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.

Botox, Baby!

I haven’t written about my personal migraines lately, but they’ve been getting worse. Bad enough for me to decide to try out Botox for Migraines. I was scared silly about this. I knew that most people had significant pain with the Botox and my neurologist mentioned when she had it she heard crunching. That alone made me terrified. At the same time though, I am sick and tired of migraines and ready to try something new.

So at my August appointment, I talked to my neurologist about moving towards Botox. She set the wheels in motion for me to get it done. First, my insurance had to approve it. My insurance says the following about Botox for migraines:

“Botox requires a prior authorization but will generally be approved when the following criteria are met:

1. Chronic migraine (defined as >= 15 headache days/month lasting >=4 hours a day) despite standard treatment including three or more preventive treatments (e.g., amitriptyline, topamax, verapamil and betablockers) or medical contraindications to one or more of these therapies.

2. Prescribing by a headache specialist who has received training in the injection technique.”

I have been on three (now four) preventative treatments. None of them have done much. So I figured approval would be no problem. FALSE. It took over 6 weeks for my insurance to approve me for treatment. But they did on October 7 and notified me (and my doctor) on October 13. I immediate called the “neurotoxin scheduling line” to schedule and they were able to get me in on October 18 (instead of the 3 to 4 months I’d been told to expect).

So I started reading. And I became even more fearful. All the forum postings I read were apparently from people who’d had horrible experiences. The side effects seemed scarier than normal. (See http://www.allergan.com/assets/pdf/botox_pi.pdf) And I didn’t understand how it worked.

Botox for migraines helps to weaken or paralyze the hyper activated muscles by suppressing the release of acetylcholine, which mainly causes the transmission of nerve impulses at synapses and myoneural. This treatment can also be used for reducing the pain associated with the cervical dystonia, achalasia and rectal fissures. Botox is usually injected directly into the affected muscles.

There are different theories to explain the working of the Botox for the elimination of migraine headaches. According to one theory, as tension and spasms are the main causes of migraines, Botox eliminate the headaches by eliminating the muscle tension. It is also believed that Botox reduces the headaches by inhibiting the transmission of nerve cells. According to this theory headache is caused due to the increased amount of signals send by the nerves.”

Article Source: http://EzineArticles.com/341913

AND REMEMBER THAT THIS IS A NEUROTOXIN. That in other forms KILLS PEOPLE. BEING INJECTED INTO MY HEAD. OMG! THE TERROR. Seriously. I was freaking out. So I made Ben come with me. (Plus it was in the uber-burbs, so I had to take his car or he had to take it!)

I met with a very nice doctor (not my normal doc, she doesn’t do botox injections) and his medical student from UMN. They talked to me, having already reviewed my files, and looked over my headache diary. The fact that I’d never had a single day in the past year that was pain-free without medication was almost shocking to them. They said that it sounded like I had little to lose and lots to gain. Then they examined me, testing how well my head moved, where I was tense and confirming where my headaches were. (My headaches are on both sides of my frontal lobe, btw.)

Then they went to talk and I went to the actual doctorish room (instead of an office with a zombie book on the desk). Then they started with the shots. I actually had to lie down because I’m too tall (albeit NOT EVEN 5’11”!!!). Then he took his gloved hands and started injecting me.

Here’s where I got shots.

From the front. I got 7 shots.

Front

From my right: two shots.

Right

From my left: two shots.

Left

He chose these locations based on the stiffness and soreness in my head. He felt that my neck wasn’t tense enough at this point to inject it. That’s something we’d consider a second time if this doesn’t work very well.

It hurt very little. Less than my flu shot last week. (Although the doc kept dabbing something off my face. Blood? I had no sounds that were gross or anything.

I won’t see the effects for another 1-8 days, but I’m feeling better this afternoon than I have in a few weeks. (This morning was miserable, but…) It’s supposed to last for about 3 months. If I get 1/3 fewer headaches for 3 months, it’s worth it to me. It was definitely an experience though. I’ll keep you updated!

Oh, and PS. My forehead is already less wrinkley 😉 (My doc promised I wouldn’t look like Joan Rivers though, thank goodness!)

Migraines and Politics

(Written in late July)

I’ve been pondering a news cycle the last few days. The story is about Michelle Bachmann’s migraines. If you haven’t read the stories, the original one that I read is here and a follow-up is here.

The gist of the story is that apparently Michelle Bachmann has migraines. She and her doctor say they’re under control, but she’s had to be hospitalized for them before and people are concerned that she won’t be able to do the job of president because of the migraines.

Then on today’s flight I read an oped in the Times. (Yay for Economy Comfort and free NYTimes!)

The op-ed is by a migraineur and she talks about the fact that even when migraines are under control, they are never completely under your control, due to the very nature of migraines. She also is concerned that the preventative medications that Bachmann uses are never named, likely because of the fact that most of the meds are generally used for mental health. So there’s also a problem with stigmas.

So this for me isn’t about Bachmann. I’m not going to talk about her politics here. But I think that this is an interesting issue, for multiple reasons.

First, obviously I have personal interest in migraines.

Second, because migraines disproportionately affect women and women haven’t been proportionately represented in US politics, I think this is a unique issue.

Third, the tie between mental health and migraines is important. Both in terms of finding triggers and in terms of pharmaceuticals. But because mental health is still a huge stigma in the US, especially for women (as it signifies weakness), this is a big problem.

Fourth, while Bachmann is getting treatment, most people aren’t. That’s a problem. And even if people do want treatment, it’s expensive and incredibly difficult.

Finally, the fact that migraines are ever changing, ever evolving, and different for everyone affects both diagnosis and treatment.

So the story really isn’t Michelle Bachmann. It’s about how people can cope with migraines. And why they choose to. (I hadn’t mentioned that part before, but I’m pretty sure running for President, let alone winning, would set my migraines on HIGH ALERT.) But the story is only out there because there’s a public face. And it’s a polarizing face.

Migraines aren’t sexy. They won’t (generally) kill you. But they’re there and they’re normal and there is help. But you still have to take care of yourself as well.

Music for Migraines

I’m writing this on the train from Hamburg to Mannheim. I can’t take any migraine medicine, but I really wish I could. If I could write my brain an email right now it would go something like this: “Dear brain, I HATE YOU. DIE! Love, Katie” (Love because I’m polite and I don’t really want my brain to die. In fact, I promised Paul last night that I would wear a bike helmet – not that I ever don’t – at least until I finished my doctorate. Them brainz must stay intact. Then zombies can eat them. They will probably be yummier after all the knowledge.)

Anyways, one of my magical non-medication solutions for migraines is music. I thought I’d written about this before, but I can’t find any record of it. So I write it again.

Last night, I was at a fantastic King’s Singers concert. It was in Meldorf, Germany and was at the Cathedral or Dom. It was a HUGE deal, locally. The concert programme was called Pange Lingua and was centered around Gregorian chants and then accompanying music by Bruckner, Duruflé, Gesualdo, and de Victoria. I forget how much I love hearing concerts like that, in the setting they were meant to be heard in.

wpid-IMG_0709-2011-07-30-20-005.jpg

And this picture is just for my mom. Because it was specially requested 🙂 Although it’s a terrible shot. Sorry mom!

wpid-IMG_0718-2011-07-30-20-004.jpg

But that’s not exactly why I’m writing. Although it is in part. Because some of the music, as it was sung, all I could think was “I need to add this to my migraine mix.” Yes, I have a migraine playlist. Right now it’s pretty boring. (In it’s lack of diversity, that is.) Currently it consists of the entire “The Golden Age – Siglo de Oro” album of Spanish Renaissance music from the King’s Singers. The idea behind this music is that it has to be very interesting musically: this almost always means polyphonic choral music. In addition, it should be fairly steady dynamically and also in terms of range. If it is too loud or high, it won’t work in my mix. This generally means that King’s Singers music comes out on top in my mixes.

The music has a calming influence on me and is especially good if I am high strung or needing to sleep. On a day like today, it actually doesn’t work very well. There’s too much external noise and commotion. Today, I’m just putting my ipod on shuffle and when a song starts playing that won’t work, I immediately press next.

Neurologists rock! (Or mine do…)

I promised you another migraine update after I saw my neurologist, which I did yesterday. My brains aren’t behaving as they should (more here) and so we talked about medications and possible solutions. These are pretty much what we always talk about. I also brought her my new headache calendar.

Her first remark? “Wow. You get a headache everyday. We need to fix that.” Yes. Yes we do. But how? First, we’re upping my dose of zonegran to a level that’s more consistant with stopping migraines. That should kick in in about 3 – 5 weeks. Next, she asked me about jaw and neck pain. Apparently if someone has headaches everyday, they usually have jaw or neck pain. I mentioned that I have a very tight neck, which isn’t painful per se, and that I’ve been having some weird jaw stuff lately. Many people, when they’re getting a migraine, get an aura. This is a visual disturbance that signifies that a migraine is coming. Other than a handful of times, I don’t get these. Instead, recently with bad migraines, I’ve been getting aching jaw pain. Just a bit, but enough to let me know I need to get some meds in me and go to sleep before the pain kicks in.
So these things made her suspicious and she started doing a bit of an exam. It was kindof weird, because usually neurologists don’t touch you, but she was having me move my head around, feeling my jaw, and feeling my shoulders. The result? My neck movement is slightly limited due to tight muscles. My jaw freaks out when I fully open my mouth (it audibly clicks into place and shifts around and is generally weird). And then she felt my shoulders. Apparently my traps are so tight that my left one feels like it has an egg in it. A HUGE ball of muscle mayham. So all this combined with something my dentist said and my posture, means two things: intense physical therapy with someone who specializes in headaches as well as myofascial therapy (2 times a week for six weeks!) and an appointment with the UMN Oralfacial Pain Clinic.
The final part of our plan is figuring out what I’ll do if I have a migraine that my normal meds (imitrex or relpax) can’t beat. If I get one during business hours, my neurology office has an “infusion center” where I could go to get medication that is approved by my doctor. This would let me avoid the ER and the random (yet excellent) treatment in the urgent care. And since they’re used to treating migraines, they know what they’re doing. BUT if the migraine strikes outside of business hours, I have a percocet prescription to take to try and bust the migraine up.
So…that’s the current plan. I see the neurologist again in mid-December. (Well, that is the Dr. neurologist. This was the CNP neurologist, who is AWESOME as well.) Hopefully I’ll have made progress by then.

Health Insurance

Yesterday I got a notice that my health insurance was cancelled retroactively back to September 1. After many tears, I sent an email to clarify and learned that it was nothing that was my fault, but rather the people who are supposed to pay my premium hadn’t paid it. Another few emails and it’s theoretically being taken care of. But that’s not why I’m writing.

I had a horrible migraine that was getting worse by the minute and all I could think of was, there’s no where I can go for help. I can’t afford anything. Already, since Sept 1, my insurance company has been billed more than 25% of my annual income. They probably only paid half that, but still, for me that’s a huge sum of money. (I don’t earn much, but I’ve seen a lot of docs and gotten a lot of meds in the past 2 months.) So while I’d normally go to the urgent care, I couldn’t. I could’ve also gotten a refill of a prescription that might have helped with the migraine, but I worried about the $300 price tag. It turned the way I think upside down.
All of a sudden I thought I’d have to cancel my appointment with my neurologist next Wednesday and my physical therapy that afternoon. But how could I handle my migraines without my neurologist? (Seriously, I love my neurologist(s). They rock. Everyone I’ve interacted with at that clinic is awesome. They even wished me a belated happy birthday the week after my birthday. That’s how cool they are.) My mom was reassuring me that everything should be worked out by next week, but the truth of the matter is, without insurance I couldn’t get almost any of the care I’m getting. This fall I’ve seen doctors for three things: migraines, carpal tunnel, and ankle problems. The migraines don’t result in many visits, but the visits I have are expensive and the medicine is pricey. The carpal tunnel and ankle problems both resulted in 8+ weeks of physical therapy and the ankle problems also led to me needing new orthotics. So if I didn’t have insurance, my vision of myself this fall involves massive amounts of pain, from my head, wrists, and ankles. (Yeah, I know, I’m falling apart…)
I know that I’m lucky. I grew up with health insurance and have never had a day without it (that I know of). That’s a lot more insurance than many people I know. But I’d also never envisioned a day without it. The fact that I can’t comprehend my life without it is a wakeup call to me, showing me how privileged I am that I can, through the grace of insurance, afford this care. This is not meant to be a political rant, I’m not talking about universal health care. I know that some of you have insurance and some of you don’t. And I hope that most of you don’t need it very often, but for me it is vital. That’s something that I hadn’t fully realized until yesterday.

Today

Today I don’t want to write anything. It is kindof like the day this picture was taken. It was 2004, I was on my first full day of travelling around Germany. I hadn’t gotten my railpass stamped in advance because I didn’t know that the train station would be closed until 9am. So I bought a ticket to station 1 (of 4 for the day). They couldn’t validate either. They tried to sell me a ticket to Berlin, but I wanted to go in the opposite direction, so I bought a ticket from the machine to get me all the way to station 4. Then at station 2 I had to wait outside for 1 hour in 40 degree temps with lots of wind (note my bangs). That wouldn’t be so bad if I had more than just a windbreaker to protect me. But there I sat. Waiting for my train, thinking how much the countryside looked like I imagined East Germany would look, for I was in East Germany. At the end of the day, though, I had a smile on my face as I curled up in my down duvet. I made it to the King’s Singers concert with 3 minutes to spare and had a comp ticket waiting for me. Win-win.
Today, not so much on the wins. Both my parents get gold stars for dealing well with a migrainey, teary daughter. Blogging lesson learned: I should really pre-write some blog posts so that I can just press send and not have to write anything on days like today…

Yet another migraine update

The last time I wrote a migraine update, things were going really well. I had a new doctor and was on steroids to keep my brain calm while my body adjusted to my new dose of topamax. I really liked the steroids. I had almost no migraines while I was on them. But, I had to get off them quickly, and life returned pretty much to normal. Headache of some sort every day, really really bad migraine once a month, and a want to stay in bed migraine about once a week.

A few weeks ago, I went into work despite having a “want to stay in bed” migraine. I knew I shouldn’t, but my CHI workshop proposal was due and I’m generally more productive at the office. It was also a group proposal and I was working with other people who I don’t know that well and didn’t want to let down. If it had been lab mates, I might have filled them in and stayed home, but with this proposal, I couldn’t.
I worked all day and in the afternoon, took a quick break to call the headache clinic to leave a message for my nurse practitioner. Nothing was working. Nothing had been working. I wasn’t going to last until my next appointment in mid-December. (I hate making phone calls and hate bugging doctors.) So I left a message. On Monday, I got a reply and set up an appointment for the earliest time, November 17. “What do I do in the meantime?” They said they’d get back to me. The next day I got a call back that they wanted to switch my preventative medication to zonegran, another seizure medication. So I’m on that now, ramping up the dose.
In the mean time, that Friday night I worked until 7:30pm, submitted the workshop proposal. (CURSES, Word for crashing an average of once every 5 minutes during that last half hour!) Then Ben picked me up, trying to rush me to my normal urgent care clinic, which closed at 8pm. We got there at 8:03. They were closed. So it was on to the ER and, while I got treated and had no migraines all weekend, I didn’t get out of the ER until 2:30am. It’s never a good sign when you go into triage and they inform you that they have one patient who’s been in the waiting room for 4 hours and the average wait to go back to a room is 2 hours. (I’d taken an Imitrex injection and Zofran, but they just weren’t doing the trick, sadly.)
So in 2 weeks when I go to the doctor, high on my list of questions is “what now?” What medication can I have for when I have a migraine and what if that doesn’t work?
Now, however, I’m excited that the zonegran is no longer giving me nightmares. And I’m still exceedingly thankful for a medical team that is incredibly responsive to my needs. And insurance. SO THANKFUL for insurance! Without it I wouldn’t be able to go to the ER or urgent care, or this great clinic. (Or get any of the medications I take regularly.) Hopefully with all this, things will get back to “healthy” levels soon.