Katie's Blog of AWESOME

Letter to a Friend recently diagnosed with migraines

First off, I’m sorry. This sucks. Pain is never fun. That said, I’m here, in part to help you fight your brain. And the system.

Now…what do you need to know?

1. Get a neurologist. Talk to your family doctor and see who she recommends. Look up docs in your area on http://www.achenet.org/resources/healthcare_professional_search/ and other headache organization websites. (Note I use migraine and headache interchangeably in this post because I have both. And most docs who are interested in one are also in the other, etc.) Look these doctors and clinics up on the web to find out what their reputations are. Make sure that the neurologist you see is interested in headaches. Headaches are a frustrating type of illness and one that can be frustrating to treat because it’s easy to get discouraged because there’s no progress. A good doctor will see your brain as a puzzle that needs to be solved and will keep seeking solutions beyond the obvious.

2. Buy and read The Migraine Brain. I’ve read a lot of books about migraines and headaches in the past 6 years and this is by far the best. The author made me want to move to Boston so I could be a patient of hers. (And I have a pretty awesome treatment team here.)

3. Keep a migraine diary. These are a simple tool that can help doctors learn more about your symptoms, help you track things like medications and events, and just generally provide more data. (I’m a big fan of having data.) My neurology clinic provides checkbook sized booklets that hold 12 months of data in a calendar form.

Here’s a random month of mine. (The extensive circling is by my neurologist.)

Every day I’ve written a number, my pain level for that day. If it shifts dramatically, I draw an arrow to the new pain level. I record any non-standard meds I took, any procedures I had, and if the headache was odd, I’ll record what was different about it. This has been a wonderful tool, especially when working with two medical teams that have access to different slices of my data. (So this morning when my dentist wanted to know if a drug that I was taking was a culprit in my recent teeth grinding, we could look at dates, not guesstimate.)

4. Talk to people about it. Your migraines can’t be a copout for everything, but my coworkers no longer look at me strangely if I’m wearing sunglasses at my computer or lying under my desk in darkness.

5. Make use of your network. If you know people who have (or might have) been on the meds you are taking, ask them what they thought. Ask them about surprises. (My big one was the numbness in my legs when I took Topamax.) If your doctor is awesome, as mine are, they may be able to help you avoid nasty side effects or at least warn you about them. (Turns out increasing potassium via food, while on Topamax, helps reduce the numbness.)

6. Be patient. Again, it sucks, but most of the meds will take at least 1 month to kick in, and perhaps another 3 months to be able to evaluate. And don’t try to cheat the system by starting multiple medications at the same time, that just confuses things.

7. Recognize that there may be days when you just need to sleep it off. To lie in bed all day and wake up only to eat some food. Preferably ice cream and cookies.

8. Become a detective. Got a migraine today? What did you do differently yesterday? (And then either don’t do it or know the consequences.) I got migraines after several events with strobe lights. Putting it together I could track my migraines way back to middle school, not just prevent future ones. This has changed how I watch movies and means that sometimes I know I just have to cover my eyes and wait for the scene to be over. If I drink caffeine, I’ll pay tomorrow. And the next day. And maybe the next day. It takes a while to figure out these triggers, but paying attention to them helps.

9. Finally (for now at least) and most importantly, realize that you are in charge. Not that this is in your head. (Well, I guess it is, but it’s physiological, not psychological.) But that you are your own advocate. If you don’t like your doctor’s advice, talk to another doctor. If the side effects from the medication have you feeling like your brain is full of cotton balls, tell someone! My team has been more than willing to help me, but I have to ask for the help. And sometimes to demand it.

Here’s to hoping you don’t need anymore advice because your migraines vanish forever. And until then, hugs!

Katie

The Emergency Room

Sometimes my migraines get really bad. I know they’re bad because I start screaming and sobbing and trying to convince Ben that it would be a good idea for me to run into a wall, full speed, with my head.

In mid-January, I realized I had a horrible, nothing-will-fix-this migraine. At 9pm. Urgent care had closed, so I decided that I would just give myself an imitrex shot. 99% of the time, the imitrex shot makes me pass out. I have to inject myself while lying in bed. I need to have water next to me and I need to have gone to the bathroom. I cannot walk, I have a hard time talking, and breathing is difficult. Except this time. This was the 1%. The imitrex shot did nothing. 45 minutes later and the pain was worse and I was still awake. Usually I have narcotics for times like this. But I was out.

So after sobbing and having Ben distract me by telling me about his new motherboard and graphics card, I decided I had to go to the ER. Last time I’d gone was over 15 months earlier. I had spent over 3 hours waiting and then another 3+ hours being treated.

We went to the same ER. I was worried because it was sleeting and I figured there would be lots of car crashes. But we got there and were taken back within 45 minutes. Within 15 minutes after that I’d seen a nurse AND the doctor. The doctor listened carefully to my request (PLEASE DON’T GIVE ME Benedryl and Compazine in the IV. They give me the creepy crawlies). Then he ordered three drugs (including not compazine) and wanted to try putting me on high-flow oxygen. He’d read about this treatment recently and it wasn’t a hardship for me, so I didn’t complain.

The nurse tried to put in my IV and failed. Twice. So she called a tech, and the doctor asked her to start my oxygen ASAP before the IV went in. Then the doc came into check on me about every 10-15 minutes. Usually the doc gives orders and doesn’t appear again until well after the bag of saline has flowed into my veins. At one of the checks, I mentioned I needed to go to the bathroom and he had someone help me and also asked about my pain. Since it had drastically reduced, he said he’d discharge me. Immediately. Even though I was only 1/3 of the way through the saline drip.

I rejoiced. Door to door the trip took under 2.5 hours. And I could sleep afterwards. Three cheers for Dr. Robert B. Jones of Southdale ER! Thanks for making the usually unpleasant experience so much nicer.

Pain

Hello Again! I thought I’d start off January with a super upbeat post!

When you live in chronic pain, it changes everything. I think I’ve had 3-5 days in the past 1.5 years that have not involved a headache. My pain tolerance has gotten higher, but other things have changed too.

Last night I couldn’t sleep. Too much pain. I decided it was my headband (that tracks my brainwaves. I’m that cool), so I took it off. But that didn’t help. So then I decided it was because of my mouthguard, so I took that out. Still pain. I contemplated running into a wall, but decided against it. I tweeted at my brain that I was mad. Despite the pulsating pain behind my left eyeball, I still managed to get to sleep after about 1.5 hours of lying in the dark in pain.

Then my alarm went off this morning. When I wake up with pain, to me there is a clear solution. I should stay underneath the warm covers and go back to sleep. Or, if I’m hungry, I should get up, eat breakfast, and then huddle under the covers and fall back asleep. Back to the world where I only feel pain when I wake up.

I tried that today. I got up and ate and curled back up under the covers to contemplate whether I could handle a bus to campus and back, as well as 2.5 hours of class. I decided to tough it out. I showered (sometimes that brings relief, but not today). And headed out. The pulsing behind my eye had moved up to halfway between my ear and my eye. My right lobe was also chiming in once in a while, worried about being left out.

Now, as I sit hear writing, I am in pain. And I will go home and lie down and it will get a bit better, but I know that I’ll struggle to sleep again tonight. And that, most likely, I’ll wake up tomorrow in pain…again.

What do I do? Hope the pain decreases instead of increases. Hope that my doctors have new plans for me next week. Hope that I have some good distractions (B, music, movies, tv, puzzles, design work). Hope ’til I can’t hope any more and then wake up again tomorrow.