I’m looking for a neurologist (anywhere in the US) who’s willing to see me for a virtual visit. Not having luck with my condition and the “headache specialist” I was sent to in Durham, NC was of no help. I haven’t yet found the right medication and this is taking a huge toll on my quality of life. I am thinking that since the pandemic the virtual world has opened up and maybe I can find a doctor in another state who could give me some other suggestions or recommend another medication. The doctors I have seen so far here in my corner of NC (Cary-Raleigh area) seem to get angry at me for not responding to meds or for complaining about side effects. I understand this is a difficult condition and I’ve been told I have refractory migraines. I am on Emgality (2nd month) and I seem to respond and then not respond to medicines. Ideally I want to get off the injections. Ami/Nori were the only meds I responded to originally but now it seems Nortriptyline is not helping anymore. The plan was to go up to 50mg slowly, however I reached 45mg and still same daily migraines so instead I am reducing it to 35mg (with permission from my current neuro). I’m wondering if I should really just get off all meds and see how I cope with things. But on the other hand I think I would like to stay on one that would benefit from and not give me any long term problems as a result. Thanks to anyone in advance who replies to this post with their recommendation. And many thanks to @turnitaround who allowed me to create a new topic/post. Thanks again.
Can anyone suggest a neurologist in the US who is familiar with our condition?
I have heard Dr. Shin Beh is good with vestibular migraines. I have not met him but he also does virtual visits. The only problem is he doesn’t take any insurance and initial evaluation is usually $600.
There’s something about Shin Beh that I don’t really trust. I can’t put my finger exactly on what it is, but it seems like he’s making incredible money off of this condition while providing care that doesn’t seem to be super far above the average based on the reviews I’ve read. I found his book slightly helpful at best, since it doesn’t really provide a whole lot of novel advice beside having information consolidated all in one place.
Depending on where you are, I would try to get in with a neurotologist or neurologist at a large academic medical institution affiliated with a medical school, typically in a major city. Most of these people will be up-to-date regarding vestibular migraine and have the appropriate knowledge base to treat it.
Thank you so much for this feedback. I really needed to hear it! Love, love, love your post. I had also read Dr Mauskopf’s books and I messaged his office in NY. Let’s see if I hear back from them. Thanks again.
A post was split to a new topic: Dealing with frustration AGAIN:
Try doctor in ian Purcell in San Diego.
I was first diagnosed by Dr. Heather Adkins in 2014 at Duke when she was still associated with the University. I believe she still practices in Durham and has opened a couple different private practices since departing from Duke around 2017. She has an interesting personality and from what I understand from a long, archived post on this forum under its original website, someone stated she shared with them she has/had VM (migraine vertigo).
When I knew nothing of the disorder and was still not diagnosed, I kind of went on a whim to see her based on recommendation for follow up from the head Duke ENT along with a referral to their eye neuro.
I thought my problem was physical, brain, etc. and no way it could be migraine related because I did not have headaches and only dizziness/vertigo. She explained I could have those symptoms and no headache. I kind of blew it off. She ordered a brain MRI, I did more physical therapy, etc. with no luck and I finally agreed months later to try Topamax. I had a terrible time on that medicine and ten years hindsight, and after seeing Dr. Hain for several years, I would have preferred to start on something different. I tried Topamax for several months and got off of it and then realized it did substantially help my dizziness and I did actually have head pressure / constant level of migraine/headache. That’s when it clicked, I actually had a migraine disorder that was producing all of my terrible neck pain/tightness, vertigo, etc. than simply my neck producing it all. She was on point / in line with Dr. Hain’s flow chart for alternative medicines to try which many other doctors do not consider. I eventually was not in Durham anymore after about 1.5 years seeing her. My wife was in school down there so I was only in town every week or two. She was very responsive responding to all my messages and I credit her for doing that two looking back as I was very emotionally crushed and anxious to resolve the issue.
Back then, she was well known for running behind an hour or two, and that was mainly b/c she would take as much time with patients as they liked, listening, etc. which I needed greatly for emotional benefit and for a doctor to affirm what I was feeling was real, and I was not simply crazy. I do owe her a huge credit / thank you for correctly diagnosing me and I would reconnect with her again if I was back in the Durham area. There may be some who would not recommend her based on wait times back then, admn. support in the office lacking, or other quirks, but her knowledge of the disorder was well demonstrated for me.
2 posts were merged into an existing topic: Suffering’s Diary