fatigue, etc..the closest I have gotten to anyone offering up even an "opinion" on the cause is with anti virals. Other than that, in my experience most doctors have told me that "you know there is nothing I can do for you". As you are still early enough in your cycle of this thing I strongly would recommend that you explore anti-virals. Most doctors agree there is no down side. Only differing opinion seems to be if they think it will help. But remember those same doctors don't offer any other options so why not try. And if it works, it would be 3 pills a day going down to 1x per day (valtrex) versus a handful of other pills that combine to similar effect. Some people have found relief thru diet. Many have said to explore the possibility of MAV as the diagnosis.
I am decidedly not dismissing anything at this point. I asked my doc today if he'll do the antiviral meds. I hope to hear back from him tomorrow. If he says no then I will definitely find a different doctor who will say yes. You could characterize my current frame of mind as... not putting all my eggs in 1 basket. That's all. And, I've heard the anti-virals are expensive. I'd rather not be tied to them forever, though I would do it in a heartbeat if it actually offers relief. That's why I asked John several posts back, though he has probably not read the thread again, if l-lysine can pick up where the anti-virals left off. If the lysine can keep the herpes in check, then it seems like a potential course of therapy would be... use the anti-virals to kick the herpes in the teeth for some period of time, weeks to months presumably, then a high dose of lysine keeps them in check. Lysine is cheep. And, it's just protein. I have no problem at all taking protein. Antiviral meds... I'd rather not have to long term if I don't need to. That's all I'm saying. There are a number of assumptions in that equation though. Basically, how effective is lysine at keeping the herpes from continuing to cause problems. That's why I'm wondering if there are any threads on this forum where in you guys have talked at length about these protocols, John's regimen included. You say so many have gotten relief from the anti-viral meds. The numbers here I'm sure are distorted, because of the most recent posts, I haven't seen that many people commenting that they have gotten the relief you describe. Most likely because an online community like this is one based on need. If I no longer need it, then I'm likely to want to forget about the whole thing because it was such a dark chapter of my life. The only ones who remain are mostly the unlucky ones for whom this protocol didn't work. The rest have moved on with life, as nicmger said... "And many never come back here because they are off living life." I hope to one day soon have to make the same choice. Whether or not to just try to forget about this whole thing because it's in my past while I do X, Y & Z to keep it in check.
Not sure what the point would be of trying a different one. Then I wouldn't even have the potassium sparing nature of it to help my kidneys keep the potassium. I'd probably loose potassium even faster. I just view it as a crutch right now, nothing more. I don't want to take it forever. There are other reasons that I won't get into here, but surgery is a nuclear option to me. I'd like to avoid it almost at all costs if possible. MAV... Migraine associated vertigo, right? I RARELY get a headache of any kind, much less a migraine. I do get ocular migraines, like once or twice a year, though I don't have any pain from them at all. And yeah, I'm absolutely going to try the anti-virals.
Vikingman From my own experience-I tried many things but not the JOH regimen. As soon as I read here about antivirals, I spoke to my Dr. And he put me on them. 400 mg.- 3X a day. It was back and forth as far as relief goes and I didn't notice marked improvement until about 3 months in. Still there were some backslides but NOTHING like I had experienced before. At approx. 6 months the vertigo was gone as well as the other symptoms. I occasionally experience some tinnitus now and some pressure due to weather. Stress being my biggest trigger, I find that now I'll have days when I'm off-balance but I know what is causing it. This can occur when I don't get enough sleep as well. I now take 400 mg. twice a day. I will add another 400 mg. if I'm in a stressful situation and that usually helps. No more Valium or narcotics to get me through it. No more laying on the floor in the bathroom constantly nauseous and needing help just to go to bed. Will I be on antivirals forever? I don't know the answer to that but I have my life back and for me that's all that matters. You could, of course, take Lysine as well as I don't think that would interfere with an antiviral treatment. Good Luck to you and I'm glad you found this place to help you with this awful disease.
I haven't ever noticed stress being much of a factor, but sleep is a factor. If I sleep poorly or don't get to bed at a decent hour so I can get at least 8-9 hours, then I am much more likely the next day to feel off balance, ear full, lowder tinitus, which can ultimately culminate in a full blown vertigo attack. I wonder if combining John regimen with the antivirals could distance you even further from your symptoms? Increased circulation will always help things, and much of his regimen seems designed to that end. My initial personal theories about this were that it was related to my poor physical condition. I weighed nearly 300 pounds and was very inactive. I'm now around 225(which is a very healthy weight for my frame) and my conditioning hasn't been this good since I was much younger. All that amounts to better vascular health. And whether from the increased diuretic dose or my improved conditioning levels, even the last couple attacks have not been as bad. Looking forward to seeing how the antivirals work.
Vikingman, I developed my Meniere's treatment regimen by myself, over a period of many years, starting in 1995 when Meniere's first zapped me, then through the first years of this century, when it was clear the things I was taking were actually reducing my Meniere's symptoms. I finally posted what I had learned, and continue to experiment and revise the regimen as new things are learned. If you haven't, read the entire latest regimen posting in detail, here: http://www.zoominternet.net/~kcshop/JOH.pdf Since 2001, I have archived regimen user reports, many which have appeared here; while many more were emailed directly to me. Presently, I have 259 reports. 228 are positive, where the user reports significant or complete symptomatic relief, and 31 reports where no useful symptomatic suppression was reported and the regimen was a failure. Presently, that's an 88.03% success rate. But no, I do not share these reports, in concern for privacy. In fact, I erase names and email addresses and record and retain only the user's written text and the date of the communication. Now, let me lay out the harsh truth. Your chances of gaining adequate, enduring symptomatic relief from the diuretic and low salt diet approach are very poor. For a few, that can work; but usually only for a period at the beginning of the disease. The stark reality (not yet recognized by many, even most physicians) is that Meniere's Disease is not, in the vast majority of cases, idiopathic — without any known cause. In fact the clinical evidence of Dr. Gacek (and now, many others) shows conclusively that most cases of Meniere's are caused by a herpes viral infection in the inner ear or the associated nerves. Until the activity of that virus is thoroughly suppressed (by antiherpetic drugs and/or lysine in sufficient dosages), symptoms will slowly but continually worsen. Throwing diuretics and valium-like drugs at the problem is mere symptom-wacking. None of that stuff nails the root cause, the active herpes virus infection. Only prescription antiherpetic drugs, and/or lysine, in sufficient doses for sufficient periods, can do that. Again, read my regimen posting above. Then, go here: http://menieres.org/talk/index.php?topic=557.0 And do what is recommended. Get the useful info to your doctor and get him to prescribe acyclovir or any of the other antiherpetics. In the meantime, get on my regimen; which complements and enhances the prescription drug therapy. Don't mess around. The longer you wait, the more the inner ear of your affected side will deteriorate. Sooner or later, the unsuppressed virus is likely to get into your remaining good ear. You will have bilateral Meniere's, to be avoided at all costs. And yes, a vestibular nerve section, the VNS, can stop the disease in the affected ear. You will be deaf in that ear. But the slicing of that nerve in no way prevents the virus from eventually getting into the opposite inner ear, where a second VNS leads to profound deafness and life-long balance problems. Get on the regimen right away, and get moving to get the antiherpetic info to your doctor, to get him to prescribe the proper drugs, in the manner Dr. Gacek does so successfully. If the physician refuses, tell him goodbye and go to another one. The clinical evidence is incontrovertible. Safe, and effective. Keep us posted on your progress. --John of Ohio
Thanks for replying John. Please understand that my talking about the diuretics at this point is only because I am so damn scared of more vertigo attacks. I can easily tell after just several months of use that the diuretics are not a long term solution. And eating less than 500MG of salt a day SUCKS! The only reason I want to keep them for the time being is as a crutch to tide me over till the anti-virals and supplements have time to work. I ordered the whole regimen stack off of Amazon today, most of it should get here on Wednesday. I'll start with the 3G of lysine straight off. And I sent a request to my doctor regarding the antivirals. If he says no, I'll find a different doctor. I still have a good amount of hearing left in my bad ear. And I suspect that if I truly get this under control I might even gain back some of what I've lost. And I definitely wasn't trying to pry into anyone's privacy. I'm just so curious that I wanted to read more. I'll look back through the forum here. I'm sure there are plenty of threads where people have discussed this topic in depth. If this ends up working, where do I send the check? Cause I'll owe you BIG. lol Question about the lysine. Is there any harm in taking more? 5G or so worth? It's just protein right?