So here's my MdDS story...
I went on a cruise.... something I've done before with no issues. Only this time, I flew to get to the port and flew home. As I said, I've done the cruise thing before... only usually I drive to the port. We were set to go to Jamaica and Cayman Islands, but then Hurricane Sandy diverted us to Costa Maya and Cozumel. I was disappointed at first... I didn't really want to go to Mexico, but I actually really enjoyed Costa Maya. I had no issues in either of these ports, walking or feeling "weird"... It was the last day on the ship when we actually were feeling the effects of Sandy on the way back to Miami. Still, I'd been in rough waters before with really only a few days feeling that still on the ship way once off. Day 5 was positively the worst. I felt like I'd gotten an inner ear infection or something. Finally after about 2 1/2 weeks past, my bff told me that she'd had something similar, and I needed to go see a doctor. So I went to the local "doc in the box". (That's what we call them here) and she prescribed meclizine and Nazonex.... it is allergy season after all. And she said if I wasn't feeling better in a week to go see my Primary Care Doctor.
One week later.... yep, I went to see him. The meclizine did nothing. My PCP prescribed Diazepam. Said to call him back in a week and let him know if it helped. I thought it did at first. I was able to concentrate better at work, and actually feel a little productive, but it still wasn't gone. When I told my PCP this, he upped the dosage on the Diazepam. It didn't really seem to make that much of a difference. The next week I called him, and he told me that he thought I should see an ENT... Diazepam apparently is pretty addictive stuff.
Around this time I also started seeing a chiropractor/ acupuncturist, Dr. B. We disgust many topics concerning my health including exercise and diet. He suggested that eating Primal may help my body reset. So, as of January 1 I've been eating according to the Primal Blueprint (some call it Paleo). Dr. B told me my first acupuncture session would leave me feeling a bit like I had the flu as my body ridded itself of toxins. Actually my first acupuncture session left me with a major migraine. The kind that I could usually get rid of with just a dark room and sleep.... it lasted through the night, and woke up to it as well. I had to break down and take some ibuprofen and sleep more. I felt really sick.
The next week I went to see the ENT, and he told me he was going to send me for a bunch of hearing and inner ear testing, but that I needed to stop taking the Diazepam and allergy meds for 48 hours before the testing. No problem... I stopped actually 4 days before, and really didn't notice a decrease in my concentration. That was good. Right?
The inner ear testing revealed nothing except one little blip that I didn't hear... very low. Everything else appeared normal. So the ENT suggested that it was Hydrops.... I thought Hydrops? I've never heard of that, so I looked it up... Ménière’s disease???? I don't think so... I knew what that was. My Grandpa lived with it for many years. I knew that wasn't it. I found the vestibular.org page and began reading. I found the Secondary Endolymphatic Hydrops(SEH) page, and thought... oh..... maybe that's what he meant (this is also referred to as Hydrops)... the symptoms seemed closer to that. Then I read about Mal De Debarquement.... that sounded even closer to what I was experiencing. Constant Consistent Unbalanced, pulling, rocking sensation. The ENT wanted me to get an MRI.... so I got that too. It revealed only a small 3mm non-conclusive shadow on the right side of my brain.... yeah that only means it could be an old head injury, or old migraines, or I moved slightly during the MRI. Funny that all the pulling and pushing comes from the right side of my body. Okay What's next?
Now I meet with the Physical Vestibular Therapy Doctor. She does all sorts of Balance testing on me, and confirms I have MdDS. She gave me some information about it, and some exercises to do daily. A few I feel I have mastered in the respect of they don't make my symptoms worse. Others, I last only about 4 seconds doing. She says training my brain to read my joint signals properly is the goal. We also discussed diet and triggers that make the unbalance worse. She also said the Primal Blueprint was the way to go. I met with her again today and she added a few more visual exercises for me to do daily. I will meet with her every other week for the next 2 months.
I've seen very little improvement in the past few weeks, but it is worlds different from Days 5-14. I have some okay days where the symptoms are less noticeable. I find when my stress is low and I don't sit in front a computer (as required by my job) for hours on end its more manageable. Being outdoors helps a great deal too. Busy shopping malls, grocery stores and florescent lighting make it much worse. Riding in a car seems to be my greatest relief, and I feel normal... almost. Long trips aggravate my symptoms more once I get out of the car. Short trips to the Farmers Market and around town are the best. Walking outdoors in the sun is pretty relaxing and symptoms are less noticeable. It's always there though to some varying degree.... that pulling/pushing and sometimes pulsating feeling on my right side. I keep hoping I'll just wake up one day and it won't be there. I find mornings are better... it is more noticeable as the day goes on. My body gets tired from all my muscles overcompensating I guess.
I'm continuing on with the chiropractic and acupuncture treatments. It does seem to offer some relief for a few hours or days now. I was going every week, and now down to every other week. Maybe its just helping me relax more... Not sure. I just know I'm ready for another treatment.... every week would be better, but insurance is a whole other topic.
Today, I told my PT Doctor, that I don't know how much longer I can put up with this... I was giving it a deadline.... 3 more months. She said give it at least 6... she could see some small progress, it is just going to take time. TIME???? I do not want to be one of those people that have this the rest of their life. I know the average is 9 months to a year for most people, but really???? I've always been a quick healer, I've made up my mind. 3 months!!!!
I'll keep you updated. In the meantime, I'd love to hear from anyone that has similar issues. We could compare notes. I'd like to know what has or hasn't been working for you. See ya in Cyberspace!
