Rocking, bobbing, and swaying...coping with Mal de Debarquement is a daily challenge.
Connie is a 27-year-old Physical Therapist Assistant from Pennsylvania. She describes her struggle with Mal de Debarquement Syndrome, otherwise known as Disembarkment Syndrome, in the following interview.
Suite 101: How did the onset occur?
Connie: The last week of February, 2008, my husband and I flew from Pennsylvania to San Juan for a 7-day cruise. I had the Scopolamine patch on my ear because I get air sick. The second day on the cruise I felt so sea sick.....I couldn't eat anything! My appetite was gone, and I felt very nauseated. I had a difficult time enjoying myself, so I slept a lot.
Suite 101: Describe the symptoms you experienced upon returning home.
Connie: When we landed, I removed the patch and shortly after I wasn't feeling right. The next morning I ended up in the hospital severely dehydrated from not eating on the cruise. It took close to a week to recover from the dehydration and to eat normally again. During this time, I felt a constant rocking and swaying. I went to my primary care physician and she told me that the boat feeling would go away with time, and that it was nothing to worry about.
Suite 101: What happened during the next few months?
Connie: From March to May I still felt my symptoms; however they were mild and very tolerable. In mid-May, my family and I went on a 5-hour white-water rafting trip in the Poconos. When we returned, my symptoms seemed to subside. About one week later, my symptoms returned ten times worse. I think I wasn’t over my first bout, and the rafting trip made it worse. I could not focus on my work, I felt a constant swaying, rocking, bopping sensation that was intolerable. I had no relief even with laying down.
Suite 101: How were you diagnosed?
Connie: I had an MRI, blood work, and an EEG of the brain. All tests came out normal. At the end of October, I went back to my doctor because my symptoms were not getting better. She had never heard of MdDs, so I gave her a brochure, and while she was reading it, she diagnosed me with MdDs. She recommended that I take 5mg of the antidepressant Citalopram once a day.
Suite 101: Has the medication helped?
Connie: Since I've been taking these meds my symptoms are much more tolerable! My symptoms still include rocking, bopping and swaying, but are not as severe.
Suite 101: Has your career been affected?
Connie: I am currently looking for a part-time job that's a slower pace. I think if I can relieve some stress in my life, it will help decrease my symptoms.
Suite 101: How supportive has your family been?
Connie: My husband Don and my son Dontaye have been really supportive. Dontaye is always praying for me, and Don is always comforting me. I truly don't know what I would do without them.
Suite 101: How important is it to you to share your struggle with MdDS with others?
Connie: Every day and every opportunity I get, I try to educate people in what I'm going through. My goal is to spread the word about MdDS and let people know that it is REAL! I pray every day for a cure or something to help people like me, because this is truly a debilitating syndrome. It is one of the scariest things to know there is something wrong with you, but no doctor can find anything. Exercise, enough sleep, medication and keeping a positive attitude is what gets me through my day!
Read this article for more information on Mal de Debarquement Syndrome.
The copyright of the article Mal de Debarquement Syndrome: A Personal Account in Coping with Chronic Illness is owned by Tanya Martinenko. Permission to republish Mal de Debarquement Syndrome: A Personal Account in print or online must be granted by the author in writing.
My husband has the same symptoms, but was told he has Meneries Disease. How
do we find out what he really has?
Dec 29, 2008 11:18 PM
Tanya Martinenko :
Visit the MdDS Balance Disorder Foundation website at
www.mddsfoundation.org for authoritative information about Mal de
Debarquement Syndrome.
Jan 2, 2009 9:35 AM
Guest :
This exact same thing happened to me, I went onb a small trip to California
and I was on antibiotics because the doctors thought I had a sinus
infection same thing happened I feel uneven balance all the time I went to
the ER, got blood work everything was fine, 2 MRI's, no one seems to figure
this out I have these exact symptoms I quit my job because I could not
bear it. IT comes upon traveleing or if I am stressed, and don't get enough
sleep!
Jan 15, 2009 6:03 AM
Guest :
I started with these symptoms of swaying in 1994, a few months before my
wedding to - ironically - an ear doctor (Neurootologist). We went through
MRI's, EEG, balance tests, and I've had these symptoms ever since. Adding
fuel to the fire came panic attacks and extreme difficulty concentrating.
My symptoms worsen when I'm prementrual. My most recent diagnosis is
vestibular hydrops, but I'd venture to guess I have MdDS. It's important to
see a Otologist who specializes in vertigo. This may never go away, but
with the right medication, excercise, coping mechanisms, good rest, and an
understanding family...it's tolerable. My meds consist of betahistine,
hydrochlorothiazide, and an antidepressant.
Jan 15, 2009 3:55 PM
Guest :
Ihave symptoms similar to the disembarkment disorder but have not been
diagnosed. Every day is challenging and I feel alone, with no one
understanding how much effort I put forth to keep up with daily
life.Instead of feeling that I am weak i am most likely strong to be
functioning as well as I am. On a recent visit to the neurologist he
suggested that I have an inner ear problem but only advised me to not allow
it to change my life and keep doing things as usual. Easy for him to say.
Jan 17, 2009 9:56 PM
Guest :
Hi, I have been suffering with similar symptoms of an MdDs person would,
for about five years! I have seen all kinds of specialists, and had all
kinds of tests with negative results. What hurts the most is that not only
do I suffer, but also my family because they see with what struggle I live
everyday. I have come upon many people, including doctors that believe
that it is all psycological! Which is hard to believe because why would
someone want to be sick? What test can be done to diagnose MdDs? Can
someone out there HELP ME please?????
Feb 8, 2009 2:53 PM
Guest :
I have had these symptoms since April,2002, after returning from a European
riverboat cruise. I was diagnosed with Mal de Debarquement syndrome and
put on clonazapam in 2005. This year my doctor has suggested another
problem, possibly perilymph fistulas but has done nothing about this as
yet. I feel much better when the weather is calm and dry and changes in air
pressure are very hard on me. The support group has been very helpful.
Still these symptoms are very difficult, annoying, and exhausting. I try
not to let them take the joy from life but it is a daily battle.
Feb 15, 2009 10:33 AM
Guest :
hi, I have read your comments. Not sure if this is me. Somedays I think I
am going crazy. I have extreme difficulty in stores or large areas. I have
difficulty thinking, putting things together. No headaches or tingling in
ears. Have had hearing loss for years. I have been to dr. including
opthamoligist. I have appt with ENT on Tues. If he cannot help, I do not
know where to go from there. Can you help? I printed the page from internet
on vestibular disease. Have any of you tried chiropractor treatments?
Mar 20, 2009 2:51 AM
Guest :
I've often written about my living with MdDS and my experience of the
medical profession here in the UK has not been good on this score. My
latest entry about the ongoing saga of seeking at the very least some
compassion and respect:
Thanks for a great article and I wish
Connie every hope for a recovery and for help.
Apr 23, 2009 7:59 AM
Guest :
I've had MdDS for 11 months now. It is tolerable but annoying at times. I
work with someone that had MdDS and vertigo. She was really out there.
She went to a "Vestibular Specialist" that put her through
different exercises to do. In 2 months her MdDS was gone and she feels
great. I have not done this yet because mine is tolerable and I'm just
really tired of going to doctors. I will probably go when I'm completely
tired of dealing with it. I just wanted to give the information on my
coworker in hopes that others will find relief and comfort.
Jun 9, 2009 10:12 AM
Guest :
I have this problem every time I've been on a ship or pontoon. I have had
some success with chiropractic care and vestibular physical therapy. Each
episode lasts about 3-4 weeks after being on water. I'm having some
problems again and hoping someone had found something else that works!
Jul 21, 2009 12:37 PM
Guest :
I havnt never been on a boat before but I have some similar feelings but
mine only starts around oct thru dec and lasts about 2 to 3 weeks then it
gos away! This time its been on me 4 nine months I hadn been able 2 leave
my house at all I can't ride n a car at all cause it feels like I'm n a
airplane and it has no wheels then when we turn a curve and get back on
straight away it still feels like I'm turning but no dr has been able 2
igure it out for 15 years now do u think this is somn I should check into??
I thought mayb it was alergies and sinus cause it happens with the change
of weather but I don't know
Sep 22, 2009 2:07 PM
Guest :
The chiropractor has helped resolve this for me every time (usually after
only one or two visits)!
Oct 22, 2009 7:18 AM
Guest :
I was diagnosed about a month ago and have been having symptoms for close
to 5 months now after being on a 5 hr boat ride. I've been sent to physical
therapy and all the exercises make me nauseated and I can't walk or stand
on my own. I began the physical therapy unsure if it would have a positive
effect if any effect at all. Their method is to bring on my symptoms in
hopes that my body will eventually adjust and become immune. Now my
symptoms seem to be getting worse and I don't know if it's on account of
the constant stimulus. If this does not work I will lose my job. I have the
symptoms all day, some days worse than others. If anyone has any advice or
insight, please contact me. hvn_sent0@yahoo.com
Dec 15, 2008
