Meniere’s Treatments Guest Post – Angelea

Angelea is a fellow Meniere’s Warrior and Blogger.  Visit her blog at A Day In The Life With Meniere’s to keep up with her story.

Angelea lives in San Diego, California and is a wife, mother of three, and works as a nutrition support dietitian for a home infusion company.

This is her story:

When you are miserable and living in fear of leaving your home because of recurrent vertigo, you will try almost anything to feel better and get your life back.  From the day I was first diagnosed with Meniere’s disease, this is how I have felt.  Initially, I was confident I would respond to “conservative medical management.”  The odds were in my favor if you believe the statistics that 80% of people with MM (Meniere’s) do, in fact, manage pretty well on diuretics and a low-sodium diet that includes little to no caffeine or alcohol.  Even though salt, caffeine, and alcohol in the form of a glass of red wine with dinner were the cornerstones of my otherwise healthy diet, I was up for the challenge.  Bring it on! 

Unfortunately, despite a complete overhaul in my diet that resulted in an almost ten pound weight loss, vertigo episodes lasting 8 to 12 hours continued to plague me anywhere from two to four times weekly.  During this time, my dedicated husband scoured the internet and came up with some alternative treatments for me to try.

The first alternative to my doctor’s first line of defense (diuretics and diet) was to try antivirals.  There are a few published studies on relatively large populations of MM sufferers that suggest a strong correlation between the herpes class of viruses and MM and a significant improvement in symptoms with antivirals.  My doctor was familiar with these studies, however he is not convinced of a link just yet.  Regardless, antivirals being a relatively safe class of drugs, he was agreeable to prescribe a short course of Acyclovir.  I started off following the American (Gacek, et al) study’s protocol of 800 mg 4 times a day for 3 weeks.  By the end of the first week, my symptoms seemed to greatly improve.  But the vertigo returned with a vengeance once I began tapering to 3 times a day.  At that point, I asked to increase to 5 times a day consistent with the common dosage given for other herpes infections.   Again I improved over the course of the next 2 weeks.  But my prescription ran out and my doctor was not comfortable allowing me to continue on the high doses indefinitely.  Honestly, I didn’t want to be dependent on taking pills for who knows how long and continue to live in fear every time I tried to taper to a maintenance dose.  I just wanted this nightmare to end.

The next alternative treatment was a supplement regimen promoted by a guy on-line who calls himself John of Ohio.  Apparently a retired biology teacher, he did some of his own research and claims to have gained control of his own MM symptoms by taking a plethora of dietary supplements.  His logic was, well, logical so it seemed to be worth a try. It turned out not to be for me.   First of all, I was popping pills all day.  A couple had to be taken on an empty stomach, a couple more with food.  Some were familiar vitamin supplements and others were obscure to the point that they could only be found from a small handful of on-line suppliers.  Nonetheless, I stuck with it for a couple of months.  Some followers claimed relief almost immediately, yet others didn’t notice results for months.  It all sounded really good in theory; however, I have my reservations about the supplement industry, as well as the purity and long-term safety of their products.  Time and again, private testing companies have proven that many supplements are contaminated with potentially dangerous ingredients and/or contain significantly more or less of the active ingredient than what is stated on the label.  Then there are the studies that found that Beta Carotene supplementation, for example, promotes lung cancer cell growth and folate supplementation is linked to an increased incidence of colon cancer.  Finally, if one is taking a bioactive agent in high enough doses to have a therapeutic effect on the inner ear where blood supply is low, imagine the potential effects, good or bad, on the tissues in the rest of the body.

The way I saw it at this point was that it was only my ear that had a problem, so why not localize my treatment approach?
But, at the encouragement of my husband after having had read some pretty convincing testimonials on-line, I had to exhaust one more alternative treatment: upper cervical chiropractic adjustments, aka NUCCA.  The theory here goes that the nerves between your cervical vertebrae can become compressed and this can contribute to everything from MM to MS.  Again, logically, it could be possible, especially since this is the segment of the spinal cord innervating one’s ears and eyes, among other things.  Of course there were only two NUCCA chiros in my area and neither was covered by my insurance even though I have chiropractic coverage.  So out came a boatload of money for a 3-month course of adjustments and, somewhat worrisome, x-rays.  Yes, my posture improved a bit, I think, and it was completely painless to the point that it was hard to really believe this guy was doing anything at all except laying of hands on my neck.  A nice enough (young) guy, but as I got to know him over the weeks I found him to be quite naïve and really just not very smart.  I would say it was a relatively harmless thing to have tried except for the exposure to all the unnecessary radiation and the huge hit to our credit card.  And I continued to have vertigo as bad as ever.

By this time, I was 7 months into this nightmare and I just wanted to wake up!  Back to the doctor I went and it was decided the next best course to try was intratympanic dexamethasone injections.  I got one in October with some improvement and another in November.  I made it through December and January vertigo-free and finally feeling like a normal person again.  Then the week before my son’s 9th birthday, wham!  The nightmare returned.  I went in for another series of dex injections, as well as a trial of another diuretic (hydrochlorothiazide to Neptazane and back to HCTZ).  The dex failed miserably and I developed an allergic reaction to the new diuretic.  At this point, my doctor suggested adding high doses of oral steroids to another intratympanic dex shot.  Having worked with patients on oral steroids, I was all too familiar with the nasty side effects of these potentially dangerous drugs.  Plus, I was devastated to have experienced such a wonderful period of remission followed by complete failure and misery.  I was done.  I wanted off this rollercoaster.  I wanted to move on to something that had the hope of offering permanent, or at least long-term, relief.

I had been reading about intratympanic gentamicin treatments for months by now and this treatment strategy seemed to offer the best of both worlds: it was noninvasive and potentially permanent.  I had no fear.  My life was severely limited by now and I had nothing to lose.  So on March 25th, 2010, I had my first gentamicin injection.  It was a nonevent, painless as the dex had been.  I went home and waited.  I had a couple more vertigo attacks, but about 10 days later I began feeling the telltale signs that something was happening.  My balance was very poor and I felt really weird, but the vertigo and nausea were gone!  I would say it took about 3 months to regain a pretty decent sense of balance and another month or two for my hearing to improve a bit to a new baseline.  I still felt the episodic pressure in my ear, as well as fluctuating tinnitus just as I had before with my vertigo attacks, but I could function and life went on.  I continued to work, run the kids around town, and no longer lived in fear.

My doctor was surprised I had responded after just one gent shot.  He gives a lot of them and said the average number of shots patients needed before they got relief was 2.something.  I had read, and he concurred, that the vertigo could return, usually within the first year.  And sure enough, it did.  I got 8 beautiful months of relief and then my world turned upside down once again in November, 2010.  While it was disappointing, I was not defeated.  I knew what worked and went back to the doctor for another shot two days later. Then I waited and waited and waited.  Six weeks later, I was again confined to my house and suffering long episodes of vertigo several times weekly.   This had to be one of my lowest points.  The what-ifs reared their ugly heads and I had to seriously consider surgery.  I got a second opinion at the House Ear Clinic, even though my own doctor is a world-renowned specialist in treating MM.   They had nothing particularly new or better to offer me.

At my follow-up appointment with my regular neurotologist on December 30th, I was prepared to sign on the dotted line to have surgery: either endolymphatic shunt surgery or the more invasive, but more promising, vestibular nerve section (VNS).  But my doctor was agreeable to try one more gent shot, even though my hearing had diminished quite a bit over time.  The risk of too much gent being deafness.  But this, to me, was preferable to the possibility of a failed sac surgery or to anyone poking around behind the protective barrier of my skull.

This time I waited 3 long weeks and then, success!  I have been vertigo-free since the 3rd week of January.  I still feel off-balance and have lots of little mini-spins lasting a second or two several, several times a day.  I still want to complain many days, but I can’t.  I am vertigo-free!  Hallelujah!
I don’t know what the future holds, but I am just grateful for today.

Be sure to follow Angelea’s progress on her blog A Day In The Life With Meniere’s.

Advertisements

5 thoughts on “Meniere’s Treatments Guest Post – Angelea

  1. Thank you for sharing your story, Angelea. I believe you have more surgical treatments to choose between than we have here in Sweden. I know they have been doing surgery here but rarely don´t do it these days. I´ve read about The John of Ohio regimen and was tempted to test when my vertigo was at worst point but I didn´t and reading your thoughts about this sort of treatment helps me believe I decided the right thing. I´ll meet a group of Menière-friends in a couple of weeks and we´ll talk about the different treatments we have had.It´s good to have some knowledge about treatments from “over seas” then.
    Susanna

    Like

  2. Hi Susanna,

    Thank you for commenting on my story. I am sorry you don’t seem to have more options for surgery in Sweden. Even here in the states, I believe it can be difficult to find a knowledgeable doctor trained in the various procedures.

    As for the supplements, my understanding is that supplements and herbal remedies are better regulated and that doctors actually prescribe many of them in Europe. Here there is no regulation on the supplement industry and most doctors know very little about what really is safe and what is not. I am working on a blog post now where I hope to present a summary of what is known about the various components of JOH. Stay tuned!

    Take care,
    Angelea

    Like

  3. CORRECTION: I meant to say BETA CAROTENE has been shown to promote lung cancer cell growth, NOT vitamin E.

    See what I mean about my memory?! Sorry for the confusion…

    Like

  4. Pingback: #HAWMC Day 26 – Care Page for the Newly Diagnosed with Meniere’s | Picnic with Ants

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s