Case Study – Marla Cruise
How you acquired MdDS ?
In Feb. 2001 I went on my first ocean cruise to celebrate my 50th birthday. Little did I know that this vacation would result in my becoming disabled and ultimately lead to full time disability.
A few hours after disembarking from the 7 day voyage to the southern Caribbean islands I noticed that I could feel the sensation of the ship. I wasn’t concerned because my twin sister had warned me that this could happen. When I got back home after a 5 hour turbulent flight and a 1.5 hour drive I removed the Scopolamine Patch that I had worn during the cruise and went to bed. The next morning I woke up to feeling like I was still on board a ship at sea only during a hurricane. It felt like my body was being rocked 90 degrees forward and 90 degrees back in a pendular motion. I couldn’t walk straight without hitting the walls in my hallway. The sensation intensified when I went into the bathroom and it felt like I was riding a bucking bronco at a rodeo when I sat on the “throne”. I literally had to hold onto the sides of the toilet or I would have fallen off. I was really glad I had decided to take this extra day off work. I was hoping that my balance would adjust to solid ground before I had to return to work in the operating room the following day. Unfortunately when I woke the next day my balance was just as poor and when I got to the hospital I was astounded to see that the fluorescent lights increased the motion even further. Now it felt like I was walking on a trampoline, as if the ground was moving underneath each step and bouncing me up into the air while still feeling the gravitational pull toward the right and the fierce rocking sensation.
I spoke with an ENT specialist that day who was performing surgery and he assured me that I was just experiencing “sea legs” and that I might continue to feel this sensation up to a week! I couldn’t imagine feeling this way 24/7 for an entire week!
Another doctor told me to reapply the Scopolamine Patch in hopes that it would decrease the sensation of motion. When I got home from work I applied a new patch and decided to read the instructional pamphlet that accompanied the drug. I read that sometimes a person can develop disequilibrium if they have worn the patch for several days. I wore the patch for about 2 hours and didn’t feel better so I removed it thinking that it was possibly the reason why I was experiencing such a weird illusion of movement.
I waited a week and the motion didn’t stop for one second so I decided I should see an internist for a checkup. This doctor examined me and made the decision not to put me on any medication. She said that I should just wait for the motion to subside. I left her office angry that she didn’t have something to offer that would make this sensation stop. I waited 3 more weeks and struggled to perform my duties in the operating room. I had refused to assist on eye operations under a microscope for fear that my imbalance would cause me to make an error and jeopordize a patient’s safety. One day I left work early because I couldn’t concentrate on my job because all my cognitive functions were being used to keep me from falling over. I was constantly having to adjust my body so I wouldn’t fall over or walk into a wall. I felt like a toddler learning to walk all over again.
My husband came home and asked why I wasn’t working and I burst out crying. I knew that something had to be wrong with me because it had been a month and I wasn’t getting better, I was getting worse. He insisted that I see my internist so I called and he got me in that day. My internist examined me and when he instructed me to do the Romberg test I fell over backwards. My balance had become so bad that I couldn’t stand with my eyes shut and feet together with my arms outstretched. My doctor said he wanted me to have an MRI to rule out MS or a brain tumor. He felt that the cruise was just circumstance and had nothing to do with my symptoms of rocking, imbalance, fatigue, and memory problems.
I had the MRI and only told a few friends at work. I didn’t want everyone to know until I had a definite diagnosis. The MRI ruled out MS and a brain tumor so after discussing my next move with my internist I decided to see an ENT specialist to rule out inner ear disease. I underwent ENG, caloric, and audiometry testing at the ENT’s office and my results were normal again. This was the same ENT who had told me that I was experiencing “sea legs”. He performed other tests to see if I had nystagmus and I did not so he told me that I had Mal de Debarquement. I had never heard of such a thing and he said he had just read about it the month before in a medical journal. He got out a textbook and found information about a female who had it for 6 months. She was treated with Valium and got better. He didn’t believe that I should take medication and reluctantly prescribed Valium 2mg but told me to only use it when I was really, really bad. I thought to myself “Are you kidding? I’m always really, really bad.” He also ordered vestibular rehabilitation in hopes of improving my balance issues.
I began the exercises and even though I didn’t think my symptoms could get any worse, they did. Now I was getting nauseated whenever I did the exercises. Plus I started getting migraine headaches, ear pain, and tinnitus around this time. I used the Valium on 2 different days when my symptoms were so bad that I couldn’t walk up stairs to go to bed. I had to crawl on my hands and knees to climb the stairs. I decided this was a “really, really bad day”. The Valium had no effect on my symptoms so I stopped using it.
About a week after starting the vestibular exercises I had an episode at work that forced me to realize that I was a danger to my patients as well as myself. I became aphasic one afternoon. I couldn’t speak. I would try to talk but could only stutter and stammer. The next day I started falling over backwards while applying a blood pressure cuff to my patients arm. I decided at that moment that I had to quit working around patients. I immediately went down to Human Relations and requested a change in assignments. They told me they had no positions open for non-patient care and suggested I take Family Leave of Absense which is good for 12 weeks. I had to have my doctor write me a medical release and when I asked my ENT to do this he was reluctant. He felt that I should try to continue working – I guess he just plain didn’t get it! He agreed to let me have 4 weeks and then I was to see about going back.
I continued to feel constant rocking, extraordinary fatigue, frequent migraines and was also dealing with a dying father-in-law. Then my body began to rock gently with the motion. My head would move up and down like a bobble head doll. I ran into my co-workers at a mandatory staff meeting I attended and they noticed this new symptom and suggested I get a second opinion from a neurologist.
I saw a neurologist who said he was not familiar with MdDS. He said he had seen one patient prior to me but she got better after 6 months. He ordered a bunch of tests, EEG, lab work to rule out many diseases, MRA, and a BAER test. He said he wasn’t opposed to me trialing medications for relief and we trialed several without any long lasting benefit. He hinted that it could be psychological and asked if I was depressed. I told him I was anxious because I was afraid of losing my ability to work and having an income and was in mourning over the death of my beloved father-in-law who had just died of brain and lung cancer. But I knew that my illness was not a result of any psychological illness and was insulted at his insinuation.
He agreed to keep me off of work but suggested that I see an expert on MdDS because he had run out of ideas on how to treat me. I had shown him information that Dr. Tim Hain from Chicago posted on the internet and how he treated his MdDS patients with Klonopin but my neurologist refused to order Klonopin for me. So I made an appointment to see Dr. Hain in Chicago but I couldn’t get in for another 4 months!
During this waiting period I suffered a pulmonary embolism. I went to the ER in excruiating right pulsating back pain and they admitted me and ordered a lung scan. Of course they couldn’t see a clot on the scan and I was getting scared because I knew I had all these symptoms and every test I had taken kept coming back normal! They decided to admit me and ordered other tests the next morning. Apparently a blood test called a D-dimer showed a high elevation indicating a blood clot so they said they wanted to do a lung CT in the morning.
Around 6:00 AM my neurologist poked his head inside my room and asked me why I was in the hospital. He had seen my name on the patient list. I told him they suspected I had a pulmonary embolism but that the lung scan was normal and he got this peculiar smirk on his face, as if he was thinking “she’s nuts”. Well it turned out I wasn’t “nuts” after all. When I went for the lung CT they decided to perform an ultrasound of my legs looking for signs of a clot and of my gallbladder to rule out gallstones which could be another explanation for the right sided back pain. When they were scanning the gallbladder they found a kidney tumor so I was then sent for an abdominal and chest CT. The CTs confirmed the blood clot in the right lower lung and a cancerous kidney tumor.
Now a urologist joined my list of medical professionals. I was told I would be on heparin for 4 days to dissolve the blood clot and then I would be taken to surgery to have my kidney removed. Then they would start me back on heparin. I spent 11 days in the hospital and at this time my internist came back into treating me. He read about MdDS on the internet and ordered Klonopin for me. I started it the day after my surgery and I felt a reduction in the rocking overnight. My urologist had commented that kidney cancer can have some peculiar symptoms and we were hopeful that once the kidney was out that my rocking would go away. So I can’t say with certainty that my rocking improved due to the Klonopin. Perhaps it was the cancer causing some of my symptoms of fatigue and cognitive difficulties.
Four months after my surgery I returned to work on a part time basis. I had many restrictions. I could only handle about 4 hours a few days a week due to the fatigue and increased imbalance. I couldn’t have direct patient care in the beginning because of my cognitive problems. I still struggle with my MdDS over 8 years after getting off the cruise ship. My symptoms of rocking have been continuous except for 7 days back in early 2006. I was on vacation in Mexico and had 5 really good days where I felt 100% normal. Then I went snorkeling and my ear plugged up and I got tinnitus and the rocking came back. The next day was better but the last day of our vacation I got a stomach flu and my MdDS symptoms returned to a very high level again. I’ve had several other heath problems which have prevented me from working so I am now on complete disability.
5 Responses to “Case Study – Marla Cruise”
Leave a Reply
Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both “felt” and “seen” by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.
Clean out the ears, ear candling, some hydrogen peroxide in the ears.
Consider some vesticular exercise:
Turning your head from side to side low and then fast and focusing on something each time you turn. Walking on your tiptoes, slow and then fast. And this seems REALLY STUPID but it helped the most. You know how you turned yourself around and around to feel dizzy as a kid? Well if you do that three or four times a day you will feel sick but as your body adjusts from spinning it will help A LOT Just walking or exercise is supposed to help to. You can look up Vesticular Exercises on the internet and almost any ear, nose and throat doctor has handouts on it. Hope this helps if you are dealing with it!
Consider ingesting some ginkgo biloba–helps with this condition also.
I have a friend had the same thing. It took her 3yrs to find that Lasix reduced the amount of fluid in her body and in her ears. She tries to take the Lasix everyday; she has no symptoms as long as she takes Lasix! Good luck to you.
Considerably, the post is really the best on this worthy topic. I agree with your conclusions and will thirstily look forward to your next updates. Saying thanks will not just be adequate, for the tremendous lucidity in your writing. I will immediately grab your rss feed to stay abreast of any updates. Solid work and much success in your business endeavors!
Just found your blog while searching Bing.
I have had previous problems upon returning from cruises. The first one in 2002 was bad, I got back and for three months I felt like I was walking outside of my body. I couldn’t go to the gym, take a walk…..I was wobbling but no one else could see it. Dr. didn’t really have an explanation for me except to tell me that some people live with this inner ear problem for years. My thought was, no way can I deal with this for years…it was horrible. I was tired all the time and just out of it. The next cruise was in 2007, I went through the same thing….it lasted about 2 months. So, I love cruising. We always get a balcony and when we get back home, I lay in bed and feel that feeling of when I drift off to sleep and wish I was still on board. I made myself stop doing this and the last three cruises have been fine for me. Thank god!!! I am heading out to a Med cruise this spring for 12 days (usually only do 7 in the Caribbean) and praying that I don’t have any problems. Although I did not go through the extent of problems you went through, I can certainly sympathize with what you have been through.