What My Migraines Have Cost Me (So Far)

I vividly remember the first time I learned I had a migraine. I was in my early 20s and had gone in with what I thought was a sinus headache. I had felt terrible for a few days, and figured I had a sinus infection. After spending a few minutes with me, my physician told me he had just received a new drug and asked me if I was willing to try it. I was. He gave me an injection, left me to lie down in a darkened exam room, and 20 minutes later the pain that had been throbbing behind my life eye and radiating through my head was gone. It was then I he told me what was wrong. The new drug he used was for migraines, and that’s what I had.

Since then I have dealt with migraines off and on (a lot of on) for decades. I feel incredibly fortunate that the medication that worked for me then, Imitrex, still works now, and usually provides relief. But not always. There have been periods of time when they were much worse and nothing seemed to relieve them. They went away when I was pregnant but came back with a vengeance after, and dealing with both migraines and the sleep deprivation that came with having a young child was often overwhelming. I remember one stretch where I suffered daily for almost a month.

My Treatment Costs

As a result, I have tried lots of different remedies (conventional and not-so conventional) in hopes that something will work, and looking back, most of my spending has been on things that did not seem to help or work. Here are a few of the things I’ve tried, along with my best recollection of the costs:

Botox: ($1,250)
A mask that flashes red lights in specific patterns ($90)
Acupuncture (not covered by insurance — $750)
A headband that delivers electrical impulses through the forehead ($350 + electrodes $25/3 pack)
Lots of chiropractic visits at $25 to $35 a pop (total unknown)
Various supplements ($500+)
MRI ($125 after insurance)
Three ER visits ($2,500+ due to high deductibles)

That’s a grand total of at least $5,600, if you’re counting. I’ve also tried special diets, a nasal pepper spray (only once!), and assorted other remedies. I once booked a session with a Russian healer who was visiting the U.S. (a friend raved about him) but I got lost trying to find the location and saved the $150 he would have charged.

My standby medication is now available in generic form and with health insurance I only pay $10 for 18 pills. But there was a time when it wasn’t so affordable and a single dose cost more than $20. When you’re getting as many migraines as I have had at certain times in my life, it can add up quickly. One of my insurers limited me to six pills a month (too bad my body didn’t know the limit!) so I resorted to ordering the extras from Canada where they were somewhat cheaper but still not inexpensive. I am sure I made some of them worse by waiting to take my medicine, hoping they would somehow magically disappear.

Again, I feel very fortunate that I respond to medication and am able to work, even on days when I get one. Plus, I get health insurance through my employer. I know many people are not so lucky. According to the Migraine Research Foundation, about 36 million Americans suffer from migraines and “American employers lose more than $13 billion each year as a result of 113 million lost work days due to headache or migraine.”

When I was self-employed, and before the Affordable Care Act restricted health insurers from tying coverage to pre-existing conditions, health insurance was much harder to get. I remember one insurer saying they would charge me $500 more per month due to my medical history (I’m otherwise quite healthy) — and would then exclude my migraines from coverage.

Making Money From Migraines?

On the other hand, I have participated in two clinical trials and those pay, rather than cost money. The first was for a new drug delivery system for a medication I have already taken. I was paid $50 a visit. For me, it wasn’t so much about the money or the medication. After I learned it wasn’t a new miracle drug I’d be trying, I agreed to participate because the new technology sounded like it could help children and others who can’t take pills. (The Migraine Research Foundation says 10% of school-age children suffer from migraine!)

I am now in another trial involving a medication that has been getting rave reviews from previous study participants. Even if it turns out to be as wonderful as it sounds, it may be years before it is on the market, and who knows how much it will cost.

I am thankful for the medical professionals and medication that have helped me deal with this condition. But at the same time, I truly feel for those who end up going into debt to pay for their treatments. I can understand their desperation. There were times when I would have paid any amount of money to just make them go away for good, and would have gladly gone into just about any amount of debt to do so. (I do remember charging the botox treatment on a credit card, and knowing there was a good chance I was throwing my money away, but going for it anyway.) Without good insurance — and even sometimes with it — medical bills can mount and wind up in collections (here’s a collections crash course if they do) and even lead to bankruptcy. Chronic pain can cloud our financial decision making, creating even more stress in the long run.