I'm 28 yrs old and I also have MdDS. It is a horrible brain disorder. The worst part is that no one knows about it and there is no money for research to find a cure. I hope you get better Penny! sending hugs!
cyn

Hello! I am a 37 year old and was just diagnosed with MdDS. None of my doctors have heard of this except the ENT and he does not know what to do with me. Hang in there! I am trying to!

we all need to e-mail Oprah with our stories.
She's the only one that can influence doctors to take this syndrome on and help us find a cure!!!!!!

I've been diagnosed w/chronic vertigo but MdDS describes perfectly how I feel. Vestibullar therapy really helped but it's back again more often than not. My husaband & friends call me "Crash". Thinking I will contact Oprah

I am now in my 7th run of MdDS. The longest my symptoms lasted was over a year. My first being in 2001 after a cruise. I have tried everything except acupuncture. I think I may have to give that one a try. I can not predict what will start up the rocking and swaying anymore. It used to be a boat ride of some sort. Most recently, (October 18th, 2007) the MdDS returned after a 1 hour commuter train ride to work. I have found out something interesting though and wonder if anyone else has experienced this. Three of the seven times, returning to a boat for a short time after a few months of the rocking has actually STOPPED the symptoms completely. I don't know if my brain finally got the message that indeed I had gotten off of the boat and I went into remission. Anyway, I plan to try this again in a few months. I'll keep you all posted if you are interested. Has anyone else found this to be true? I would love to hear from you.
Nancy

I am now 71 and have suffered from MDDS since age 60 when I finished a 7-day cruise and then took several consequetive plane trips. Initially I felt I ad "sea-legs" and would self-correct but the condition became worse with time. Having tried repeat trip, valium, balance disorder PT, and sustained periods of rest, I note that the systems have over time diminished but remain constant and worsen with fatique. I have had no relief except in the past 2-3 years, nighttime in bed is "rocking-sensation" free. What a relief.

I have just been diagnosed with MdDs. I returned from a business trip in May 07 and within 24 hours started to feel like I was walking on an unstable spongy floor. The symptoms worsened until I was sent to a neurologist. I have had several test including an MRI, blood test for epilepsy, MS, parkinsons etc. Everything tested normal. I was then sent to an ENT specialist who I just saw today and who gave me the bad news. I am hoping my symptoms will abate and not return. Reading the above stories does not give me much hope. At least I have been able to continue working although I have missed days when the wave-sensations have been particularly bad. I am 42 and feel like I am now trapped!

I've just been diagnosed with MdDS after having all the usual tests folk speak about. I have had symptoms for 4 or so months but it took me a while to work out what was going on. I am so grateful to be in touch with people who know what I mean. I am 64, teach Yoga as a retirement interest and will continue to do this as I think it helps with the balance side of things. I too am hoping I'll dock on dry land soon!! Regards to fellow boat people!!

My brother (36) & I (39) both suffer with extreme vertigo. Our doctors have us on the medications Effexor (150mg) & Ativan (0.5 mg 2x day). If it weren't for these drugs we would both be invalids or at least home bound. It doesn't cure the illness but it allows the world to STOP MOVING! I wouldn't wish this on any one in the world. I urge you to ask your doctors about these meds. Our prayers are with you ALL.

I am 51 years old. I have a history of migraine headaches for 25+ years. I have been on two large ship cruises in the past. Other than about 7 days a 'sea legs' nothing was unusual about disembarking from those cruises. My husband and I treated ourselves to the gift of time together this Holiday season. On Dec 22, 2007, we boarded a Cruise West small ship in Cabo San Lucas for a 7-day cruise in the Sea of Cortez. The first night out on our cruise we hit a storm. 50 mph winds, 15-20 ft swells. The ship was only moving at 5 knots. This was a small ship with 115 passengers and 43 crew. I threw-up for 10 hours. 95% of the passengers were sea sick as well as 50% of the crew. About day 3 we went snorkeling. That is when I realized I had vertigo. I felt like I was tumbling under water. I assumed I had some type of inner ear infection. On Dec 29, 2007, we sailed back into Cabo San Lucas and spent 5 days at the Finisterra Hotel. I was in bed with a fever & chills for 2.5 days. I had a sinus infection and viral infection and was very dizzy. Talk about the Perfect Storm. As soon as I got home, I went to the doctor. She treated the sinus infection with antibiotics and decongestants with expectorants. After the virus germs were mostly over two weeks later, I told my doctor that I felt like I was standing in a row boat on Golden Pond. She referred me to an ENT the next day. The ENT was able to make a diagnosis of MdDS within minutes. It has now been 30 days and I am still rocking, swaying, and bobbing along. I have to hang onto the walls as a walk down the hallway. A trip to the grocery store left me clinging to shelves. Thank goodness the symptoms go away while driving. At least now I know what I am dealing with. The diagnosis has taken away the wondering of what was wrong with me. As others had described, that first week back to work was very difficult. I was so fatigued by the end of the day. My head was in a fog and I have an analytic job. I would go home and sleep for 12 hours. I work on a computer all day and am having some visual disturbance too. The shower is probably the most challenging because that is when the motion is worst. My ENT has recommended that I walk as much as possible and carry on with my normal routine. My heart goes out to all of you who have been dealing with MdDS for many months and years. Thank goodness for websites like this and the ease of use of tools like Google for self-help resources.

My husband and I just finished a 7 day cruise for the first time. Although it has only been a week, I fortunately came across info on this disorder for mdDS! I am positive that is what I am suffering from. Hopefully it will not last too long but from what I have been reading, not so sure! Does anyone experience a jittery feeling sometimes with this as well? Thank you all for posting your comments and helping to inform others of this very strange phenomenom!

I feel like I am the big winner or more like the big loser. I went on a plane ride from NY to Mexico 7 years ago this month. I was 27 years old. It took two years to be diagnosed. I am an elementary school teacher and I have probably missed a whole school year from dizziness, collectively. I have been on effexor for five years now, but I am looking to change to another medication or treatment that is more effective. I am chronically dizzy for several months everytime I go on an airplane. I am sensitive to movement, high pitched sounds such as whistling or beeps, being stuffed up, and rainy weather. I am desperate for help. Does anyone have any suggestions?

My brother and I have just returned from our 1st trip to Cancun, MX, where we enjoyed a day of snorkeling and swimming. That night, I felt like the hotel was moving, and we thought it was the eathquake shocks underneath. The moving sensation continued even while on the beach, and has continued on since we flew home. It has been 1 week now, and that vertigo sensation has not stopped. I haven't been to see a dr. yet, and the movement has gotten worse. I have no pain in my ears, so I doubt if it's an infection, the only sympton I have is that constant "sea legs" feeling. Hopefully it's not what you all seem to have, since I am a diabetic, and have enough problems with that disease, I don't need another one on top of that.

I just came off a cruise, and wow, I swear I'm still at Sea. I can't walk right, and even when I sit in a chair, I feel like I'm tiping over. It causes huge headaches, and makes my eyes hurt. At work I'm having a hard time concentrating at work. Any suggestions to help this would be great. ~Ted

I share the same problem with most of u. Have been off balance for 10 yrs and seen most docs and found no cure fo it. it has improved but not back to normal. this is the 1st time i heard about MdDs.