Headache Q&A

I can't fully express how valuable The Daily Headache has been to me--not only have I found good resources about treatments, but it is validating to know that I'm not alone in this struggle with Chronic Daily Headaches (the "official" term for what I have, even if I don't have a headache every day).

Last week, she posted some questions that a student is asking for a project, and I've decided to answer them here.

How long have you suffered and how much of your time is spent in pain?
While I've had headaches, migraines, and TMJ pain (which triggers headaches) since I was a teenager (and I'm now 35), I have never endured days and months of headaches non-stop until last October. About 9 days after I rode a rollercoaster, I spent over 2 1/2 months straight with a headache, relieved only temporarily with pain meds. While the intensity of the headaches fluxuates (anywhere from no pain to a 10, with an average of a 5 or 6 on the pain scale), I have headaches about 4-5 days a week. The headaches can start at any time of day, and typically I spend an entire day (or more) in pain before having a break.

What sort of drugs have you been on and what were the side effects? Are the side effects worth it?
For years, I used OTC meds, and Imitrex for headaches/migraines as needed. Because I'm sensitive to caffeine, we jokingly called my headache remedy an "excedrin cocktail"--1 excedrin, 1 tylenol, 1 aspirin--so that I could avoid the shakiness and insomnia from the excedrin. Imitrex would make me feel rather spacey, but it was better than how bad a migraine would make me feel.

With these headaches, though, Imitrex no longer worked, so I was switched to Zomig nasal spray. I definitely am out of commission with that (I would be very hesitant to even drive). But then again, I'm not going to be incredibly active with the pain of a migrain either. It's hard to tell if some of my symptoms are caused by the Zomig or my migraine--I do experience some muscle weakness on the side of my face/body during a bad migraine attack, plus some spaciness. One side effect I wish I could eliminate is the sore throat I get from the medicine trickling down the back of my throat from my nose. Still, small price to pay.

As for my other meds, I've been on a handful of other pain meds (which didn't work), Topamax (NEVER EVER AGAIN, not only did it not help my headaches, the side effects were very profound and scary), Darvocet/Percocet/Vicodin (they would help my headaches, but may have contributed to rebound headaches, and often made me nauseous, but it is worth it when I need a break from the pain) and muscle relaxants (which haven't helped either).

My current meds are Atacand (aside from some dizziness, I don't notice any side effects), Cataflam (hurts my stomach pretty bad, but taking mylanta and pepcid AC helps), and Ativan if the headaches are really bad (no side effects). I'm still unsure if the atacand is working. I haven't taken my zomig in almost 2 months, but I do still have migraines/headaches--it's just that the cataflam/ativan has taken zomig's place. There are some days even cat/at doesn't work, even with vicodin.

What might you give up to make your migraines go away?
I really don't know. I've given up quite a lot because of these headaches. I guess the only thing left would be to radically change my diet, but I don't feel that is the root of my headache issues. I mean, I know I'm risking a headache if I have a drink, but that's not a sure thing. I just don't want to give up anything else, I just want my life to get back to normal (as normal as it can be with my other chronic illnesses).

I know that more than likely, I've given up rollercoasters forever, and when you live near theme parks with some awesome coasters, that stinks. It's not the end of the world, but it still stinks.

Are your family and friends or coworkers understanding of your pain?
I think it's a mixed bag. My husband is incredibly supportive. My kids try to be quiet when I have a headache. But even they can't see when I hurt. They can "forget" about what I'm going through. And I don't mean that they don't care--it's just when you're the one with the pain inside your head, even if you can distract yourself for a while, you just don't forget that you are actually in pain.

I have a few friends who understand, but really, I think that many people just don't understand how crippling chronic headaches are. I'm sure they're thinking "Gee, take an aspirin and get over it!" So more often than not, I put a fake smile on my face and say I'm ok when someone asks.

Even though we could use the money, it's a mixed blessing that I don't work outside the home. I don't know how anyone with CDH manages to hold down a full-time job.

Finally, write anything you think is important. What is the most important thing you want to express about migraines?

I wish doctors would LISTEN and trust that their patients really do know their own bodies. I think that those doctors and their staff should have to go through sensitivity training to understand those of us with chronic pain. And if they don't have the time to speak with them instead of farming them out to voicemail when they call, or see patients in a timely manner (such as making them wait for months for appointments), then maybe they need to hire a few more damn doctors and staff. (No I'm not bitter that I still don't have an appt. with my neuro until Feb @@).

For the general public, I would like to beg people to stop dousing themselves with perfumes and colognes. It takes one whiff of the wrong smell to start my head pounding. I don't want to be trapped next to someone at a concert, church, or rehearsal when they smell like a cheap perfume counter. I just want to be able to enjoy myself and not have to suffer for 2 hours (and then for the rest of the evening since it can take 6 or more hours to get rid of a headache). A little moderation and consideration for people around them would be nice.

I think the last thing I want to say is that even after 10 years of the pain of CFS and FMS, these headaches feel more debilitating, after "only" 1 year. This has been one of the hardest things I've had to battle. The Headache Slayer is tired and would like to put down her weapons.