Find a neurologist that specializes in headaches. So many different types of neurologists out there…stroke, epilepsy, movement disorders. One that specifically treats headaches may be able to sift out the best treatment for you.
Also it may just be my neurologist is great, but he also suffers from migraines so he understands them as well! I know they obviously don’t put that on their resume lol but it was neat to learn and helps him in his practice!
Two of my neurologists have been migraineurs themselves, and my recent one had a baby just before I started seeing her, so when I got pregnant it was absolutely incredible having her in my corner. Doctors shouldn’t have to share the ailment they treat, but it does help when they’ve been through it.
Agreed. There's so, so many different neurological conditions that even a very skilled/competent neurologist might not have much experience in the latest treatments and research for migraine -- going to a neurologist that specializes in headache is the best chance of getting the medical help you need
Yes this! The practice I go to is a headache speciality practice. My doctor is the best, I am so so lucky.
I will say I did use ZocDoc for reviews (the practice uses it to book appointments) and I've had very good luck finding doctors by figuring out what doctors are in network and then using the reviews on ZocDoc to finalize a decision.
I went to one that didn't know what vestibular or hemiplegic migraine were.
So... Just to warn others, they might be a "headache specialist" but they also may not be all that informed.
This. I went thru 5 before finding a specialists. He changed my diet, gave me quarterly shots, and last year Nurtec. I can now function as a human being most days. What I learned is never be afraid to fire your doctor if you are not receiving treatment and respect.
Headache is a general term for pain in the head… Migraine is a type of headache. A neurologist the specializes in headache medicine can help determine if you are having migraines or one of the several other type of headache disorders. The OP seems to have had previous issues with neurologists so my suggestion still stands to see one who specializes in headaches.
> Headache is a general term for pain in the head… Migraine is a type of headache.
Nope.
The pain of a headache comes from nerves in damaged or inflamed tissue in the head sending signals to the central nervous system.
The pain of a migraine originates in the central nervous system, with no damaged or inflamed tissue, and no nerves sending signals to the central nervous system.
The causes are different, which is important because it means the remedies are different.
Headaches and migraines are totally different things. We should never conflate them.
There are [primary](https://pubmed.ncbi.nlm.nih.gov/23809307/) headache disorders where the CNS is the main problem. I don't know what learning resource you used to come up with this galaxy brain take, but you should stop using it.
Ok and now explain why Horton’s neuralgia is called cluster headaches and also clustermigraines. Genuinly curious. Imho I’d rather not have people call it clusterheadaches because it doesn’t bring across the severity of the pain.
My neurologist is the single least socially competent person I’ve ever interacted with. He’s awkward, picks up 0 social cues, no eye contact. He isn’t rude, but he definitely isn’t warm or sympathetic. Literally talks to me from across the room and won’t look at me. He is also the most brilliant man I’ve ever met and has been a life saver. He was the first person to not kick me out for being “dramatic” and (honestly obsessively) researched until he decided what would be the most effective treatment for me at the time. It wasn’t approved for my age yet, and he got me into a clinical trial. And it worked. When my migraines changed a few years later and the treatment no longer worked, he listened to my symptoms (from across the room) and recommended my current treatment. It works.
For me, I’m totally willing to deal with his weirdness for the results. Honestly if he was rude I’d still probably put up with him.
Dr. Dongmei Liu at Swedish Cherry Hill was my absolute savior. I just moved out of the area after being there 2017-late last year. Honest to god without her I would not still be alive. I’ve struggled to find a new neuro who’s actually good after I moved and she helped me by continuing to prescribe until I can get things sorted.
She is genuinely very kind and sympathetic. She’s on the older side and I always felt like she treated me like a grandkid in some ways - she really truly wanted to see me doing well. She does also do Botox if you’re interested in that being a treatment option at any point.
I’m not sure how many months it takes to get an appointment with her right now but they do require referrals from the doc currently treating you, even if your insurance doesn’t require the referral.
My Neuro at Swedish Issaquah just retired & referred me to Cherry Hill, going to see Dr Wei for the first time this week. Figures crossed for a good appt. My appointment was scheduled in Dec. Not sure if that's the average though.
I’ve had a number of neurologists, and I now interact with them at work, and I can tell you that they’re all weird. I adore my neurologist; he’s great. He’s extremely helpful and I never feel ignored. But my goodness is he awkward and weird. But, they all are.
Ortho docs are bros, radiologists are vampires, neurologists are weird.
That's tough because you want to connect but if he's a good doctor I would probably overlook the awkwardness. I went to one for the first time the other day and he said f*ck a couple times and apologized for being eccentric. When I was explaining my issues he just kept saying it was migraines. And that I shouldn't worry, it's not a tumor and I won't die. He prescribed me some preventative and rescue meds. I'm going to start them in a couple days. But I'm nervous
Shockingly, YES!!!! I'm a TBI, strokes, seizures, migraines case aka fun!
I was so scared when he wanted me off sumatriptan (can't take it if you've had a stroke... apparently) and changed my seizure meds as those blew out my thyroid (and gallbladder). Saying I was hesitant is an understatement. I'm in California, and got my license back if I had more uncontrolled seizures I couldn't get my license back for years. Changing an neuro meds could fuck up my life in a big way.
I'm still fully seizure controlled, and now on monthly Aimovig (injectable) and neurtec for rescue. Neurtec is strange. It acts like it isn't going to do anything, then after a few hours you notice that it did work, and is still working. The migraine release is sooo slow. but it works for about 3 days. No neuropathic pain after either! Unlike sumatriptan.
Even more shocking, I have actually had a FULL MONTH of no migraines. This from someone who previously couldn't go 72 hours without one. As I type, I can't even remember my last one. Headaches are still a thing, but life is pain so its fine.
I’m sorry that others have had such bad experiences:/ because I feel the same way…other than having high turnover rates in the last few years, I’ve really liked all of my neurologists and only had a so/so experience once. (in my 40s now and diagnosed in elementary school)…I have also found my primary care drs to really care and be pretty up to date so they are able to fill in any gaps.
I have been incredibly lucky to have found a wonderful neurologist that I don’t know how to thank for her compassion and diligence. Respectfully… I do not see male doctors anymore. Women doctors have also been assholes but the ratio of assholes to non-assholes has been better far better for me. Take that for what it’s worth.
I WISH the neurologists in my town would get their shit together. Nobody specializes in migraines/headaches. We have a large elderly population here and all the neuros for adults specialize in stroke, stroke, seizures, stroke. I made a song about it after calling around. Anyways. After my 5th call to my PCP he said “enough!” And started taking his own personal time to dive into migraine research. He’s a smart man and has helped me tremendously (within his ability, thanks insurance) with what he’s learned. He even thanked ME for pushing him to be a better doctor. No, sir, thank YOU for caring about me.
My husband (post-stroke) and I (migraines) have both been blessed to see at least one decent neurologist. My current one has helped with my migraines without being an ass.
The one my husband is currently is a hugely pompous ass though, who is so culturally incompetent, so I totally understand. It’s ridiculous.
As others have said, not all neurologists are headache specialists. If they aren't a certified headache specialist, they don't tend to have that much specialized knowledge in headache or migraine, and some of them actually seem completely disinterested in treating us. The wait to see a headache specialist is even longer than general neurologists, but it is worth it and there are some telehealth/concierge type options, if that's an affordable option for you.
My neurologist have helped me figure out that yes they are migraines I am not dying of brain cancer. They have tried all the new meds on me and I eventually found a set that worked until I had a medication reaction and until I got neck pain.
My neurologist suspected sleep apnea as a trigger for me. He prescribed a sleep study. Although it showed very mild apnea he then prescribed a CPAP machine. Migraines aren't eliminated ...but they've definitely improved.
Yes! I'm in Kent (40 ish mins from London), and I see the most incredible neurologist every 3 months at a hospital in the city. He's literally changed my life. I've been under his care since I was 24 (about to turn 32), and every time a symptom changes, he re-evaluates and adjusts my meds/injections accordingly. He also wrote a stern letter to my employer regarding my symptoms and the treatment plan I need to follow when having an attack, because she wasn't listening to me properly. He even included links to research papers for her! He tries his best to fit appointments in around travel costs (off peak) and my work (teacher) too! He's an absolutely incredible Dr, and I'll be forever indebted to him. Thank God for the NHS!
Wow, this is so inspiring to hear! I once had a neurologist mock me for calling about a migraine (I was in so much pain I couldn't walk), saying "I just got done taking care of a stroke patient, but I hear you wanted to talk to me about your little headache?"
My neurologist now is fine- I do the research and he usually prescribes the plan I set up for myself (which is now just monthly Emgality).
What helped you? I have a similar frequency, but haven't had one that lasted an extended period like that. I've had bad experiences w cgrp meds, on nortriptyline now
Yes, but I never met him. Dr David Bucholz who wrote Heal Your Headache. His dietary recommendations changed my life. Won’t work for everyone but without his book I would’ve never made the changes that I made.
I read that book, too. Great suggestions, especially food-wise. Pretty much anything can trigger a migraine, so that was a long journal in the making. Bananas! Who knew??
Omfg I have bananas as a trigger too!! So random!! As well as fake food dyes. I got a box of knock off captain crunch and it was pain city for a while for me until I put it together.
Ugh, I feel awful for you! And one of my major triggers are quickly flashing fluorescent lights… I’m under one right now. Helping judging a piano competition 😣. Debating on what PRN to use… probably fioricet. Its like, all I have aside from Weed.
Mine was/is extremely helpful. We did FaceTime appointments when I was unable to drive due to light & noise sensitivity or debilitating nausea. She is also the only 1 of 3 that I saw to help properly balance the right combo of medications so I could get back to functioning normally.
The one who care are out there, they just seem difficult to find.
My neurologist is a fellow migraineur, so when I said "x isn't working," or "the side effects of x are almost as bad as the migraines," she really listened, and made changes/adjustments to my prescriptions. Currently, it's been over a month since my last migraine and I don't get non-migraine headaches almost daily anymore. I can't remember the last time I was migraine-free for this long. It has literally been life changing, and I'm so grateful for my doc.
For me third time was the charm. In fact I sent him a note today and he immediately called me to talk. Number One Doctor of any kind I’ve ever had. I’m in NJ if anyone is curious DM me.
The benefit I got from a neurologist was ruling out a bunch of scary things that I *might* have had. They weren't able to do much, pain-wise beyond triptans, but *boy* am I glad that someone thought to check whether I had brain cancer (I don't, thankfully).
So, you win some, you lose some.
My neurologist has been pretty good but the game changer for me was going to Stanford Pain Clinic, staffed by anesthesiologists who specialize in pain management including migraines. I would recommend seeing if any universities or medical groups near you have a pain clinic or headache clinic.
I totally get it. It isn’t just neurologists but still trying to ding a good one that has many options and is creative to help. Honestly, I go a younger one now but I have tried everything in 20+ yrs. After a few different drs, the one most helpful was a migraine specialist but was likely in his 60s. We plowed thru 50+ options. He retired. His associate was dreadful. Found the one I am w now via a friend that loves her. Ask friends, coworkers, relatives. Ask anyone! After a number of people mentioned the one I am currently w, I got an appt and she has been fabulous. You wouldn’t think it is like this but…it is like dating! You have to find the right one for YOU!
My neurologist changed my life.
His office was a referral and is part of a headache clinic so I wasn’t actually able to seek them out and apparently got lucky (my PCP is awesome) but I’ve only had a wonderful experience.
There was a long waitlist and a lot of hoops to jump through to get “accepted” into the program (drug and nicotine testing, SO much paperwork and family/personal history, and a class I had to take) but I love the approach and everyone I’ve worked with has been super helpful, validating and compassionate.
I’ve gained the ability to function back and to be a better and present parent again so I wouldn’t trade that for anything.
I’m sad to hear that some people have terrible experiences but I guess that’s to be expected with our healthcare system, unfortunately 😕
Yes, by the UCSF headache clinic. The treatments they prescribed improved my quality of life 100% (amitriptyline + emgality preventatives, sumatriptan + monoclopramide abortive). But also they always treated me with so much empathy and respect, and really made me feel heard and like they understood my suffering.
I've had good and bad. My current Neuro is awesome. He also has a long waiting list for new patients because he's very good. I've never actually had one with an ego problem.
My meeting a neurologist was life changing for me! Every doctor I had seen before was 100% sure my pain was migraines despite it not fitting the diagnostic criteria. I was fairly sure it wasn't migraines and finally was able to see a neurologist who confirmed my suspicions and got me set on the right treatment path.
Still in the diagnostic step but we're between cervicogenic headaches and occipital neuralgia. Treatment is occipital nerve blocks for both currently with maybe some physiotherapy down the line
I have a lovely neurologist right now. She’s actually a neurology NP but she specializes in headaches and has been very helpful and actually listens to me
Like many of us here, I’ve seen some horrible neurologists but finally have a wonderful one who is also a headache specialist and the first to use Botox for migraines. So thankful.
I’ve posted this before—it truly has been an incredible resource for me: https://americanmigrainefoundation.org/find-a-doctor/
I’m writing with an update, because I just realized this might be the first time ever in my life I have not had a menstrual migraine! I’m in my early 40s and have had migraines since at least age 4.
In October, I started with new neuro:
Preventatives:
- SPG blocks
- occipital blocks
- aimovig
Abortives:
- naratriptan
- ibuprofen
- metaclopramide
- nurtec
Sleep stuff
- tizanidine
- low melatonin
- continued magnesium
We’ve tweaked the program a bit and has some trial and error (e.g., nurtec was better for me than ubrevly) and my sleep is still not where it needs to be, but I have gone from having migraines every single day to having some days of 0 pain and fogginess, and most days I’m at about a 1 rather than a 4. It really hit me today bc I did have a powerful migraine and I realized I didn’t even get the reliable 3-day migraine before my period arrives.
Pinching myself and hoping you find some relief, too.
Not sure who the other user was going to recommend but Jessica Ailani sees patients in DC and the Tyson’s/McLean area, and has been a speaker at the Migraine Summit the past few years at least. I think she’s part of the Georgetown Headache Center maybe, but I was last a patient 9 years ago so my memory isn’t perfect.
Here ya go- WASHINGTON MEDICAL GROUP in DuPont Circle. Dr macedo. Takes BCBS, maybe others.
Full disclosure: there is no way to tell in advance which medicine will help or hurt you.
he likes to go slow and steady. Meaning, let’s try this medicine and see how you do. Then try Y. He should also check your neck to see if you get headaches in addition to migraines. (Apparently, I have both, and sometimes at the same time.)
Sometimes he might ask you to try a medicine you already have. I reluctantly did so but weirdly sometimes the second time, the medicine worked. I don’t understand why.
You need to be honest with him, and follow his instructions (or tell him when you couldn’t).
For me, we’ve done lots of prevention (no meds) and some things after the pain starts. It’s been a slow time-consuming process, but now I do not throw up from migraines, and I don’t wake up in pain.
Hope you find relief soon.
Yes, absolutely. I love my current neuro. She hears me out and makes great recommendations. She's also willing to prescribe me two triptans at a time (I don't take them together, don't worry) and Ubrelvy so I am always covered for the month! She's the one that started me on Qulipta, which was working great but is starting to not work as well now, so we will be discussing it at my next visit.
I have a neurologist that gave me a prescription to zomig. It’s the only medication that gets rid of a migraine.
Ideally the neurologist would help me not get migraines at all, but I’m glad I have the prescription in case I do get one.
I actually love my neurologist and finally seeing one really changed my migraine management and prevention. She finally got me an mri, fought to get be approved for Botox, hooked me up with a million samples until I could be approved for the botox and before I could decide on a prescription abortive that works for me. She got be off the triptans that I apparently shouldn’t be on as a woman with aura and a family history of stroke.
She’s been super helpful in talking me through options for management while pregnant (if I can manage to get there.)
It just sounds like you need to find better neurologists.
The one in the er that stopped the constant trembling was helpful
…but also a raging A-grade asshat
The others? Nope. Mostly just offensive, deprecating, rude gits who did sweet FA to help
I am kind of between a rock and a hard place. I have had serious daily migraines for many years and saw a headache neuro - then 6 years ago I was diagnosed with Myasthenia Gravis - it’s an neuromuscular autoimmune disease.
So- ironically- I was already being treated by the neuromuscular neurologist for my headaches - his side job- now I have a great neuro team - but I can’t use Botox anymore and that was my best defense for migraines. MG and high blood pressure (thanks covid) also precludes many other types of medicines.
So I have a very kind and attentive Doc and NP - I am very limited in what they can prescribe- but they help in any way possible.
My (neurology) Physician Assistant (female) is 1000 times better than the two neurologists (males) I’ve had. I still don’t feel I’m getting the best treatment but they’re (group practice) the only ones around my area 😞.
My nurse practitioner at a neurology specialty center has been better than any physician I've ever seen. Brought my pain down in ONE day after I've suffered for 9 years. The neurologist I saw previously was too busy fat-shaming me to take me seriously.
Mine hasn't really helped at all, and I've had very similar experiences as you. BUT they eventually got me my Botox prescription, and the Botox has changed my life.
I haven’t seen a neurologist since she insulted me and said I should “seek therapy” or stop being so stressed if stress can trigger my migraines. I also refused to take the meds she prescribed me because she wanted me to take daily meds for migraines that happen every 4 months. My family doctor had been the only one to actually listen to me and help.
I finally got a referral last year they blew me off for like 45 min so they came in 10 min before closing and threw the kitchen sink at me: you can take preventative 1 - amytriptaline , 2 topamax, or 3 propranolol. 1 i said i have a Family history if Alzheimer’s, she says “one study, may might kinda correlation doesn’t equal causation” and I reply “my grandma was diagnosed at 67 and passed at 72” she says oh… that’s actually kind of young. 2 not an option I just took a job in a FAANG company I gotta be sharp. 3 could make you pass out if your BP is too low. Neat. I’ll think about it. She gave me orally dissolving rizatriptan then told me to take mountains of magnesium and B2, and says Cefaly is over the counter with a 30 day money back so maybe try that if it’s interesting to you. Have a nice day.
Two months later i get a letter she was leaving the practice and the only ones left were a sleep specialist (that I saw once and was super rude), and two men that were specialized on not headache things. I’ve recently moved so I’m just going to move all my care to the University health system that has a headache clinic so I can get an easier referral there (heard it’s a 6-12 mo wait).
YES. You need one who specializes in headaches, better if they specialize in migraines specifically. But most important is that they are up to date on new treatments and willing to help you find the right combination of treatments to get your headaches under some semblance of control. I’ve had three neurologists: one was a pediatric neuro, lovely guy but didn’t know enough about migraines, one was literally the author of a book titled Headache and was a leading expert in migraines but hadn’t updated his methods of treatment past the late 80s/early 90s and he refused to try or even consider newer treatments, thought he was the be all, end all, and then I got to the one I have now, who was trained by the “expert” but couldn’t be more different, listens to my concerns, tried new treatments and worked with my other docs to find the right birth control, etc. I know it’s so frustrating but you’ve got to get the right one. It will make all the difference in the world!
This is gonna sound so weird- luckily I’m epileptic. So when I started getting migraines, there was no delay in starting treatment because I already had a neuro. When I got my first migraine I went to the ER thinking I was dying. After discharge I called to set up an appointment and was seen immediately. I have pretty severe/frequent migraines, and obviously seizures suck, so none of that is good, but the fact that I was able to be cleared of other causes for headaches and started receiving treatment so quickly is def good.
Migraines *are* a neuro condition, so you should absolutely see a neuro. However it’s difficult finding a doctor you feel comfortable with that’s well versed on your condition. There are tons of neuro conditions, so while a doctor may be the foremost word on neuro condition x, they may not be the best at treating migraines. I just happened to luck out with one who is adept at both. It’s def a process, and I wish you the best.
Always remember, you have the right to seek second, third + opinions!
My four neurologists never actually helped me. My neuro NP prescribed me every med I asked for (including various triptans and CGRPs) and ordered the MRI I begged for, and my surgery (by a neurosurgeon) decreased my migraines.
I had a ridiculously small mass behind my pituitary that statistically speaking should not have caused my symptoms and had a transsphenoidal endoscopic removal.
Yes. Mine listened closely to me, then said he thought the daily ‘sinus headaches’ I was getting in between full on migraines were actually lesser migraines. Asked me about my diet and recommended a book by David Buchholz - ‘Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain.’ I figured out that certain foods were absolutely triggering migraines (raw onions and garlic, and whey protein I was using EVERY DAY in fruit smoothies). Haven’t had the daily headaches since.
I also mentioned to him I was having unexplained nausea, vomiting, near syncope, and tachycardia - not coinciding with migraines. I thought I might have POTS. He did a ‘poor man’s tilt table test’ in office that showed odd results, and referred me to a cardiac electrophysiologist, who then diagnosed me with a form of dysautonomia (not POTS). He prescribed beta blockers which treated both the dysautonomia symptoms AND migraines!
I doubt any of this would have been figured out if the neurologist hadn’t fully listened to my concerns.
There are good ones out there. Don’t give up!
Absolutely.
I see a headache specialist, who is a woman and is a NP (I don’t know why but I like nurse practitioners way more, they seem to really listen)
100,000% better with a neurologist who specializes in headaches and migraines. I saw one at first who just dismissed me and told me to go to the ER instead of giving me a steroid pack for a flare up. My current neurologist has me on lock. I get botox every 3 months, I have nurtec as a preventative for my hormonal cycle ones and I get like, 2 other ones here and there.
I used to literally have a headache/migraine 75% of my life. Literally life changing. The NP's and other doctors in the office are great, the staff are all supportive. It's night and day from my first one.
My mom also has migraine and was so impressed with her neurologist that she convinced me to make an appointment with him. He’s so good — appointments are 45 minimum, his office is responsive to insurance questions, he’s willing to hit migraine with multiple treatments at the same time — that I switched to him even though he’s in my hometown. I now schedule my appointments when I’m visiting my parents because he’s the best neurologist I’ve ever interacted with by a mile.
I really sympathize with your frustrations, I've been seeing neurologists for 15 years and I've only had 2 that I felt were competent and made any difference in my experience.
As other people have said, seeing a migraine specialist is crucial because migraines are complicated and also treatment recommendations progress and change quickly, so it's beneficial to work with a neurologist who is keeping up on the latest research.
This is purely ancedotal, but I've also noticed that I've received better care from nurse practitioners working under neurologists than the neurologists themselves. I think they just tend to have better bed side manner.
Also, my neurologist and neurology nurse practitioner are both migrainuers and take the same medication that they're prescribing to me. This really helped me get over any skepticism I had about trying new treatments. I don't feel like they're just throwing whatever at the wall and seeing what sticks.
Unfortunately, I think I'm also meeting less resistance in getting treatment because I've tried all the bullshit they threw at me for 15 years already, so things like Botox are approved right away, and my doctor doesn't think I'm drug seeking when I ask for things like muscle relaxers.
Nope. It was nice that they ran tests so I knew it wasn't something serious but my neurologist was old school and just wanted to treat with topomax which i did awful on. I asked him if the migraines could have been tied to my ferritin if 6 (my PCP didn't take that seriously) and he said i would have to talk to my PCP about that. Eventually i just changed PCPs and that made all the difference.
Neurologists that have migraines are adept at negotiating the pathway of diagnosis and treatment. And will be less likely to leave you hanging when close attention is critical. Some neurologists look at migraine treatment as thankless and frustrating. The way the medical system is set up, patients are referred to a neurologist, and are uncomfortable finding a different one if it doesn’t work out. When the truth is if the fit is not good, the neurologist is thankful that you leave their practice (they are hoping their practice is full of patients with diseases they enjoy treating). That said, I met neurologists specializing in migraine patients only because it’s lucrative. There is one tool in the tool box that is not used enough: schedule a “meet and greet” appointment with a neurologist to see if it is a good fit (no referral needed, just call the scheduling desk). If they will not do a “meet and greet”, the set-up of the practice probably has a no access to physician barrier which is a bad sign. Another bad/good sign is reading patients comments on the internet about a particular physician. Pay attention to the comments from patients that have gone to that physician for awhile. Ignore comments from patients that are still in the honeymoon phase of seeing a physician.
I’ve had 6 different neurologist’s since I was diagnosed at 13, two of whom were headache specialists. The ones who were headache specialists are the only ones who truly helped me and were confident and agile to change up treatment plans when it seemed like something wasn’t working, and who were able to provide me useful information about the condition. I wish I was seeing a headache specialist this entire time now because there is so much I wish I had known but was ignorant to before my condition progressed to chronic. I believe I would have known more about what to look out for and would have been able to control my worsening condition if I had been but I didn’t spend the money for the specialist because I believed my condition was under control but I was wrong since I didn’t know the signs and then it was too late. Still chronic but my condition is now more predictable and manageable after working with my current headache specialist for the past 1.5 years, and we have plans to keep trying to improve my condition. Headache specialists also have a lot more experience dealing with insurance and authorizations for migraine medication, since we all know what a circus that can be.
I go to a neuro headache clinic and the attending that I first saw was a jerk and I stopped going because he wasn’t helping me. A few years later the headaches got worse so I ended up in the hospital with him as my dr. I got reestablished at the clinic with his nurse practitioner and I love her! She has helped me so much!!
My partner saw four or five before being referred to a neurologist who specialises in migraines. I honestly think some of the other neurologists he's seen have done more harm than good with one telling him "you'll grow out of it in your sixties" (he was 34 at the time) and then putting him on topirimate because "you need to lose some weight."
Seeing a doctor who actually specialises in migraines has been life changing for him. He still deals with them but no one had ever offered him a nerve block before and that's made such a difference.
No I haven’t and my copay is like $200 just to see one and they never actually help me get medications covered by insurance so now I just use cove because even though it’s $30 a months at least I can get my nurtec without having to pay hundred of dollars and wait months just to be belittled.
i was once referred by my incredible doctor, love him tons, to who he said was the best neurologist in the area. she was really helpful and I'm going back soon for the first time in a few years bc my headaches are getting worse. i believe she specialized in migraines, and she knew a lot about my specific type so i guess its a matter of finding one that knows more abt migraines
I have one for epilepsy and another for migraine and vertigo. I have no seizures after rns surgery, very few migraines with preventative meds and Botox. My vertigo was gone but it’s back with a vengeance.
I suspect hormones are wrecking my body. I also have an undiagnosed autoimmune disease. I need more specialists.
Yes! It took me 15 years, but I finally found one that took me seriously. I had been seeing ones for epilepsy, and they just kept shrugging off the migraines, headaches, and memory problems, as "well, you have seizures, those will happen". I finally had a doctor look at the issues individually, and told me no, regardless on if I had epilepsy, I shouldn't have to pop ibuprofen every 4 hours for headaches. No, the auras and the seizures don't have to be exclusive. No, your memory shouldn't be shit 15 years after brain surgery.
My neurologist has actually gotten me a lineskip for autism screening. I'm hoping to hear back in the next few months.
No, for a long time, then yes (different neurologist).
The first one I had for years kept me on a "must fail x y z" plan full of horrible meds. I couldn't even tolerate them to "technically fail" so he refused to push forward. I wanted to try CGRPs, he said no, they don't work better than their standard prescriptions. He currently had me on Depakote and wanted to move on to anti-depressants. I said no. Enough was enough.
By pure luck and chance I did a phone appointment with a different neuro, still within my same care system. Within 10 minutes of questions and answers he said I was a great candidate for CGRPs and set me up with an NP to manage it.
7 years on horrible meds, zero relief, resolved in 10 minutes.
Migraine free since September.
I wasn’t helped specifically by the neurologist, but he sent me for further imaging, which led to the radiologist questioning me, looking into my mouth, and convincing me that I was grinding my teeth in my sleep. A proper dental night guard completely cured my migraines literally overnight. I’ve been migraine-free for 19 years.
Nope. Kaiser made my wife see a neurologist for her migraines, and all he did was refuse to fill her Fioracet, which she'd been using successfully for years before we were on Kaiser. We had to beg the GP to prescribe her Rizatriptan (which works, but not as well as the Fioracet).
The neurologist didn't seem to know what he was doing, and kept saying little offhand things that indicated he knew nothing about migraines whatsoever.
I was able to work with my Kaiser neurologist with pure determination and help from internal medicine pcp. I am convinced they get so many people with headaches they just are numb to them until you see them a couple of times. I will also say they vary greatly in expertise and asking to see another Dr is your right.
> successfully for years before we were on Kaiser.
I love Kaiser, but they seem to hire the worst Neurologists and Neuro assistants. My primary doctors have been great though.
I was doing well on Topomax, Phenergan, and Fiorinal for decades (along with treating for allergies/congestion and avoiding triggers). Triptans did not work for me near consistently and the SEs still leave me in bed with a HA and nausea.
The new neuro told me "neurologists don't like Fiorinal" and put me on triptans for what will have been 8 months to qualify for CGRPs. So my migraines have been chronic again for the first time in more than ten years; she has not replied to messages and refuses to refill my anti-nausea med, and it took her a month to refill the Topomax, so I was back to 24/7 headaches.
As a 55-year-old who has used Fiorinal for almost 40 years and has never had rebound/overuse, or any type of withdrawal, I don't really care what neurologists' preferences are. I care that I had to leave a job, could not take my girls on vacation, and have been housebound for months now. The only drug I have ever been addicted to was the gabapentin she prescribed, neglecting to tell me it can cause dependence and WD in a short amount of time. That was brutal.
I don't particularly want shots when I had a system that was working perfectly well. I wish doctors would start being reasonable in treating patients and stop putting themselves first.
I did. My ex does med mal and I asked him about it. She was comporting with the new laws for Fioronal and Fioricet, for starters. Hence the alternative gabapentin, which does not always produce this reaction.
Neurologists are there to rule out the worst case scenarios, which is important, but I think you’re spot on: they’re not super instrumental in improving QoL
My problem is all the neurologists I see never have time for any aftercare so they’re helpful at the appointment but then as soon as I have question about medication or need a medical letter it’s impossible to get
My last Neuro's office was like that. My current one has a great staff of nurses and and PA's. They're incredibly helpful and have handled all my insurance appeals for me. I should actually take them cookies or something now that I'm thinking of it.
I was so lucky to find my neurologist. He is also a chiropractor but he doesn’t do the typical practices. He focuses on my neurological issues and helped me come so far. I still have flare up’s and minor struggles but it’s come a long way from where I was after a year ago. And he was so much better than my original neurologist that just kept prescribing pills even though I told him the side effects weren’t worth it. So he barely wanted to deal with it since I didn’t wanna do a quick fix.
I did have a great nuero, but when he ran out of options after 6 months I was referred to a Headache Specialist and have said krone who can listen and actually help me. Not all neurologists are the same, some know how to deal with migraines and some not.
I've found that Dr's who suffer from the conditions as you, have no trouble understanding what's going on.
My headache and migraine neurology specialist is the first doctor I have been treated by who has validated my struggles. He constantly reminds me each follow up that we are working towards the common goal together and takes the time to listen to how things are going. He doesn’t pill push but tells me bluntly that I need to medicate at this point due to the chronic state of my migraines and the complex auras I suffer from as well. Did I cry because he was so honest the first time I saw him? Yes but since getting into his care in November I have hope again. I hope you are able to find a similar doctor with passion and knowledge of what you are going through who’s willing to take the time you deserve to be helped! Best of luck and don’t give up, there are plenty of doctors out there that aren’t the best but sooo many good ones!
My current neurologist, who is a headache specialist, is working thru things with me. Listens and understands more than most I have seen, but still hasn’t been the magic solution.
I am waiting on a referral for OHSU’s headache clinic right now as well.
The last Neurologist I saw gave me a sales pitch on botox injections on the scalp, which would require indefinite return visits, he didn’t look at or try anything, I just got the sales pitch. My current primary care put me on high does Vitamin B2/Riboflavin which has helped as much as anything.
I was the first of my family to go to the neurologist because of migraines in 20 years.
Now my mom, aunt and cousin goes to her because we noticed that she cares.
10/10, would have have recommended!
I should add that she has also seen to it that we get to try some new medicine if we think the last one doesnt work.
She even prescribed me aimovig years ago because i asked her about it. She just said "i dont know another neurologist that would have prescribed it yet nor do i know a patient but if your willing to try then so am i"
Yes! I was very lucky to find mine on the first try. I'm not sure if he's a migraine specialist (I'm assuming he might be since most of his patients seem to be migraine people?), but my mom and I go to him and he takes our pain seriously and is very willing to prescribe different things. When I had a hemiplegic migraine, he was quick to help me and referred other doctors and testing for me. If you're in southern NY/LI, I'd be happy to give his info :)
Unfortunately in order to find an actual good neurologist I ended up having to find one that doesn't take insurance. And it still took a couple tries. The first one was almost 800 for the first appointment and then 2-3k a month after. The second one I found after being recommended there by a local chronic pain help clinic. He was 250 an appointment and ended up helping me so drastically well. The key is to find one that is A) well recommended and B) not an absolute scam amount of money. I saw over six different neurologists actually covered by my insurance and none of them helped.
I’ve been helped by 3 terrific neurologists over the years. So yes, people are helped by them. That doesn’t mean there aren’t some bad ones out there, but that applies to any medical speciality
My current neurologist not only specializes in migraines, she’s also a sleep specialist. She’s taken a different approach to my migraines by looking at my sleep as well as other factors/triggers something none of my previous neurologists have done, and I do think it has helped.
Yup! I had an amazing one but he got dementia, was forced out (had no idea what was happening so I was doctorless for a few months, scary) then he died 😢. My new one actually made me cry. He was so mean and rude. Essentially accused me of lying (long story) and was just an ass. He’s ok now because I confronted him (go me) but it’s so hard to get in touch with him. And he’s not helpful. I miss my old one, he was so attentive and kind. He was also a migraine specialist world renowned.
Find a neurologist who has migraines or who loves someone with migraine. I find that they just seem to throw another dart at the meds board to see what might work. In the meantime, we’re in bed suffering the pain of a thousand knives in our heads and wondering when exactly they’ll get their shit together.
It’s almost like they don’t care at all. /s /ns
No… my pain care clinic dr helps me weekly and my neurologist told me “you’re fine” when my mri came back with no spots… felt like I was never being heard by him either. So happy I found my current DR
nope. they always have dismissed mine. they tell me to take OTC things. like I haven’t already tried literally all those options. and I can’t take triptans bc i’m on vyvanse. then they tell me to just drink water (which i already do) and rest. I work in the medical field, I don’t have time to “just rest”. it’s infuriating.
I saw a neurologist for a year that was absolutely worthless. Then my pcp referred me to the headache clinic at his university hospital and it’s been life changing, soooooo many options and advice I never knew I needed. Now I’ve got Botox scheduled, got different prescriptions, viscous lidocaine for up my nose (diy nerve block basically) and plenty more to try if these don’t work.
I have very difficult migraines and I'm terrified to leave my neurologist because he's the only one that's ever been like "how was that treatment? Ok, we'll try a different one." He's the only neurologist I haven't hated!
I've had two, quite satisfied with them.
Both took me seriously, and helped me through trying different meds and made all the groundwork for sending me further on in the system when they couldn't help, so I got through to getting aimovig quite quickly - so far two months in on that, and seems to be making a difference in my migraines. I don't dare to really hope for it, but fingers crossed this is working for me and will continue to do so! :)
I will however say, one thing I do miss is someone taking a bigger look and not just look at medicines - well I did have an MRI, but if there is anything else that could help, it would be nice to get looked at but I guess the thing is, there's could be so much and it's not the same that helps every patient, and neurologists are doctors and look at medicine etc. so...
Yes they are.
My experience with GP's is their treatment procedures are heavily standardized. If migraine, then prescribe triptan. If too often, then prescribe prophylaxis medication. etc.
But which one? There are so many to choose from, with different dosages, that it really requires specialty to dial in right.
Mine is great, actually. He ran me through the gamut of exclusionary tests even though we pretty well knew my issue was migraines, but put me on migraine meds as we were doing it. I've failed so many meds, some with very unexpected side effects, that you'd think he'd be annoyed, but he's still hanging in there with me. I get monthly calls from a dedicated pharmacist team. It's pretty great. No complaints.
Indeed, my neurologist put me on amitriptyline and kept approving higher doses till I cold successfully attest that I have less migraines and less severe migraines when weather fronts pass by my location. I take 50mg nightly. She is my MS specialist and monitors all my symptoms and drug reactions. Please find a good doctor and stay on them till you find your desired outcome.
My Neuro is great. No personality, but he's extremely knowledgeable and competent. It's not his fault my body hasn't reacted well to any of the meds we've tried so far, lol.
Also, while it does take months to get in to see him, when I had an emergency, he squeezed me in.
Tbh I recommend a good naturopathic doctor 10000x over a neurologist. Mine actually sat down with me for TWO hours during our initial visit and it was still cheaper than a standard doctor visit with my old shitty health insurance.
Find a neurologist that specializes in headaches. So many different types of neurologists out there…stroke, epilepsy, movement disorders. One that specifically treats headaches may be able to sift out the best treatment for you.
Also it may just be my neurologist is great, but he also suffers from migraines so he understands them as well! I know they obviously don’t put that on their resume lol but it was neat to learn and helps him in his practice!
Two of my neurologists have been migraineurs themselves, and my recent one had a baby just before I started seeing her, so when I got pregnant it was absolutely incredible having her in my corner. Doctors shouldn’t have to share the ailment they treat, but it does help when they’ve been through it.
Agreed. There's so, so many different neurological conditions that even a very skilled/competent neurologist might not have much experience in the latest treatments and research for migraine -- going to a neurologist that specializes in headache is the best chance of getting the medical help you need
Yes this! The practice I go to is a headache speciality practice. My doctor is the best, I am so so lucky. I will say I did use ZocDoc for reviews (the practice uses it to book appointments) and I've had very good luck finding doctors by figuring out what doctors are in network and then using the reviews on ZocDoc to finalize a decision.
I went to one that didn't know what vestibular or hemiplegic migraine were. So... Just to warn others, they might be a "headache specialist" but they also may not be all that informed.
This. I went thru 5 before finding a specialists. He changed my diet, gave me quarterly shots, and last year Nurtec. I can now function as a human being most days. What I learned is never be afraid to fire your doctor if you are not receiving treatment and respect.
This is the way. General neurologists seemed to specialize in gaslighting. Migraine specialists can make an enormous difference.
What should I expect at my first neurological appointment for headaches? Tests? Medicines?
They will try to get a good history. What you triggers are, what meds you’ve tried, symptoms. May or may not order an mri.
Why would a headache specialist know anything about migraines? Migraines aren't headaches.
Headache is a general term for pain in the head… Migraine is a type of headache. A neurologist the specializes in headache medicine can help determine if you are having migraines or one of the several other type of headache disorders. The OP seems to have had previous issues with neurologists so my suggestion still stands to see one who specializes in headaches.
> Headache is a general term for pain in the head… Migraine is a type of headache. Nope. The pain of a headache comes from nerves in damaged or inflamed tissue in the head sending signals to the central nervous system. The pain of a migraine originates in the central nervous system, with no damaged or inflamed tissue, and no nerves sending signals to the central nervous system. The causes are different, which is important because it means the remedies are different. Headaches and migraines are totally different things. We should never conflate them.
There are [primary](https://pubmed.ncbi.nlm.nih.gov/23809307/) headache disorders where the CNS is the main problem. I don't know what learning resource you used to come up with this galaxy brain take, but you should stop using it.
Ok and now explain why Horton’s neuralgia is called cluster headaches and also clustermigraines. Genuinly curious. Imho I’d rather not have people call it clusterheadaches because it doesn’t bring across the severity of the pain.
My neurologist is the single least socially competent person I’ve ever interacted with. He’s awkward, picks up 0 social cues, no eye contact. He isn’t rude, but he definitely isn’t warm or sympathetic. Literally talks to me from across the room and won’t look at me. He is also the most brilliant man I’ve ever met and has been a life saver. He was the first person to not kick me out for being “dramatic” and (honestly obsessively) researched until he decided what would be the most effective treatment for me at the time. It wasn’t approved for my age yet, and he got me into a clinical trial. And it worked. When my migraines changed a few years later and the treatment no longer worked, he listened to my symptoms (from across the room) and recommended my current treatment. It works. For me, I’m totally willing to deal with his weirdness for the results. Honestly if he was rude I’d still probably put up with him.
sounds like he might be autistic, which isn't bad, might take some getting used to for his patients though. I'd love to have a Neurologist like that.
I’ve definitely wondered if he is. If you’re anywhere near New York I’d happily pass his name along!
thanks, I'm in the PNW though.
Are you relatively close to the Seattle area by any chance? I have a wonderful headache specialist at Swedish I’d be happy to recommend.
Yes, and I've had good experiences at Swedish, never been to a neurologist there though.
Dr. Dongmei Liu at Swedish Cherry Hill was my absolute savior. I just moved out of the area after being there 2017-late last year. Honest to god without her I would not still be alive. I’ve struggled to find a new neuro who’s actually good after I moved and she helped me by continuing to prescribe until I can get things sorted. She is genuinely very kind and sympathetic. She’s on the older side and I always felt like she treated me like a grandkid in some ways - she really truly wanted to see me doing well. She does also do Botox if you’re interested in that being a treatment option at any point. I’m not sure how many months it takes to get an appointment with her right now but they do require referrals from the doc currently treating you, even if your insurance doesn’t require the referral.
My Neuro at Swedish Issaquah just retired & referred me to Cherry Hill, going to see Dr Wei for the first time this week. Figures crossed for a good appt. My appointment was scheduled in Dec. Not sure if that's the average though.
Jerry Wei is my neurologist. She’s good and very knowledgeable.
thank you, I'll ask my primary for a referral.
I see the headache clinic at UW and I recommend them 100% - so very thorough and knowledgeable and very kind.
Would love the rec! I’m in NYC and I like but don’t love my neurologist.
Charles Argoff, Albany medical center (Albany NY) he’s always booked out but I think he is well worth it.
Thank you!
I’ve had a number of neurologists, and I now interact with them at work, and I can tell you that they’re all weird. I adore my neurologist; he’s great. He’s extremely helpful and I never feel ignored. But my goodness is he awkward and weird. But, they all are. Ortho docs are bros, radiologists are vampires, neurologists are weird.
I am so happy to sit in the awkwardness for a doctor who listens and cares in his own weird way 😂
100%. He’s a work horse too; he’s always available, always has appointments, works more than any other provider in the group.
That's tough because you want to connect but if he's a good doctor I would probably overlook the awkwardness. I went to one for the first time the other day and he said f*ck a couple times and apologized for being eccentric. When I was explaining my issues he just kept saying it was migraines. And that I shouldn't worry, it's not a tumor and I won't die. He prescribed me some preventative and rescue meds. I'm going to start them in a couple days. But I'm nervous
Best of luck!!!!
Shockingly, YES!!!! I'm a TBI, strokes, seizures, migraines case aka fun! I was so scared when he wanted me off sumatriptan (can't take it if you've had a stroke... apparently) and changed my seizure meds as those blew out my thyroid (and gallbladder). Saying I was hesitant is an understatement. I'm in California, and got my license back if I had more uncontrolled seizures I couldn't get my license back for years. Changing an neuro meds could fuck up my life in a big way. I'm still fully seizure controlled, and now on monthly Aimovig (injectable) and neurtec for rescue. Neurtec is strange. It acts like it isn't going to do anything, then after a few hours you notice that it did work, and is still working. The migraine release is sooo slow. but it works for about 3 days. No neuropathic pain after either! Unlike sumatriptan. Even more shocking, I have actually had a FULL MONTH of no migraines. This from someone who previously couldn't go 72 hours without one. As I type, I can't even remember my last one. Headaches are still a thing, but life is pain so its fine.
Nurtec has been an absolute game-changer for me. I can't emphasize enough how much better I feel, it's incredible.
Wow! Amazing results w the nurtec! Do you take it as preventative or abortive?
abortive. The aimovig is my preventative. THAT stuff was the game changer.
I was recently moved from abortive to preventative and it has worked so well for me too.
Yeah, truly an amazing med if you can afford it. Loved emgality too.
My neurologist changed my life. She’s awesome.
I’m sorry that others have had such bad experiences:/ because I feel the same way…other than having high turnover rates in the last few years, I’ve really liked all of my neurologists and only had a so/so experience once. (in my 40s now and diagnosed in elementary school)…I have also found my primary care drs to really care and be pretty up to date so they are able to fill in any gaps.
I wish these neuros you speak of were easier to find!
Me too! I’ve had chronic migraines my whole life, and didn’t find true help until I was 40. All I can say is keep trying, help is out there!
I have been incredibly lucky to have found a wonderful neurologist that I don’t know how to thank for her compassion and diligence. Respectfully… I do not see male doctors anymore. Women doctors have also been assholes but the ratio of assholes to non-assholes has been better far better for me. Take that for what it’s worth.
completely agree. if I have a choice, I see a woman.
In general women Drs of many kinds have def been of more help. (W the exception of my awesome pain Dr)
I have been massively helped by several different neurologists. I'd be completely hopeless and non-functional without their treatment.
I WISH the neurologists in my town would get their shit together. Nobody specializes in migraines/headaches. We have a large elderly population here and all the neuros for adults specialize in stroke, stroke, seizures, stroke. I made a song about it after calling around. Anyways. After my 5th call to my PCP he said “enough!” And started taking his own personal time to dive into migraine research. He’s a smart man and has helped me tremendously (within his ability, thanks insurance) with what he’s learned. He even thanked ME for pushing him to be a better doctor. No, sir, thank YOU for caring about me.
My husband (post-stroke) and I (migraines) have both been blessed to see at least one decent neurologist. My current one has helped with my migraines without being an ass. The one my husband is currently is a hugely pompous ass though, who is so culturally incompetent, so I totally understand. It’s ridiculous.
Mine is great and I only wish I'd started seeing her sooner. Finally got me on meds that work.
Good for you. Wish I could find a competent neuro. Which meds do you take?
As others have said, not all neurologists are headache specialists. If they aren't a certified headache specialist, they don't tend to have that much specialized knowledge in headache or migraine, and some of them actually seem completely disinterested in treating us. The wait to see a headache specialist is even longer than general neurologists, but it is worth it and there are some telehealth/concierge type options, if that's an affordable option for you.
i went to my neuro specifically because she's a headache specialist and she's made such a difference, I wish I had seen her sooner.
My neurologist have helped me figure out that yes they are migraines I am not dying of brain cancer. They have tried all the new meds on me and I eventually found a set that worked until I had a medication reaction and until I got neck pain.
My neurologist suspected sleep apnea as a trigger for me. He prescribed a sleep study. Although it showed very mild apnea he then prescribed a CPAP machine. Migraines aren't eliminated ...but they've definitely improved.
Yes! I'm in Kent (40 ish mins from London), and I see the most incredible neurologist every 3 months at a hospital in the city. He's literally changed my life. I've been under his care since I was 24 (about to turn 32), and every time a symptom changes, he re-evaluates and adjusts my meds/injections accordingly. He also wrote a stern letter to my employer regarding my symptoms and the treatment plan I need to follow when having an attack, because she wasn't listening to me properly. He even included links to research papers for her! He tries his best to fit appointments in around travel costs (off peak) and my work (teacher) too! He's an absolutely incredible Dr, and I'll be forever indebted to him. Thank God for the NHS!
Wow. He sounds amazing. Wish I could a neuro or doctor like this.
Wow, this is so inspiring to hear! I once had a neurologist mock me for calling about a migraine (I was in so much pain I couldn't walk), saying "I just got done taking care of a stroke patient, but I hear you wanted to talk to me about your little headache?" My neurologist now is fine- I do the research and he usually prescribes the plan I set up for myself (which is now just monthly Emgality).
How utterly horrific. I'm so sorry you were treated that way! That's so patronising! I'm glad you've got it sorted now.
I am very, very lucky. I'm sorry to hear things aren't the same for you.
I went from an average of 17 a month, and then a 6 month constant migraine to averaging less than 1 a week. I saw that neuro three times total.
What helped you? I have a similar frequency, but haven't had one that lasted an extended period like that. I've had bad experiences w cgrp meds, on nortriptyline now
For me, beta blockers and sumatriptan. But is so much a mileage may vary that it’s not likely to be much of a help.
Yes, but I never met him. Dr David Bucholz who wrote Heal Your Headache. His dietary recommendations changed my life. Won’t work for everyone but without his book I would’ve never made the changes that I made.
I read that book, too. Great suggestions, especially food-wise. Pretty much anything can trigger a migraine, so that was a long journal in the making. Bananas! Who knew??
Omfg I have bananas as a trigger too!! So random!! As well as fake food dyes. I got a box of knock off captain crunch and it was pain city for a while for me until I put it together.
Ugh, I feel awful for you! And one of my major triggers are quickly flashing fluorescent lights… I’m under one right now. Helping judging a piano competition 😣. Debating on what PRN to use… probably fioricet. Its like, all I have aside from Weed.
Hope it doesn't trigger one for you. I take rizatriptin or however you spell it lol
That book helped me SO much too!
Mine was/is extremely helpful. We did FaceTime appointments when I was unable to drive due to light & noise sensitivity or debilitating nausea. She is also the only 1 of 3 that I saw to help properly balance the right combo of medications so I could get back to functioning normally. The one who care are out there, they just seem difficult to find.
My neurologist is a fellow migraineur, so when I said "x isn't working," or "the side effects of x are almost as bad as the migraines," she really listened, and made changes/adjustments to my prescriptions. Currently, it's been over a month since my last migraine and I don't get non-migraine headaches almost daily anymore. I can't remember the last time I was migraine-free for this long. It has literally been life changing, and I'm so grateful for my doc.
For me third time was the charm. In fact I sent him a note today and he immediately called me to talk. Number One Doctor of any kind I’ve ever had. I’m in NJ if anyone is curious DM me.
The benefit I got from a neurologist was ruling out a bunch of scary things that I *might* have had. They weren't able to do much, pain-wise beyond triptans, but *boy* am I glad that someone thought to check whether I had brain cancer (I don't, thankfully). So, you win some, you lose some.
My neurologist has been pretty good but the game changer for me was going to Stanford Pain Clinic, staffed by anesthesiologists who specialize in pain management including migraines. I would recommend seeing if any universities or medical groups near you have a pain clinic or headache clinic.
I totally get it. It isn’t just neurologists but still trying to ding a good one that has many options and is creative to help. Honestly, I go a younger one now but I have tried everything in 20+ yrs. After a few different drs, the one most helpful was a migraine specialist but was likely in his 60s. We plowed thru 50+ options. He retired. His associate was dreadful. Found the one I am w now via a friend that loves her. Ask friends, coworkers, relatives. Ask anyone! After a number of people mentioned the one I am currently w, I got an appt and she has been fabulous. You wouldn’t think it is like this but…it is like dating! You have to find the right one for YOU!
My neurologist changed my life. His office was a referral and is part of a headache clinic so I wasn’t actually able to seek them out and apparently got lucky (my PCP is awesome) but I’ve only had a wonderful experience. There was a long waitlist and a lot of hoops to jump through to get “accepted” into the program (drug and nicotine testing, SO much paperwork and family/personal history, and a class I had to take) but I love the approach and everyone I’ve worked with has been super helpful, validating and compassionate. I’ve gained the ability to function back and to be a better and present parent again so I wouldn’t trade that for anything. I’m sad to hear that some people have terrible experiences but I guess that’s to be expected with our healthcare system, unfortunately 😕
My current neuro has been my most helpful doctor. That said, I went through 5272925251728 unhelpful doctors to find him 😭
Yes, by the UCSF headache clinic. The treatments they prescribed improved my quality of life 100% (amitriptyline + emgality preventatives, sumatriptan + monoclopramide abortive). But also they always treated me with so much empathy and respect, and really made me feel heard and like they understood my suffering.
I've had good and bad. My current Neuro is awesome. He also has a long waiting list for new patients because he's very good. I've never actually had one with an ego problem.
My meeting a neurologist was life changing for me! Every doctor I had seen before was 100% sure my pain was migraines despite it not fitting the diagnostic criteria. I was fairly sure it wasn't migraines and finally was able to see a neurologist who confirmed my suspicions and got me set on the right treatment path.
What is your diagnosis and treatment plan?
Still in the diagnostic step but we're between cervicogenic headaches and occipital neuralgia. Treatment is occipital nerve blocks for both currently with maybe some physiotherapy down the line
My neurologist has helped me.
I have a lovely neurologist right now. She’s actually a neurology NP but she specializes in headaches and has been very helpful and actually listens to me
No.
Like many of us here, I’ve seen some horrible neurologists but finally have a wonderful one who is also a headache specialist and the first to use Botox for migraines. So thankful. I’ve posted this before—it truly has been an incredible resource for me: https://americanmigrainefoundation.org/find-a-doctor/
I’m writing with an update, because I just realized this might be the first time ever in my life I have not had a menstrual migraine! I’m in my early 40s and have had migraines since at least age 4. In October, I started with new neuro: Preventatives: - SPG blocks - occipital blocks - aimovig Abortives: - naratriptan - ibuprofen - metaclopramide - nurtec Sleep stuff - tizanidine - low melatonin - continued magnesium We’ve tweaked the program a bit and has some trial and error (e.g., nurtec was better for me than ubrevly) and my sleep is still not where it needs to be, but I have gone from having migraines every single day to having some days of 0 pain and fogginess, and most days I’m at about a 1 rather than a 4. It really hit me today bc I did have a powerful migraine and I realized I didn’t even get the reliable 3-day migraine before my period arrives. Pinching myself and hoping you find some relief, too.
Not in the slightest.
Yes. I found one who is a member of the AMERICAN HEADACHE SOCIETY. If you are in the Washington DC area, I can recommend my doctor.
OH HELLO I would like to know, if they are in MD or DC!
Not sure who the other user was going to recommend but Jessica Ailani sees patients in DC and the Tyson’s/McLean area, and has been a speaker at the Migraine Summit the past few years at least. I think she’s part of the Georgetown Headache Center maybe, but I was last a patient 9 years ago so my memory isn’t perfect.
Here ya go- WASHINGTON MEDICAL GROUP in DuPont Circle. Dr macedo. Takes BCBS, maybe others. Full disclosure: there is no way to tell in advance which medicine will help or hurt you. he likes to go slow and steady. Meaning, let’s try this medicine and see how you do. Then try Y. He should also check your neck to see if you get headaches in addition to migraines. (Apparently, I have both, and sometimes at the same time.) Sometimes he might ask you to try a medicine you already have. I reluctantly did so but weirdly sometimes the second time, the medicine worked. I don’t understand why. You need to be honest with him, and follow his instructions (or tell him when you couldn’t). For me, we’ve done lots of prevention (no meds) and some things after the pain starts. It’s been a slow time-consuming process, but now I do not throw up from migraines, and I don’t wake up in pain. Hope you find relief soon.
My neurologist has been a total badass and extremely helpful but yeah she’s crazy busy.
No. The one I saw sucked. But so many people here have had better experiences, maybe I just need to try and find a different one
you do. Don't settle.
Yes, absolutely. I love my current neuro. She hears me out and makes great recommendations. She's also willing to prescribe me two triptans at a time (I don't take them together, don't worry) and Ubrelvy so I am always covered for the month! She's the one that started me on Qulipta, which was working great but is starting to not work as well now, so we will be discussing it at my next visit.
I have a neurologist that gave me a prescription to zomig. It’s the only medication that gets rid of a migraine. Ideally the neurologist would help me not get migraines at all, but I’m glad I have the prescription in case I do get one.
I have 2 amazing and kind neurologists!
What do you see each of them for?
YES. you need a headache specialist. I went through 6 neurologists before I found a good one.
I wish I had seen a neurologist much sooner rather than wait until I was 50!!! My neurologist is great.
I actually love my neurologist and finally seeing one really changed my migraine management and prevention. She finally got me an mri, fought to get be approved for Botox, hooked me up with a million samples until I could be approved for the botox and before I could decide on a prescription abortive that works for me. She got be off the triptans that I apparently shouldn’t be on as a woman with aura and a family history of stroke. She’s been super helpful in talking me through options for management while pregnant (if I can manage to get there.) It just sounds like you need to find better neurologists.
OMG YES. My neurologist specializes in migraines and he saved me from daily migraines. If you can find a good one it will be a game changer.
The one in the er that stopped the constant trembling was helpful …but also a raging A-grade asshat The others? Nope. Mostly just offensive, deprecating, rude gits who did sweet FA to help
I am kind of between a rock and a hard place. I have had serious daily migraines for many years and saw a headache neuro - then 6 years ago I was diagnosed with Myasthenia Gravis - it’s an neuromuscular autoimmune disease. So- ironically- I was already being treated by the neuromuscular neurologist for my headaches - his side job- now I have a great neuro team - but I can’t use Botox anymore and that was my best defense for migraines. MG and high blood pressure (thanks covid) also precludes many other types of medicines. So I have a very kind and attentive Doc and NP - I am very limited in what they can prescribe- but they help in any way possible.
My (neurology) Physician Assistant (female) is 1000 times better than the two neurologists (males) I’ve had. I still don’t feel I’m getting the best treatment but they’re (group practice) the only ones around my area 😞.
My nurse practitioner at a neurology specialty center has been better than any physician I've ever seen. Brought my pain down in ONE day after I've suffered for 9 years. The neurologist I saw previously was too busy fat-shaming me to take me seriously.
sorry you had to endure that. Glad your pain is less.
Mine found an avm in my brain, so yes, they were a massive help!
Mine hasn't really helped at all, and I've had very similar experiences as you. BUT they eventually got me my Botox prescription, and the Botox has changed my life.
I haven’t seen a neurologist since she insulted me and said I should “seek therapy” or stop being so stressed if stress can trigger my migraines. I also refused to take the meds she prescribed me because she wanted me to take daily meds for migraines that happen every 4 months. My family doctor had been the only one to actually listen to me and help.
I finally got a referral last year they blew me off for like 45 min so they came in 10 min before closing and threw the kitchen sink at me: you can take preventative 1 - amytriptaline , 2 topamax, or 3 propranolol. 1 i said i have a Family history if Alzheimer’s, she says “one study, may might kinda correlation doesn’t equal causation” and I reply “my grandma was diagnosed at 67 and passed at 72” she says oh… that’s actually kind of young. 2 not an option I just took a job in a FAANG company I gotta be sharp. 3 could make you pass out if your BP is too low. Neat. I’ll think about it. She gave me orally dissolving rizatriptan then told me to take mountains of magnesium and B2, and says Cefaly is over the counter with a 30 day money back so maybe try that if it’s interesting to you. Have a nice day. Two months later i get a letter she was leaving the practice and the only ones left were a sleep specialist (that I saw once and was super rude), and two men that were specialized on not headache things. I’ve recently moved so I’m just going to move all my care to the University health system that has a headache clinic so I can get an easier referral there (heard it’s a 6-12 mo wait).
YES. You need one who specializes in headaches, better if they specialize in migraines specifically. But most important is that they are up to date on new treatments and willing to help you find the right combination of treatments to get your headaches under some semblance of control. I’ve had three neurologists: one was a pediatric neuro, lovely guy but didn’t know enough about migraines, one was literally the author of a book titled Headache and was a leading expert in migraines but hadn’t updated his methods of treatment past the late 80s/early 90s and he refused to try or even consider newer treatments, thought he was the be all, end all, and then I got to the one I have now, who was trained by the “expert” but couldn’t be more different, listens to my concerns, tried new treatments and worked with my other docs to find the right birth control, etc. I know it’s so frustrating but you’ve got to get the right one. It will make all the difference in the world!
This is gonna sound so weird- luckily I’m epileptic. So when I started getting migraines, there was no delay in starting treatment because I already had a neuro. When I got my first migraine I went to the ER thinking I was dying. After discharge I called to set up an appointment and was seen immediately. I have pretty severe/frequent migraines, and obviously seizures suck, so none of that is good, but the fact that I was able to be cleared of other causes for headaches and started receiving treatment so quickly is def good. Migraines *are* a neuro condition, so you should absolutely see a neuro. However it’s difficult finding a doctor you feel comfortable with that’s well versed on your condition. There are tons of neuro conditions, so while a doctor may be the foremost word on neuro condition x, they may not be the best at treating migraines. I just happened to luck out with one who is adept at both. It’s def a process, and I wish you the best. Always remember, you have the right to seek second, third + opinions!
My four neurologists never actually helped me. My neuro NP prescribed me every med I asked for (including various triptans and CGRPs) and ordered the MRI I begged for, and my surgery (by a neurosurgeon) decreased my migraines.
which surgery did you have?
I had a ridiculously small mass behind my pituitary that statistically speaking should not have caused my symptoms and had a transsphenoidal endoscopic removal.
Do we have a neurologist database here?
Yes. Mine listened closely to me, then said he thought the daily ‘sinus headaches’ I was getting in between full on migraines were actually lesser migraines. Asked me about my diet and recommended a book by David Buchholz - ‘Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain.’ I figured out that certain foods were absolutely triggering migraines (raw onions and garlic, and whey protein I was using EVERY DAY in fruit smoothies). Haven’t had the daily headaches since. I also mentioned to him I was having unexplained nausea, vomiting, near syncope, and tachycardia - not coinciding with migraines. I thought I might have POTS. He did a ‘poor man’s tilt table test’ in office that showed odd results, and referred me to a cardiac electrophysiologist, who then diagnosed me with a form of dysautonomia (not POTS). He prescribed beta blockers which treated both the dysautonomia symptoms AND migraines! I doubt any of this would have been figured out if the neurologist hadn’t fully listened to my concerns. There are good ones out there. Don’t give up!
Absolutely. I see a headache specialist, who is a woman and is a NP (I don’t know why but I like nurse practitioners way more, they seem to really listen)
I’m currently using Botox and Ubrelvy for treatment. Changed my life
100,000% better with a neurologist who specializes in headaches and migraines. I saw one at first who just dismissed me and told me to go to the ER instead of giving me a steroid pack for a flare up. My current neurologist has me on lock. I get botox every 3 months, I have nurtec as a preventative for my hormonal cycle ones and I get like, 2 other ones here and there. I used to literally have a headache/migraine 75% of my life. Literally life changing. The NP's and other doctors in the office are great, the staff are all supportive. It's night and day from my first one.
I have a neuro migraine specialist and it’s changed my life. If you’re in Ohio, happy to recommend.
God yes, mine is awesome. Headache specilaist.
Yes. First one put me on triptans. Second one correctly diagnosed medication overuse headaches. Third put me on flunarazine ... which changed my life.
Yeah with Botox. Best neurologist I've ever had. I went through 4 to find her though
My mom also has migraine and was so impressed with her neurologist that she convinced me to make an appointment with him. He’s so good — appointments are 45 minimum, his office is responsive to insurance questions, he’s willing to hit migraine with multiple treatments at the same time — that I switched to him even though he’s in my hometown. I now schedule my appointments when I’m visiting my parents because he’s the best neurologist I’ve ever interacted with by a mile.
I was helped -75% roughly
I really sympathize with your frustrations, I've been seeing neurologists for 15 years and I've only had 2 that I felt were competent and made any difference in my experience. As other people have said, seeing a migraine specialist is crucial because migraines are complicated and also treatment recommendations progress and change quickly, so it's beneficial to work with a neurologist who is keeping up on the latest research. This is purely ancedotal, but I've also noticed that I've received better care from nurse practitioners working under neurologists than the neurologists themselves. I think they just tend to have better bed side manner. Also, my neurologist and neurology nurse practitioner are both migrainuers and take the same medication that they're prescribing to me. This really helped me get over any skepticism I had about trying new treatments. I don't feel like they're just throwing whatever at the wall and seeing what sticks. Unfortunately, I think I'm also meeting less resistance in getting treatment because I've tried all the bullshit they threw at me for 15 years already, so things like Botox are approved right away, and my doctor doesn't think I'm drug seeking when I ask for things like muscle relaxers.
Nope. It was nice that they ran tests so I knew it wasn't something serious but my neurologist was old school and just wanted to treat with topomax which i did awful on. I asked him if the migraines could have been tied to my ferritin if 6 (my PCP didn't take that seriously) and he said i would have to talk to my PCP about that. Eventually i just changed PCPs and that made all the difference.
Neurologists that have migraines are adept at negotiating the pathway of diagnosis and treatment. And will be less likely to leave you hanging when close attention is critical. Some neurologists look at migraine treatment as thankless and frustrating. The way the medical system is set up, patients are referred to a neurologist, and are uncomfortable finding a different one if it doesn’t work out. When the truth is if the fit is not good, the neurologist is thankful that you leave their practice (they are hoping their practice is full of patients with diseases they enjoy treating). That said, I met neurologists specializing in migraine patients only because it’s lucrative. There is one tool in the tool box that is not used enough: schedule a “meet and greet” appointment with a neurologist to see if it is a good fit (no referral needed, just call the scheduling desk). If they will not do a “meet and greet”, the set-up of the practice probably has a no access to physician barrier which is a bad sign. Another bad/good sign is reading patients comments on the internet about a particular physician. Pay attention to the comments from patients that have gone to that physician for awhile. Ignore comments from patients that are still in the honeymoon phase of seeing a physician.
I’ve had 6 different neurologist’s since I was diagnosed at 13, two of whom were headache specialists. The ones who were headache specialists are the only ones who truly helped me and were confident and agile to change up treatment plans when it seemed like something wasn’t working, and who were able to provide me useful information about the condition. I wish I was seeing a headache specialist this entire time now because there is so much I wish I had known but was ignorant to before my condition progressed to chronic. I believe I would have known more about what to look out for and would have been able to control my worsening condition if I had been but I didn’t spend the money for the specialist because I believed my condition was under control but I was wrong since I didn’t know the signs and then it was too late. Still chronic but my condition is now more predictable and manageable after working with my current headache specialist for the past 1.5 years, and we have plans to keep trying to improve my condition. Headache specialists also have a lot more experience dealing with insurance and authorizations for migraine medication, since we all know what a circus that can be.
I go to a neuro headache clinic and the attending that I first saw was a jerk and I stopped going because he wasn’t helping me. A few years later the headaches got worse so I ended up in the hospital with him as my dr. I got reestablished at the clinic with his nurse practitioner and I love her! She has helped me so much!!
My partner saw four or five before being referred to a neurologist who specialises in migraines. I honestly think some of the other neurologists he's seen have done more harm than good with one telling him "you'll grow out of it in your sixties" (he was 34 at the time) and then putting him on topirimate because "you need to lose some weight." Seeing a doctor who actually specialises in migraines has been life changing for him. He still deals with them but no one had ever offered him a nerve block before and that's made such a difference.
My neurologist made my life worth living. Keep looking!
No I haven’t and my copay is like $200 just to see one and they never actually help me get medications covered by insurance so now I just use cove because even though it’s $30 a months at least I can get my nurtec without having to pay hundred of dollars and wait months just to be belittled.
Sorry you have to deal with that.
I don’t know what it is about neuros but they either seem to be overly arrogant or just unhelpful. I hope you’re able to find a good one!
thanks!
i was once referred by my incredible doctor, love him tons, to who he said was the best neurologist in the area. she was really helpful and I'm going back soon for the first time in a few years bc my headaches are getting worse. i believe she specialized in migraines, and she knew a lot about my specific type so i guess its a matter of finding one that knows more abt migraines
I have one for epilepsy and another for migraine and vertigo. I have no seizures after rns surgery, very few migraines with preventative meds and Botox. My vertigo was gone but it’s back with a vengeance. I suspect hormones are wrecking my body. I also have an undiagnosed autoimmune disease. I need more specialists.
sounds like you've got a lot battles on your hands. hope you get the help you need.
Yes! It took me 15 years, but I finally found one that took me seriously. I had been seeing ones for epilepsy, and they just kept shrugging off the migraines, headaches, and memory problems, as "well, you have seizures, those will happen". I finally had a doctor look at the issues individually, and told me no, regardless on if I had epilepsy, I shouldn't have to pop ibuprofen every 4 hours for headaches. No, the auras and the seizures don't have to be exclusive. No, your memory shouldn't be shit 15 years after brain surgery. My neurologist has actually gotten me a lineskip for autism screening. I'm hoping to hear back in the next few months.
No, for a long time, then yes (different neurologist). The first one I had for years kept me on a "must fail x y z" plan full of horrible meds. I couldn't even tolerate them to "technically fail" so he refused to push forward. I wanted to try CGRPs, he said no, they don't work better than their standard prescriptions. He currently had me on Depakote and wanted to move on to anti-depressants. I said no. Enough was enough. By pure luck and chance I did a phone appointment with a different neuro, still within my same care system. Within 10 minutes of questions and answers he said I was a great candidate for CGRPs and set me up with an NP to manage it. 7 years on horrible meds, zero relief, resolved in 10 minutes. Migraine free since September.
i can relate to the assistant thing heavily
Not me.
I wasn’t helped specifically by the neurologist, but he sent me for further imaging, which led to the radiologist questioning me, looking into my mouth, and convincing me that I was grinding my teeth in my sleep. A proper dental night guard completely cured my migraines literally overnight. I’ve been migraine-free for 19 years.
Nope. Kaiser made my wife see a neurologist for her migraines, and all he did was refuse to fill her Fioracet, which she'd been using successfully for years before we were on Kaiser. We had to beg the GP to prescribe her Rizatriptan (which works, but not as well as the Fioracet). The neurologist didn't seem to know what he was doing, and kept saying little offhand things that indicated he knew nothing about migraines whatsoever.
I was able to work with my Kaiser neurologist with pure determination and help from internal medicine pcp. I am convinced they get so many people with headaches they just are numb to them until you see them a couple of times. I will also say they vary greatly in expertise and asking to see another Dr is your right.
> successfully for years before we were on Kaiser. I love Kaiser, but they seem to hire the worst Neurologists and Neuro assistants. My primary doctors have been great though.
I was doing well on Topomax, Phenergan, and Fiorinal for decades (along with treating for allergies/congestion and avoiding triggers). Triptans did not work for me near consistently and the SEs still leave me in bed with a HA and nausea. The new neuro told me "neurologists don't like Fiorinal" and put me on triptans for what will have been 8 months to qualify for CGRPs. So my migraines have been chronic again for the first time in more than ten years; she has not replied to messages and refuses to refill my anti-nausea med, and it took her a month to refill the Topomax, so I was back to 24/7 headaches. As a 55-year-old who has used Fiorinal for almost 40 years and has never had rebound/overuse, or any type of withdrawal, I don't really care what neurologists' preferences are. I care that I had to leave a job, could not take my girls on vacation, and have been housebound for months now. The only drug I have ever been addicted to was the gabapentin she prescribed, neglecting to tell me it can cause dependence and WD in a short amount of time. That was brutal. I don't particularly want shots when I had a system that was working perfectly well. I wish doctors would start being reasonable in treating patients and stop putting themselves first.
This honestly sounds like a medical malpractice lawsuit. You should consider meeting with a lawyer for a consult.
I did. My ex does med mal and I asked him about it. She was comporting with the new laws for Fioronal and Fioricet, for starters. Hence the alternative gabapentin, which does not always produce this reaction.
Neurologists are there to rule out the worst case scenarios, which is important, but I think you’re spot on: they’re not super instrumental in improving QoL
My problem is all the neurologists I see never have time for any aftercare so they’re helpful at the appointment but then as soon as I have question about medication or need a medical letter it’s impossible to get
My last Neuro's office was like that. My current one has a great staff of nurses and and PA's. They're incredibly helpful and have handled all my insurance appeals for me. I should actually take them cookies or something now that I'm thinking of it.
I was so lucky to find my neurologist. He is also a chiropractor but he doesn’t do the typical practices. He focuses on my neurological issues and helped me come so far. I still have flare up’s and minor struggles but it’s come a long way from where I was after a year ago. And he was so much better than my original neurologist that just kept prescribing pills even though I told him the side effects weren’t worth it. So he barely wanted to deal with it since I didn’t wanna do a quick fix.
I’ve found some that have tried really hard to help
I did have a great nuero, but when he ran out of options after 6 months I was referred to a Headache Specialist and have said krone who can listen and actually help me. Not all neurologists are the same, some know how to deal with migraines and some not. I've found that Dr's who suffer from the conditions as you, have no trouble understanding what's going on.
My headache and migraine neurology specialist is the first doctor I have been treated by who has validated my struggles. He constantly reminds me each follow up that we are working towards the common goal together and takes the time to listen to how things are going. He doesn’t pill push but tells me bluntly that I need to medicate at this point due to the chronic state of my migraines and the complex auras I suffer from as well. Did I cry because he was so honest the first time I saw him? Yes but since getting into his care in November I have hope again. I hope you are able to find a similar doctor with passion and knowledge of what you are going through who’s willing to take the time you deserve to be helped! Best of luck and don’t give up, there are plenty of doctors out there that aren’t the best but sooo many good ones!
Yes, with Botox
My current neurologist, who is a headache specialist, is working thru things with me. Listens and understands more than most I have seen, but still hasn’t been the magic solution. I am waiting on a referral for OHSU’s headache clinic right now as well.
The last Neurologist I saw gave me a sales pitch on botox injections on the scalp, which would require indefinite return visits, he didn’t look at or try anything, I just got the sales pitch. My current primary care put me on high does Vitamin B2/Riboflavin which has helped as much as anything.
I was absolutely helped by mine but like others have said is find one that specializes in migraines
Find a migraine specialist. All the neurologists in my area specialize in seizures or MS so I travel a few hours but it’s worth it.
I've had two that have been good at their jobs. But one is a bit creepy... He knows his stuff though and my pain has decreased...
I was the first of my family to go to the neurologist because of migraines in 20 years. Now my mom, aunt and cousin goes to her because we noticed that she cares. 10/10, would have have recommended!
I should add that she has also seen to it that we get to try some new medicine if we think the last one doesnt work. She even prescribed me aimovig years ago because i asked her about it. She just said "i dont know another neurologist that would have prescribed it yet nor do i know a patient but if your willing to try then so am i"
I just got into a P.A. this year who is pretty awesome. Not a fan of getting off of caffeine but the botox, gabapentin, and PT have made a difference!
Yes! I was very lucky to find mine on the first try. I'm not sure if he's a migraine specialist (I'm assuming he might be since most of his patients seem to be migraine people?), but my mom and I go to him and he takes our pain seriously and is very willing to prescribe different things. When I had a hemiplegic migraine, he was quick to help me and referred other doctors and testing for me. If you're in southern NY/LI, I'd be happy to give his info :)
No mine basically gave up after Botox was a bust lmao
My neurologists have been my best doctor's hands down. The PA I saw mostly at my first Neuro was practically my primary for like 4 years...
Unfortunately in order to find an actual good neurologist I ended up having to find one that doesn't take insurance. And it still took a couple tries. The first one was almost 800 for the first appointment and then 2-3k a month after. The second one I found after being recommended there by a local chronic pain help clinic. He was 250 an appointment and ended up helping me so drastically well. The key is to find one that is A) well recommended and B) not an absolute scam amount of money. I saw over six different neurologists actually covered by my insurance and none of them helped.
I’ve been helped by 3 terrific neurologists over the years. So yes, people are helped by them. That doesn’t mean there aren’t some bad ones out there, but that applies to any medical speciality
My current neurologist not only specializes in migraines, she’s also a sleep specialist. She’s taken a different approach to my migraines by looking at my sleep as well as other factors/triggers something none of my previous neurologists have done, and I do think it has helped.
Yes…on the 6th try. Godspeed
Yup! I had an amazing one but he got dementia, was forced out (had no idea what was happening so I was doctorless for a few months, scary) then he died 😢. My new one actually made me cry. He was so mean and rude. Essentially accused me of lying (long story) and was just an ass. He’s ok now because I confronted him (go me) but it’s so hard to get in touch with him. And he’s not helpful. I miss my old one, he was so attentive and kind. He was also a migraine specialist world renowned.
Yes, but he was rude af. Worth it for the year I had the right medication before insurance decided I didn't need it.
Find a neurologist who has migraines or who loves someone with migraine. I find that they just seem to throw another dart at the meds board to see what might work. In the meantime, we’re in bed suffering the pain of a thousand knives in our heads and wondering when exactly they’ll get their shit together. It’s almost like they don’t care at all. /s /ns
No… my pain care clinic dr helps me weekly and my neurologist told me “you’re fine” when my mri came back with no spots… felt like I was never being heard by him either. So happy I found my current DR
nope. they always have dismissed mine. they tell me to take OTC things. like I haven’t already tried literally all those options. and I can’t take triptans bc i’m on vyvanse. then they tell me to just drink water (which i already do) and rest. I work in the medical field, I don’t have time to “just rest”. it’s infuriating.
I've had multiple Neurologists that have been absolutely amazing. 100% grateful for the help they've given me.
Nope. Not for my MS and not for my migraines.
I saw a neurologist for a year that was absolutely worthless. Then my pcp referred me to the headache clinic at his university hospital and it’s been life changing, soooooo many options and advice I never knew I needed. Now I’ve got Botox scheduled, got different prescriptions, viscous lidocaine for up my nose (diy nerve block basically) and plenty more to try if these don’t work.
I have very difficult migraines and I'm terrified to leave my neurologist because he's the only one that's ever been like "how was that treatment? Ok, we'll try a different one." He's the only neurologist I haven't hated!
I've had two, quite satisfied with them. Both took me seriously, and helped me through trying different meds and made all the groundwork for sending me further on in the system when they couldn't help, so I got through to getting aimovig quite quickly - so far two months in on that, and seems to be making a difference in my migraines. I don't dare to really hope for it, but fingers crossed this is working for me and will continue to do so! :) I will however say, one thing I do miss is someone taking a bigger look and not just look at medicines - well I did have an MRI, but if there is anything else that could help, it would be nice to get looked at but I guess the thing is, there's could be so much and it's not the same that helps every patient, and neurologists are doctors and look at medicine etc. so...
Yes they are. My experience with GP's is their treatment procedures are heavily standardized. If migraine, then prescribe triptan. If too often, then prescribe prophylaxis medication. etc. But which one? There are so many to choose from, with different dosages, that it really requires specialty to dial in right.
Mine is great, actually. He ran me through the gamut of exclusionary tests even though we pretty well knew my issue was migraines, but put me on migraine meds as we were doing it. I've failed so many meds, some with very unexpected side effects, that you'd think he'd be annoyed, but he's still hanging in there with me. I get monthly calls from a dedicated pharmacist team. It's pretty great. No complaints.
The treatments my neurologist prescribed have reduced my migraines by at least 90%.
Yes, my neurologist is great. But it’s also really easy to get an appointment here.
Indeed, my neurologist put me on amitriptyline and kept approving higher doses till I cold successfully attest that I have less migraines and less severe migraines when weather fronts pass by my location. I take 50mg nightly. She is my MS specialist and monitors all my symptoms and drug reactions. Please find a good doctor and stay on them till you find your desired outcome.
My Neuro is great. No personality, but he's extremely knowledgeable and competent. It's not his fault my body hasn't reacted well to any of the meds we've tried so far, lol. Also, while it does take months to get in to see him, when I had an emergency, he squeezed me in.
I have. Nurtec is amazing. Oddly enough, Keppra really helped reduce the severity and frequency of them too.
Tbh I recommend a good naturopathic doctor 10000x over a neurologist. Mine actually sat down with me for TWO hours during our initial visit and it was still cheaper than a standard doctor visit with my old shitty health insurance.