Greetings from Houston, Texas

...Keep in mind that wheat/breads are very high on the glycemic index. Going wheat free would definately help if you have metabolic syndrome and that is effecting your menieres. But there are other foods that are high on the index that may be coming in and out of your diet that you are unaware of.

...I have both metabolic syndrome and a gluten allergy and I had to address both to get my symptoms under control. But also keep in mind that my main concerns were vertigo attacks. I still have tinnitus and fullness.

Rick

 

symptoms are subsiding now... I missed work yesterday due to dizziness and fog - I could not drive safely and so I went around the block back to my house and layed on the couch most of the day. I was bumping into walls and reaching out to grab things to steady myself when I walked around, so I am glad I was able to take a day off.

Today I am feeling much better. The screaming tinnitus is down to about twice what it has been in the last 2 months, pressure/fullness is down as well, and I can hear/feel my pulse pounding in my affected ear. So this is good, at least for me. Going to make the trip into the office here shortly and hope for the best.

I have been keeping careful track of everything I've eaten in the last month - I should be able to isolate the (food) culprits easily.

 

What helps for me, when I'm not sure about something, is to eat it with nothing else, then wait three hours. If you do get dinged there is no doubt about what caused it. I started doing that a few weeks ago and it makes it much easier to figure out what I can eat and what I can't.

btw - Did you try Alka-Seltzer Gold? If your attacks are similar to mine, then that will help.

I challenged an organic rice cereal with chocolate yesterday. I had eaten the same cereal without chocolate with no effects, but the chocolate (or the caffeine in it) kicked my butte yesterday morning. A few doses of ASG though, and I'm back on my feet again.

Hang in there. It ain't easy and we all slip one way or another, but we keep going.

 

Back to ringing, fullness in the ear, and 50-50 able to function... Diet hasn't changed since the last flare-up and reversal on Monday, so this is perhaps an emotional response to the elevated stress and anxiety of having to worry about this bs in the first place? Going to try to find the Alka-Seltzer Gold today on my way to my first gig since October.

Found the ASG - looks a bit high in sodium, and also has a warning on it to discuss with Dr. before taking if on a sodium-restricted diet. SO..... I will wait until tomorrow to take this, just in case the extra sodium would put me over the proverbial edge... I can hear out of my left ear well enough to play, so I will just stuff cotton in my right ear to keep the distortion from driving me crazy during the gig.

Update - made it through the gig w/o issue. It was a low-key 2-hour gig at a private party, held at one of these old dance halls Texas is famous for, Coushatte Hall in Bellville. Our stage volume was low, so I think that helped out a lot, and my affected ear held up ok. I could not get the tone I wanted out of my rig, but since I have not been out playing for 3 months that did not surprise me either.

The tinnitus has not subsided any today, but it is not any worse either.

I am going to try the ASG this morning, to see if that makes a difference to the ringing.

 

vikx
Did you say that JOH worked better for you once you quit the diuretic? Interesting.
mb

 

No help or relief from a dose of ASG early Sunday morning. In fact, the ringing and pressure became measurably worse within several hours. I am only today starting to feel somewhat less impacted, two days later. So, not much good news there.

Back to the elimination of specific food items.!!!

 

Bummer, sorry. I don't think I'll recommend that as a test anymore, though it is the only thing that will keep me on my feet when I encounter a trigger food.

I don't remember what all you've eliminated food-wise, but it might be time to take it to the next level. When I eliminated wheat, I felt great for about a week. Then all of my other food triggers took over. I'm still much much better without the wheat, dairy, soy, chocolate, alcohol, vinegar, etc, etc, but I'm not 100%.

 

Well yes, I do have a few things left to eliminate... :

I am going to quit caffeine all together, for starters. This is likely to present a significant challenge, as I have enjoyed coffee since about age 10....

 

Hold tight. There may be a significant post regarding this very issue in the next day or so.

 

Well, I am thus far singularly unsuccessful in giving up caffeine. Apparently, it is quite habit-forming.... But I am not giving up just yet.

Recapping the situation since December, going off wheat has helped a lot. The first 3 JOH supplements are also going well - and my symptoms are less severe now than they were going into winter.

I've played steel and 6-string on 2 dates in the last few weeks, the last one an outdoor show at an icehouse that went 4 hours with 2 short breaks. Although these gigs were much more physically tiring than I was used to, my ear held up well and I was able to keep up my parts, mostly. I am booking a few more dates coming up, and will have 2-night gig in Galveston this coming April 16/17. So good news on the steel guitar playing front.... It is my life long ambition to earn my living as a musician, and I had all but given up hope for this a year ago. I don't practice as much now as I used to, but since I have started feeling better, I've started playing more for fun - this helps clear the cobwebs and should help me to get back on a daily schedule.

We've been skiing twice already this year, with some pretty good results. No significant derailment, but some anxious moments while there.

I've been cautiously optimistic since finding this forum and making these few simple changes in daily routine, now I am just on the verge of becoming aggressively optimistic....

My ENT has added a 2x daily betahistine - it is only a few weeks since I started this so no news there.

Now, they did tell me that patients with symptoms like mine report a reduction in symptoms and in some cases even an elimination of symptoms all together after 2 years (assuming they will follow the prescribed life-style changes)... I am just on the 2 year threshold now. I've cut the salt out, and slowed down on the others - but haven't eliminated them completely. I still have a daily battle with fogginess and some minor balance problems, but in general, I feel better more often now than I don't. So, perhaps a clue in there for me?

My best regards to all, and thanks for your continued support...!! Any significant changes to routine or symptoms, I will surely post here. I am indeed looking forward to getting on the right side of this 2-year thing...

JMC

 

Progress?

Hi All:

It has been a month since my last update - I am in what appears to be a leveling off period. I went no-wheat in January, and after about 6 weeks (about the time of my Feb. ski trip to Utah) I tried adding the odd piece of bread here and there. For a 2-week stretch in March I was even enjoying a scone some days with my 1/2 caff's in the morning. This lapse in diligence resulted in several consecutive days of dizziness and confusion within a week, strong enough that I could not make it in to the office to work.

So, I am strictly non-wheat now: Not even so much as a crouton in the last month.

Sadly, I am losing my battle against caffeine right now - it is too strong a habit for me to break without an external catalyst. It is definitely the hardest habit to break, I must say. Short of an all-out attack, (which makes it pretty easy to avoid caffeine for a few days but obviously costs dearly in other ways), I can not seem to give it up.

I spent last week in Austin taking an intensive training course 7:30 - 5:30 daily, and I found myself enjoying a 2/3 cup of full-strength instead of my normal 1/2 caff in the morning. So far, I do not feel any worse of for this - but it was only last week that I slipped over this edge. Up till then, I was pretty careful to stay at no more than 2 cups of half-strength coffee per day.

No significant symptoms to report in the last few weeks - that's the good news. I have days when I wake up feeling like I have a flu or a bad head cold coming on, but then it goes away towards the afternoon.

I've doubled up on the L-Lysine, now I am taking 3,000mg/day. I was only 1,500 for most of Jan-March.

All in all, a good first quarter for me. The JOH and non-wheat seems to be working. I've been able to take up a few gigs lately, and I will play two nights this coming weekend at the Galveston Co. Fairgrounds. I have noticed that it takes me much longer to learn songs and specific parts these days - but I can still learn them, so I am happy with that.

Once again, my sincere thanks to all for your help and encouragement... I am thinking much more positively about this now. It seems to be almost manageable.

But I wonder, is that the best way to approach it? I wonder if a more focused, ninja-like approach would produce more dramatic results?

Right now I am doing Chiropractor treatments twice a month, the first 3 JOH supplements, 2x 8mg beta histine daily, and 1x 50mg diuretic. Along with NO wheat, mostly salad, fruits, and proteins to eat, and 3-4x weekly exercise - either weights or treadmill, or both.

I am also not the least bit diligent in avoiding alcohol or stress. I am working on that, however....!

All the best,

JMC

 

Another month gone by, and still holding steady. I had a very short dizzy spell on Saturday afternoon, but it passed quickly. I think it may have been stress induced, as I have been pushing it pretty hard from all sides lately - but no real damage done.

No change to the regimen, and no change in diet. For the most part, I feel ok. I've been out playing some steel guitar gigs in the last month or so, and I've just returned from a weekend visit to L.A., where my youngest daughter lives and goes to school.

But I don't feel "good" yet. I am making this my next goal - to feel good more often than not.

Best Regards and warm wishes for continued improvement to all!

JMC

 

Like you, the diet helped tremendously. I could cope and work, but I didn't feel "good" either. I didn't feel "good" until I started the Nystatin. Now I feel good. Since the diet has helped you, I'll suggest that you ask your doctor about trying a round of anti-fungal medication.

Nystatin is non-systemic (meaning it has less possibility for liver damage than the systemic anti-fungals). I'm taking it 3 times/day for a total of six months, and I've modified my diet somewhat to eliminate sugars and carbs.

Two weeks into taking the Nystatin was the first time in several years that I actually felt GOOD again. A month in, and I still feel good. And I've started adding foods that I've been avoiding back into my diet on a limited basis.

I've been eating some Mexican cheese dip once every couple of weeks with corn chips, and that has gone pretty well. Italian sausages are ok with me now. I had some chicken with marinade and iced tea (caffeine!) this past weekend with no ill effects.

The pizza and hot wings I had two weekends ago didn't work out as well, but no major attacks and Alka-Seltzer Gold kept me going, though I was extra tired for a few days.

Look for posts from Saved - he's going through the same thing and he's had good results with the anti-fungal meds.

 

OK, Papajoe,

Are you still recommending the baking soda test? I am so tired, really exhausted. And, I have not tried the elmination diet, but I am ready to begin.......headaches that will not stop, can work but when I get home all I do is sit on the couch, got on Prozac. I don't think soduim is a trigger for me. So, I am will to try your test after work.

2 teaspons in 4 oz of water, right?

KT

 

Not really recommending it anymore. There are too many variables. If it helps, its an indication that you might be having food issues, but if it doesn't help that doesn't mean that you're not. But if you're not sodium sensitive, give it a shot, one or two teaspoons / 4oz of water.

In my case the food sensitivity wasn't an immune system problem, per se. The yeast infection in my gut allowed "leaky gut".

The only way to tell for sure is to try the elimination diet. But I've had some thought changes on that as well. While it's best to do the full elimination diet, if you're not up for that, try cutting out wheat and dairy for one month and see if you improve.

 

Hi again, everyone:

Today I am happy to report that I am definitely feeling good more often than not for about the last 6 weeks now.

(I am not counting a recent weekend of working up in Dallas where I made a most unfortunate choice for lunch on Friday, and spent the rest of the weekend with flu-like symptoms which finally subsided the following Tuesday. I was afraid it was yet another variation of a Meniere's attack, but it turns out it was a case of food poisoning! All the same physical discomforts, but without the vertigo. It was almost a relief to find out I had merely been poisoned by a careless restaurant...!)

The bad news is, my pulsing tinnitus is more noticeable now, and the high-pitched whining tinnitus is also "louder". And occasionally, I will feel a throbbing in my affected ear that is accompanied by a sharp pain. This is new, but it only lasts for a few seconds, at most.

I've been taking the same regimen since early February now:

L-Lysine: 3x1,000 MG
Vinpocetine: 2x10 MG
Lemon Bioflavinoid: 2x1,000 MG
Direnium: 1x50 MG
Betahistine: 2x8 MG

I've also recently added 2x1,000 units of Vitamin D, as my last blood test showed I was deficient.

I've been on a no-wheat, very low-salt, and very low-sugar diet since January - this appears to have made the most difference, and I don't have anywhere near the indigestion issues I was experiencing before.

I've slipped up a bit on the caffeine and red wine - two of my favorites - but so far, no serious downside that I can tell - although I think the high-pitched tinnitus could be coming from the caffeine.

I am exercising more often than not (again, not counting the last 2 weeks since the food poisoning incident), and playing some more gigs too - low key and closer to home. I just finished a 2-night stand in Texas City over the weekend. Today I was a little tired, but functional and able to make it to the office for a full day.

My concentration and ability to focus on specific tasks is somewhat diminished, but I am also going on 55 - so that might explain some of it...?

All-in-all, I am virtually symptom-free, I am happy, and I am making progress - and this is all entirely due to the information and suggestions I've gotten from the good folks here on the Meniere's Forum!!!

Best regards to all and thank you!!

 

Good news! Thanks for the update.

If you ever pass through Utah again, let me know. I can't really snowboard right now, but would be up for a cup of caffeine free tea with a fellow Menierean.

Unfortunately, caffeine is trouble for me too. Immediately turns up the dial on my tinnitus, and would more often than not leaving me feeling really bad.

I hope things continue to go well for you.

 

Good news, thanks for sharing! Caffeine doesn't bother me much, but red wine does.

If your condition starts to regress over the next few months, come on back and let me tell you about nystatin...

 

December, 2010 update:

I spent 3 intense hours on the couch last week, awaiting what felt like it would surely be a full episode to occur - but thankfully, the symptoms subsided within a few short hours and I was back on my feet soon there after. It has been almost a year since my last serious dizzy spell, and I was really sort of hoping they were gone for good.

But on to the good news:

I am wrapping up my 2010 with a 2-night stand at Shennanigan's in Texas City this weekend with the Cimarron Band, and I have a gig on NYE in Sealy, Texas with the Earl Sanders Jr. Band...

Merry Christmas to all and best wishes to everyone for a healthy, happy and safe Christmas season..!!!

Best Regards,
JMC

 

JMC

I'll echo June's post on page two of this thread about going to House and seeing Dr. Jennifer Derebery. She saved my life and gave me hope. I've been on antivirals for two years now, my hearing has slightly increased (I'm 60% in one ear and 40% in the other, and was near 90% perfect when this beast began in 1999).

By day, I'm a lawyer, and got HA's in 2003 and again in 2007 (stronger ones). I've been a drummer for the past 40 years, and after the last attack in 2007 which hit my hearing hard, I've been unable to play drums in a band context. Now I'm stuck playing electronic drums at my house and doing the Garageband thing. Doing home recording is great, but my dream of one day retiring and doing more active gigging is gone forever. I gigged all over Houston for years, mostly in blues bands, and no, my hearing loss is not from music according to the docs.

Since I am predisone responsive, which means I recover some hearing after a loss attack, and since my audiograms resemble those with an acoustic neuroma, I've had numerous cat scans and MRI's of the brain. Nothing abnormal.

Long story short, until I went to see Dr. D at House all I did was get prednisone. Now I take famvir, plaquenil, a diuretic and a potassium supplement. My tinnitus is far less than what it was two years ago, and as I said, some hearing has improved.

I was on betahistine for 2 years and had the worst attack of my disease after that. Plus it gave me the runs constantly. So I don't take it anymore.

I would recommend that you go to House and see what Dr. D says, although you've had some positive results with JOH, it seems you're still having problems. DO a search here for Derebery and read about her and past experiences of members here with her. Also, I'd recommend inhalent and food allergy testing.

And if you go to Baylor and ever see Dr. Jeffrey Vrabek, run like hell. He's the one who told me in 2003 that he wouldn't give me famvir, a diuretic or anything else because "he didn't know what I had". Had he given me famvir in 2003, I'm convinced I'd have a lot more hearing left now, based on the past two years.

I'm a former native Houstonian who has been dx'd as either Meniere's (a minority of docs think this) or AIED (most docs think this due to my audiogram, history of progression and prednisone responsiveness).

I found that early on most regular ENT's, even the brilliant ones, are mostly unequipped to deal with mm. I was referred immediately by my regular ent during the first onset to Baylor Oto Clinic. I saw two docs there for four years, who did nothing for me