What should I ask my neurologist about these migraines?
March 25, 2012 2:04 PM   Subscribe

Tomorrow I will be seeing a neurologist about my migraines. What do I need to know/ask/expect?

I've recently been diagnosed by my PCP as having chronic recurrent migraines. This last episode has been going on since mid-January, and has included one trip to the ER. I have tried everything available OTC, as well as fioricet, imitrex, maxalt, and the percocet the ER sent me home with. I've had a CT scan that came back normal. Food and environmental triggers have been ruled out. And I can't take any of the anti-convulsants normally used to prevent migraines.

I have a basic set of questions, such as why does the pain return so quickly, is it normal for episodes to last this long, etc.... But what else do I need to know? What will they do for me other than just move on to the next triptan?
posted by unlucky.lisp to Health & Fitness (11 answers total) 5 users marked this as a favorite

I'm sorry you're having such trouble with your migraines! They can be tough to get on top of, and everyone is a little different with how they respond to the usual medications. People who are prone to headaches can also get "mixed" types of headaches (musculoskeletal AND migrainous, for example) which confuse the picture further when it comes to treating it effectively.

There are other medications generally used as migraine prophylactics (as oppose to the migraine abortives you've listed - meant to stop the migraines once they start, not try to cut down on the number of migraines total.) Not all of the migraine prophylactics are anticonvulsants; there are also beta-blockers and so on. Also, if this has been going on since January, it may take a while to improve, even if you DO find the right medication for you (think of it like an injury that has to heal, if you will). There are also other, non-medication treatments for chronic migraines of a certain type, such as Botox injections into the scalp. But only your neurologist can sort out what's been tried out, or tried out EFFECTIVELY (not always the same thing), and what would be appropriate for you to try next based on your specific migraine type and what other symptoms bother you the most besides the pain (such as if you get really nauseated or not).

Generally, opioids (such as percocet, vicodin, etc) and barbiturates are a bad idea to be using regularly for migraines, as they've found that people rebound like crazy with even worse headaches as a result, so you're right that it's important to find a better alternative even if percocet HAD worked.

So, uh, what this is all a long-winded manner of saying is that you should try not to lose hope even though you've tried a number of medicines and they haven't worked - you've so far just scratched the surface of treatments, and there's still lots of things out there that might help! In the meantime, making sure you stay really well-hydrated, don't skip meals, get enough sleep (as well as you can with the headache) is important in priming your body to best handle or shake off these migraines.
posted by vetala at 2:31 PM on March 25, 2012

I went to a neurologist after having a sudden onset of an unusual type of migraine. What I remember from the experience was having my reflexes tested and having to do odd things to demonstrate that my coordination was not impaired (reminiscent of rubbing your tummy and patting your head at the same time - but different). The neurologist asked me some questions, including about my periods, which embarrassed me (I was 14 at the time). I was referred for an MRI scan, which came back normal (or, at least, it didn't show anything likely to be causing the migraines).

This was in 1993 and I was a kid at the time, so ymmv: technology may have changed and I was certainly more of a passenger in the process than I would be as an adult.

Good luck getting some answers and a workable solution!
posted by Cheese Monster at 2:38 PM on March 25, 2012

Common migraine opioids are percocet and vicodin, as mentioned above, and most barbiturates take the form of a med called Fioricet (which also contains caffeine and acetaminophen). However, most opioid-using migraineurs take it as an ingredient--usually in the form of codeine--mixed in with their Fioricet, for double the pleasure and double the fun.

These are last-ditch remedies only! The rebound migraines caused by them are generally more severe than average. Opioid-induced rebounders are particularly gruesome in my case.

If, after years of trial-and-error, you're still having migraines--well, you may need to take the barbiturate/opioid route. Most don't. You might. But don't jump in until you've exhausted everything else.

I've also heard through the grapevine that Indica strains of cannabis are particularly effective as analgesics. If you can get a medical marijuana card in your location, think about this option as well.
posted by Gordion Knott at 3:35 PM on March 25, 2012

As vetala describes, there are a lot of different classes of medicines for 1) immediate relief and 2) prophylactics, taken daily to reduce the frequency of migraines - so you still have a lot of options left.

There's a lot of individual variation in how effective each medicine is, and especially for the preventative medicines, how well each medicine is tolerated (i.e. how bad any side effects are). You may have to try several medicines from different classes before you hit on something that works. When you go to the doctor, bring in a list of the medicines you've already tried - the doctor will probably want to prescribe a medicine of a different "category" (e.g. beta-blockers vs antidepressants vs anti-seizure) if you've already tried a medicine in that category and it was not effective.

For a repeating daily migraine you might hear the term "status migrainosis". IANAD, IANYD, but my understanding is that this cycle can be particularly difficult to break. Be patient, try to avoid the medicines that can cause rebound headaches, get exercise, avoid caffeine and stress as much as possible, and keep a regular daily schedule.

As it may require multiple visits to the neurologist to resolve your problem, you are going to want a doctor who is responsive and with whom you feel comfortable - get recommendations from friends and the online community.

The doctor will probably ask about triggers. It could be helpful to keep daily notes on your migraines - the time they begin and anything that might have triggered them - e.g. a certain type of activity (like working in front of the computer, listening to music), a certain food or beverage, time of your menstrual cycle if you're female, poor sleep, etc.
posted by scrambles at 3:35 PM on March 25, 2012

IANAD. If I were you, one thing I would investigate is your sleep cycle. Sleep cycles have been very strongly linked to headache disorders and migraines [warning: PDF]. Investigating your sleep cycle can be complicated, but if you've been suffering since mid-January(!!), I would absolutely spend the effort to get at this - as the link from the National Headache Foundation says "sleep has a therapeutic effect on migraine attacks". This is quite complicated, as issues of REM onset, light levels and circadian rhythm are involved. In any case, this is a very fruitful avenue of investigation, quite apart from any medication which can mess with your circadian and sleep patterns and subsequently not really get at the basis of your migraine.
posted by VikingSword at 3:57 PM on March 25, 2012

I'm not sure if this is what you mean, but something to ask the doctor is what sort of criteria is there going to be for a 'successful' treatment? Like, how will you know it's working or not? How long should you wait to see signs of success? Basically, all the details of what you should expect. Based on how severe your headaches are right now, I would also want to know what you should do the next time a severe headache sets in (since going to the ER for percocet isn't ideal).

As for 'what else is there in prevention', I would second the sleep cycle as a trigger, just because I'm biased because it is relevant to my own headaches. I also can get 'triggered' by exercising in the cold or messing with my sinuses by going too deep in the pool. I kept a diary for a few months just writing what I was doing the days I got a headache to figure that out.

And as for 'what else is there in treatment', I also wouldn't give up on trying allllll the triptans. I started on Imitrex and it worked great, and then my insurance decided that I should use Maxalt instead (charging $10 for 9 Maxalt and $50 for 9 Imitrex). Maxalt didn't work as well, so I'm really glad I didn't get started on that and decide that triptans don't work. I have a friend though who is the opposite. So in summary, the triptans seem somewhat inconsistent.
posted by Tandem Affinity at 4:22 PM on March 25, 2012 [1 favorite]

I began to see a neurologist in October after suffering constant chronic headaches for many years. The neurologist told me that there is a wide variety of medications that help headache, that it is unpredictable which ones will help any particular patient, and that it is therefore generally a trial-and-error process to find effective ones. The options include off-label uses of meds primarily prescribed for other conditions; for instance, I have had incredible results taking Effexor, which is an anti-depressant.

He said that our goals would be, first, to try to interrupt the cycle of daily headache, and, second, to find medications that would act to lower my overall incidence of pain--maintenance meds. In addition, we looked for "rescue meds" that were effective for me in interrupting flare-ups into more severe pain.

In addition, we'd be looking for triggers and lifestyle factors. This has been easier for me as my daily load of pain has decreased--for instance, I became able to recognize the early symptoms of a flare-up before I ended up with a full-blown bad headache, and can often head it off with my rescue meds.

I also had a whole buttload of tests at that time, including a bunch of bloodwork and a CT scan. Eventually I had an MRI as well. There's a lot of ruling-out of this and that involved.

He sent me home from my first appointment with a stack of literature to read as well.

It was indeed a process of trial and error over about 4 months, including one two-week round on a med that made things dramatically worse. During this time, I saw the neurologist about every three weeks to check in on how things were working. At each appointment, I fill out a form about my meds, whether I've been taking them as directed, whether they are effective, and, if there are side effects, how tolerable I find them. Usually we would change or adjust my meds. At this point, when I have both effective maintenance meds and useful rescue meds, I am down to seeing him every two months unless I have problems I need to address.

He does have me keep a headache log, including the severity of headaches, how long they last, any triggers I notice (allergy season has made things worse the last week or so, for instance), what I tried, and whether it helped. This has been tremendously helpful.

For me, right now, the solution looks like taking three daily meds as well as a rescue med that is known not to cause rebound headaches (since I sometimes have flare-ups that last a week or more). I have had stretches of being almost pain-free, and my headache log from last month versus October, when I started keeping it, shows a dramatic improvement.

One thing that was very heartening from the beginning is that symptoms that baffled every doctor I had over the years were perfectly familiar and intelligible to the neurologist, and his knowledge of medication options is encyclopedic. I have had a headache (not headaches, but one single headache that waxes and wanes) since the early 1990s, and the last six months with this headache specialist have brought a level of relief I had long since given up on ever experiencing.

You don't say whether you are seeing a neurologist who specializes in the treatment of headache. One thing I would warn you about is that doctors can be negative and judgmental toward headache patients--headache can be difficult to treat, with multiple interacting causes, and frustrated doctors can take that out on their patients. My current neurologist is incredibly sympathetic, but I've dealt with doctors who reached the end of their expertise and then gave up on me before. So be persistent and watch out for signs that this neurologist might be either less than fully-informed about treatment options, or less than sympathetic to what his or her patients are dealing with. Be prepared to be persistent and to try to maintain optimism despite setbacks.

Good luck.
posted by not that girl at 4:40 PM on March 25, 2012 [2 favorites]

You can also try beta-blockers to treat migraines. I had reasonable success with them except they trigger my asthma and neither of my neurologists will prescribe it for me anymore. Luckily I do really well with Imitrex - I'm so sorry you haven't had any success with it! If you haven't already, you might want to try all preparations/delivery methods of it (tablets, nasal spray, injections) in case one works for you where the others didn't.
posted by elizardbits at 5:09 PM on March 25, 2012

I thought I was getting migraines, but it turned out I was getting cluster headaches - sounds a bit similar to what you described (they'd come on frequently, for long periods of time....)....but the pain is supposedly different from migraines, so I'm not sure IF that's what you have....I agree with the not that girl - see if your doctor knows about different types of headaches. Some are willing to dismiss all headaches as "migraines". The first doctor I went to for my headaches simply told me to take 3 advil, every three hours. Like, every day. Then I was diagnosed with anxiety....but turns out taking that much advil can cause ACTUAL chest pains, and I wasn't imagining it.....I love my current doctor ....XD

ANYway, I'm chiming in with the beta-blockers. LOVED them. (unfortunately had to go off temporarily while undergoing allergy treatment...on topiramate and amytriptiline now...with caffeine supplements....)

But I had to bounce through a couple prescription meds before I found the right set for me. I'm also agreeing with those that say, don't give up - the current meds you've tried may not work, but don't give up. In the beginning, I really just wanted to jam an ice pick through my skull and be done with it.....provided I could see clearly long enough to lay hands on an ice pick.... but now....I really can't remember the last time I've had a bad headache.
posted by Lt. Bunny Wigglesworth at 5:53 PM on March 25, 2012

I saw a neurologist 6 months ago for migraine and the visit started with him taking a full history, followed by what I assume is a standard neurological work up (reflexes, touch your nose/touch my finger, stand on one foot, etc, etc, etc), then finished with a discussion on medications.

I've had 2 years of nearly daily migraines and so far nothing has really helped, but the neurologist was fantastic because for the first time someone took my migraines seriously and actually acknowledged how devastating they are. That has made a huge difference to me, particularly when faced with the cynics.
posted by sarahw at 8:24 PM on March 25, 2012 [1 favorite]

Response by poster: thank you all, this was so helpful! the neurologist was fantastic, and did everything you said he would. it was so great to know what to expect. thank you again!
posted by unlucky.lisp at 9:19 PM on March 26, 2012

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