Mike's treatment log

Hi - new here. First had symptoms of Meniere's about 10 years ago (I'm 55 now) with some general 'offness'; periodic dizzy spells through the years, with a few severe dizzy attacks but usually months and months between. Hearing loss has gotten worse and worse (when I first started my Meniere's career, hearing would get better after attacks; not so much now) - I'm at about 30% now; have a hearing aid which marginally works but some frequencies/tones are pretty distorted. When I was a kid, I was always prone to car/air sickness and when I was in my 30's I developed allergies that I now take Rhinocort inhaler for. I also have a deviated septum in the nostril on my bad ear side (I've taken to wearing a breathe-right in order to get more air up to the bad side (just a guess that might help) - I'm a mouth breather. When I swallow, I usually don't get as good of a 'pop' in my bad ear, indicating that Eustachian function is screwed up (maybe).

Recently though, I've had more frequent dizzy spells and just had a really long lasting spell (about 12 hours) on New Year's eve that coincided with my car transmission going bad, furnace breaking, stock market semi-crashing (I trade for a living), and cat getting sick. Ever see the play Steambath?

I've appreciated reading all of the accounts of attempted solutions and really sympathize with other's plights with this, especially those who have it so very bad. I can definitely think of a few really bad diseases that I would trade this for if I could but I know I've been relatively lucky.

I've cut back on salt and sugar and alcohol and I guess it's time to add some more stuff to the mix. I'm going to try cutting back coffee to 2 days a week only (I will not quit, need to look forward to at least some coffee drinking.) and I'm going to try John's suggestion for taking the lemon bioflavovoid and then possibly some of the other key components of his treatment recipe (vinpocetine, Cocculus Compositum). Debating whether to just try the bioflav (giving it three months) and if that works and keeps on working, not add the other components but I don't know.

If this treatment doesn't work then I'll be looking at some of the injectable solutions, assuming I continue to have frequent attacks.

I'll log what I do here and then summarize everything when I'm done experimenting on myself.

It doesn't get much worse than being dizzy and it pisses me off.

Regards, Mike

 

Hey Mike, first off welcome to club dizzy... next I love you're quote above
and If by chance John's regime doesnt give you the relief you're seeking, do a search on Acyclovir...

Good luck

 

Welcome, Mike!

I hope something works for you. Sounds like you need a break.

 

Mike, have you ever done this before? Caffeine withdrawal brings on some nasty headaches and going back and forth like that would do a number on me. I sympathize about the coffee. I loved my first cup of coffee in the morning. Some nights I only went to bed so I could get up and have my coffee. But I gave it up. I think it has helped whatever I have. When I balked at quitting my dr said - ok 1 cup - one of those little cups not my 12 oz mug. I couldn't seem to do that so finally I got my own coffee pot and made 5 cups (2 mugs) but used 4 tbls of decaf and 1 tbls ref coffee. That way no matter how much I drank I only got 1 cup. THis worked fine except it seemed to be helping so I finally went to all decaf gradually. I will admit while I still liked it when it was only 1 tbls coffee, now that it is all decaf I sometimes forget to drink it. It's not the same.

 

Thank you all for the welcomes - hopefully I can contribute something here.

June - yes familiar with the coffee headaches - thanks for your experience with that. My 'hope' is that by only having coffee 2 times a week (don't think 3 would work), I will avoid the headaches on the days I don't drink it (after the initial quitting headache that I will have for 2 days) - I'll let you know. If that works, the upside is that I'll REALLY look forward to my SPECIAL coffee days, the downside would be the temptation to just go back to drinking it every day.

 

Starting the John of Ohio treatment today - at least what seems to be the prime components (will probably add the l-lysine too):

Per day:

2 Nature's Life Lemon Bioflavonoids (have the Lindbergs in hand also)
2 Vinpocetine (Vitamin Shoppe)
1 Cocculus compositum (Heel)

Coming into today, have only had 1 minor dizzy spell (but some general offness here and there) since my 10 hour blowout vertigo attack of new years eve day. I did start taking advil again (had been taking it for years for a foot injury and it occurred to me that an increase in frequency of dizzy attacks coincided with me stopping that) but am going to stop that for now.

I was going to start with just the Lemon Bioflavonoid so I could do a controlled experiment but I decided to go big bang with this because I want some relief above all and I figure (assuming no side effects) that these other 2 'drugs' might be good for me anyway (keep in mind that I am very skeptical about homeopathy in general).

My thanks to John for making this info so widely available - keeping my fingers crossed.

Will update this once per week (my goal anyway).

 

John's regimen has helped many. I hope it helps you!

 

Welcome aboard, Mike.

I know what you mean about the stock market. Although I don't trade for a living, I do rely on my investments for my retirement.

Looking forward to seeing your log,

Joe

 

Hey Mike

would you consider a 100% caffeine ban, It helped me a lot. Even small amounts of caffeine, bgreen tea etc gave me major problems.

Hard to do I know but think about it.

 

Thanks for all of the comments and welcomes - I'm pretty hopeful about this treatment; I'm also adding more exercise, hopefully that will help with the circulation and it gets me out of the house (which I really need - speaking of the stock market (Joe, maybe the market can begin to stabilize soon) - after these last few weeks).

Milo - not sure about the coffee; thanks for the recommendation - it sounds like that was a very big deal for your getting better. I haven't even been able to cut back like I mentioned in my original post. I drink 1 cup of home made drip coffee when I first get up though I tried holding off the other morning until I went for a walk and had a big glass of water - I seemed to feel more 'normal'.

 

What does your E.N.T say ?
Can you work from home Via computer??

Sorry you have to be here but welcome aboard!

Venus

 

If you do decide to go caffeine free for a trial, the way i did it was just to mix decaf and real coffee grounds, reducing the % of real every day til it was all decaf. No headache. I would like to be able to drink the real deal but it isn't a major thing in my mind. I still make decaf in the morning.

 

Thanks June - maybe I'll try it that way though my quitting stuff method (cigarettes for one) was always cold turkey. I know that caffeine is not good for MM because it's doing the opposite of what these vaso-dilators I've started with are doing - coffee is constricting my vessels/capillaries (though I'm only drinking one cup per day of medium strength.)

 

TY for the welcome; haven't seen an ENT for a few years because I pretty much knew what the treatment options were and I hadn't gotten worse until a few months ago.

Yes, I can (and do) work from home via computer, every day. Of course, if I'm dizzy, I can't 'see' the screen and I'm in bed, motionless. - I need to lose that problem. Judging from other's symptoms and experiences here though, I should consider myself lucky so far.

 

Mike--

Definitely try John of Ohio's regime (I'd also add a good vitamin B complex to that -- I find that helps me a lot). Be aware that some people have a reaction to vinpocetine (I take everything else on the regime and skip that because I had some heart palpitations with it).

If you haven't tried diuretics yet, that might also be worth considering. Many of us find they help a lot at preventing dizzy spells.

I don't know if you take meds for dizzy spells -- I resisted the idea of valium for a long time, until I realized those three or four or twelve hour spells were damaging my hearing, and could be stopped dead in their tracks with a small amount of valium. I probably go through fewer than 10 tablets a year, but I really appreciate having something that can kick a spell before it gets into high gear, and allow me to work/live/etc.

Before you consider anything ablative (i.e. gent injections, etc.), I'd try all the non-destructive options. Things like the Meniett Device or a short course of steroids can be a huge help and may help you get back on track so you don't have to go with a more invasive procedure.

I know how much the dizzyness sucks, but I also know that sometimes you can get the right mix of less invasive things and you can get this thing under control without surgeries. Stress is a killer (as you can see by the correlation between everything going haywire in your life and your dizzy spells getting worse), so do what you can to manage your stress levels (exercise to help work it out of your body, breathing exercises, yoga, whatever works for you). As for the coffee thing, start by cutting back and see how it goes. Caffeine in small doses doesn't bother me, though if I kick back an energy drink, I feel like crap for the rest of the day. Everyone's different, so figuring out what works for you may be a bit of a trial and error thing.

In any case, good luck to you.

 

TY Dreamchaser, for all of that input - appreciated. Will look at the B complex; I do take a multivitamin supplement but it's not mega ... will consider keeping some Valium around too (especially after my 10 hour (longest ever) recent New Year's eve attack); normally use Dramamine. Did the diuretics several years ago with no results but may not have given it long enough; going with John's formulation.

With the Valium, do you know how it works to 'suppress' the symptoms of an attack? - does it just dull the balance system or, does it do something to actually alleviate the inner ear inflammation cycle that causes the dizziness? Curious.

Yes, going with John's formula (at least the key components) before I seriously consider gent injections or some of the other surgical solutions. One thing though, I've decided not to - initially anyway - take the Vertigoheel/Cocculus every day since it only works to suppress/dull the balance system to make the dizzy symptoms less bad (like dramamine) and I want to know if I'm getting any dizziness at all while on this regimine and also obviously don't want to take something I don't need to and that might become less effective when I do need it if taken every day.

 

Had a first the other day (at least while walking); walking along a trail with a friend and BOOM, the world turned 'sideways' and I fell pretty hard (still sore - ha). My friend had to go home and get his car and come back to that part of the trail to help me out Anyway ...

Have decided to stop the coffee and am now on my second day, have the no-coffee headache but that'll be gone by tomorrow. Originally had planned to cut back to twice a week but I may go all the way and just quit - have to find some decent herbal teas I guess. We'll see how throwing this in the mix helps.

 

Mike,

I am sorry about your fall on the trail. When my dizziness/imbalance was at its worst, I used a cane to help keep myself upright. I love to walk and explore the outdoors and I did not want to forgo these activities. Besides, they challenged my balance system, which I think helped the balance center of my brain to adapt, at least to some extent.

The stock markets up here in Canada have mostly recovered but remain skittish.

Hoping you are having similar luck,

Joe

 

I'm sorry to hear about your fall.

I drink decaf coffee exclusively now and also bought some decaf tea. Is that too much caffeine? I know it has traces. The decaf coffee costs more for equivalent quality but I like it. Had to buy a second coffee pot too.

When I had balance issues in the past, I carried a walking stick (Shillelagh someone brought back from Ireland). You can't really lean on it, but it does help give you a sense of balance. And it makes a good weapon! Doesn't look like a 'cane' either.

Keep on walkin'!

 

Thanks Wobbles - I admire your courage with getting out with a cane; hopefully you don't need that as much as you did. I'm hoping the John of Ohio recipe and stopping coffee (and the sugar/cream that was part of it) will get me going in a positive direction. Also adding more exercise.

Yes, same here with the markets -up; everything is so short term now and news reactive but maybe we can get some stability (and a break from the steady negative news flow) and upward progress over the next few weeks anyway. I like short term trading but at this point, I'd rather see the market stabilize (no further degradation in the financial systems) and get some long term money coming in with a slow steady creep up (buy the dips).