I had an odd appointment with my neurologist yesterday, odd enough that I might be looking for a new doctor. Up until this time, I've liked Dr. R. She took over my old neurologist's practice, which I think he may have left just to be rid of me. I left every appointment thinking that he just didn't know what to make of me. Anyway, Dr. R is just a few years older than I, she has three kids, and she gets migraines. Those last two items are particularly important to me - she knows what it's like to be suffering from a migraine AND running after three kids.
Last year, after Campbell was born, Dr. R put me on a blood pressure medicine because it has proved effective in preventing migraines. Unfortunately, like every other preventative medicine that doctors have put me on, the stuff made me feel awful - dizzy, lightheaded, spacey. I gave it 30 days and then stopped taking it. Dr. R looked pretty unhappy yesterday when I told her why I'd stopped taking the medication and why I didn't want to try any other preventive drugs. I have yet to take one that doesn't make me feel worse while I'm on it.
I went for yesterday's appointment because back in December I had tried to get my pain pill prescription refilled, and Dr. R had denied the refill. When I called to find out why, Dr. R had already left for Christmas vacation. I'm ashamed to admit that I got a little hysterical with the nurse about it all. So she talked to one of the other neurologists, who approved a refill for me. But the nurse said I had to come in for an appointment.
Dr. R completely surprised me yesterday by basically going against what she and every other neurologist I've seen has said about treating migraines. First, she told me that I can only take Imitrex one day out of seven. When I asked what to do if I got two migraines in seven days, she told me that I should take three Advil liquid gel caplets. Her reasoning was that taking too many Imitrex in a seven-day period can lead to rebound migraines. When I asked what I should do for pain when the Imitrex didn't work, she again said Advil. Dr. R claims that taking the pain pills more than once every six months or so leads to rebound migraines.
Then she asked me how much caffeine I drink. I proudly told her only half a cup of coffee a day, only to have her frown and say that I had to give it up all together, again because of the rebound effect. Migraines cause the blood vessels in your head to swell, and caffeine makes them shrink. According to Dr. R, every time you drink caffeine, you shrink your blood vessels, but then they open right back up again when the caffeine wears off, leaving you more prone to migraines.
I'm just not sure I buy all this. My first neurologist, whom I loved, told me not to take Advil when I had a migraine because it had blood thinning properties (the same reason you can't take it when you're pregnant), which can actually make the pain worse. My OB-GYN, when I was pregnant with Ella and couldn't take Imitrex, said to drink a Coke when I got a migraine. So now I have a doctor telling me absolutely not to drink caffeine and not to take pain pills and not to use Imitrex more than once a week.
Basically, I left the doctor's office rather stunned and not sure what to do. I almost want to schedule another appointment with her so that I can ask her some follow-up questions, like:
1. Do you follow this protocol yourself?
2. Where and when did you learn about all this? Did you just attend a migraine conference?
3. What do I do if I give up caffeine and pain pills and the Advil doesn't work and I still get migraines?
4. Can I see another doctor please?
As of right now, I'm willing to give the no caffeine thing a try. It'll be a rough day or two as I get it out of my system, but I don't drink enough for withdrawal to be a big deal. I was going to start this morning, but I was scheduled to be helping parent in Lily's preschool class, and I couldn't face the thought of spending five hours with 12 pre-k kids without caffeine. So I guess tomorrow's the day.
But I still think I'm going to look around for a second opinion.
8 comments:
First, you give up Target. Now, caffeine? That's a lot to ask of one person in one week.
I hope the caffeine-free suggestion works. And I hope you find a 2nd opinion too.
The first two days of giving up caffeine are like meeting the devil in person. I am scared for you. Especially if you are around the shrill of small children.
Maybe you should stay in bed. At least have a decoy cup. Pound the caffeine free green tea. Just a hot cup in the hand helps sometimes.
P.S. The Professor went to a neurologist because he wangs his head into walls all the time. A side blood test revealed that he has arsenic in his blood. Neurologists are strange people.
Neurologists have no idea what to do with migraine patients, so they just run experiments with us putting us on various medicines until we give up and stop seeking treatment or go to someone else.
I swear that no two people get migraines for the same reasons, and no two people have exactly the same cure work for them.
It would be interesting to find out what she is basing this on...maybe there's new data out there. I think you should look into getting more info from her before you switch and/or follow her suggestions.
Heidi
Advil has never touched a migraine of mine. i might as well be taking JELLY BEANS. I'd get a second opinion or at least call her and ask her where she got that information.
IMHO, you should do both. Go back to see her AND get a second opinion. It's pretty much impossible to have too much information.
One of the things I've done is food/activity tracking. (You may have tried this; I haven't read your archives.) I logged bedtimes, waking up times (for sunlight/lack of light references), food, drink, and excercise (or lack thereof). It's a total pain, but maybe after a few months you'll have some idea of what your triggers are.
1. I have to not have caffeine due to a heart ailment. It's a bitch to get off of, but once it's out, you won't miss it. Much.
2. I have always heard of caffeine as a treatment FOR migraine; in fact, I think the migraine formula for excedrin has caffeine in it. I have also never had any of my fellow migraine sufferers who are lucky enough to be able to take Imitrex (thanks again, heart ailment) ever not be able to take more than 1 in 7 days.
3. What does Dr. Google say about her advice? I'd still go for a second opinion, because this all seems strange, but maybe if there are some recent studies out showing support for this protocol, that would be useful information to give a new doctor. Has the protocol you've been using worked?
4. On the preventive stuff, if you are talking about either a beta or calcium blocker, it really takes a while for your body to adjust to being on them - like 8 weeks or more. Something I found to be an issue is that I react, um, strongly, for lack of a better word, to low doses of medication, so when a new doctor is dosing me, they usually end up overdosing me because I am so sensitive to the meds I don't really need the "therapeutic" dose they are trying to start me with. You may want to see if your doctor will allow you to start with the barest minimum of dosage, say half the lowest available dose, and ramp up if necessary if the little bit doesn't do the trick. For the aforementioned heart ailment I take a beta blocker, and I take a quarter of the therapeutic dose once a day. Several doctors would say that isn't enough to do anything at all, but it's hard for them to argue when I don't take it and my heart rate is 115 and I do take a tiny bit and it is 85 with no other changes to account for the difference.
Just a bunch of assvice for thought. Migraines suck. Huge.
First of all, where have I BEEN?! How did I miss all these posts? I could have sworn I'd stopped by - I'm so sorry!!!
Second, LOVE all the knitty goodness below! You did a ton!
Third, I am so confused about this migraine/caffeine thing. I'd always heard caffeine helps; once, when out of Excedrin Migraine (which has caffeine) I literally ATE COFFEE (right out of the bag!) in order to stave off one that was starting up. Is she saying that regular use of caffeine causes them?
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