Lin, known in the blogosphere as LinLori, has a very interesting blog.  You can find her at linlori.com.  Lin is a mother of 2 toddlers, and wife to “MarvMan” who is currently active duty Navy.  This is her story of being diagnosed with Meniere’s and the treatments she has tried.

When Nothing WorksAs I write this post, my mind is swirling with all sorts of things. My kids are getting ready for me to start homeschooling them, we’re getting ready for a cross-country move, I’m trying to clean out my house of unnecessary stuff, we have to figure out how to get two vehicles from one end of the country to another with only one of us being fully able to drive 10-12 hours a day – and of course, that isn’t me.So I’m hoping that what I write makes sense, will help some, or will at least be something other Meniere’s friends can commiserate with. We have nothing if not each other.

My first attacks actually started while I was active duty Navy. I’d been crouched under a dark aircraft for a good couple hours working on an engine and when I came out into the bright hangar bay, I got dizzy. It was easily brushed off as, “A head rush. Clearly I was under there too long.” But they continued.

And of course, before seeking a doctor’s advice, I got pregnant. And so any complaints of dizziness were brushed off as, “Well, you’ve got double the amount of fluid in your body right now; of course you’re going to be dizzy.” So it continued and I thought it was just a bothersome thing I’d have to deal with because, clearly, my body was more sensitive to how much fluid was in it than most people.

It wasn’t until after my separation from the Navy (honorable, just early for parenting conflict reasons), and after our second child that my husband said, “You know, I think you should go have this checked out.” So I did.

The doctor said it was BPPV – benign paroxysmal positional vertigo, as we all know – and there wasn’t anything he could really do about it, except give me some exercises to do and tell me to come back if it got worse. Well. Thanks for that, doc.

And then we moved from Washington to Nevada. For a time, I ignored the “spells,” as I called them. What else was I to do? But,  of course – they got worse.

So it was back to the doctor with me. This time a new doctor, on a new base. He repeated many of the same in-office tests and checked my ears, cleaned them out, and gave me a referral to an ENT.

The ENT agreed with the BPPV diagnosis initially, and sent me for balance therapy. It helped a bit, and I enjoyed the sessions and the physical therapist I was working with.

Then I had a seizure.

Seizures are, of course, not usually related to Meniere’s, but migraines are related to Meniere’s and – to all our best knowledge after over a year and a half of research and trial & error – this seizure was migraine related.

Thus began the experimentation into how much effect, if any, food had on my Meniere’s. This is what we learned:

MSG has an insane effect on Meniere’s for me. If a food has MSG in it, within fifteen to thirty minutes of consuming the food, my heart rate will be doubled, I will be short of breath, experiencing hot/cold flashes, and – but of course – vertigo attacks that leave me bedridden.

The label “MSG” also happens to include High Fructose Corn Syrup. So you can imagine the rage I have at those, “It’s just like sugar!” commercials. No, it is not.

Of course, salt has an effect, from previous knowledge of how sensitive I am to fluid retention. So I’ve greatly decreased my salt intake.

In addition, I, the big coffee drinker, have had to seriously cut back on the caffeine intake. I usually only have a cup in the morning, and perhaps one in the afternoon or one in the evening. The interesting thing here is that I don’t feel as awful if I stick to grinding the beans myself and brewing it in a press-pot. I have yet to figure out the connection there.

What other treatments have we tried? Well.

Diuretic – The diuretic does seem to help, especially around my monthly cycle.

Steroids
My first ENT had me on so many steroids…

Oral Prednisone – This. One. Sucked. I felt nothing but the side effects. I was moody, always short-tempered, tired, loopy, and I gained seven pounds.

Ciprodex ear drops – This was after the ENT installed a tube in my ear drum in order to better administer the ear drops. I’ll cover the tube in a moment. The Ciprodex really didn’t seem to help all that much. My inner ear was incredibly sensitive to the temperature the drops were at, and it seemed to actually spark a vertigo episode rather than help any.

Steroid injections – I don’t remember the name of the steroids they injected through the tube, but these? Did nothing.

So when I got sick of my first ENT running up the insurance costs for steroid treatments, I found another ENT. This one now has me on

Triamterene – water pill, of course
Elavil – Anti-depressant, with surprisingly unexpected helpful effects for those with Meniere’s
Meclizine – Emergency anti-nausea anti-vertigo med for when I have an attack.

Unfortunately, as with the past few days, we’ve discovered that the Elavil – a second round after a 1 month break – is no longer working.

And, thus? The search continues. I’m only 26 – there’s time, right? 😉