Tales from the Trenches: The Ever-Elusive “Right” Migraine Doctor

My migraine adventure began sometime in late 2007. I don’t know how long the migraine had persisted before I realized it wasn’t going away, but at some point I decided to see a doctor. At the time, I never considered I might be suffering from a “migraine,” I just knew I was in a lot of pain. And, it wasn’t the first time.

Around 1998, I had what I considered a very bad headache. I was in high school, though, and figured I could power through. I had work to do, friends to see, and a younger brother to attend to, so I gritted my teeth and self-medicated until it finally went away – in 2000.

For years, I was mostly headache free. I would have one every once in  awhile, but I figured everyone did. And, since they always went away, I didn’t bother about them too much. Until 2007 – when everything seemed to change.

I went from my PCP, to a neurologist, to an ENT, to special migraine doctor after migraine doctor. I finally had a diagnosis (intractable chronic migraine with aura), but no one could fix me. I saw the “best” migraine doctor in the country – the doctor everyone assured me could help – to no avail.

From city to city, I tried every triptan there is, a number of drugs I’d never heard of, day-long infusions, and more. I was poked, prodded, scanned, and examined. I was (mis)diagnosed with Meniere’s disease and had to undergo routine ear screenings every three months for two years. When it turned out I didn’t have Meniere’s, I was diagnosed with migraine-associated vertigo and told there really wasn’t much anyone could do.

At the time, there were no headache specialists in my city, so I saw my neurologist (who, I felt, had pretty much given up on me) and a pain management doctor on a routine basis. I underwent yearly MRIs and exams every few months. I was on Oxycontin three times a day, just so I could make it to work, Klonopin, a half dozen supplements, and every preventative in the book – and nothing helped. The pain didn’t go away – for two years.

Then, I moved to New York, and decided that since nothing helped, I was going to stop everything. No doctors, no pills, no exams. Nothing. I was going to do what I had done in high school – grit my teeth, self-medicate, and hope that eventually my life would return to normal. And, it did – kind of.

It’s now almost five years later, and I’m no longer considered “intractable.” While I still get migraines more days then not, they usually go away – eventually. It could take hours, more often it takes days, but I usually get some relief at some point. Now that the cycle is somewhat broken, I’m still holding out hope that I can get to a mere four migraines or less a month. And, I’m still looking for the doctor who can make it happen.

I’ve been loyal to my neurologist for years, even going back to her once I moved back from New York, but I’ve recently started looking into some other options. My city does have several headache specialists now, and I’m trying to get consults to see about switching. I’ve seen one, and since he didn’t offer anything I haven’t already tried, my search continues.

I wish we had more doctors, more – and better – medicines, and more options for care. Unfortunately, though, not much has changed since my grandmother went through this same thing fifty-plus years ago. We do have triptans now, which are lifesavers for some – including my grandmother, who still gets migraines a couple times a week – but they don’t work for everyone, including me. And, they’re contraindicated in many others. We also have some ergot derivatives, but not all of us can take those either. (I, for instance, see a ton of black dots and pass out if I take Migranal.)

There is a lot of push in our community right now to draw attention to the need for additional migraine research. I can only say that my experiences have shown me that we desperately need that attention. We desperately need more money for migraine research, and more funds to send neurologists and other doctors to school for specialized migraine training. In short, we just need more. Until then, however, I’ll keep looking for the ever-elusive “right” migraine doctor who can help.

14 thoughts on “Tales from the Trenches: The Ever-Elusive “Right” Migraine Doctor

    • Thanks, Jessica. And, I’m sorry to hear that it sounds like you. I wish you a speedy resolution to your doctor woes. I have hope that somewhere out there is a good doctor for each of us.

  1. You are in the same boat with so many of us who have never found the “right” doc or medicines. And, I think you are right about the fact that the doctors out there are not up to speed with what migraine disease is doing to our population, especially women. Well, hang in there, as we all do faithfully.

  2. I’ve been battling migraines since 1988. I’ve tried it all…some days it’s easier to grit my teeth and endure. I sure do hope more is eventually put into research. Thank you for sharing. It’s just nice to know you’re not the only person in the world dealing with this.

    • Landa, I agree. It’s helpful to know that we’re not alone. I’m sorry you’ve had such a long struggle with this disease. I’m watching the Congressional petition now, hoping that we can finally get some recognition and some additional funding for research. We’ll just have to see. In the meantime, hang in there.

  3. Hi, I just wanted to give you this website , I use to frequent , most of the people there have Mav, it’s called mvertigo.com I also have this type of migraine and it’s hard to live this way, (((hugs)))

  4. I’m in the exact same situation right now, still searching for a headache specialist who can help me. It’s very discouraging at times but I think it’s important to keep searching and never give up hope.

  5. Thanks for sharing…I have been stuck in the cycles as well and thought I was doing well for about six months (only one or two a month) until I got pregnant…Now I’m on a 21 day stretch with maybe three or four days feeling somewhat “normal.” My midwife prescribed fioricet (I kind of laughed at her) but I kept an open mind and gave it a shot–needless to say, along with everything else, nothing touches the pain or even takes the edge off a little bit. It’s nice to know that UNFORTUNATELY there are so many other people out there dealing with this. I am going on day 4 of one of the most excruciating migraines I’ve EVER had and I keep telling my husband that I don’t know what to do because I feel like I just can’t take it anymore. In tears at night, can’t fall asleep because it’s so bad and then doing the stay at home mommy thing while running an in-home daycare trying to push through my 12 hour days…Just seeing that I’m not alone and not CRAZY gives me some relief. I’m starting to think that maybe everyone I know thinks I’m just a little nuts. Fortunately my husband, my rock, knows what I’m going through as he too is also a sufferer of chronic migraines. But now that it has been so bad for so long during this pregnancy, I’m starting to think maybe even he doesn’t believe me. Hang in there, ladies! Hopefully one day someone who really understands the whole realm of migraines will also be genius enough to find at least some relief if not a cure! I’ve never seen it referred to as “migraine disease” until these posts but I think that’s exactly what it is! But for now, does anyone have any suggestions for at least temporary relief? Like I said, four days of this is making me lose hope that it will ever go away and I’m not sure how much more I can take! Being pregnant makes things very limited…Thinking of trying acupuncture this week?

    • I’m so sorry to hear you’re having such a hard time with the migraines and pregnancy. I understand, and I’m glad your husband is there to provide you with some support. Hopefully, once you deliver, your migraines will calm down and allow you some peace. At least, if nothing else, you will have some additional medication options available. In the meantime, hang in there, and try to squeeze in as much rest as you can. Also, know that you are in my thoughts. I wish you peace and good health.

  6. You sound so like me except I’ve been at it for 43 years! Hang in there, you have much more at your disposal than I did 43 years ago when my migraines first showed up and I was told to take two aspirin and go to sleep. I have been through so many docs and so many treatments, I know more than most of the docs, and certainly most of the residents, although they try to show off in front of me and always fail miserably, and charge me $500 to do so. I am very picky about docs now, and am still looking for someone to work with. Keep good records, keep your chin up, this is a miserable disease, but as the late Whitney Houston said (look up the song on YouTube), every day is
    “Step by Step”. Take Care.

    • Tara, 43 years! I feel for you. My grandmother is in the same situation. I believe she has been battling this disease for more than 50! Luckily, the new triptans work for her. I hope you find a good doctor soon. – Sarah

  7. When the pain gets really bad I use good old fashion ice bags and put them either on my temples or the back of my head, where ever the pain is worse.. and try to stay completely still. Works pretty good. I also find Asprin works better than motrin or tylenol, in my case..

  8. Ive had migraines since 1968 and still have them! I throw up until I feel like I’m going to throw up my lungs! The headaches are not as bad as they used to be, but I still have almost daily headaches. No more throwing up, but some days I don’t go anywhere because I hurt too much. There is no doctor on planet earth that can help! I took pain meds for a long time and it actually made things worse so I quit those. Still getting headaches, but guess I’ll have to live the rest of my life this way. There’s still no doctor on earth that can cure this!

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