“I believe you.”
These can be the most powerful words you can say to someone who is crying each day desperate for the world to take them seriously.
It is true when they say that you only realize the value of something when it is lost. I do not think that many people appreciate the peace of stillness, the feeling of being stationary or even the steady ground beneath their feet. Imagine losing these things forever.
I was 23 and fresh out of college. I had secured my dream job and wasn’t bothered at all that my workplace was about 1.5 hrs away which meant I was required to travel by the metro train for 3 hours each day to and fro. Yet those metro rides to work more than 3 years ago changed my life irreversibly. I was cursed to be on the metro eternally. I could never get off.
I am a lecturer by profession and the first time I noticed something was very wrong was when the colorful clothes of the students in my class started bothering me. Every time I wrote something on the board I felt that it was not stable. It was difficult to write on something which kept moving. The stairs became my enemy. They swayed dangerously every time I tried to climb them. The ground trembled and it felt as if I was walking on a mattress. I started behaving like a maniac, telling the people around me that we should rush outdoors because there was an earthquake. Bright lights and patterns disturbed me. It became impossible to walk through a grocery store without the lines of neatly arranged colorful items agitating me.
My family started becoming annoyed because there was nothing visibly wrong with me and yet every time there was a family function or an outing to the mall I kept saying I was not feeling well. I felt a rocking sensation inside me without realizing that I was rocking on the outside too. People began pointing out that every time I was sitting or standing at a place my body was visibly in motion.
I was taken for CT Scans and MRI’s. The best neurologists in the city said I was perfectly fine, it was all in my head and send me off with anxiety medicines and vitamin tablets. This would have made anyone feel relieved but it ended up making my life even more miserable. Since all my medical tests came back negative, my family too started believing that I was probably anxious and needed to be strong. My lowest point was when I had to take a week off from work and I remember sitting on the bed cross legged with closed eyes and I felt my upper body moving to and fro. Various scenes from horror movies where demonic possessions made people sway frighteningly came into my head. I cried like I had never cried before because fighting the world when you believe you are right is easier, but fighting the world when you start feeling that you might be wrong is impossible.
I shifted to a branch of my company nearer to my house to avoid the commute, hoping that I would feel better. But the swaying and rocking did not subside. I lived in a rocking trance for two years, spending most days crying silently in the bathroom at work and weeping myself to sleep every night. I had been healthy all my life and now I too believed I was not right in the head.
I took to the Internet and kept researching, a part of me still trying to find a reason. Finally I ran into a group online, with members with similar symptoms. I was beginning to find answers. I contacted my friends abroad and send them my reports and symptoms. I urged them to discuss my case with the neurologists there.
I found my answer. I had Mal de Debarquement Syndrome.
Finding out my ailment’s name was nice but getting to know that it had no cure and nothing could be done about it was appalling.
Nobody in my country seems to have heard about it.
My anxiety grew along with it bringing in new symptoms of muscle twitches, tingling sensations and panic attacks. I also have PCOS, which keeps my hormones off balance, which seem to play a role in the worsening of my symptoms. Because of being off balance and the constant gravitational pulls on one side, I kept feeling like my body was tilted, which made the muscles on one side of my body overworked making the other side feel light. I had a lot of panic attacks thinking I was having a stroke because my right and left side felt different. I also had an issue with my proprioception, which meant that if I wasn’t using my limbs I sometimes felt that they weren’t actually there. This was my most scary experience. I later realized that proprioception is a part of our balance mechanism, hence, it was also disrupted. Everything combined made me believe that I definitely had some scary disease like MS or ALS.
It has been more than three years living with it now and the only thing which has kept me going is the moment when my family had said to me, “We believe you!” It wasn’t in my head. I wasn’t crazy.
I did not quit my job and after sulking for a couple of years I took control. I started yoga and meditation. I cleaned up my diet. I straightened my posture and kept going, through the panic. The symptoms haven’t gone and they are still my constant companion but they are much more manageable now. I work 8.5 hours, 6 days a week without any medication. It takes me thrice the effort to do any task which a normal person can do, but I still do it. As a matter of fact I excel at it.
I only take the lowest dose of clonezapam 1 hour before a party I really want to enjoy or if I’m craving a shopping spree at the mall.
I came from being depressed enough to consider suicide to being strong enough to accept my condition and move on. I believe in myself and my loved ones believe in me. I do not remember how it feels to be still. I might never experience it again in this lifetime.
This is MY normal! It is a part of me but it in no way defines me.
Name: Ritika
Country: India
Age of onset: 23
Trigger: 3 hour metro rides
How do you feel now Ritika?
Hello, greetings to you my name is Kareem nurudeen am 28 year still single from NIGERIA am having this vertigo since first week of November 2015 have been to many hospital and meet with some doctors runs some text no cure to extend that one doctor told me that am having polycytosis after some HIV test and others so he bleeded to blood bank in me still don’t relief me i still consult some Oracle to find if i will find solutions from them no way!!! Not until i came online to search what is really happening to me before i find the name MdDS that really makes me happy because i don’t even have any idea of what is going on in my life please help me to find the solution to this because am barber as profession please HELP ME OUT
Dear All, I had this problem about 10 years back while I was driving and was going to meet accident. Luckily saved. I was taking Insulin for my Diabetes + various other diabetic medicines to reduce my blood sugar. I felt that something must be wrong with the medicines. So I stopped insulin and the rotational vertigo disappeared. But my sugar level shot up. I realized that I can cope with that instead of the whole world is spinning around me. 3 years back I again started insulin and my vertigo has reappeared. This time it was triggered by ear drop. The next day I got into vertigo and the effect is still there. But this time it is not rotational vertigo. I just feel that I have lost my balance while walking. I am taking additional supplement for my Retinopathy, Neuropathy and Nephropathy i.e. Taurine. I have now stopped it completely. I hope to see the effect in the next two months.
Shrikant Badve, Pune (India)
Hi.. I’m 30 years female single. Facing vertigo since Feb , my all tests reports CT scan cervical spine x-rays are OK. I’m not facing BPPV .. Doing vestibular rehabilitation exercises feeling better but still dizzy.. Not get rid of this problem completely. Can any one help me what is the reason.. It’s mdds or what?
The Foundation does not diagnose or offer medical advice. Please consult with your doctor to develop a plan of action.
Hi Riti!
This is Prashant and I am 27 ,by profession I am a soldier and preparing for UPSC.From last one week approx after suffering from cold now a days I am feeling little bit same like you.I feel like everything is moving around me its really irritating and made me to search about it this is how I find your article ,will you please let me know how it started with you means initial symptoms. I shall be thankful to you.
Your Well wisher
Prashant
Hey Prashant. My MDDS was triggered by a train. Yours seems to be a spontaneous one. You may want to get your sinuses checked since it came about after a cold. It may resolve in a few days. I pray for you. Mine hasn’t left me in 4 years. I have mentioned all my symptoms in my post above.
Take care.
Hello parashant ..did u get rid of this disease? What is diagnosed? Why you feel vertigo?
Rotational or spinning vertigo is not typically associated with MdDS. A list of typical and atypical symptoms is provided on the What is MdDS page of our website. https://mddsfoundation.org/symptoms/
Anica… I am happy to hear your response that you are seeing a NUCCA chiropractor and getting help with this type of treatment for your MdDS. Can you give a little bit more detail on exactly what the chiropractor is doing as far as adjustments or any other treatment to help you with your dizziness.
I would like to see a NUCCA chiropractor in my area who offers help with vertigo (not specifically MdDS); but my primary care dr. told me NEVER see a chiropractor for a cervical problem as it may make it worse and I can possibly be become paralyzed! So I’m still stuck in the same situation.. no treatment…still suffering horribly from the dizziness & imbalance & all the other symptoms associated with this!
I highly recommend one. Since seeing him and an acupuncturist I have had improvement. The bobbles and wobbles in my head have stopped however I still have head pressure on the left side of my head constantly. I have brain fog and anxiety Trying hard to get the anxiety under control. I have been listening to binaural beats and optikentic visuals.
Anica…Thanks for your reply. I’m glad to hear that you are getting better with your MDdS with the help of your chiropractor and acupuncturist.
My question to you was what does the NUCCA chiropractor actually do to your cervical neck to alleviate the dizziness and motion disorder? What kind of therapy does he apply to your neck since I’m very concerned about this area… my neck is very very sensitive to motion or any kind of manipulation or even massage. I have even fainted during a massage therapy session where there was too much pressure put on my cervical spine in the past. I know every doctor practices differently and every country has different practices… any information you can give me would be a great help to me. Thank you so much.
Ritika, Your blog sounded as though I had written it myself; however, my symptoms are the result of a cruise I took in November, 2015. You are so right when you state that this is “curse”. I hope that a cure for us is on the horizon.
Yes Sheila it is truly a curse! At least we all are in it together and we will wake up one day to a cure which will make this nightmare disappear! 😊
How are your symptoms now ?
I am suffering from same symptom but don’t bother much about it and leaving normal life peacefully and enjoying life a lot
It is wonderful that you are able to manage your symptoms well. MDDS is different for each person. And the severity of symptoms vary from person to person. Everytime the symptoms go beyond 5-6 for me, it becomes difficult to function normally. I’m glad you are doing it!
Exercise and being in the water seems to help me, hopefully it can help you 🙂
I agree with you. Exercise is always great. I benefit it a lot from yoga too. Thanks for the support 😊
Do you feel dizzy when your exercising in the water? I’m afraid to go in the water alone..do you have someone with you? What kind of exercises do you do standing up without feeling like you’re going to topple over or fall down? I do some stretching exercises lying down in bed and some sitting on a chair holding onto the sides of the arms of the chair and a little bit of standing exercises holding on to my Walker but it’s very difficult.
I practice yoga and meditation. It has improved my balance and my anxiety! 😊
We all believe you. Well said !! Thank you.
Thank you for the support! 😊
I believe you.
Thanks a lot 😊
Thank you just thankyou.
Thanks to you for the support 😊
Go on the MdDS foundation website..they have list of some (very few) doctors that are successful [sic] in treating this terrible disorder.
Don’t give up & think that you have to live with this the rest of your life because possibly you may find a doctor that can help you.
Good luck.
I know what your going through. ..I’ve had this for 15 years!!!
Unfortunately, the list of doctors that may diagnose MdDS includes only one doctor in India. This is one reason why it is so important to raise awareness, so that more doctors can be educated, put on the list, and more patients may be served.
What about Dr. Dai at the neurological balance center at Mt. Sinai Medical Center in N.Y.? I got his name on your website & also from a medical article written by him & his associates at Mt. Sinai given to me by my neurologist at University of Miami. Do you have any information on his success in treating MdDS?
Ritika is hoping to create awareness of MdDS in her home country, India. Regarding Dr. Dai’s intervention, much needs to be done before “success” can be proclaimed. The most recent update provided by Dr. Dai to the Foundation can be found in this post. The Foundation will share new information if it becomes available.
Dr Dai is great, but just be aware that he is a neurophysiologist, and not a physician. He cannot order or prescribe medication or teats, and he cannot diagnose. He is working on treatments to reverse/ cure this syndrome through mount Sinai
I thought Dr Dai was evaluating & treating for MdDS? Those that have gone to see him say that he did ocular vestibular therapy treatments on them? I’m assuming that he would evaluate you if you had this disordered before doing any kind of treatment?
This is a matter of semantics, Jeannette. The service that the team at Mt. Sinai is providing cannot be defined as “treatment.” It may be referred to as an “intervention.” The studies they are conducting no longer adhere to guidelines as set forth by the NIH, so cannot be considered “research” either.
Thank you for the support! I’m never going to give up hope. Currently I’m not in a position to travel thousands of miles for treatment. So until it is available nearby I have to accept this as an irreversible part of me or I would not me able to drag myself out of bed and get through the day!
Thanks a lot for the support 😊
I’ve had MdDS for a dozen years. I was able to give it a name after seeing a television program abut it about three years ago. No cause, not much treatment, nothing. Except, of course, ”You’ve gotta expect this sort of thing when you get old.” (I’m in my 80s.) He finally told me to google something called BPPV. I did. It’s Benign Paroxysmal Positional Vertigo. Now here’s the kicker!
I was at a Seniors Expo and saw a poster at the booth of the chiropractor with a list of common maladies. The young woman saw me looking quizzically at the list and asked her why BPPV wasn’t on the list – she sheepishly said she just hadn’t had time to update the list!! Surprised, I asked her if she knew about BPPV, she said, ”Oh, yes! Have you had an injury to your C-spine?” When I replied that I had, she said that was most likely the root of my problem and suggested that chiropractics could help. Long story short, I have been going for realignment and adjustments and for the first time in many years my dizziness and other symptoms have diminished a great deal! Now I don’t look like I’ve been on a week’s drunk, staggering down the street! I shall continue with chiropractics until I am back to as normal as possible!!
Why didn’t anyone suggest this and chiropractics before?
I have heard of this also…upper cervical injury can cause a slight misalignment of the atlas and axis of the upper spine close to the brain stem and that little bit of misalignment can cause you to have imbalance and dizziness.
But I was told that you have to see a chiropractor that is really trained in making these very slight adjustments to the upper cervical neck because it can do more damage if the chiropractor does not really have enough proper experience in treating you for this. They are a part of an organization called NUCCA. Anybody interested in having this done to them should go on to the website NUCCA chiropractor organization to see a chiropractor and find out as much information as you can. They offer a free evaluation to see if this is actually your problem causing your dizziness before they even decide to treat you. Then you can find someone as close to where you live that does this type of treatment.
I too have been treated by a NUCCA chiropractor in Melbourne Australia and I am seeing improvement.
Stay strong and be thankful for the things you CAN do. Stay as active as possible and be an advocate for those of us with rare disorders.