I can absolutely relate darling lady. I too have had MdDS for over 30 years. And have only recently been officially diagnosed. I live in Australia and very little is known here either. I was 23 when I first started getting symptoms and was put onto Xanax and antidepressants which helped...until they stopped working 6 months ago after some very tough, personal issues kicked my ass! I'm now coping with MdDS, VM, Disautonomia and Parkinson's symptoms which may or may not resolve? No body knows? I'm having tests with a Neurology team.. hopefully soon but Covid has knocked our hospitals into crisis mode so the wait for answers continues? I like you, have always been outgoing, fit, and kind to others. But we are all human and don't always understand what others are going through until we're unwell ourselves. Don't be hard on yourself.. you are coping with so much and friends/family/partners and strangers cannot know how this feels for us. It's also hard when you look normal.. but even that is harder to maintain some days. I wish you so much love and healing and thank you for sharing this video with others who are going through the same..and those who aren't. 🙏❤
you’re awesome as heck. it’s hard being an adult and having some dilapidating like this, especially with kids. it’s hard to be empathetic to random bystanders, but this is a reminder to just treat people with kindness. regardless of how hard of a time they’re giving you, how rough a day you personally had, or whatnot.
Thank you Ryan I appreciate your sweet comment. It was difficult to articulate, but, important to me for obvious reasons. I have pretty tough skin, but, after months of feeling pretty defeated, it was enough to sting, and a valuable lesson for me to learn as well. I have amazing understanding children, it's hard not to be able to take them to do all the fun things we used to. Hopefully, this will be behind us soon.
@@imenarfaoui549 I take klonopin, do not do well on SSRI OR SNRI medications, trying CBD oil to naturally increase my serotonin levels. I appreciate your suggestions 💜
I have this condition and have had it for 2 years now. You need to get to a vestibular neurological specialist. Dallas TX has one and his name is Shin Beh at the UT Southwestern hospital but more importantly you need to start trying medications. Yes, no one wants to be on benzos but they truly gave me my life back during my worst symptoms. I play ice hockey, I do MMA, I am 28 years old and no one would know I suffer from this disease like you do. Clonozepam is what helped me and I'm now tapering off, hoping to have a full recovery. Please let me know if I can help further, I am not a crazy person and truly know a lot about this condition from personal experience
Thank you Alex, I appreciate the recommendations. I've been on Klonopin since January. Not helping a ton. Also was trailed on Topomax for 3 months, that wasn't working. Doc stopped that one, wants me to start depakote instead, also on verapamil for about a month. I feel like a genui pig. Going to explore possibly Mt sanai, Dr. Cha clinical trial, or a group of functional neurologist near my home. I can't travel without help because of the triggers, so consulting out of state is really hard.
I can absolutely relate darling lady. I too have had MdDS for over 30 years. And have only recently been officially diagnosed. I live in Australia and very little is known here either.
I was 23 when I first started getting symptoms and was put onto Xanax and antidepressants which helped...until they stopped working 6 months ago after some very tough, personal issues kicked my ass!
I'm now coping with MdDS, VM, Disautonomia and Parkinson's symptoms which may or may not resolve?
No body knows?
I'm having tests with a Neurology team.. hopefully soon but Covid has knocked our hospitals into crisis mode so the wait for answers continues?
I like you, have always been outgoing, fit, and kind to others. But we are all human and don't always understand what others are going through until we're unwell ourselves.
Don't be hard on yourself.. you are coping with so much and friends/family/partners and strangers cannot know how this feels for us.
It's also hard when you look normal.. but even that is harder to maintain some days.
I wish you so much love and healing and thank you for sharing this video with others who are going through the same..and those who aren't.
🙏❤
I wish you the best luck❤️
I feel this so much...
you’re awesome as heck. it’s hard being an adult and having some dilapidating like this, especially with kids. it’s hard to be empathetic to random bystanders, but this is a reminder to just treat people with kindness. regardless of how hard of a time they’re giving you, how rough a day you personally had, or whatnot.
Thank you Ryan I appreciate your sweet comment. It was difficult to articulate, but, important to me for obvious reasons. I have pretty tough skin, but, after months of feeling pretty defeated, it was enough to sting, and a valuable lesson for me to learn as well. I have amazing understanding children, it's hard not to be able to take them to do all the fun things we used to. Hopefully, this will be behind us soon.
take benzodiazipine and amitryptiline they WORKED for me
@@imenarfaoui549 I take klonopin, do not do well on SSRI OR SNRI medications, trying CBD oil to naturally increase my serotonin levels. I appreciate your suggestions 💜
Carry on dear! You’ve got this.. though it can be hard to relate to what you’re going through, but you’re in my prayers!!
Thank you sweet Gentille 💜 Believing in answered prayers, trusting in God's timing!
Keep posting. We need you to help us spread the word. You are so brave. Keep fighting.
You got it 💜
I have this condition and have had it for 2 years now. You need to get to a vestibular neurological specialist. Dallas TX has one and his name is Shin Beh at the UT Southwestern hospital but more importantly you need to start trying medications. Yes, no one wants to be on benzos but they truly gave me my life back during my worst symptoms. I play ice hockey, I do MMA, I am 28 years old and no one would know I suffer from this disease like you do. Clonozepam is what helped me and I'm now tapering off, hoping to have a full recovery. Please let me know if I can help further, I am not a crazy person and truly know a lot about this condition from personal experience
Thank you Alex, I appreciate the recommendations. I've been on Klonopin since January. Not helping a ton. Also was trailed on Topomax for 3 months, that wasn't working. Doc stopped that one, wants me to start depakote instead, also on verapamil for about a month. I feel like a genui pig. Going to explore possibly Mt sanai, Dr. Cha clinical trial, or a group of functional neurologist near my home. I can't travel without help because of the triggers, so consulting out of state is really hard.