My name is Katie Miller, and I have had MdDS since 2002. I took two short, uneventful flights on a Friday and two similar flights back on the following Sunday. I woke up that Monday with the unnerving sensation of walking on mattresses, and it looked like the walls were moving. I had absolutely no idea what was going on.
I was a very healthy, active 29-year-old woman and this hit me out of the blue. I went through every test in the neurological and ENT book, and there was no explanation for my symptoms. We did find that I had a vascular loop behind my left ear, so I had brain surgery to correct that in the hopes that it would stop “the dizzies.” Unfortunately, that surgery had no effect, and I call it my gratuitous brain surgery.
I have had moments of remission and at one point was “dizzy free” for four years while taking amitriptyline at night. All the while, I still had no idea what was causing my dizziness. As the Internet widened, my husband continued searching for answers as we’d found that unless you can medicate or surgically attack a “disorder” most physicians aren’t interested. He stumbled upon this Foundation, and we finally had a name for what I was experiencing.
The relief was amazing. No, I wasn’t making it up. No, I wasn’t depressed. No, it’s not vertigo or migraines. Knowing that you are not alone and not crazy, is hugely comforting.
I have been to Mount Sinai four times in the past three years, and they have given me periods of relief. The dizzies seem to come back after an illness and/or emotional stress. Since those things are a part of life, I’m continuing to explore other treatments. In April, I’m heading to “Dizziland.” I’m hoping that as testing has developed over the years, we may find an additional underlying cause or trigger.
My best advice to my fellow dizzy friends is to NOT GIVE UP!!! I still fly, travel, and have run two (very slow) marathons. Do not let this damn disorder steal your light or your life. Sleep when you need to. Cry when you need to. Yell, scream, shake your fists and decide the dizzies will not beat you. Share with your support system and don’t be afraid to ask for help. We can do this and I believe in you. I refuse to let MdDS steal my joy.
A Note from the MdDS Foundation
Please leave a comment with the word phrase you used to find this website. Your responses will help us to optimize it, so that others who are suffering without knowing they have MdDS may find us and get the help they need quickly.
I live in Az as well. Who is the dr that you use? Not diagnosed with MDDS but certainly suspectful. Four years now.. going to Dizziland this week in ca . Prayers🙏🏻
Thanks for sharing your stories and encouragement.
I guess I need to be thankful that I haven’t had this for as long as y’all have experienced it! The first time I had it was in 2011, after a 7-day Alaskan cruise. I got on shore and was hit with the dizzies. It lasted for three weeks, but it passed. Two more cruises on uneventful seas passed (two and three years ago, respectively) and I didn’t have symptoms. Just got of a cruise last week, and my head is still spinning. It hasn’t been violently dizzy, but when I took the scopolamine patch off last Monday as I got ready for work,things seemed normal, but when I got to work, I started feeling dizzy. It got more pronounced through the day, and by evening, I took one whiff of dinner and that was all she wrote. I retched into the wee hours. Stayed home from work on Tuesday and has the forethought to put on my last patch. It helped and I went back to work on Wednesday, feeling dizzy, but not sick. Took the last patch off yesterday, and I’m still dizzy, but thankfully not sick. My brain is foggy, but I’m managing … but now have my hubby in the hospital, so I’m anxious about that. I think I need to keep an eye out here … I may need to turn to y’all for support if this doesn’t go away.
Thank you for your kind words. We all need to pray for each other. It would be great if we each had a sponsor like they do in AA . Someone who knows what this is like & is our friend .
Please don’t even think of Suicide ! You have a beautiful child who needs you . We all have days like this & sometimes I ask God to please take me home but I’m almost 82 years old & live alone since my husband passed away going on 6 years & I really have other issues that are also untreatable! Why me I ask, my answer comes back why Not you their are others worse off than you or me so I pray a lot & sometimes put on music And dance with the rocking ? Perhaps if your baby is a new born you could be having postpartum issues along with this miserable condition! I will put you on my prayer list along with all of us that are plagued with mdDs. Good luck & kiss that sweet little guy for me .
My name is Claudia, I’m from Mexico City and I also have had MDDS since a couple of days after the birth of my son, that was May 17, 2017 so I make 1 year a few days ago.
So I made the conclusion that the event of having a baby is so stressfull for some moms that MDDS come to our lives but the most curious or wierd situation is that I had this before in 2009 when I went on a cruise for 8 days and that time, I had it for 1 month, 10 days ( I was in college)
Then I had it for 5 more times when travelling but I realized and paid attention that my MDDS was not because of the airplane but the fact that I wanted to “eat” ( visit every place, museum, historic place) the city in a few days so I took my body to an extreme fatigue, walking, walking, walking, eating not so well, like a backpacker you know?
In every episode, the rocking/ swaying sensation lasted 3 months approximately.
I helped myself making excercise and the otoneurologist Dr. Ricardo Ceballos sent my Amitriptyline and it helped not to be depressed and to reduce anxiety.
I too have been having sleepless nights eversince i started taking a few new meds to control the dizziness, imbalance feeling as well as the complicated migraines that i get daily post being diagnosed with MdDs and a recent stroke that was highly likely caused by my acute migraines. I am on Lamictal and Neurontin which is to supposedly help me with nerve issues as well as manages my migraines. Had a month long episode of insomnia. I feel you when you say that your brain is on overdrive. I understand that completely. I wouldnt resort to sleeping pills or SSRIs in the long run but perhaps talk to your doc to see if u can swap up meds that you are prolly taking in the evenings to earlier in the day or trying melatonin supplements. I am back on Xanax [dosage redacted] temporarily to reset my body clock and sleeping patterns. So far so good. Good luck with the sleep
It’s a horrible way to live …. I’m positive I got it from an overdose of an Antibiotic known to cause Vestibular Issues, I get worse when I’m in a noisy situation or a crowded place … if anyone is taking a drug or Vitamin which helped please share , Thank you
I’m amazed by Your attitude. I only have had it for three months and am already contemplating suicide. I cry everyday and it happened to me right after a birth of my beautiful son, that I have no energy to care for. Nothing gives me joy or rest right now. What do I do?
Paulina, we suggest joining our online support group on Facebook, where you will find other new moms. Our members are caring people from around the world with understanding ears. Hope to see you there.
Hello Paulina, I read your post and sympathize as the anxiety and depression component of this has taken over my life since last Oct and I am not the same father and husband I once was. I have had this disequilibrium and pressure in my head feeling for many years now. There is no perfect answer or solution but there are ways that can reduce symptoms. I have spent a lot of money and time on doctors, vestibular therapy, etc., all with no success. There are places you can research that have had success with mdds and related conditions that you can find on this site. I’m not sure where you reside but popular ones I’ve reached out to include Mt. Sinai in NY and the Chicago Dizzy Center. I recently looked into Dizziland in Newport Beach as Katie mentioned and it sounds very interesting. I have a follow up call next week. My only concern is that they might be more ear focused and I believe mdds is CNS related. I visited my neurologist yesterday to report no improvements from my last visit and his previous plan of attack. My next step per his recommendation is to visit an eye specialist for his take (convergence and other eye things) as well as trying to schedule an appt with one of two head/dizzy specialists – one in CA and one here in AZ. I am also going to try a different SSNRI which is supposed to help mask many of my symptoms. I honestly did have success with an SSRI for years which I decided to stop and deeply regret it. I am also working with a functional neurologist who uses visual therapy for the mdds (no help), laser therapy, and is using the whole gut/brain approach for my anxiety component. Finally, there is a whole Epstein Barr, vagus nerve angle that Anthony William (Medical Medium) takes. I came across this on an mdds post by someone, bought his book, and have listened to numerous podcasts. It’s a very different angle but interesting.
It’s not like me to respond with this much info but I read your post which really hit me as my wife and kids are everything to me. I wanted to share what I could. It seems best to learn from each other’s experiences, especially for things that have worked. You hang in there, love your new son, look into some things, and tell yourself that the way you feel right now is as bad as it can get and you will definitely improve. Please let me know if you have any questions. If anyone can add to the steps I mentioned or introduce others ideas, please do so. Let’s attack this thing together. Thank you.
Thank you for such a lenghty answer. Unfortunately I live in Europe, in Poland to be precise. Since this sicknes can be made worse by flying my medical options are limited. I think nobody knows anything about mdds around here. I’m not even sure that’s what I have (since I haven’ t been on a cruise or anything), I was thinking Vestibular Migrain is also rather probable. If you know anything about therapy options and centers in Europe please let me know. Also money is an issue here. I started taking SSRI medication for the first time in my life and am petrified. My mood has been super off this past few days and I feel suicidal to be honest. I can’t sleep properly and I feel like I’m trembling inside. I feel like I’m overstimulated, like my brain is itchy or sth like that.
I agree with you , this unbearable dizziness is not necessarily from being on a Boat … I have it from a medicine of which they gave me too much . Re the “shaking feeling “ inside the head, I have it often as if marbles were flying around, I take a sedative and need lots of quiet places, noise places get me over stimulated and a Migraine kicks in …
Paulina, please reach out to your MD and tell him you are experiencing post partum depression. Share with your loved ones and find a support group. Regardless of your MdDS diagnosis, you can get help for the depression and it’s very serious
I don’t think I have postpartum depression. I have “I’m sick for half a year and I don’t know whats wrong with me” deppresion. I’m going to therapy, I’m taking antydepressants. I don’t know what else can be done. Thank You for Your comment. 🙂 Take care.
So sick of the depression/anxiety component as well. Can’t explain it unless someone else has it. It’s worse than pain and has really gotten to me last few days. Feel empty with no hope. Just switched to Effexor which some dizzy docs like. Fingers crossed!
Keep up the good fight girlfriend! I just wish there was a Dr in Perth Western Australia that knew about this to diagnose me as I have been suffering with all the symptoms of MDDS for 10 years and had all the tests and scans with “Normal” results too, which is great at least no brain tumours but frustrating and scary that I still don’t have a diagnosis. I will stay strong and keep soldiering on regards, Wendy. Perth Western Australia 🇦🇺
You have a very positive attitude Katie! Appreciate you sharing your MdDS onset and treatments so far.
I haven’t had remission since my first days of MdDS 18 years ago. But I am hopeful for new research and trial treatments if not for myself but others.
Best to you and your family,
My onset was very much like yours and I can completely relate. My day to day life is spent on a descending plane I can’t get off unless I’m driving in a car of course. I am going through functional neurologist therapy right now which hasn’t helped quite yet. Thank you for mentioning Dizziland which I had not heard of. Keep us posted and I wish you the best!
Katie is my niece and I am forever proud of her. Nothing gets Katie down, not the dizzies or anything else. She continues to amaze me with her positive outlook, her energy, her beautiful smile and kind words of encouragement.
I pray for Katie and all the others that soon there will be a cure for MdDS. GOD bless and be with those that have this disorder.
Thank you for all your prayers for all of us who have had to learn to live with this devastating disorder! We all hope & pray for a cure or a miracle! More awareness of our disorder & having more people praying for a cure would help, at least, then maybe we could feel a little compassion when we are having really bad days & find it hard to cope with the everyday duties of trying to run a house, shop etc. that we all took for granted! Continue the prayers & God Bless You!
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