I’ve been to a host of doctors: primary care (who had no idea about any of this), a migraine specialist (who has little time/doesn’t often see patient like me), a neurologist (who prescribed meclizine and sent me on my way), a neurootologist (who’s seen people with this but was uncaring/had little time - I’ve contacted others who seem to be the same). For the past few months, I’ve been seeing a psychiatrist for MAV treatment as I also have anxiety and this doctor at least has time to spend with me and go over the options of different medications. However, I went to see him yesterday and he kept saying things that made me feel like he doesn’t totally believe the MAV diagnosis. I know he wasn’t doing it to be unhelpful, but I just wish I could see a doctor who both recognized this condition as the probable cause of my symptoms and had time to talk with me/make me feel like I’m not being rushed out the door.
So, what type of doctor do you see for your MAV medication management?
And if anyone has a recommendation for a good primary care doc in NYC, please let me know. I don’t expect the doc to be completely in the know about MAV, but I would like to find one who’s at least understanding and willing to explore the treatment options, because that’s what this seems to be – one big cantankerous exploration.
HI
Ive had all of the different doctors, and there are only a handful that seem to know what MAV is, and while that is frustrating, all the meds, lifestyle recommendations etc…seem to be the same drugs they all use…whether pyche or neuro…the key is finding any doctor who is willing to work with you and let you control what you choose to do…within reason. I have found 2 of these doctors …both psychiatrists…and they are very patient and understanding. Maybe you will find somone on here who can refer you to someone in NYC. I did find a doctor on line who specializes in the psyche meds…I think his name is Adam Goldberg or ? I was looking up a psychopharmacologist (sp?) specialist…someone who really knows their meds…more important than someone who deals with addictions, etc…I truly believe we are dealing with brain chemistry, and the defect in wiring is causing these malfunctions. The underlying cause of the defect is up for debate…
Good luck…I have found this website as helfpul as any doctor…except for the power of the pen…the meds if needed.
Kelley
There actually aren’t a lot of doctors who understand and work in the area of chronic migraine. To be honest I’ve learnt more on this forum than I EVER would have from just seeing my specialist. He’s got hundreds of other people to see so doesn’t have the time to spend hours teaching me all about MAV. If you look in the archive section you’ll see a bunch of topics addressing the various ways to combat migraine. In a nut shell (assuming nut shells aren’t a trigger for you ) you can fix up your lifestyle by avoiding alcohol, doing moderate exercise and sticking to a strict sleep schedule. You can try the migraine diet - it works for a lot of people. Other than that there a literally dozens of meds you can try across several different classes of med. Each of the doctors have their own favourite. Here in Sydney Dr Halmagyi favours Prothiaden. It’s working great for me. Jen in Brisbane is also doing really well on it.
So, what you need is a doctor who is willing to work with you to prescribe one of the available drugs. A psychiatrist can prescribe meds and would be most likely most happy prescribing things in the anti-depressant world as that is what they are most familiar with. Even if he/she doubts you have migraine (frustrating!) and suspects you have a psych issue instead, any of those anti-depressant drugs would be appropriate to try anyway.
I’ve been lucky in that my regular GP lets me call the shots. I show up and say I would like to try medication X and she usually writes me a script. She doesn’t really get the whole MAV thing but knows I was dxed by a specialist and that I know what I’m talking about most of the time.
Hope you can find someone who will work with you on this.
my primary care pretty much helps me with everything also except for the hormonal stuff.
right now i haven’t found anything to help!!! frustrated soooooooo badly right now. gotta go back to work next week and no better. if i could retire I would but i can’t
I see a neurologist for the MAV/migraine variant treatment. She is much like Scott’s primary doctor and pretty much lets me guide treatment since I provided her with an exhaustive list of doctors and medications & dosages that I had tried over a 3 year span of misdiagnoses. Apparently that was impressive enough to convince her that I had already tried many things that she would have suggested otherwise. The same is true with my primary care doctor; all my doctors are familiar with my history and extreme sensitivity to medications. I, too end up educating most of the medical people around me. So far this forum has been the best source of information and support on the planet.
Gail
I think my neurologist grew impatient with me. i just can’t take those strong drugs. Twice he gave me antidepressants and i just can’t take them.
at least my favorite dr knows my sensitivities and is sympathetic with me.
I got lucky and after about a dozen or so various specialists and a few GP’s over 6 or so years I was hospitalized and the neurologist that saw me was a friend of Dr. Hain of Chicago Hearing and Dizziness Clinic. None of those other MD’s had a clue and while they knew something was up they pretty much indicated I would have to live with my condition which by that time had me nearly bead ridden. Chicago was sure worth the trip!
You asked for a primary care doctor in NYC, and I don’t have a primary care doctor to recommend, but if you want a headache specialist/neurologist in NYC who is very well versed in MAV (what he refers to as vestibular migraine), see Dr. Lawrence Newman at St. Lukes Roosevelt. He treats lots of patients with vestibular migraine and he believes 100% that this is a real disease, not just hypochondria or something the patient is somehow causing for themselves. So I think he’d be a great person to go to for a diagnosis, and then treatment if it’s called for. Though I’ve had almost no success w/ drugs (or anything else) so far, he’s tried all sorts of things with me. For whatever reason, I just haven’t been one of the lucky ones who’s helped by drugs, but it’s not for lack of trying! Dr. Newman definitely believes vestibular migraines are a real migraine variant & will help you find solutions if he diagnoses you with the disease. Good luck, I hope you have some success!
oh, wow, I’m not sure I can even remember them all (this is over a span of 6 years). I’ve tried several different kinds of antidepressants (both SSRIs and tricyclics), beta blockers & calcium channel blockers, namenda, topamax, botox shots, accupuncture, all sorts of lifestyle changes. Pretty much everything out there (and I’m sure there’s more that I’m forgetting right now). And I’m extremely prone to side effects, so at this point I’m very reluctant to try anything new considering that it would just be a variation on something I’ve tried before (i.e. a different antidepressant or a different beta blocker). I figure that when they come up with something that works in a different way than any of the current meds, something in a totally different category, then maybe I’ll be ready to experiment again (that was why I’d tried the Namenda, since it worked in a wholly different way than any of the previous meds).
The only thing that’s helped me at all was the Topamax, but even that was only a slight improvement, so I go back & forth on whether it’s worth the side effects (basically, when I’m on it, I think it’s not worth it, and then when I go off it & remember how that feels, I suddenly think the side effects were worth it!)
Dr. Newman was one of the migraine specialists I contacted. He doesn’t take my insurance but I figured if he would do anything differently it would be worth paying the out-of-pocket costs. He responded to my email basically saying I’m doing exactly what he would (trialling different medications), and that I probably shouldn’t expect to ever feel like myself again. I’m sure if I met him in person and his answer weren’t so brief there’d be more context to that, but it was pretty upsetting to read. I didn’t feel it was worth making an appointment with him and paying out of pocket, even if he does believe in MAV. Sounds like your experience has been different though. And sadly, I can relate to your comments about medication.
I can definitely understand why that response from Dr. Newman was dismaying & discouraged you from seeing him, especially when you factored in that you’d have to pay the money out of pocket. (I thankfully have out of network coverage on my insurance (since so many doctors in NYC don’t take any insurance, I felt like I kind of had to choose this level of coverage when I picked my policy). That only covers 80% of the cost, but it definitely helps a lot!).
It’s totally understandable that it wouldn’t be worth the expense if you feel like he wouldn’t be able to do anything more than your current doctors. Do you know if your doctors are giving you a chance to try all the different meds usually used for MAV (or for migraines in general, since they’re pretty much the same meds)? If so, then it’s true, there’s probably not much more Dr. Newman would be able to do, beyond what your docs are already doing. But you mentioned that a psychiatrist is currently the one prescribing your meds, so I wonder if he/she is trying meds other than anti-depressants or anti-anxiety meds (i.e. meds outside the psych field, like beta blockers or seizure meds)??
While none of the meds have really helped me (other than some minimal improvement on Topamax), it has been a huge help mentally/emotionally to have a doctor that takes me seriously, who doesn’t make me feel like I’m crazy or that it’s all in my head, and who is also very knowledgeable on the topic & has seen lots of other patients with the same symptoms. But obviously when you’re paying out of pocket, it may be a lot to pay just for some mental reassurance. It’s meant a lot to me though, I can tell you that. Also, I don’t know if it’d be true in all cases, but I’ve never felt rushed during my appointments w/ Dr. Newman, which is one of the things I really appreciate about him (this may be the upside of the no insurance thing, since he’s probably not squeezing in as many patients as docs who take insurance do)
Anyway, I don’t know if he’s even a consideration for you anymore, but just some extra food for thought . . .
Yes, my psychiatrist is definitely open to letting me explore other medication possibilities outside of antidepressants and the like. How are you managing on a day to day without any medication? Have you ever tried a benzo like valium or klonopin – that’s the one class of drug that seems to offer some relief to most people here (including myself).
Well, I don’t really manage on a day to day basis! I had to leave my job due to the MAV, and I really don’t do much outside of home at all. I thankfully am not one of those people who is bedridden by this (I have read some people on here or other boards who can’t even get out of bed). I do have spells where I can’t do anything other than curl up in bed or on the couch for several hours, but those are brought on by triggers and thankfully not my every day experience.
So I’m able to function around my apartment, and I can do quick errands nearby, like grocery shopping or running to the drugstore. I try to do any errands or appointments on weekday mornings, when things are least busy & crowded.
Beyond that, I don’t do much. I’m able to get out for longer periods here & there, basically I do that by spacing out my activity – making sure I have a lot of rest time before & after. And I still end up feeling horrible, but usually I’m able to at least sort of enjoy being out.
So that’s the gist, I don’t really function much, but I get by. Newman never prescribed or even suggested benzos for me – not sure if it’s cause he doesn’t believe they work for MAV or if it’s just cause I’m so med sensitive or what. But I did have one primary care doc prescribe them & I think I tried it one time & felt very loopy & then got nervous to keep trying, after having had to many negative experiences with meds. This was several years ago, so I honestly can’t remember exactly what happened when I tried it, but I know it wasn’t anything that made me want to stick with it! (And I normally have given meds fair trials of several months, but by the time I tried the Klonopin, I’d already had too many negative experiences).
Anyway, I’m glad your psychiatrist is willing to work with you & seems open to lots of things. Hopefully one of these days you’ll stumble across something that works!
Ugh, I’m sorry. Do you live with someone who’s helpful?
Not to push the drugs, but if you do feel inclined to try again, a very small dose of a benzo might offer some relief – and shouldn’t make you loopy if it’s small enough (but I know we’re all very different with medication).
Nope, I live alone. Thanks goodness for the internet! I’m able to do many of my errands that way (buying gifts, clothes, vitamins, etc). My family is very supportive and not too far away, so if I ever really needed help with something, they’d definitely make every effort to be there.
As for the benzos, I actually did try a very small dose. I don’t remember the exact dose, but I think it was half of whatever the doctor suggested, which was small to begin with, since I’d told him I was sensitive (and I’m small, around 100lbs). I may come around to it again some day, but right now I’ve just been burned too many times and definitely need a break from taking risks with anything new. I appreciate the suggestion though.
) you can fix up your lifestyle by avoiding alcohol, doing moderate exercise and sticking to a strict sleep schedule. You can try the migraine diet - it works for a lot of people. Other than that there a literally dozens of meds you can try across several different classes of med. Each of the doctors have their own favourite. Here in Sydney Dr Halmagyi favours Prothiaden. It’s working great for me. Jen in Brisbane is also doing really well on it.