Two years ago I posted a few blog posts about my ongoing battle with advanced-stage Meniere’s Disease. I wanted to give you an update on my fight in this third blog. If you want to know the background behind my illness, read here:
Last year was a pretty good one for my Meniere’s, all things considered. I felt strong enough to drive my truck and a new RV out West to New Mexico in April of 2015, though I was limited to about three hours of driving each day. Exposure to motion and light has a cumulative effect on my Meniere’s, and by the time I have fought traffic, speed and the overall bumping motion of travel for a few hours, my body and brain has had enough. Last year I decided to break up long driving trips for the sake of my head. I get so worn down by motion that I simply cannot safely drive past a certain point in any trip. I never know when that moment will hit me, so I break up driving into segments.
Las Cruces, New Mexico is 680 miles to the west but it took me six days to get there — about the same speed as a one-horsepower stagecoach, I reckon. I camped in state parks and Walmart parking lots about every 120-150 miles. Along the way, I lost two days due to resting; days in which my vestibular system needed to recover from the previous day’s travel. This is one thing I have discovered about traveling with Meniere’s Disease: I have to add rest days to any trip in order to best absorb the motion of travel. I can no longer travel more than two days in a row without it affecting my head in significant ways.
By moving to New Mexico, I hoped to recapture the better feeling of the desert climate that I experienced in 2013. A combination of lower humidity and less-dense air (altitude) seemed to placate some of the most severe Meniere’s symptoms, including vertigo spells. But since I camped out West in 2013 I have entered a worse stage of the disease and the climate didn’t affect me this time the way I had hoped. Yet still, I spent another six months living in the mountains on land I purchased and enjoying the beauty around me.
During my time in New Mexico I went through a physical therapy program called vestibular rehabilitation. Dr. Rachel at Back in Action Sports Therapy in Alamogordo, NM worked with me twice a week to “re-train” my brain to read my faulty balance signals differently. I cannot recommend this rehab enough for Meniere’s patients. It was tough to endure but it helped me tremendously. After almost four months of balance training — eyes open and (ugh!) eyes closed — I felt better than I had in two years. I no longer leaned right to counteract leftward pulling from my brain. I learned to disregard most of the faulty signals my brain was getting from my damaged inner ears. I no longer needed a cane to walk steadily!
By September of last year, the vertigo was minimal thanks to the steroid shot in my left ear the October before and my walking was steady and fairly balanced. I still had tinnitus, occasional balance issues and trouble getting around in the darkness (sight is SO important to balance!), but I felt that I could manage these things much better. I even moved to tropical Louisiana to buy my first house and live in a different climate. I felt good!
When the “Juice” Wears Off…
This year has seen a gradual reduction of the steroid shot, leading to a full return of my vertigo symptoms. I knew when I was injected with the steroid in my left ear that the shot was intended to be one of three. Sadly, finances forced me to only settle for one shot. I couldn’t afford another one and my temporary health care policy wouldn’t even cover the shot I received. So I had to hope for the best!
The vestibular exercises I was taught in New Mexico have also lost their settling power on my system, perhaps because the vertigo is so bad.
And so I continue to fight the illness that will not leave me. My wife and I found a doctor in Little Rock, Arkansas, who specializes in diseases of the inner ear. We have an appointment to see him on September 2nd. It is my hope that he can set up a treatment schedule for me and, I hope, give me a referral to go through vestibular rehab refreshment program.
As for a steroid shot, we’re going to ask. But the last ENT we saw doubted that it would do me any good. But then again, he also said we needed to see a specialist because Meniere’s Disease was not one of his specialties (contrary to what we thought and what the internet recommendations said!).
Finding a good Meniere’s doctor is not very easy. They are few and they are scattered. My wife and I went to a doctor recommended by a Meniere’s website only to find that he doesn’t really know any more about the disease than the average ENT. He can treat early stage Meniere’s but not my severity. He recommended a neurootologist, a specialist in the field of the inner ear nervous system and diseases. They have an additional two years of medical school in which they focus in on special conditions. The closest ones to me were in Little Rock, AR, and Baton Rouge, LA. And so we’re headed north to Little Rock.
Some really good news is that I now have Medicare to handle my health insurance. Back in 2014 I was found to be disabled by Social Security and I started receiving monthly payments in 2015. In July of this year I became eligible for Medicare Part A and B. Because of Medicare, I can treat my illness. My Healthcare Marketplace plan with Humana wasn’t going to allow me the freedom to see the specialists I needed to, nor would it cover the high costs of medical care. I was stuck and Medicare is giving me a lot of hope of getting better. Being legally disabled stinks, to be sure, but it has allowed me access to the medical care I need to keep fighting Meniere’s Disease.
My Current Battle
Right now I am fighting constant vertigo, confusion of sight and balance, and a strong sensitivity to light. I walk with a cane and generally have about two hours of “good” health each day after I wake up and before the symptoms catch up to me to render me disabled. I sleep late because my body seems to respond better to more rest than less rest. Of course, too much rest can rob me of the two good hours I long for each day!
The thing I cannot stress enough is this: Meniere’s is a frustrating disease of unpredictable symptoms. What worked for me one day fails me the next. So it is impossible to find routines that work consistently. It is an everyday battle that is exhausting. Sometimes I find my will to fight it to be lacking. I just want to give up. Other days I want badly to overcome my symptoms and be victorious.
I have resumed taking vitamin supplements in an effort to regain some vestibular function in advance of my doctor’s appointment. I take a daily dose of Vertisil, Vinpocetine and a Lemon Bioflavanoid. They may be helping me, though I only have two days worth of results so far. But I have felt a little better the past two days, so… I keep on fighting!
That’s the latest. I really appreciate your prayers and well wishes. God is with me in this battle and I have never doubted His love and care for one moment. In fact, I see this struggle as a chance to glorify Him through an attitude of faith and through my hope in His help. I may be broken but the Holy Spirit really likes to use cracked vessels to shine the Light of Christ into a darkened world. I pray that He uses me in such a glorious way!