A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Tuesday, June 14, 2011

Embarking on a New Experiment (Kind of)

After nearly a week of feeling like crap and then having a mild vertigo attack last night, I broke down and called The House Ear Clinic this morning.  I went to their Orange County clinic in December for a second opinion as I struggled with whether or not to continue with gent treatments.  Ultimately, I did continue with gent and have had good control of my vertigo since the end of January, though I have had a couple of mild episodes since that time - this week's being the worst.

About two years ago, shortly after I was diagnosed and failed to improve on diuretics and a low sodium diet, I brought a couple of studies in to my OTO appointment to see what he thought.  That day, he happened to be out of town, so I saw one of his fellows.  The fellow was visibly impressed with the conclusions of these studies and willingly prescribed a course of acyclovir for me which was consistent with that in the studies.  Within a week of starting the drugs, I noticed a significant change in the pattern of my attacks.  During weeks two and three of the therapy, I had no vertigo.  This was the first time since my first vertigo attack that I had gone that long without the spins.

According to the study protocol, by the 4th week I began tapering down my dose of acyclovir very gradually.  Unfortunately, within 48 hours, the vertigo returned in force.  I called my doctor's nurse and the fellow agreed to extend the high-dose therapy for 3 more weeks and lo and behold I experienced the same pattern: no vertigo on the high dose but, within 48 hours of tapering, the vertigo returned.

When I followed up with my regular OTO after my little experiment, he poo-pooed what I had observed.  He said he was familiar with the literature, but that it was not conclusive and he believed what I had experienced was simply a placebo effect.  I disagreed, but he was not willing to prescribe anymore antivirals for me.

Still being new to MM at the time and having confidence in him based on his bio and the high praise I had heard from several other local ENTs, I proceeded with dex injections and ultimately gentamicin injections, the latter finally offering me semi-permanent relief from the vertigo.  During this time, I pursued the second opinion at House and it was during that consultation that this new OTO suggested a trial of Famvir, a newer class of antiviral medication that is supposed to be superior to acyclovir.  Because I was mid-gent treatment, I opted to see the gent through first.

Yet, through it all, I still feel like there is something systemic to my MM and I often feel like my body is somehow in overdrive trying to fight something off.    Just this week, I went through the usual host of feeling like shit, ear buzzing, terrible brain fog, and complete exhaustion.  As usual in the old days, last night it culminated in a vertigo attack, albeit a mild one.

So I got on the horn this morning to House.  I spoke with one of the nurses and asked if the doctor I saw six months ago would be willing to prescribe a course of Famvir for me.  I explained I want to transfer my care up there and that I would make an appointment whenever he suggested.  Within an hour, I got a call back from one of his colleagues, as he was in another clinic today, saying he would gladly call in a 3-month course of the drug for me.  He recommended I make an appointment with the other OTO in 3-4 weeks as, by then, I should know if it is helping me or not.

Wow.  So nice to be heard and validated.  As much as I respect my usual OTO here, I often feel as if I have to do my own research to understand what my options are and then advocate for them.

I am excited to try the antiviral approach again.  At least if I don't notice any improvement, I can be sure I gave it the best college try possible.  Will keep you all posted!

1 comment:

  1. oooooh, that's very exciting! can't wait to hear how it goes! good luck to you!