Inside it’s a nightmare, but I am a Warrior, every day.

B.G.

I am a 37 year old female, living in Florida. 2006 was the first time I experienced this feeling of what I called “dizziness.” At the time, I was working at a job where my stress levels were very high. I remember having these symptoms for about a week and actually had plans on going on vacation that week (specifically on a cruise). I remember thinking, “How am I gonna go on a cruise already feeling dizzy?” Lo and behold I noticed my symptoms went away right before the cruise. With that I convinced myself that these symptoms were all stress related.

A few months after, I left that job to go to Nursing School. I never had the symptoms again until I completed nursing school and was getting ready to take my boards. I remember thinking, “Oh boy the stress is causing this dizziness/vertigo.” I called it vertigo because my mother had been diagnosed with vertigo and that’s what she diagnosed me with :). I remember having a difficult time studying online and feeling like I couldn’t focus. The symptoms went away a few days after I took my boards exam and I found out I had passed, which again lead me to believe my symptoms were stress related. Thereafter there were a few times where these symptoms occurred for 1-2 weeks at a time.

On one occasion I was having bad headaches/migraines along with the “dizzy” symptoms, and I was out of work for 3 weeks. When I returned to work, Employee Health recommended that I see an ENT/Balance specialist for my “dizziness/vertigo” symptoms. Several balance tests were performed (during a time which I did not have any symptoms). The only conclusion that my ENT could find is that I possibly I have inner ear damage (never had any ear problems or trauma in my life). He prescribed clonazepam, which I have taken off and on since 2009. Even with the medication, I still have the rocking, swaying symptoms especially after taking cruises or flights. It has lasted up to 5-6 weeks at a time, then becomes very mild. My MD suggested I increase my dosage. My fear is the use of a benzodiazepine for the rest of my life. I have tried to research alternative medicine but all point to assisting with the “symptoms of nausea, vomiting, dizziness.”

In doing my research, I had heard of MdDS and was sure that this was my diagnosis but my ENT never confirmed. My neurologist who treats me for my headaches and migraines (and who is aware of MdDS) agrees that my symptoms are similar to those of MdDS. I have symptoms of rocking, swaying, feeling anxious (tachycardia), difficulties concentrating, and even clumsiness.

Listening to an interview that was done in July with Cathy Helowicz has shed so much light and even tears. I, too, know what its like to have people look at you as though “you look perfectly fine” but inside it’s a nightmare. I hear people say, “How can you have vertigo and drive?” Well it all makes sense now!

As a RN this is a very debilitating sickness to deal with. I find myself coming home from work and dropping to the ground with so much exhaustion and just crying my eyeballs out. Oh and not to mention the thought of wanting to quickly fall asleep to take me out of my agony. I plan on spreading the word and advocating, getting involved in what ever way possible. Especially being the patient and a RN. Thanks for allowing me to share my story in somewhat of a nutshell.

Betty G.

21 comments

Discussion Policy
  1. dupsy

    I think I have the same disorder.. It comes and goes kind of thing. I noticed it first time in 2015.. Came back in 2016.. Went away and it is back again. I feel unease, Imbalance, dizziness, swaying, like I want to fall. I pray that when I wake up d next morning, it would go as a result of rest. In fact it causes insomnia for me.. I feel it more in the car..I feel nauseated at times

  2. Elna Maherisoa

    I too is experiencing the same problem but mine is accompanied with continuous sound in my ears or head. Sad experience

    😥

    1. Ramil

      Obviously it is Vertigo ..

      1. MdDS Foundation

        Ramil, people with MdDS feel a rocking or swaying sensation. It is different from vertigo which causes spinning. You may be interested in this page, which describes additional Signs of MdDS.

  3. ramil

    Hi! I am suffering hard the same way you are suffering.. Working alone in Saudi Arabia, I had this thing Vertigo, Hypertension, GERD, Anxiety, Thyroidism and Panic Attack.. I knew that stress and depression are the main culprits triggering these things simultaneously.. Already had myself away from fats, meats, caffeine, dairies, sweets and salty foods but still these things come and go unwantedly.. I even stopped smoking.. I really feel bad and everyday is a nightmare.. Thinking only of my wife and children is keeping me alive ang fighting until now.. Lord have mercy on me!

    1. MdDS Foundation

      Ramil, you are not alone. Our MdDS Friends group on Facebook has members from almost 60 countries. Many are parents, like you. Join and they will share their best advice.

  4. Jean

    Hi Pauline (That’s my aunt’s name).
    Read your comment on the blog site for MDS and Dr Hain in Chicago. I just wanted to know if you went through with his treatment plan or not and if you did what success you had?
    I believe that’s what I have. I have almost 90% of the symptoms of mal debarquement syndrome but I live in South Florida and no one that I have seen has ever heard of it or knows what to do about it. And I have seen every specialist that you can think of from neurologists to surgeons to ENTS’s to orthopedic doctors to Neuro ophthalmologist to vestibular therapists, etc. Any additional information you can provide I’d really appreciate it…As you know living with this is a nightmare!!!

    1. Tas

      I’m the odd one. Have all symptoms with the addition of heaviness of lower body. Sometimes feel as though being pulled down through floor, street. Appreciate info of clinic in Chicago. Plan to contact. Thank you.

      1. MdDS Foundation

        Tas, are you a member of one of our online support groups? We recommend the MdDS Friends group on Facebook. You’ll be able to search through past conversations regarding Chicago and join in active conversations with others that have MdDS.

  5. Kelly

    Hello,
    I am from Australia and I have been suffering from stress for a few months.. I also went on a cruise and have been diagnosed today by my ent that I have mdds. I don’t have the persistent bobbing or rocking though things are leaning to the left ie.. I was bobbing for about three weeks but I have been terribly stressed too! Floors and furniture… They appear tilted to the left by one degrees… Has anybody else felt this?
    I’m still seeing docs and having tests.. I do feel like my life is going to be boring now that I can’t travel…
    I’m feeling very sad. 🙁

    1. Kelly, you may find membership in one of our online Support Groups helpful. Members may search through and review the message archives and, of course, post questions. Our many members have a great variety of experiences and advice to offer. Links to join either group are at the bottom of this page.

      1. Jean

        Please read my comment under Kirsten’s post in reference to what is going on with me and if the MDDs foundation can offer me any help I would greatly appreciate it. I have been chronically ill with this disorder for 15 years and I’m desperate for help. I have never been diagnosed with mal debarquement syndrome but I feel that I can diagnose myself with it since I have all of the symptoms that everyone else seems to have that has this disorder. Especially since all of the Drs. that I have seen, which are too numerous to even mention, have never been able to diagnose what’s wrong with me. Any assistance you may offer would be very deeply appreciated thank you.
        Jean

        1. Jean, have you requested membership in one of our online Support Groups? As a member, you may search through and review the message archives and post questions. Links to join either group are at the bottom of this page. Using a desktop or laptop computer is recommended.

          1. Jean

            I think I may have requested membership but I find it very difficult to stay on the computer and read all of the different comments and blogs. I can only stay on the computer 10 to 15 minutes at a time and then I start getting very dizzy my eyes hurt and I get a headache and I have to stop so it’s very difficult for me to do too much research on the computer.

          2. Understandable. The support groups are for sufferers of MdDS only so discussion is focused on topics specific to MdDS. If you have questions, you will get the best answers there.

  6. Linda

    Just met with Dr. T. Hain at Chicago Dizziness and Hearing Clinic..They are trying a new treatment which has been successful in a N.Y. Clinic..I don’t have all the details but he is well published and very encouraging. Just wanted to put his name out there as a promising resource . I’ve had Mdds fotr about a year now and very hopeful he can help. Linda

    1. Pauline

      Hi Linda. I have had MdDS since July 2015 and am scheduled to receive the protocol treatment at Dr. Hain’s clinic this Spring. Have you pursued this treatment or have you spoken with anyone that has had the treatment?

    2. valentina

      Ciao Linda, hai avuto mdds per un anno, ma oggi come stai? stai meglio? Io sono una donna italiana disperata. Ho girato medici ma in Italia sembra che nessuno faccia diagnosi di mdds, di cui credo davvero di soffrie (nonostante non abbia fatto crociere o voli prima di iniziare a soffrire). Sono disposta a volare oltre oceano se solo sapessi che i medici che ti hanno seguito potrebbero fare qualcosa per me. Valentina

      Translation provided by Google:
      Hi Linda, you’ve had mdds for a year, but today how are you doing? are you feeling better? I am a desperate Italian woman. I turned to doctors but in Italy it seems that no one diagnoses mdds, which I really feel about suffering (despite not having cruised or flown before starting to suffer). I’m willing to fly over the ocean if I only know that the doctors who followed you could do something for me. Valentina

  7. Monica

    Thank you for sharing your story, Betty.
    My MdDS was triggered by a single episode of vertigo (BPPV) in March 2014. It’s been a long process of many doctor’s appointments, tests and assessments to rule everything else out. MdDS is such a mystery. I appreciate you being an advocate and spreading the word. You’re right, it is very exhausting. I can only imagine what it must be like to have such a demanding job as an RN with this disorder. Deep bow to you!
    I agree with Margaret’s comment, meditation is a must for me. I find that taking time to calm my mind, rest my eyes, and experience any degree of stillness helps me throughout my day. While I continue to try different (natural) remedies such as acupuncture and craniosacral massage, meditation is always available to me, even for 5 minutes while waiting in the doctor’s office.
    May a cure be found. In the meantime, practice self-compassion as often as possible.

  8. Kristin

    Hey Betty! Enjoyed reading your article and my husband feels your pain. He has had the same symptoms for about 3 months. Where in Florida do you live? We live in West Palm Beach, Florida and have found no luck with neurologists who have experience with MdDS.

  9. margaret

    Betty!

    I have practically the same story. I was highly stressed out and went on a boat (sailboat) for a week. When I got off the boat, I really didn’t get off the boat. I went to two ENT’s, got an MRI, had my eyes checked, ears checked, allergies checked and nothing helps. I went to vestibular therapy and that really helps me out. If I feel anything coming on, I do my eye exercises and it definitely helps. I also stay away from caffeine and alcohol when I have the issues. Lastly, meditation. Get this in your life. Trust me. When I feel stressed, the MDDS only gets worse. Meditation and deep breathing is the way to go. Check out Gabbie Bernstein’s podcasts. She is amazing and will help you!

    Margaret

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