Five years in July. I am going to purchase the book. MdDS is a living nightmare. That's all I can say. I am going to keep at it, continue to work full time as long as I can, and enjoy my family. My daughter is getting married next year, and I will do whatever it takes to do all the mother/daughter "fun stuff" with her. Dr. Yonit Arthur of The Steady Coach and Pain Free You with Dan Buglio on TH-cam are great resources.
Congratulations on your daughter getting married next year. Dr Beh was so informative about MdDS. That is wonderful you are pushing through even though it is hard. Dr Yonit Arthur is wonderful. I didn't know about Dan Buglio, so thanks for sharing. His videos look very interesting.
Loved this conversation!!!! Just got the book in the mail a few days ago and am excited to dive in. Thank you Dr. Beh for all you do for us! And thank you Marissa and Joy for bringing us all some incredible resources and love.
I wish we knew why some people have episodic MdDS and others don't. I've been lucky to have had lots of remission over the years and I am back in remission again now. Based on what I learnt from Dr Dai I think this remission will stick but if I do get another episode I would go to Antwerp (I'm in the UK) and donate my data via the clinical trials there. I also found a haptic device (the Basslet - the subwoofer, not the fish!) which worked like a charm and could also switch off MdDS symptoms by putting my feet on a TENS machine. I am concerned about the overdiagnosis of PPPD and that some people have had their accurate MdDS diagnoses changed to PPPD without any further consultations taking place.
Kimberly I too same symptoms and mine was caused too by extreme heightened state of anxiety from events and nervous breakdown.. I saw you today on the pain free you interview and was surprised to see you on here...
I'm glad you mentioned family members since I have/had Familial MdDS. As such I wonder if there is any research about the genetic component of MdDS? I think Dr Wolfe has been looking into this but I don't know much about it. In the UK we have a woman with MdDS and all three of her daughters have it too.
Nancy’s speed walker is cool 👍🏽 I agree with her about the escalator. Problem with the dizziness is chronic vomiting. Sitting down to eat and bouncing in the chair makes food fly right back out of the stomach out of the mouth. I have to stand on a wobble surface with my eyes closed to eat, preferably over a sink. Sadly, fresh food is hard to digest and keep down. Over cooked, reheated soup and meals, protein powder and protein bars have a chance of making its way through the body and through the digestive system. Drinking water with food will make everything come back up. Water, food, supplements that need to be taken with food and water
My diagnosis is vestibular migraine...but I suspect I might have MdDS after reading a pub med article that discusses subsets of MdDS...it addresses MT (motion triggered) MdDS and SO (spontaneous onset) MdDS...Because I had not been on boat, ship, plane, train, etc my doctor told me I couldn't have MdDS...I told him about the subsets in the pubmed article and pointed out I might have SO MdDS but he wasn't convinced. I saw another doctor who finally ran some tests to rule out other causes: VNG,VEMP, some other auditory tests, an MRI of the brain to rule out a tumor b/c I'm a cancer survivor, and a CT scan of the inne ear...these were all normal except the auditory tests did show I have some hearing loss in the low decibel range...I also have roaring tinnitus in my head as well as the rocking motions, the sensation of the floor vibrating when it's not, and balance issues... This all goes away when I'm riding in a car....His clinical diagnosis was Vestibular migraine. I am satisfied the diagnosis is right BUT the neurologist I was referred to isn't convinced it is VM..why? Because my episodes are chronic vs episodic. I pointed out that VM can be chronic but he still wasn't convinced I had the right Dx......I referenced him to the Johns Hopkins websites on VM as well as the Mayo clinic to no avail. After hearing today from Dr. Beh that Menieres symptoms can include roaring tinnitus, which is the first time I've heard that, and b/c I do have roaring tinnitus in my head, and hearing loss in the low decibel range as well as ear problems in my left ear (my ear felt stopped up ..turned out there was fluid behind the ear drum and my head sounded like a melon when I tapped on the left side; myringotmy was performed) it makes me wonder if I might have Menieres, plus I'm still wondering as well if I might have MdDS instead, b/c riding in a car cancels all my symptoms, . Either way, MdDS, Menieres, or VM, the treatments are similar..the neuro Rx'd Ajovy saying if it worked it would prove I had VM....I was on it 4 months, it helped somewhat...my zero symptom days increased from 8 to 10 a month... he thought not good enough considering the expense, my age (73) and some other things, so I was put on Amitriptyline. One low dose of it gave me some serious heart palpitations, so that was stopped........ next drug was Xanax, .25 mg daily for two weeks, then .25mg daily 2x a day which worked beautifully, for one month, until it didn't due to inter-dose withdrawal and/or tolerance withdrawal...I didn't want to unnecessarily be on a benzo long term if other options worked, so I was kept on the Xanax and Rx'd Zoloft..13 weeks on it now...might be working but not sure b/c I'm tapering off the Xanax and am experiencing withdrawal symptoms.....am doing a very slow taper..down to .125mg daily from .50mg daily...I reduce the Xanax by 1/8 each week....When the taper is finished, IF the Zoloft does not work alone, I might consider a low dose of a long acting benzo instead of or in addition to the Zoloft...... I am 73 and have no real issues with side effects taking these 2 drugs except the Zoloft caused insomnia until I switched to taking it in the a.m. instead of before bed. I'm in my 4th year of this nightmare, on meds since Jan this year b/c it took 3 years to get a diagnosis.....it's been a journey which I describe like this: This journey, the VM journey, is like traveling without a map, not knowing where you're supposed to go let alone how to get there, and along the way finding pieces of a map that when put together show you the next step and step by step you eventually get to the right place.
Thank you for sharing your story. Finding the right medication can be very daunting and you are right it is like a puzzle. So many of the vestibular disorders share the same symptoms. I (Joy) have ringing in my right ear but Marissa does not. Wishing you the best on finding which medicines and dosages work for you.
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Five years in July. I am going to purchase the book. MdDS is a living nightmare. That's all I can say. I am going to keep at it, continue to work full time as long as I can, and enjoy my family. My daughter is getting married next year, and I will do whatever it takes to do all the mother/daughter "fun stuff" with her. Dr. Yonit Arthur of The Steady Coach and Pain Free You with Dan Buglio on TH-cam are great resources.
Congratulations on your daughter getting married next year. Dr Beh was so informative about MdDS. That is wonderful you are pushing through even though it is hard. Dr Yonit Arthur is wonderful. I didn't know about Dan Buglio, so thanks for sharing. His videos look very interesting.
Loved this conversation!!!! Just got the book in the mail a few days ago and am excited to dive in. Thank you Dr. Beh for all you do for us! And thank you Marissa and Joy for bringing us all some incredible resources and love.
Thank you Dr. Beh for giving us your time!! Also, a thank you to @davidmorill, @kimberlywarner, and our support group members!
I wish we knew why some people have episodic MdDS and others don't. I've been lucky to have had lots of remission over the years and I am back in remission again now. Based on what I learnt from Dr Dai I think this remission will stick but if I do get another episode I would go to Antwerp (I'm in the UK) and donate my data via the clinical trials there. I also found a haptic device (the Basslet - the subwoofer, not the fish!) which worked like a charm and could also switch off MdDS symptoms by putting my feet on a TENS machine.
I am concerned about the overdiagnosis of PPPD and that some people have had their accurate MdDS diagnoses changed to PPPD without any further consultations taking place.
Thank you for sharing. I do wonder the same thing too about people not being diagnosed with MdDS.
Thank you for your expertise . Just bought the book
Hoping you find some helpful information in it.
Kimberly I too same symptoms and mine was caused too by extreme heightened state of anxiety from events and nervous breakdown.. I saw you today on the pain free you interview and was surprised to see you on here...
I'm glad you mentioned family members since I have/had Familial MdDS. As such I wonder if there is any research about the genetic component of MdDS? I think Dr Wolfe has been looking into this but I don't know much about it. In the UK we have a woman with MdDS and all three of her daughters have it too.
This is a great questions. If we find any info on this we will share.
Nancy’s speed walker is cool 👍🏽 I agree with her about the escalator.
Problem with the dizziness is chronic vomiting. Sitting down to eat and bouncing in the chair makes food fly right back out of the stomach out of the mouth. I have to stand on a wobble surface with my eyes closed to eat, preferably over a sink. Sadly, fresh food is hard to digest and keep down. Over cooked, reheated soup and meals, protein powder and protein bars have a chance of making its way through the body and through the digestive system. Drinking water with food will make everything come back up. Water, food, supplements that need to be taken with food and water
Thank you for your comments. Yes, it can be difficult at times to find the right balance with food, medicines, rest & etc.
My diagnosis is vestibular migraine...but I suspect I might have MdDS after reading a pub med article that discusses subsets of MdDS...it addresses MT (motion triggered) MdDS and SO (spontaneous onset) MdDS...Because I had not been on boat, ship, plane, train, etc my doctor told me I couldn't have MdDS...I told him about the subsets in the pubmed article and pointed out I might have SO MdDS but he wasn't convinced. I saw another doctor who finally ran some tests to rule out other causes: VNG,VEMP, some other auditory tests, an MRI of the brain to rule out a tumor b/c I'm a cancer survivor, and a CT scan of the inne ear...these were all normal except the auditory tests did show I have some hearing loss in the low decibel range...I also have roaring tinnitus in my head as well as the rocking motions, the sensation of the floor vibrating when it's not, and balance issues... This all goes away when I'm riding in a car....His clinical diagnosis was Vestibular migraine. I am satisfied the diagnosis is right BUT the neurologist I was referred to isn't convinced it is VM..why? Because my episodes are chronic vs episodic. I pointed out that VM can be chronic but he still wasn't convinced I had the right Dx......I referenced him to the Johns Hopkins websites on VM as well as the Mayo clinic to no avail. After hearing today from Dr. Beh that Menieres symptoms can include roaring tinnitus, which is the first time I've heard that, and b/c I do have roaring tinnitus in my head, and hearing loss in the low decibel range as well as ear problems in my left ear (my ear felt stopped up ..turned out there was fluid behind the ear drum and my head sounded like a melon when I tapped on the left side; myringotmy was performed) it makes me wonder if I might have Menieres, plus I'm still wondering as well if I might have MdDS instead, b/c riding in a car cancels all my symptoms, . Either way, MdDS, Menieres, or VM, the treatments are similar..the neuro Rx'd Ajovy saying if it worked it would prove I had VM....I was on it 4 months, it helped somewhat...my zero symptom days increased from 8 to 10 a month... he thought not good enough considering the expense, my age (73) and some other things, so I was put on Amitriptyline. One low dose of it gave me some serious heart palpitations, so that was stopped........ next drug was Xanax, .25 mg daily for two weeks, then .25mg daily 2x a day which worked beautifully, for one month, until it didn't due to inter-dose withdrawal and/or tolerance withdrawal...I didn't want to unnecessarily be on a benzo long term if other options worked, so I was kept on the Xanax and Rx'd Zoloft..13 weeks on it now...might be working but not sure b/c I'm tapering off the Xanax and am experiencing withdrawal symptoms.....am doing a very slow taper..down to .125mg daily from .50mg daily...I reduce the Xanax by 1/8 each week....When the taper is finished, IF the Zoloft does not work alone, I might consider a low dose of a long acting benzo instead of or in addition to the Zoloft...... I am 73 and have no real issues with side effects taking these 2 drugs except the Zoloft caused insomnia until I switched to taking it in the a.m. instead of before bed. I'm in my 4th year of this nightmare, on meds since Jan this year b/c it took 3 years to get a diagnosis.....it's been a journey which I describe like this: This journey, the VM journey, is like traveling without a map, not knowing where you're supposed to go let alone how to get there, and along the way finding pieces of a map that when put together show you the next step and step by step you eventually get to the right place.
Thank you for sharing your story. Finding the right medication can be very daunting and you are right it is like a puzzle. So many of the vestibular disorders share the same symptoms. I (Joy) have ringing in my right ear but Marissa does not. Wishing you the best on finding which medicines and dosages work for you.
Not sure i agree that MDDS prefer to stand still. People with MDDS are unstable when walking. Not so much when not walking around.
Thanks for commenting.
Visual symptoms in MDds?😢
I have visual warping and disorientation along with the bobbing and swaying. Also weird spatial awareness with distorted sound perception sometimes.
www.ncbi.nlm.nih.gov/pmc/articles/PMC5834551/ This link explains the subsets of MdDS which includes MT(motion triggered) AND SO (spontaneous onset).
Thank you for sharing this link. I am going to share this link on the Community Page!!!!
@@vestibularjoy Your're welcome.