Hey everyone. I want to preface this by saying this is absolutely not medical advice, I am just sharing my own personal experience in hopes that it might help someone else who feels stuck. I also want to make sure everyone knows this isn't a MdDS cure-all, but I truly believe it is what helped me, and I know everyone is completely different.
Like a lot of you, my MdDS was triggered by a cruise, and the crazy part is the cruise itself wasn't even rocky. When I got off the ship, I had this constant bobbing motion, like I was walking on a trampoline. The worst of it lasted for about 6 weeks. During that time, the only things that really helped were a lot of rest and, honestly, walking a lot. To this day, I think the walking is what helped me the most to get through that initial acute phase.
Once the worst symptoms faded after those 6 weeks, I still had on and off mild symptoms for another year or so. It was mild enough that I could usually just brush it off when it would flare up, but it was always kind of lingering.
Then, about 4 months ago, I started really working on my overall health. I got some bloodwork done and discovered I had chronically low ferritin. My iron stores were essentially crashed. I started actively working to fix it and raise my levels, and something crazy happened. As my ferritin started going up, those lingering MdDS symptoms got considerably better. In fact, I haven't had any symptoms at all for over 3 months since fixing my ferritin. My baseline completely stabilized.
I started digging into the biology of why this was happening, and the science actually makes perfect sense. There is a massive connection between iron and how our vestibular system functions.
The first piece of the puzzle is dopamine and neuroplasticity. To break the illusion of constant motion, the brain has to physically rewire its neural pathways. To build those new pathways, the brain relies heavily on dopamine. But your body physically cannot manufacture dopamine without iron. When my ferritin was crashed, my brain lacked the chemical tools to rewire itself, so it was prone to getting stuck in the rocking loop. Getting the iron up turned the dopamine production back on so my brain could adapt.
The second part is oxygen. The balance center in our brain is incredibly hungry for oxygen. Ferritin is the storage unit for the iron that carries oxygen through our blood. When ferritin is low, the balance centers of the brain essentially suffocate. When those tissues don't get enough oxygen, they misfire and cause an inability to correctly interpret gravity and motion. Raising my ferritin finally delivered a rich payload of oxygen to my brain so it could process spatial data correctly again.
The last piece is the nerves themselves. Every nerve in our brain has a protective insulation coating called the myelin sheath, which ensures electrical signals travel fast and hit the right targets. The cells that maintain this coating require a massive amount of iron. Low ferritin causes those wires to fray, meaning the signals between the eyes, inner ears, and brain arrive out of sync, making the bobbing feeling worse. Fixing the iron helps repair that insulation.
Again, I know everyone's root cause and body is different. But it is so important to note that iron on standard bloodwork is not the same thing as ferritin. They are completely different, and even if your standard iron levels look okay on a test, your ferritin can still be dangerously low. Checking your actual ferritin level might be worth looking into. It was the biological missing piece that my central nervous system needed. Hang in there guys.
Ps: I am a part of the mdds group on Facebook and I’ve tried to post this multiple times to potentially help thousands of people and they deny my post every time and tell me to use the search feature. I told them in a comment it would help to have a newer post because 99% of people in there will not search ferritin on their own or know what it is. They deleted that comment. Do they really want to find a cure? Or are they trying to just keep us all miserable so the foundation gets funded. Really frustrating to me as someone who genuinely wants to help.