Monday, October 26, 2015

A few things I wish everybody knew about migraines

This past Friday, I ended up in bed with the worst migraine I'd had in a while.  I blame the rain that rolled through Texas at the end of last week; others of my migraine-prone friends and family members who live in this area were suffering too.

I went through my usual emotions of frustration and irritation. I hate missing a whole day because of a migraine.  I hate missing parts of days, too, which happens a lot more often.  But I'm lucky, after all--my husband is used to migraines because his mom had them for years; one of my daughters (so far) seems to have inherited the "migraine gene," and lots of my sisters and friends in the area are also among the millions of Americans who suffer from migraines.

Why am I lucky? It's not because misery loves company; most of us who have migraines wouldn't wish them on our worst enemies, let alone our siblings or children. No, I'm lucky because being surrounded by people who either get migraines themselves or are closely connected with people who do means that I don't have to spend a lot of time clearing up misunderstandings about migraines.

It occurred to me, though, on Friday, when I was lying in a dark room with ice in a kitchen towel feeling physical pain with each flash of lightening and the louder roars of thunder, that other migraine sufferers aren't that lucky.  For their sake, I'd like to share a few things that I wish everybody knew about migraines, in no particular order:

1. Migraines are not "a bad headache."  Everybody gets bad headaches sometimes. They're no fun, certainly.  But when someone equates migraines with "a bad headache" and further implies that the sufferer just needs a brisk walk or a hearty snack to be able to get back to normal, they really aren't helping the situation.  Here's what one website says about migraines:
Migraine is a complex condition with a wide variety of symptoms. For many people the main feature is a painful headache. Other symptoms include disturbed vision, sensitivity to light, sound and smells, feeling sick and vomiting. Migraines can be very frightening and may result in you having to lie still for several hours.
The symptoms will vary from person to person and individuals may have different symptoms during different attacks. Your attacks may differ in length and frequency. Migraines usually last from 4 to 72 hours and most people are free from symptoms between attacks. Migraines can have an enormous impact on your work, family and social lives.
2. Migraines are not all alike. You may know somebody who gets the kind of migraine where he or she (more sufferers are women, but I've known men who suffer terribly from them) must go to bed for 12 hours but is then fine, and who only gets these migraines once or twice a year, but that doesn't mean that someone else is exaggerating if he or she ends up in bed for three days or gets migraines weekly.  There is even a kind of migraine, the Status Migrainosus, which is a debilitating migraine that can last for weeks--the pain can occasionally be so bad that the person must be hospitalized.

3. The affects of a migraine can vary person to person and attack to attack.  For instance, I'm still catching up on emails etc. from last Friday because it wasn't a terribly good idea for me to spend time looking at a computer screen until today.  However, with my more ordinary, garden-variety migraines I can often spend a limited amount of time on the computer--so long as I'm sitting still and don't mind correcting tons of stupid spelling mistakes, because I often lose my ability to spell correctly when I'm in migraine mode.  Others I know have similar limits regarding what they can or can't do on any given day.

4.  Because of those limits, some people who suffer from migraines are sort of hesitant to make long-range plans or commitments, especially when these involve optional (as opposed to mandatory work-related, school-related, etc.) activities.  I personally tend to cringe when people ask me if I can join an activity a couple of weeks ahead, or sign up for a weekly event, because while I hate letting people down I also just don't know how I will feel tomorrow, let alone a week from today or a month from today or every Wednesday from now until next spring.  Many of us who deal with frequent migraines already feel like we are using all of our energy to do the things we have to do on a daily or weekly basis, so if we're not terribly enthusiastic about joining something, it doesn't mean we're antisocial or extremely introverted (well, it doesn't necessarily mean that).

5. People with migraines will draw the lines in different places when it comes to social activities, too.  I don't like to go to movie theaters, for instance, because the noise, flashing lights, and extreme temperatures are all inclined to be migraine triggers for me.  Other people may have to avoid certain kinds of stores or venues (for instance, those stores which carry lots of highly-scented products).  Again, though, because there are different kinds of migraines, there are different places that are problematic for some but fine for others.

6. In general, migraine triggers can be different for each person.  Yes, some triggers--like hormones or weather--can affect large numbers of migraine sufferers (though when it comes to weather, for example, some will suffer before a storm reaches the area, some during the storm, and some as it moves through and away--and some unlucky souls will be in pain the whole time). But other triggers may cause migraines in some people but not in others.  Food triggers can be especially hard to track down; one of mine is chocolate.  (Some doctors believe chocolate isn't actually a migraine trigger but that we women, being all emotional and whatnot, think it is.  The last time I ate chocolate it was by accident--there was cocoa in a sweet "french toast flavored" bread I had bought.  I didn't know the cocoa was there, and really enjoyed the bread, but had puzzlingly persistent migraines as long as the loaf was in the house.  It wasn't until one of the girls looked at the ingredients and realized that chocolate was a major ingredient that the headaches were explained--and they went away as soon as I stopped eating that bread.  But, you know, some doctors are quite sure that chocolate can't possibly trigger migraines.) Other foods that can trigger migraines include alcohol and foods that are rich in tyramine such as aged cheeses and certain meats.

7. I think the worst question migraine sufferers can get is, "But can't you take something for that?" Sure, there are lots of migraine medications on the market, ranging from over-the-counter drugs to prescription-only medicines to off-label use of drugs meant to treat different conditions. The problem is that migraines are frustratingly difficult to treat. Some people will be helped by a medicine and experience both real relief from pain and a lessening of frequency or duration of migraines and associated symptoms, but others--a lot of others--will not. One fairly common problem is that a medicine or treatment may help for a while, but then stop helping, and unfortunately in these cases the migraines sometimes become worse than they were before the treatment was tried. And if you are battling any other health conditions as well as migraines, some of the migraine medications may not be recommended for you.  Sometimes the answer to the "can't you take something" question is, "Yes, and I do take something, but it doesn't always help, and it's not helping today."

8. The bottom line here is that migraines are a frustrating and difficult reality for lots of people, but our lives are made a lot easier when we have people close to us who understand, and are patient with us on our bad days.  Like I said above, I'm lucky this way.  If you know someone who deals with this problem, I hope you are as understanding and patient as my family and friends are, too!


Acerbica said...

I was watching an ad for a Botox medicine that treats chronic migraines, and they stated that people who took a placebo had 7 fewer migraines per month, while people who took Botox had 9 fewer migraines per month. It seems like there is a high degree of placebo-efficacy, which suggests that for people in this study, a lot of their migraines (about half) were psychosomatic. Just thinking they were being treated made them feel better, which wouldn't be the case with many other conditions. You might have a slight placebo effect with other conditions/medications, but nothing so dramatic as this. Which makes me wonder--can we treat migraines better by keeping in mind how sensitive they may be to the placebo effect? (Could this be part of why meds work for a while and then don't work anymore?)

Anecdote: I had a friend with severe chronic migraines who went to a chiro in Chinatown. He cracked her neck and years later, she's never had another migraine. I kind of wonder if she had something being pinched in her neck that had been causing the migraines.

Susan Foley said...

About placebos. The placebo effect is "poorly understood," which means, we don't have a clue. That a placebo helps a substantial number of patients does NOT mean that the ailment is psychosomatic! Drug trials for drugs intended to treat terminal cancer show a placebo effect, for which controls are necessary! Surely terminal cancer is not psychosomatic.

Actually the mind/body connection is the mystery. We have no idea how to exploit this or to use it to produce healing, but it really is there.

David Sharples said...

Get checked for possible brain aneurysm. I know someone who did have one. Have a Cat scan or an MRI.

Red Cardigan said...

Thanks, David, but I was diagnosed with classic migraines at 20 (started having them at 16). Nothing in my medical history or symptoms suggests anything but typical "migraine with aura."