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.

Sunday, January 23, 2011

All My Money's On Gentamicin

I promised to write about all the treatments I have tried over the last two years.  There are several.  None work for everyone, but all work for some.  My favorite treatment option to date is gentamicin.  Warning: sorry, but this is a long post…

For me, vertigo is sometimes a spinning sensation, but usually it is much more like being on a dinghy in a hurricane.  It feels like severe motion sickness with varying degrees of waves and hairpin curves.  My eyes always dart back and forth (nystagmus), making it difficult to keep them open for any length of time.  Sometimes even keeping my eyes closed is miserable, so that is the worst kind of attack.  Every attack is slightly different and certainly some are more severe than others.  But they are always debilitating to the point of barely being able to walk, if at all.  I keep a small bucket next to my bed for the “rogue waves”, those waves of legend sailors report as coming out of nowhere and virtually swallowing large ships.  I can count on one hand the number of attacks I have had so far where I have actually vomited, but when I have they were marathon periods of dry heaving for 8 to 12 hours at a time.  Fun stuff.

When I have not responded to one treatment or another over the past two years, I have a pretty regular pattern of vertigo: every 3-4 days, for 6-12 hours at a time.  I generally have a prodrome of symptoms that include increasing pressure and fullness in my right ear and a deepening tone of the constant tinnitus I hear until it reaches a buzz that sounds and feels like a very loud gnat in my ear.  I also get very foggy-headed and have zero tolerance for noise, even though my hearing worsens in the days and hours before an attack.

It was discovered decades ago that gentamicin, an antibiotic used for severe infections caused by gram-negative bacteria and streptococcus aureus, is also ototoxic.  Its side effects can include hearing loss and vestibular disorder caused by the damage the drug can do to the hearing and vestibular hair cells in the inner ear.  Some either crazy, or perhaps compassionate, doctor decided to inject the drug directly into the middle ear of Meniere’s patients where it can cross the round window membrane and bathe the entire inner ear where these little hair cells reside.  Fortunately, the vestibular cells are somewhat more sensitive to the destructive effects of gentamicin, so with low doses hearing loss can be avoided or at least minimized while hopefully just enough vestibular hair cells are destroyed to prevent the ear from causing vertigo.

So after trying, and failing, a handful of nondestructive conventional and alternative treatments to control my vertigo, I had my first transtympanic gentamicin injection on March 25, 2010.  I had one or two vertigo attacks in the 10 days that followed, but then a constant, but very tolerable, degree of imbalance set in.  Let’s just say I couldn’t pass a field sobriety test for about a month afterward.  But I was not nauseated and I really started to feel great for the first time in a year.  I forced myself to walk daily to help my eyes, good ear, and muscles compensate for the loss of balance signals now being sent to my brain by my right ear.

That first shot gave me eight months of freedom from vertigo.  I had some minor spins in the first couple of months and had to take a Valium or two to settle them down, but I had all my confidence back and did anything and everything like I did before.  I still had varying degrees of ringing, mini-spins on occasion, and could tell my ear was still cycling through the attacks at their usual rate, but I just didn’t get vertigo. 

As I had read and my doctor had warned, the vertigo came back.  No one knows why or how this happens, but it is well-documented and common sometime between the 7th and 9th month post-injection.  While terribly disheartening at first (and that first attack was one of those marathon barf-fests), I knew I would only need to get in for a touch-up shot which should work again just like the first shot.  So after begging the doctor’s nurse to squeeze me in two days later, on November 18, 2010, I got a second shot. 

I waited patiently for two weeks.  Nothing.  My symptoms, although a tad milder, continued.  I continued to wait out the six weeks for my next appointment.  At that November appointment, my doctor was clear: if the 2nd shot didn’t work, we were going to have to have a long talk.  He was concerned that too many gent shots could cause a “dead ear.”  So with that, my husband and I decided a second opinion was in order.  I will try to remember to write a separate post about that experience.  But, in a nutshell, we had prepared to move forward with scheduling surgery (also a topic for another post).

December 30, 2010 rolled around and we went back to my doctor.  My hearing was stable (10-15% loss), my symptoms were still terrible, and he agreed to another gent shot.  These, for me anyway, are really so easy and painless, that I jumped at the opportunity to try again.

It’s been three weeks and I have had more good days than bad for the first time since the beast reared its ugly head two month ago.  I have still had one or two vertigo attacks a week, but they have been somewhat shorter and quite a bit milder.  I still cannot get up and function through them, but with the help of Valium I can generally sleep through most of the attack. 

I go back to the doctor on Thursday, January 27, 2011.  We shall see how my hearing is (feels the same) and how I feel between now and then.  A lot will depend on the next few days whether or not I feel the need to have another shot this week.

I hinge a lot of hope on gentamicin.  There are many positive studies and accounts to support its use in the treatment of MM.  I am keeping my fingers crossed for another long remission.  Studies on the longevity of the treatment are somewhat slim, but some suggest that gent can in fact provide permanent vertigo relief for some people.  So far I keep falling into the small minority of failures, but I hope my luck will change.

1 comment:

  1. fingers crossed it works for you! i know that feeling of falling into that minority of failures. i seem to hit that percentage quite a bit too. now why can't we hit that small percentage for things like the lottery??