I've been in a quasi-remission mode for a while, and it took a loooong time to get there. Tried a lot of things, and finally hit stride last year.
Here's a breakdown:
Came down with this in early 2005. Started with a virus, and was exacerbated by head trauma.
Medical intervention. Started with a GP, then an ENT. ENT thought it was neurological, so he sent me to a neurologist. Found a few things after testing with the neurologist, but nothing real significant. Went to another ENT, who also thought it was neurological. Wife found me a good neurotologist, who was pretty sure I had Meniere's. By that time, I had lost my career, and the neurotologist actually advised me not to continue in my career, as it required a lot of travel and unusually long hours. He felt I could improve, but first things first.....I needed assistance to walk for some of that period.
Treatment consisted of low salt diet, dyazide, and valium for that year. Was partially disabled during that time. Did a lot of freelance writing for several publications. Some days, I could get out of the house and do some things. Other days, I couldn't do much. Balance was real bad.
The neurotologist who thought I had Meniere's died in late 2005. Went to another neurotologist in early 2006. He agreed with the previous doctor's diagnosis. I had also demonstrated during doctor visits that I had an audible clicking in both ears, which could be heard from as far as 15 feet away when it was firing full tilt. Suggested to the doc and audiologist ---through my own research----that I probably had a palatal myoclonus. Both would not confirm it for me. They just didn't have that kind of training background. As I've learned, that's part of the territory with these ailments. The difference in training between doctors can be staggering. Some are very well meaning, but just don't have the training background. Others are closer to the cutting edge.
Ok...back to the grind. Tried some acupuncture during the Spring. It would relieve pressure for a day or two, and then the symptoms would creep back in. As far as further conventional medical treatment, pretty much the same treatment plan, but added VRT and the Meniett during the summer of that year. Improved a little bit. Started working part-time out of the home in early 2007, and also went through some more alternative therapies. Was able to do some jogging for the first time since late 2004.
Went for another opinion with a neurologist during the summer of 2007. MAV diagnosis, and felt Meniere's could be lurking in a parallel fashion. Confirmed palatal/stapedial myoclonus. Verapamil & Serc were prescribed along with low dose valium and a low salt diet. Dropped Serc after a few months. Responded well to verapamil. Re-entered full-time workforce---albeit at a drastically reduced pay scale in a slow paced occupation---in early 2008. From the summer of 2007 to March 2008, went from 120mg to 240mg of verapamil. To this day, along with valium, it has been the most effective drug for me thus far.
Ran into some problems in March 2008. My ear tubes came out (for the Meniett), & I started experiencing an increase in ear pressure. Equilibrium and balance started going downhill. Neurologist thought it could be indicative of a fistula, but he kind of disappeared after that. Sought another opinion in May 2008.
Going into the May 2008 appointment with the new doc, I really felt MAV was at the crux of the problem, but I thought it could very well be an ailment accompanied by SCDS, not Meniere's. Everything just seemed to point to it. I really felt I'd go to that appointment, get a confirmation of MAV, but also with a CT scan of the temporal bone to point to SCDS. Appointment with new doc went "ok". He felt it was MAV, Cervicogenic Vertigo, possible SCDS. He felt physical therapy was the best conventional treatment for me, and scheduled a VEMP test. Didn't think he could do much for me outside of that. I decided not to pursue physical therapy, and canceled the VEMP test. I'd had a VEMP test in 2007, which came out clean.
On the advise of a few fellow Meniere's patients, I went to a new neurotologist during the summer of 2008. Went into the appointment with a healthy dose of skepticism. Gut instinct told me this was the end of the line.
I was wrong.
Within 10 minutes of the 40-45 minute appointment. I knew I had the right doc. Whereas in the past when I silently finished the sentences of so many docs, this doc was a step ahead of the curve at all times. Completely and totally professional to boot. He confirmed the palatal myoclonus diagnosis. He confirmed the MAV diagnosis. He confirmed the cervicogenic vertigo diagnosis. He was skeptical of Meniere's, and scheduled a battery of tests. Started me on a disciplined physical therapy regimen with a great, super sharp PT.
After testing, the diagnosis was MAV, Meniere's, Cervical Vertigo, & Palatal Myoclonus.
New Treatment Plan:
Verapamil - 240mg
Effexor - 37.5mg
Valium - As needed
Low Salt Diet
Intensive Physical Therapy
Big improvements since then....at the ripe middle age of 45.....and after several years of struggle.
At this point in the long circuitous journey, I now run 70-90 miles per month. I've actually been able to run a few sub-12 minute 2 milers. Strangely enough, I know I'm capable of going faster. Those were **not **done at 100% maximum output. My weight was also about 190 pounds. If I can get into the high 170s---which will be a task...LOL---I'm somewhat certain I can flirt with the 11 minute barrier on a real good day. My wife and I will spend our 20th wedding anniversary in the North Carolina mountains where Lance Armstrong trained after his initial surgeries and recovery from cancer. Supposed to be a beautiful, almost utopian place. Hope to get into the high 170s at that point, come home, and break that 11 minute barrier. Planning to run a half marathon in September.
Besides the running, I do about 6,000 crunches per month. I do a lot of work with exercise/resistance bands instead of weight training. It's nice to be "physical" again!!!!
Working full-time is not a problem for me anymore, although I'm not 100%. Still looking for that completely symptom free state of nirvana (LOL). What's more, hoping the economy clears up a bit so I can re-enter my previous occupation, but not at the same level I was before. I'd be pleased with 2/3 - 3/4 of the salary.....not the 1/4 I bring in now.
Lots of potential......lots of hope.
Hang in there.