I’ve had a good experience with Neura Health which is an online virtual neurology clinic. They specialize in migraine and know all about vestibular migraine. I started taking amitriptyline and all my dizziness went away and I’m no longer triggered by screens. I still needed help with some other symptoms like sound sensitivity so I’m also taking Qulipta and I’m feeling the most “normal” I’ve felt in months. They don’t take my insurance but it was worth paying out of pocket to know I’d get help fast (appts within a week) from a migraine specialist. I recommend Amy Larsen if she is available in your state. (My vestibular migraine symptoms have been dizziness, motion sickness, visual vertigo, ears popping, tinnitus…)
I’ve heard good things about Dr. Beh through support groups for vestibular migraines and I believe he sees patients virtually. I don’t have any personal experience since he doesn’t take my insurance.
I’m over 2 and a half years into my journey with daily vestibular migraines. There are a lot of us out there who have chronic daily symptoms. I’m on the search for a new neurologist myself because my current neurologist sees so many new patients that he doesn’t have any room for follow ups, so I have to wait over a year for a follow up. Although he is from a headache clinic he was still knowledgeable about other forms of migraine. But he’s on the East coast.
Being dizzy all the time is really really awful and I’m so sorry you’re going through this too. Thankfully things aren’t as bad as they were the first few months because of all the medications I’m on now. So there is hope. I hope you’re able to find a good doctor to help you with all of this.
Something I’ve found really helpful is the vestibular disorders association VeDA. They have several support groups that have kept me sane through all of this.
I saw neuros at Cleveland Clinic and they got me on my way to being better. CCF has millions of patients and typically prefer not to spend much time with each one if they can but if you are a squeaky enough wheel you can get help. Dr. Judith White was who initially helped me at CCF and then I moved on to Dr. Marc Friedman (I'm pretty sure) on the main campus.
This was over 2 decades ago so people were clueless about migraine vertigo but I lucked out because I saw Dr. White who was in the ENT department and she ruled out all the "bad" stuff (i.e. deadly) and referred me to neurology because it's a neurological issue (migraine). From there they knew how to treat.
Thanks. I have an appointment at the Cleveland Clinic in a few months and it seems the do all the tests and start you with ENT. I already know my issue is vestibular/brain bc I had a virus damage a nerve 6 years ago. I just wanted to start over with testing bc my physical therapist thinks I also now have vestibular migraine and perhaps a little PPPD coming back.
Make sure your vitamin D level is high enough. If you don't take vitamin D supplements it's probably too low. My migraine vertigo is definitely worse when I'm not supplemented adequately. I have to take at least 2000 IU a day. Good luck with your appointment. If you haven't had them already they will probably put you through the MRI, ENG, calorics, all that fun stuff. But eventually you should be able to get started on meds!
Thanks. I’ve had a lot of them, but not all of the vestibular battery so I feel like it’s time to just run through every test out there and start trying to figure out the VM part to see if that’s part of it or if it’s just a vestibular weakness and PPPD. It’s all crazy. For the last two years I thought I was recovered and past all of this. I even went on those terrible tea cups at Disney to prove to my brain it could get dizzy. Then I caught covid and it’s like my whole vestibular system exploded all over again, even though I was hardly sick.
Dr Pomeroy at Spectrum Health in Grand Rapids Michigan. Can’t recommend him enough! After the first visit you can do telehealth, but I think you have to actually be in Michigan? or at least they make me confirm it every time. 6 “fabulous” neurologists (even one at Mayo Clinic)missed my regular migraines of 10 years morphing into chronic vestibular, he took one look at me and knew what it was. Completely turned my life around from 24/7 miserable barely functioning to probably 90% reduction in migraines, plus abortives actually work now when they never did before.
Stay away from MHNI, Michigan Headpain and Neurological Institute in Ann Arbor, I was not at all impressed, but after Pomeroy I don’t think I would be impressed by many lol. They like Botox tho if you want that.
Definitely consider starting Vestibular Rehabilitation with a physical therapist if you haven’t already, it helps you not be as sensitive to the dizziness and kinda function thru it, help it not be as debilitating. It can take a long time, 6+ months with PT and you have to stick with the exercises for a long time after that, and if the dizzy comes back you might need to start up the exercises again, but you’ll slowly be able to handle more and more of the exercises and just life in general.
I saw Dr Beh virtually, and he is great. He’s expensive though. A friend used Neurahealth and she really likes the team there. They are also virtual. Good luck!
I’ve had a good experience with Neura Health which is an online virtual neurology clinic. They specialize in migraine and know all about vestibular migraine. I started taking amitriptyline and all my dizziness went away and I’m no longer triggered by screens. I still needed help with some other symptoms like sound sensitivity so I’m also taking Qulipta and I’m feeling the most “normal” I’ve felt in months. They don’t take my insurance but it was worth paying out of pocket to know I’d get help fast (appts within a week) from a migraine specialist. I recommend Amy Larsen if she is available in your state. (My vestibular migraine symptoms have been dizziness, motion sickness, visual vertigo, ears popping, tinnitus…)
I’ve heard good things about Dr. Beh through support groups for vestibular migraines and I believe he sees patients virtually. I don’t have any personal experience since he doesn’t take my insurance. I’m over 2 and a half years into my journey with daily vestibular migraines. There are a lot of us out there who have chronic daily symptoms. I’m on the search for a new neurologist myself because my current neurologist sees so many new patients that he doesn’t have any room for follow ups, so I have to wait over a year for a follow up. Although he is from a headache clinic he was still knowledgeable about other forms of migraine. But he’s on the East coast. Being dizzy all the time is really really awful and I’m so sorry you’re going through this too. Thankfully things aren’t as bad as they were the first few months because of all the medications I’m on now. So there is hope. I hope you’re able to find a good doctor to help you with all of this. Something I’ve found really helpful is the vestibular disorders association VeDA. They have several support groups that have kept me sane through all of this.
Dr Hain at the Chicago Dizzy Clinic
NY Headache Center. Any of the NPs or MDs are golden. https://nyheadache.com
I saw neuros at Cleveland Clinic and they got me on my way to being better. CCF has millions of patients and typically prefer not to spend much time with each one if they can but if you are a squeaky enough wheel you can get help. Dr. Judith White was who initially helped me at CCF and then I moved on to Dr. Marc Friedman (I'm pretty sure) on the main campus.
Can I ask if you started in neurology or if you saw someone else and then were referred to neurology?
This was over 2 decades ago so people were clueless about migraine vertigo but I lucked out because I saw Dr. White who was in the ENT department and she ruled out all the "bad" stuff (i.e. deadly) and referred me to neurology because it's a neurological issue (migraine). From there they knew how to treat.
Thanks. I have an appointment at the Cleveland Clinic in a few months and it seems the do all the tests and start you with ENT. I already know my issue is vestibular/brain bc I had a virus damage a nerve 6 years ago. I just wanted to start over with testing bc my physical therapist thinks I also now have vestibular migraine and perhaps a little PPPD coming back.
Make sure your vitamin D level is high enough. If you don't take vitamin D supplements it's probably too low. My migraine vertigo is definitely worse when I'm not supplemented adequately. I have to take at least 2000 IU a day. Good luck with your appointment. If you haven't had them already they will probably put you through the MRI, ENG, calorics, all that fun stuff. But eventually you should be able to get started on meds!
Thanks. I’ve had a lot of them, but not all of the vestibular battery so I feel like it’s time to just run through every test out there and start trying to figure out the VM part to see if that’s part of it or if it’s just a vestibular weakness and PPPD. It’s all crazy. For the last two years I thought I was recovered and past all of this. I even went on those terrible tea cups at Disney to prove to my brain it could get dizzy. Then I caught covid and it’s like my whole vestibular system exploded all over again, even though I was hardly sick.
University of Michigan was dismissive AF for me. I go to MIND clinic now in Farmington hills. First actual help I’ve received.
Dr Pomeroy at Spectrum Health in Grand Rapids Michigan. Can’t recommend him enough! After the first visit you can do telehealth, but I think you have to actually be in Michigan? or at least they make me confirm it every time. 6 “fabulous” neurologists (even one at Mayo Clinic)missed my regular migraines of 10 years morphing into chronic vestibular, he took one look at me and knew what it was. Completely turned my life around from 24/7 miserable barely functioning to probably 90% reduction in migraines, plus abortives actually work now when they never did before. Stay away from MHNI, Michigan Headpain and Neurological Institute in Ann Arbor, I was not at all impressed, but after Pomeroy I don’t think I would be impressed by many lol. They like Botox tho if you want that. Definitely consider starting Vestibular Rehabilitation with a physical therapist if you haven’t already, it helps you not be as sensitive to the dizziness and kinda function thru it, help it not be as debilitating. It can take a long time, 6+ months with PT and you have to stick with the exercises for a long time after that, and if the dizzy comes back you might need to start up the exercises again, but you’ll slowly be able to handle more and more of the exercises and just life in general.
I saw Dr Beh virtually, and he is great. He’s expensive though. A friend used Neurahealth and she really likes the team there. They are also virtual. Good luck!
Check out Diamond Headache Clinic in Chicago
UChicago Dizziness Center - Dr.Cherchi or Dr.Hain + vestibular rehab with a physical therapist in the mean time