In January of 2013, my husband and I went on a 7-day cruise to the Southern Caribbean. A life-long traveler, I have been on long duration flights (with and without turbulence) and little sunset cruises, roller coaster rides, Jeep rides across rough terrain… I have never suffered from any form of motion sickness. While on the cruise, we did have some rough weather where we were tossed about a bit but I was fine. When we got off the ship in Aruba, I noticed the sensation of rocking but since I figured I was getting my “land legs” back, I was fine. Once back on board, I didn’t notice any symptoms. After docking back in Ft. Lauderdale, we spent the night and then flew home early the next morning. I felt okay until we landed in Chicago. After the car ride home, I felt awful; exhausted, dizzy, and a bit nauseated.
That following week at work, I was so miserable that I started calling my GP out of pure desperation to figure out what was wrong with me. I was terrified that I had a brain tumor or something really serious. I was in tears over the sensation because I’d never felt something so awful. And I was exhausted, purely exhausted. The rocking and rolling sensation was so bad I literally had to hold onto walls and furniture when walking. My GP called in Scopolamine to see if that mitigated my symptoms. When that failed to work, she prescribed Meclizine; it did nothing for my symptoms.
When I did finally get in to see her, I was told they couldn’t help me and was referred on to an ENT. It was hard to force the ENT’s office to schedule me immediately but I was able to get in several days later. The ENT saw me for a few minutes and confirmed that it was not an inner-ear issue and initially diagnosed me as having MdDS. The ENT prescribed Clonazepam twice daily and referred me on to Dr. Hain. I promptly filled the script and began taking it with the hope that I’d feel better. I was so desperate. I was very disconcerted when I felt completely drugged up by the Clonazepam. The type of work I do requires being mentally sharp and on top of my game at all times. This did NOT work for me. So after two days of being stoned with no reduction of symptoms, I stopped taking the Clonazepam.
Dr. Hain’s office couldn’t get me in for 3 weeks. When I finally got in to meet with him, I was having what I called a “bad” day. I was rocking and rolling all over the place and feeling very discouraged. He ran me through a battery of tests and confirmed that I suffer from migraines and have MdDS. I gathered from our meeting that I could be a poster child for MdDS: female, perimenopausal, late 40s, “high-strung/type A,” suffers from migraines, etc. After much discussion, we decided that I would try to take Venlafaxine ER (Effexor) to see if that would help with my symptoms. I started taking the medication and gradually increased my dosage as Dr. Hain suggested. To date, my symptoms have gotten a bit better but they have not gone away completely. Some days are better than others but I live in a high rise, work in a high rise, ride elevators daily, ride public transit to work, ride in cars, etc. Motion is a part of my everyday life.
Work has been very understanding. When I’m having a bad day, I still go into work and do the best I can. I sit a lot at my job so it’s okay. My symptoms are worse when I am standing or walking.
My husband has also been very supportive, and we’re trying to find the best way to cope with it all. He does get frustrated but not with me, more with the symptoms and my obvious discomfort. He’s been very understanding. We used to go dancing a lot but that’s a bit of a challenge for me now so we just dance when I feel good enough to try.
I try to keep on exercising because it helps with my stress level and some days I actually feel better afterwards. I’ve discovered that the elliptical machine, due to movement of legs and arms, seems to reduce my suffering. I may try to go riding on my bike along the lakefront path this spring and summer. I’m a bit nervous but I refuse to stop doing what I love to do.
I have to watch my sleep and make sure that I don’t get overtired. I tend to exhaust faster than I used to. I also try to eat very healthy and do whatever I can to avoid headaches. Busy patterns really bother me, and I’ve learned to steer clear of places where there will be a lot of noise as I’m very sound sensitive. In fact, all of my senses are a bit “heightened.” Bizarre but true.
I hope for remission and still hope to travel. With careful planning with Dr. Hain, I expect to continue my life as close to normal as I can. I stay positive because, while living with MdDS is challenging, I could be worse off.
7-day cruise, 2013
I can relate to all this-it is now two years and nine months that I have been suffering from this rare disease-went on an eight day cruise to the Western Caribbean in April 2011 and the rocking has not stopped yet-still able to work-am a high school teacher on the island of Trinidad-praying for a cure for all of us.
I went on my 1st cruise(Alaska) August 11, 2013 for 7 days.. I totally enjoyed the cruise-no issues.
Four hour flight home.
Quickly realized I was ambulating as tho I were still on the ship. I shared this w/ others who said I still had my ‘sea legs’. Now it’s November & I still have the rocking sensations & that the floor is rising when I’m walking, I occasionally have to grab @ chairs or walls to steady myself.
I can’t shop the upper racks in stores- looking up w/head tilted back causes extreme vertigo.
I’ve been researching this issue & am actually grateful for info I’ve received on this site.
Being a nurse, I’ve now diagnosed my condition.
Ah, Suzi, you have joined the ranks of the frustrated! Not the best place to be, but a lot of folks are sharing your symptoms, and have for some years. We too self-diagnosed, since none of the medical professionals we visited could or would help us. This stuff didn’t exist. HA! The answers are too long in coming! I’m about convinced we’re reacting to some chemical or chemicals in the foods, the air, the water, etc., but especially the foods. Have you ever read the labels on some boxes or cans? The list of chemicals in mind-boggling! But that’s how they make their money. And nobody is minding the store. So until or unless someone comes up with an explanation, the best we can hope for is a spontaneous remission.
Wow, I too feel I have these as I just got back from a 6 day cruise and I haven’t been the same since. I have good days and bad days. I am tired more than usual and it seems worse at night. I googled dizzyness and researched vertigo and I really believe I have this MddS!!! I am hoping that it doesn’t go on for years like some folks speak of. I too have a stressful and am use to going full speed day in and day out. I feel lucky to make it home and fix something for dinner before I fall into bed. I hope they find something to get rid of this as I love crusing and this last trip was 1 of 10. This is the first time I have had any symptons of vertigo. I think my husband thinks I am crazy. Time will tell as I feel nothing will take these symptons away. Glad to know I am not crazy and not alone.
Hi there Angie, have your symptoms gone away now? Regards Candice
I have been looking for people in Chicago. I thought I was here alone. I have seen Dr. Hain and his partner Dr. Cherchi. Please feel free to contact me. — L.
Hello everyone. I am a 52 year old male that experienced most of the same symptoms y’all have. Came on week after 8 day cruise(been on 7-8 previous cruises). Disequilibrium while walking/running. Feel like I’m being pulled side to side. However, did any of you experience ear fullness or some ear pain as well? One ENT said I had Menieres’s disease. One doctor thinks uncompensated viral labyrinthitis. But, the dizziness and mental confusion(good days, then some bad) sound very similiar to what MdDS does. Any thoughs?
Doug, I had ear pain and fullness too. That is a very common complaint for those of us with MdDS. I have never had an ear ache in my life until that time.
I am so grateful to have found this site and hear these stories! My husband and I went on a 5 day cruise on July 8 and once getting off the ship, felt like I was still rocking occasionally but attributed it to needing to get my “land legs” back. 4 days later I took an exercise class and everything went downhill immediately after. It was a constant rocking, like I was always in motion. It’s worse when I am standing or sitting still. When I walk, I feel as though I am bouncing. I only feel okay when I am in a car. I saw my PCP and he said it was benign positional vertigo. Two weeks of doing the exercises they prescribed and no results. Went to an ENT earlier this week, they did the full vestibular testing and everything came back normal. The ENT said he thought it might be land sickness but is also sending me to a neurologist and an MRI. So I Googled land sickness and that’s when I found the link to MdDS. While I haven’t been officially diagnosed, I would bet everything that this is what I have. Every symptom is exactly how I feel. I’m making sure that that neurologist I see if familiar with MdDS. It’s great to hear that I’m not just crazy or settle for the ENT’s “we don’t know what is wrong with you.” Thanks to all for sharing their stories. I hope I can find some treatment that will alleviate my symptoms soon so I can return to my normal life.
Thank you for writing.
I am actually sobbing as I write.
For the first time I can actually relate.
I know for sure as you said … That this is indeed what is happening to me.
Grateful for your experience and desire to share.
I was so hoping i would be able to respond,My name is heidi my new husband and i just a few weeks ago came back from the carribean on our honeymoon. I figured I would use the scopolimine patch just in case, after putting it on two days later i notice a rash on my neck and upper chest dah! didn’t think much of it thought i had been in sun to long, so i continued to use the patch. I also notice my vision was a bit distorted and blury, also notice in 90 degree weather hot and cold chills . We were on cruise for 10 days, first time on ship I arrive home 2 hours later remember i still have patch on removed it all was okay.Monday morning came I got up and all has been down hill from there. My husband brote me to my Dr he looked in my eyes did a quick nero exam and said I would like you to go to er for cat scan thought i possible could have had a bleed in my brain , well normally thats a pretty scary thing, but with the state of mind I was in and have been in It didnt bother me, Hmmmm so the dr at er examined me said blood work neg , cat scan neg you have landsickness, gave me meclazine and anti-nausea med as well. $ days later im out of it still and meds didnt help. Back to primary Dr he said you need a neroligist well in the mean time i said send me to ent . I went the other day which was thursaday he is sending me to have some electronic eye eear balance test this fri. Told him how i felt and what er dr said and he said he never heared of land sickness.Ha!! So cruise was july27 to july6,2013 onset the 8th and its now the 19th and I have had no luck still swinging swaying in a fog dizzy headache nausea, i get some relief in a vehicle..If i lay down and I’m still all is good I start moving around and it all comes back, and I find as the day progresses its worse. I too am a type A personality and I find it very hard to cope with this . I am a hairdresser and love what I do Its a passion not a job, and since I have returned i cant evern work, in fear i will fall and hurt someone. Ok So We will see what ent says. Still no relief. Im wondering if another cruise would fix me Lol!!!.
Pam, you could have written my story. I got MdDS after my first cruise and I also went to the southern Caribbean on a 7 day cruise. I didn’t feel motion until 2 hours after I got off the ship on the last day. I worked for 6 weeks but had to retire due to the fatigue, imbalance, and especially the cognitive difficulties. I never experienced any motion sickness to boats or long car rides so I wasn’t expecting to have a problem from a cruise. I did use the Scopolamine patch on the cruise just so I wouldn’t get seasick and I feel that it might have factored into my getting MdDS. You might want to give clonazepam another try too. You might have gotten too high a dose. If the dose you tried was too strong for you, then cut the pill in half and see if that helps. You can take it at bedtime if you’re afraid of being too croggy for work. Thanks for sharing your story. Hope you get a remission real soon!
Wow, thats exactly like i feel…I went on a carribean cruise nov. of 2012….I went to all kinds of doctors, and told them I had MdDS. I found it on the computer…I went to the emergency room 2 times, they took all kinds of tests, everything showed up normal…I received a concussion in my head the last time I passed out…my neck was the worse, went to PT, they could not help me, now I am going to a neurolosist..received 2 steroid shots in my neck, have to go back next month (july) for more shots…I feel a lot better than I did,,,still experience some of the synthoms I first did every now & than…especially when im tired…Good Luck to all of you out there that have this illness..
Maybe someone will find some medication that will work….Marilyn Yevoli
Yes, great job with your story! Keep on keeping on! We need to continue spreading the word to the medical community as often as possible (I leave one of the Foundation’s brochures with as many doctors as I can) so we won’t be dismissed when we describe our symptoms. In the meantime, we grasp at straws wherever we find them. Clonapin has helped me cope, but isn’t the final answer. I try to avoid places with multiple patterns, don’t look up or down unless absolutely necessary, sleep as often as possible when that veil of exhaustion appears, and hold onto anything handy as I’m walking anywhere! Best of luck along with the rest of us out here who are frustrated by having to live like this!
Pamela, You did a good job with your story. I am so sorry you are struggling with this disease. I’ve had it since 2010. We have to keep taking those baby steps. Get to know our limitations. Rest when we are tired. So, many things we have to learn. Wishing you the best. Terrie
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