Doug’s Strange Days

In March of 2013, my wife and I enjoyed a 7 day Caribbean cruise. I consider us veteran cruisers as we have taken eight or nine cruises in the past. I never experience motion sickness during a cruise, however I always experience the feeling of being still on the ship after disembarking for a few days, so I didn’t think anything was wrong this time. One week after our latest cruise I woke up one morning and just sat on the edge of our bed for a few minutes feeling like “something is wrong”. I even went to a mirror to see if my face was drooping. I thought perhaps I was having a stroke. My brain was in a “fog” and I couldn’t think clearly.

Two months pass before I finally see my GP. I NEVER go to the doctor. I had been experiencing various symptoms during this time that I had attributed to either a virus, low blood sugar or just getting older. My existing tinnitus was louder. My ears felt full. I was tripping more during my trail runs. I was veering in the halls at work when walking. I was having trouble putting thoughts to words. Extreme fatigue. I have run several 100k events, yet I never felt more fatigued than simply coming home from work, where I sit in front of a computer all day. Yard work around the house now took multiple days instead of a few hours.

My GP orders an MRI. MRI comes back negative. Orders complete blood work and a physical. Everything ok there. Sends me to an ENT. The ENT runs all kinds of tests I never heard of. Hearing and balance tests appear normal. Sends me to a neurologist. He performs basic exam and reviews MRI. Again, everything is fine. ENT puts me on diuretic and clonazepam and says I have Meniere’s disease (although I do not exhibit the classic symptoms). At this point I am very frustrated. Between age 40 and 50 I was proud to say I visited my doctor once or twice. I have completed over thirty ultramarathons in the past four years. Now I am on three meds; supposed to be on a low-sodium diet; no cure in sight; I feel like an old man.

I schedule an appointment with another ENT at a teaching hospital (in another city) for a second opinion. More hearing tests were performed and after reviewing the results he says I do NOT have Meniere’s. Mentions disembarkment syndrome in passing. Also said it could have been a virus. Thinks I will be fine in a few more months and tells me to get off the Klonopin, but I could continue taking the diuretic.

What a relief. I did not want a lifelong disease like Meniere’s. He lists “Mal de Debarquement” as primary diagnosis and “viral labyrinthitis” as secondary. I didn’t even look at the documents they gave me as we left because I was so happy to not have Meniere’s disease. Later, I did recall talking about “viral lab” with the doctor and I begin searching the internet for anything I could find about this condition (NOT MdDS). Talk about a “brain fog”.

I join a forum at a website for “dizzy people” and I list my symptoms, hoping someone can help me. A forum moderator stated I have the classic signs of MdDS and points me to www.mddsfoundation.org.

After reading the brochure on this website I am convinced I have MdDS. I print the brochure and review it with my wife that night. Something finally clicks in my 40 watt brain (I used to be 100 watts). I look at my medical chart from my last consultation. There it is! MdDS (primary) diagnosis. DUH.

So, where am I five months after our cruise?

I still have the ear fullness; the mental confusion (especially in a crowded mall); the disequilibrium; the FATIGUE. The fatigue is probably the most life altering symptom. I can get used to the disequilibrium. I run more carefully on the trails to avoid tripping. I know I am going to “wander” when I walk. However, the fatigue takes over my life some days. There are days when I have to go to my car to take a nap at work during lunch. Some days I come home and I have to nap for a few hours. Even with naps there are nights when I require 10 hours sleep. I have good days (where I think I’m finally getting better), followed by bad days (where I’m back to square one). I find reading about other people experiencing similar symptoms is somewhat comforting. Friends and family just don’t understand how I feel. Everything appears normal, but that’s NOT how I feel inside.

I hope for the best and try to live a normal life (as much as possible). I am determined to stay positive and count my blessings for all the things I can still do. Life’s good.

Doug’s Strange Days was last modified: September 12th, 2017 by MdDS Foundation

56 comments

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  1. I too have this strange syndrome after a 4 day cruise. I remember from the ENT surgeon that my father has seen for ear problems and he recommended that my father perform this ear blowing exercise, where you have to swallow and pinch your nose and blow through your ears all at the same time. I doubted that this method will work but after I tried it myself, it did relieve a lot of my symptoms. If you find a difficult exercise, try to drink some water, swallow, pinch your nose and blow. You may hear a clicking sound in your ears which mean the water in the inner ear is being pushed out.

  2. How are you doing today? I believe I have mdds as well. 6 weeks after my cruise and the symptoms are still there. Epley maneuver didn’t help. I feel like a crazy person.

    1. Sissi, the Epley maneuver is a treatment for BPPV, which is an inner ear disorder. Current research shows that MdDS is a neurological disorder. (See Cha YH, Chakrapani S, Craig A, and Baloh RW. Metabolic and functional connectivity changes in mal de debarquement syndrome. PloS ONE. 7:e49560, 2012.) If you are not already a member, you may request membership in one of our online Support Groups. Members can search through and review the message archives and, of course, ask questions of other members. Many are newcomers that are going through the newness of it all like you, and others have years of experience and can offer support and advice.

    2. Still have same symptoms although my ear pain has subsided. I still work but I need a daily nap at work instead of lunch to deal with fatigue. I stopped taking vitamins as nothing helped the fatigue or brain fog. The only thing that helps is daily naps and lots of exercise. I still run as I can run far. I just cant walk a straight line! As others have stated it will get better. Try to stay active as much as possible. It will help your brain compensate. I hope you start feeling better soon.
      Best wishes

      1. After too many years of trying to live with all the symptoms of MdDS, I have found what I believe now is a good diagnosis and treatment; BPPV – Benign Paroxysmal Positional Vertigo. Conventional medicine and doctors give too little credence to chiropractics, so many maladies go undiagnosed, much to patients’ dismay! Mine was traced to a subluxation at the C-1, C-2 cervical vertebrae. After treatments to realign my neck bones the MdDS is becoming a thing of the past! Who knew! Try it. It could be your answer too!! Good luck.

  3. John Morris

    Doug, I suffered with mdds for 5 months in two episodes. My symptoms were exactly as you described. After doing a lot of research, I feel I might have some ideas about what may have caused my episodes, besides the ubiquitous motion event.

    If you are (or anyone else) would like to compare notes, please email me.

    I’m looking for some current sufferers to look into a few blood/urine tests and try some things to see if you see any changes in your symptoms.

    Thank you.

    John

    1. John, you may request membership to either of our online Support Groups. You can search through the archives of messages and ask other sufferers questions like this.

    2. Meleisa Watson

      Hi John I am curious to the blood/urine tests you mentioned in the above post? I am currently experiencing my second episode of MDds for going on 1 1/2 months now. I am taking the Klonopin which has helped significantly but I’m currently weaning off of it. I am seeing a Doctor of Naturopathy at the end of this month for some tests like you mentioned to see if vitamin/mineral/hormonal deficiency triggers this besides just the rocking movement (my first episode started after I had my first child, I was able to go on boats, jet ski, etc just months prior to pregnancy). So if you would let me know what kind of tests I could mention when I see the naturopath later this month.
      Thanks,
      Meleisa

  4. pollymoyer

    Hi Sailor from Downunder, I was not aware of the thousands of blood tests re autoimmune issues – can you point me to the research, please? It’ll be interesting to know at what stage of this condition these tests were done as one of the ‘down under’ researchers says it will change over time. So the timing of these tests *may* be relevant to the results. Meanwhile I have no wish to add to the fear factor, but whilst 80% of rare conditions (source: RDUK/Genetic Alliance) remain incurable, my feeling is that exploring all avenues and asking lots of questions is a good way forward for anyone with a rare condition. I have been co-habiting with MdDS since the end of the 90s, on and off, so I know how fearful it can be. So I am sorry if I unwittingly added to your fear levels, or those of anyone else but all my lines of enquiry result from questions asked by my excellent GP.
    As my sister also had MdDS my fear is now reserved for my beloved niece – so I am highly motivated to seek effective treatments/cures for MdDS and any other potentially hereditary neurological conditions, Especially those involving ataxia but also migraine and epilepsy, since they also run in the female line in my family. Hope that helps assuage your fear and that your seas are calm for the holiday season – and forever more.

  5. reaah

    Are you still having symptoms of mdds or did it resolve.
    What treatment did they have for “viral labyrinthitis”.
    I’ve suffered from this diagnosis since 2007. I still believe that this is caused by an underlying undetected low level, infection in the body.

    1. pollymoyer

      Reaah – thanks for sharing your infection theory; another good one to throw into the mix : ) I’ve been looking into an autoimmune back-drop factors and know others are, too. Also some of us are looking at methylation issues. But there are many different factors that can build up to (or result from) any type of ataxia. The final onset ‘triggers’ will vary a lot, too.
      I hope everyone here experiences calm seas over the holidays.

      1. According to reputable consultants and medical doctors there is no sign of infection or autoimmune disease based on thousands of blood tests. Cure the beast that is MdDS, do not add to the misconceptions and misunderstanding. It is disheartening for those working on this illness to hear people add to the fear factor with no basis, as it is an uphill battle at best.

        Bless you, Doug.

    2. dougF

      Yes I still have symptoms. Going on close to two years now and I still suffer from fatigue, mental “fog” and disequilibrium. Ear fullness has subsided. Stress sets off my symptoms very quickly. Can’t stand large crowds, malls, grocery stores, fluorescent lights. I try to stay active and force myself to continue my ultramarathons. I think my trail running helps my brain relax. Of course I still trip and fall into things, but my balance gets better after I run a few miles. I went to doctor for a follow up a few weeks ago and he was surprised I still had symptoms. He said “MdDS doesnt last that long”. So there is a lot of ignorance out there about our condition. A third neurologist I went to a month ago said it really doesn’t matter what diagnosis I get. Viral lab, viral neuritis, MdDS all have similar symptoms and there is NO cure. Said I just have to get on with my life. So I am following that advice. Trying to live each day as much as I can. Merry Christmas everyone.

      1. Jos

        Hi Doug how are you feeling now? My experience is much the same as yours. Has been 18 months now (on and off for 8 years) I hope you are starting to feel some relief from the symptoms?

  6. ann marie lollo

    Try to find yourself a good chiropractor. Have him give u a series of neck adjustments and have him treat you for vertigo ( gentle head tilts to move the nerve fibers that are removed from the vestibular organ. . It will help tremendously. It helped me!

    1. Thanks, Ann Marie. It’s good that chiropractic was beneficial to you. I’d like to point out, though, that spinning or rotational vertigo is atypical for us. Symptoms commonly associated with MdDS are listed on the Foundation web site: http://www.mddsfoundation.org/symptoms-scale/

  7. Doug, you’ve fallen in with a good crowd, hard as that may be to believe when it really gets going. We’re here to support you, and happy to have you supporting us.

  8. It’s comforting in some ways to see that there are so many of us living with this condition day in and day out. I giggle when people sort of passively ask “oh, are you STILL dizzy?” Like, ok yeah for 5+ yrs I have just stopped whining about it and letting it take over my life. Been thru all the drugs and tests mentioned above without any official diagnosis other than my own. My own tips to manage this: get plenty of sleep, watch the alcohol intake (3 drinks can tip me over to the next day’s “waves” as I call them, and do NOT let stress rule your life. More good days than bad these days, but reading other’s comments and stories reminds me of how bad it used to be. Ugh grocery shopping was the worst! As Doug says – Life’s good! It could be a lot worse…

  9. Teresa

    Caroline when you refer to a ‘colon prep’ do you mean a colonoscopy? I’m due and will gladly schedule if there’s even a remote chance it may help the MDDS.

  10. Lynn

    Wow this is a complete revelation for me! I have been living w this dizziness, fatigue, sensitivities to light, noise, malls, supermarkets, large indoor venues, and sometimes confusion if people talk to fast for almost 2 years. I of course have seen Drs and even was hospitalized once for extreme
    vertigo. I was in bed for 6 weeks when this first started. Could not drive or walk without holding on to walls. Had MRI, been on prednisone for inner ear virus in 2011 but still have symptoms. I was given eply maneuvers to do at home which don’t help. Starting some new testing now but will tell my Internist about this disorder MDDS and explore that now. This disorder sounds like my life for the last two years. I now feel more encouraged to find ths group/forum who will really understand what I feel. I thought I had BPV up until now. Benign positional vertigo. As you said, we look normal on the outside but inside our heads it’s not normal. I live in Los Angeles and am 62 years old/young. I had a very full and active life before this. My symptoms started one day spontaneously for no apparent reason. Just woke up one day with it and never felt the same again. I too sleep a lot. But could also be depression which I am being treated for. I find massage and acupressure in neck helps. I am also exploring that more. I will get that book Trigger Point Therapy. Thx. I also find driving or air travel is fine for me now. Head support helps too. When I grocery shop or enter long halls I look down it helps. I do not look all around it helps. Outdoors I am better at walking without dizziness. This site is very encouraging to me. Thx God to my friend who directed me to this website. Thx for sharing all your stories.

  11. Debbie

    My son is 28 years old and was just diagnosed with MdDS after 7 months of feeling really bad. Probably saw 16 Drs. and 7 or 8 visits to ER and being told he had anxiety. It’s a relief to read everyone’s blogs about their symptoms and the different things that give you relief. We will do everything we can to help relief these symptoms and continue praying for a complete healing. I just pray that all of you including my son will be back to normal like Ms. Rox Garza.
    Debbie

    1. Well, well, well… 28 is he? I guess this blows my doctor’s snide remark of ”You have to expect this when you get old!” (I’ll be 80 in a couple of weeks…)

      1. Louise Edwards

        I just turned 74 and have had MdDS for 4 years, three months after I retired. What a retirement after working for 52 years and it was spontaneous as I didn’t have a chance to take a cruise. My doctors like to think it is mental and I’ve had every test imaginable. It has nothing to do with age and most doctors don’t know and could care less.

        1. How right you are!! In their arrogance the doctors who deny the existence of this syndrome are missing a chance to open their minds and learn something new, but no. They know it all. “Anybody can build a web site.” I don’t even try to talk to my doctor about it any longer. He’s convinced its either old age or all mental. phooey! I’ll just keep on spreading the word and hope that someone somewhere finds an answer to this strange malady! KEEP THE FAITH!

  12. AZ

    I have had MdDS since May 2012. I diagnosed myself after reading about it. Since that time, I have done everything that most of the people on this thread have done – seen an ENT doc, neurologist, etc. All tests were negative. I am very sensitive to meds so the antidepressant did not work – just made me tired. My neurologist has read about T Bio so she suggested I try it. Still made me tired so I only take very small amounts of it. Doesn’t really help. I find that sleep is the best remedy. Also, as Doug pointed out, slowing down my lifestyle has helped, but it is new for me to do that. My biggest worry is that my job is very demanding and I work long hours. It is very challenging for me to do that now. I hope I can make to retirement.

  13. Judy S.

    It may help, Doug, for your family to read all these posts. When I had my husband read them the MDDS seemed to be more of a reality to him. I belong to a Fibromyalgia support group so have friends that understand the chronic fatigue part of MDDS. Its a blessing to have supportive friends and our cyber friends on this website.

    1. dougF

      The sad part about having MdDS is that even the doctors are unfamiliar with it. Had appt with my first ENT(who diagnosed Meniere’s disease) yesterday. Showed him results from my consultation with another ENT that works in a teaching hospital. The 2nd ENT diagnosed me with MdDS(and I agree with this completely). I never thought I had Meniere’s. The first ENT said it was just the other physician’s opinion. He proceeded to tell me about his background and how he has written several papers as well. I think he was mad that I sought a 2nd opinion. Told me he has “cured” many people with MdDS. Unless I allowed him to put me on klonopin; there was nothing he could do for me. I asked if I could fly overseas(instead of another cruise). He said sure. That you could NOT get MdDS from flying. He said it was impossible. I wish I had printed the MdDS foundation brochure so I could show him he was wrong. I guess all the people I see on the message boards who are suffering from MdDS after an airplane flight are just imagining it!
      I am not happy with doctors right now!

      1. Rox, was your ”…back to normal’ spontaneous or what? How did you get back to normal???? Doug, I too am fed up with the doctors who have all the answers that are no answers at all. This syndrome has me so exhausted I just want to sleep all the time just to get away from the symptoms. It’s soooo debilitating! I just have to hang in here until someone comes up with a cure or at least a treatment, or wait for a spontaneous remission. I’m trying very hard to keep the faith, not to mention my temper. It’s awful!

  14. Lorie

    Hi Doug et al,

    I was diagnosed roughly 3 years ago after taking one 1/2 dose of Effexor, the tinnitus and other “not good” symptoms began then (4 days later) I spent a single night on our new floating home which was very poorly anchored so moved a lot. The next morning I woke up to the world spinning, the only balance I had was from muscle memory of doing lots of yoga (whew!). My husband didn’t believe I was all that sick until I actually puked on his shoes (not intentional, but does conveniently illustrate the point). I was very lucky to be diagnosed with MdDS and vertigo migraines within just a couple of months by an expert at UCSF. The most severe symptoms reduced over the course of a year, however I am still extremely sensitive to motion, flickering lights, and the FATIGUE is just downright annoying. Doug – I especially liked your reference to a 40wat brain, it’s so accurate! Before MdDS my brain speed along at a solid 120wats, but now it can feel like a flickering 60wat… on a dimmer switch 🙂

    After a rather stressful home move, I was thinking that my migraines were kicking up, but in reality all my symptoms far better match my MdDS. I always know that it’s time to take a quiet break (read “2 hour solid nap”) when my ears start to ring, my left eye begins to twitch, the world quivers a bit, and my head fills with sand.

  15. Kacey

    I have not yet been diagnosed but am wondering if I have MdDS. My symptoms sound similar to Doug’s: disequilibrium, fatigue, mental confussion. I feel best when laying down or riding in the car. Sittng is not too bad, but not great. However, I don’t have the sensation that the room, floor, bed, chair is rocking or bobbing. It is more of a feeling of motion sickness (nausea) especially later in the day. I also have been getting more headaches lately. This all began after several days of extended (4 hour) car rides and a 90 minute ferry ride. I am scheduled for vestibular testing soon but am just wondering if anyone else has only balance issues and not the classic rocking.

    1. Sandy

      Sorry, no nausea, unless I’m having an extremely busy, busy day with lots of motion involved, and by the end of the day I might get a little nauseous from the day’s activities. But mostly it’s a feeling of being in constant motion, like you’re “still on the boat” and can’t get off, a gently swaying, always more to one direction than the other (I go more to the right than to the left), and because of that I lose my balance sometimes, so I use my arms and hands to touch walls, railings, counters as I walk. Most people don’t notice too much. I’m much better driving, don’t hardly notice it then! But when I’m in a crowded mall or there’s too much activity around me I get fatigued and irritable, I will need to go sit or lay down and let it settle for a while. I know when it’s starting to subside when I get get dizzy and fatigued every other day, and then finally it will subside for a while before something else will set it off again (another long car ride or a cold) and I’ll be in it again. However, see my earlier post about doing trigger point therapy on your neck and glands to help keep it at bay. This really does help!

    2. Doug

      Kacey, what you will find searching the internet is that each person has their own unique combinations of symptons. That is what makes this condition a syndrome and so difficult to diagnose. While we all have some similar symptoms, some conditions manifest themselves more frequently than others(or duration); or not at all. While searching for an answer on the internet, I was trying to match ALL my symptoms with someone else. You will be very lucky to find someone else with the exact same symptoms.
      I do NOT experience the swaying/rocking while laying down or sitting(but many others do). For me, when I walk it is as if someone decided to push me on my shoulders sideways while I was mid-stride. What makes this syndrome particularly frustrating is that symptoms are cyclical. Fatigue will NOT be an issue for a week. Then, I can barely make it through a day without several naps. You will have to go through all the tests so they can rule out everything else before they will consider MdDS. I wish you all the best and my advice is to try and stay as active as your body will allow.

  16. polly

    Hi Sandy, thanks so much. I remember seeing something about a doc that retrained a patient with balance problems through ‘re-routing’ her motion system through her tongue, so this makes sense to me.

    1. Sandy

      Hi Polly, wow, her tongue! Well, I’m sure it’s all connected! For me, I think it’s in my neck and in my glands or what appears to be my glands. The book is great at explaining it. My next step will be to find a NCTMB physical therapist who specializes in dizziness (and migraines) who can work on this area of my body and show me better what I can do for myself. As a layperson, I don’t understand all the physiology behind what I’m doing. Again, my only goal in commenting is maybe this approach will help someone else out there with this condition. I know I’ve tried all the conventional routes, paid big $$ and done all the standard tests, and still the Drs have no answers. I’ve had CTs, MRIs, balance tests, balance therapy, ENG tests, seen a neurologist, ear, nose and throat specialist, etc. and none of these Drs have an explanation. They’ve put me on multiple medications, and most only make me more dizzy or sleepy! So we’re all forced to do our own research or live with the condition. Not one Dr has taken a real interest in what’s going on, really. It’s sad.

      1. Polly

        Hi Sandy
        I avoid all meds but i know that for some people they have helped a lot. I will post on the yahoo group soon re a recent visit to a Neuro-otologist in London but i want to wait until i have her clinic notes, first. She took an interest – well, no, she treated it as run of the mill, really – nothing unusual, just a borked bit of kind-of-important wiring. Next stop neuro-physio, neuro-psychology (for the cog defects) and Irlen to see if i can keep the migraine at bay. Oh, and i will get the book you recommended, for sure. Thank you so much for the info on that – we all share so well in this community : ) If any one of us gets just a little better, then that’s the reward.
        Best wishes
        Polly

  17. Margaret A . Madsen

    I was just diagnosed this week after 9 months and all those tests you took not to have the ringing in my ears is a blessing. I find it ironic that for the first part of my life I was so car sick,never went on a cruise would even feel nauseous on a hammock and now totally opposite. Today I even road in the backseat of a car as a test and did fine. In May we flew and the flight was turbulent and I slept like a baby with no meds….Xanax does take the edge off for me and that’s all I take. It is amazing to me that all the Dr’s didn’t know what this is…well all of the ones I saw will know by the end of this week!!!! Good luck to you and all of us…….

  18. Caroline

    I experienced MdDS symptoms for 51/2 months. Many of them exactly like you have described. I self-diagnosed my disorder about two weeks after my cruise with the use of google. Reading other sufferers comments on our FB page allowed me to know I was not crazy. I never saw a Dr for this for fear they might think I was! I took daily naps on my off days and kept on bouncing. I traveled on several vacations long distances only to bounce more on the few days that would follow the trips. I kept telling myself I was going to beat it and it was not going to stop me from living life. There were a few times it was hard to convince myself of this. I went through all of the stages of grief of the life that I once knew that was normal. I truly had come to accept my bouncing as my new life. I began to laugh about it. Being a slight control freak it was hard to give up my control over to MdDS. I am not exactly sure how it happened (though I have a theory) but after 5 1/2 months my symptoms are gone minus the ringing in my ears. It has been almost two months since I have rocked! Not looking back just hopeful it will not return. Hope you too are able to say this soon!

    1. Cathy

      Hi Caroline! So good to hear that the symptoms are gone. Can you please tell us your theory? 🙂

      Cathy

      1. Caroline

        Cathy, for me I truly believe my symptoms disappeared after a colon prep. I know it might sound crazy (every other thing about this disorder does too) 🙂 I never rocked again after it though…three monts now. The odd thing about this is I really believed my SX were brought on by ENT issues. It may be a coincidence but worth investigating for others who have tried everything. That is the weird thing about this disorder. What works for one makes another worse!

    2. Teresa

      Hi Caroline,

      I’m so glad for you that you are better. Do you mind sharing what your ‘theory’ is about what caused your improvement?

      Thanks,

      T

  19. Dee

    As I lay in bed on this beautiful September day, trying to close my eyes and escape the feelings of fatigue, weakness, and dizziness, I decided to try one more time to find something….anything online that might slightly explain the dizziness and fatigue I have been feeling on and off for years. Thank you for sharing your experience. It is the first time that any of this makes sense. The feeling of dizziness….like I am constantly seeking my inner center, the fatigue that is so over powering that its hard to explain, the cognitive fog that makes no sense…. Yes!
    I understand! Yes… This is how I feel.
    I’m not crazy!
    Until I read this today I had been feeling hopeless and crazy.
    I kept trying to explain what I have been experiencing to those around me and no one could relate.
    I have been crying and depressed for weeks. I knew that this was not a emotional problem yet no one believed me.
    This all started for me after an intense ride on a jet ski years ago.
    Thank you for opening up a new avenue for understanding for me.
    As much as I hate to admit that I have any kind of challenge….. at least now I can begin some research and healing.
    Sending gratitude and good healing energy.

  20. Mary

    We have many similarities. I too was never seasick, but had severe mdds after a 7-day cruise. The sleep required was incredible until i started the generic version of effexor, venlafaxine. It reduced my need for sleep and lowed my symptoms from an 8-10 level down to a 3-4 level. just as strange as the disorder, was what lowered it for me… with a bad cold/flu I had some high fevers which seemed to redirect neural pathways of the brain and lessen my syndrome. I am not completely over it but am generally down to a 1-3 level now 10 months after the cruise and i am starting to lessen my dosage of venlafaxine. do stay hydrated, never go on another cruise, and I wish you the best.

  21. Sandy

    I too have suffered from MdDS several times and gone into remission several times. Many episodes have lasted more than a year. I think however I finally found a way to stop the dizziness by massage and trigger point therapy around my ears, neck, glands and jaw area. It has made the fullness go away and the dizziness subside in about a week. I believe it’s just a matter of getting the inflammation and swelling and any blockage in that area of your body to clear. So far it’s working for me. Prior to this method I’ve suffered with this condition for years on and off. Now each time I feel it coming on I just do the massages again and it seems to stop it from coming on. I hope this helps someone else out there. I had all the tests like everyone else. Seen many drs but no diagnosis and nothing was “wrong.” Just try this consistently. Read a book on trigger point therapy for dizziness and migraines. That’s what got me started. Good luck everyone!

    1. polly

      Hi Sandy
      Very interesting comment as massage makes a big difference to me, too. Can you remember the title of the book you read, please?

      1. Sandy

        The book was called “Trigger Point Therapy”. I’ll have to go home and look up the exact title to be sure, and note the authors too.

      2. Sandy

        The Trigger Point Therapy Workbook, second edition, copyright 2004, by Clair Davies NCTMB with Amber Davies NCTMB. See pages 52-55, chapt 4 head and neck pain.

    2. Thanks, Sandy, but your treatment /cure is a strange one for me. Can you give us some details? What is the method? How do you do it? Do you do it yourself or do you need another person trained in – whatever? i’m so frustrated with this whole thing i’m willing to try almost anything to get rid of it!!!!!!

      1. Sandy

        I do the treatment myself. I’m sure I look quite strange as I massage my neck, and press trigger points inside my mouth to others! No training involved, other than reading this book and finding the “trigger points.” I truly believe it’s worth looking into. It’s worked for me after struggling with this for so long too! The fatigue is THE WORST PART of this condition. I can live with the dizziness, because I can sit down and let it ride. But eventually the constant fatigue is what wears you down. But each time I get it I always notice that my neck feels “full” and my ears feel “full” even though any Dr I’ve said this to said there’s nothing going on there. Yet I can FEEL it. And then I feel stupid for saying it. I keep telling my husband it feels as if there’s swelling or something in my upper body–above my shoulders–neck, ears, head, glands, and something in there is causing this dizziness, I’m convinced of it! And everywhere I read of others who have this condition, many have similar issues–migraines, TMJ, fatigue, fullness in the ears, besides the dizziness. So I think, maybe I’m sleeping funny on my neck at night, maybe I’m hunched over the computer too long during the day, maybe it’s allergy season, who knows what’s setting it off besides the long trips, flying, cruise, colds (and yes, sometimes a bad cold will also relieve the symptoms!–how odd!–so again I think it’s swollen gland related), stress, caffeine, etc, Anyway, the trigger point therapy must be done 3-5 times a day, daily, until your symptoms subside, about 4-7 days. Maybe longer, maybe shorter, depending on the severity of the swollen glands in your neck or jaw or around your ears. That’s my “uneducated” opinion of what works for me. Otherwise, be gentle to your neck and ears. Don’t try to “blow” them out, or do that other stupid treatment where you throw your body back and forth on your bed left to right to clear your ear canals. You’re just adding to the pressure again. You can also try heat around your neck too (heating pad or blanket). Touch the area under your ears and near your jaw. Is it tender? Turn your head left and right, is it still tender, more or less? This is where I hurt when I’m dizzy. I massage here, and inside my mouth near the back of my jaw as far as I can go without gagging. When I finally feel better and the dizzy goes away, this area is no longer tender to the touch, so I know it’s making a difference. Good luck!

  22. Keep the faith, Doug, there are a lot of us out here to whom this syndrome is one big frustration. If one more doctor tells me I have to expect this type of thing when I get old, I’m going to scream! I know I’m old (i’ll be 80 in some weeks…) but this is different. If I had diabetes, Parkinson’s, or even a broken leg, that wouldn’t render a response like that insulting one! I’ve had MdDS for so long it isn’t funny any longer. I used to love the feeling of being on a ship, riding on a roller coaster, and things like that, but never ever came away with this awful aftermath. The only time I really feel normal is when I am driving!! Go figure! The tinnitis is sometimes so loud I can’t hear much else. Other times it’s almost non-existent. Mine was a spontaneous onset – I didn’t have the pleasure of a cruise or a flight, or even a drunken binge (which I never had ever) but I sometimes look like I’ve been on a six day toot, the way I can’t walk a straight line or keep my balance. All tests have been negative. The brain fog and debilitating fatigue are causing me to lose what little joy I had in my life! Stop this roller coaster. I want to get off! My children think I’m losing my mind, and that also adds to my stress. You pray for us and we’ll pray for you. That seems to be the only method by which we might be cured!!

  23. Michel

    My name is Michel from the Netherlands ( age 29) and I was transmitted to Afghanistan as a soldier in December 2006, after a two days trip with an army armoured car (more than 9 hours under extreme bad road and weather conditions) I had a lot of ( existing) dizziness problems, after a lot of medical investigations and tests by different specialists ( one year ), the diagnose was MdDS which was diagnosed in 2009 by Prof Dr Herman Kingma of the UMC Maastricht, Netherlands. I had seen every possible doctor in the country and there was only one who was able to diagnose MdDs. I thought I was getting crazy.

    After more than 6,5 years the dizziness problems still exist and this has a major impact on my quality of life. I also suffer vestibular migraine. My suggestions are typically for folks to try to stay physically active, avoid caffeine and other psychostimulants, avoid stress, and to stay engaged in society. Hang on Doug , you are stille able to do lots of things. I’m trying every day to enjoy live as much as possible.

    1. Michel,

      Just reading your comment, I would like to get in contact with you since I am also from The Netherlands, near The Hague. Interesting you found Prof. Kingma to give you a diagnosis. I gave the diagnosis myself from all the info from the MdDS site. No need to undergo to all these medical investigations. — Veronica

  24. polly

    Doug,
    Thanks for sharing your story. If it is any consolation I feel less fatigued now than when I first got MdDS – I think my body has got used to it, even though I don’t sleep very much. I know what you mean about feeling old!
    I hope you can get good support from your doctors. Regarding helping others understand, i have found the best way is for them to read and hear about other peoples’ experiences of MdDS, via the media links on the website. For one thing it gives you a break from trying to explain something people can’t see. And for another they may realise that there are many differences within MdDS (hence the syndrome bit!) – as there are in Meniere’s and other similar and overlapping conditions.
    I pray for remission time for you – and all others with MdDS.

  25. Terrie

    Doug, you story is so similar to mine. Why don’t they just come right out and tell us we have MdDS? Why do we have to find out by reading it. Yes, I also recognize ways the were trying to tell me I had MdDS…but, it took months before I found out my reading a medical report.

    We have one life to live… And I also am determined to stay positive and count my blessings.

  26. Marla

    Doug, I would not take a diuretic. My symptoms were triggered twice to high levels following the stomach flu where I lost a lost of fluid and my ENT said that the dehydration is probably what caused my increase in symptoms again. I use clonazepam on high symptom days and when traveling farther then 1.5 hours by car or flying and it works well for me to use it only on those occasions. I got MdDS after my first cruise at age 50 and I was also very athletic and had never had any sort of motion sickness. I live along the Mississippi River and have been on boats my whole life without an inkling of a problem. Now even a gentle boat ride will increase my sensation of motion.

  27. Rox Garza

    I pray that you soon are better. I was diagnosed with MDDS in 2010 and am now back to normal, so know that it is possible.

    1. Teresa

      So pleased for you Rox that you are back to normal. It is such a relief to see your post and know that I could get better. Did anything in particular help you get well?

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