Yesterday I posted on Facebook about seeing a snow rainbow (I didn't know that was a thing?) when I was on my way to the Mayo Clinic in Rochester. I was seeing a neurologist because I suffer from chronic migraines...between eight to 15 days a month. This year they have gotten a lot worse, and frequently my medication doesn't work. I end up in bed for five days with excruciating pain. Ain't nobody got time for that. I was surprised by how many people responded to my post wanting to know more about my experience, because they too are dealing with migraine. So here it goes:
How It All Began
I've had migraines since I was a little kid, about five or six years old. Back then, I didn't know what they were. I just knew my head hurt, I needed to lay down in the dark, and eventually puke. We all chalked it up to a stomach bug because it only happened once or twice a year.
I recognized these as migraines when I was 16. I had plans to go out with my friends on a Wednesday evening, but suddenly felt really funny around 4 p.m. Like I had a dark cloud over my head. It soon turned to pain. By 7 p.m. I couldn't do anything but lay on the couch. My night was ruined. At about 11 p.m. I puked and felt 100% better by 2 a.m. Four months later it happened again. Four months after that, it happened again. That was my pattern in high school. A migraine every four months.
In college, it went to every three months. And then I started noticing triggers. If I ate chocolate after 4 p.m. - even one innocent-looking Hershey's kiss - I would get a migraine. Chocolate in the morning or early afternoon was okay...but after 4 p.m. it started a war in my head. My headaches had become more frequent by the time I graduated. I was taking eight Excedrin migraine a day. That created an awesome little problem known as rebound headaches....and really bad tummy aches.
Today I get so many migraines that it's hard to determine what my triggers are. Good news is I can now eat chocolate any time of day because that doesn't seem to trigger them any more! Thank the Lord - there's my silver lining. On the flip side, another favorite of mine does seem to be a pretty reliable trigger. Alcohol. Red wine, white wine, tequila, Tito's vodka. I've experimented with all different types to find something that I can drink for happy hour. It all makes me sick about 80% of the time. Just two weeks ago, one glass of red wine caused a raging five-day migraine that would not respond to my medication. So I've pretty much cut out drinking...if I do imbibe, I do so knowing I will get sick. I choose my occasions carefully.
Treatment
Over the years, I've tried several daily medications to reduce the number of headaches I have. Amitryptaline, topimax, propanolol are a few I've tried. I'm not a fan of daily meds. They all had side effects ranging from feeling like a space cadet, to putting on 10 pounds, to depression. After six months of taking them, none of them had any impact on the frequency of my headaches. I tried Botox too. The first round did seem to help, but the second and third rounds didn't help. I had a very youthful looking scalp, neck and shoulders, though! I've tried massage, chiropractic, tibetan monks, hypotherapy, tapping, essential oils, changing my diet, adding supplements like magnesium/niacin/co Q10. All with limited or temporary results. I try as best I can to eat regularly, workout three times a week, drink eight glasses water daily and get at least six hours of sleep a night. Any time I mess up my eating, exercising, water or sleeping routine I am more prone to migraine.
For acute headache treatment, I take sumatriptan, which is becoming less effective. When that doesn't work, I try a ketorolac injection (my mom or Nick gives me the shot...needles freak me out!). When that doesn't work, I try migranal - which is very scary because it is rated category X for pregnancy - meaning it can cause severe birth defects and death for baby. Given that Nick and I would love to have more children, I'm not happy to have this drug in my medicine cabinet and try to only use it as a last resort. All of these meds also come with their own set of side effects. When I take them, I try to just be away from people because they make me very emotional.
The headaches start as an annoying feeling - like a dark cloud. I get irritable, have a hard time concentrating, no patience. Then the pain starts, and gradually gets worse. It's always on one side of my head. Sort of like a fish hook has lodged itself in my eyebrow. Then like a branding iron in my sinus cavity. Stabbing and throbbing pains in my skull right above my ear. Even the tips of my ear hurt. Muscles in my neck, shoulders, jaw and face tighten up in response to the pain and add to the discomfort. I feel nauseous. When I lay in bed with all of this pain, I think of all of the things going on in the world that I can't be part of...all the things I need to get done. Calls I need to make. Emails awaiting response. Games I want to play with Charlotte. Projects and presentations to finish. Errands I need to run. It's very frustrating and depressing to lay there while the world passes me by. I feel inadequate and embarrassed because these headaches often derail my plans.
MAYO
I made the decision to go to Mayo in September. I felt I needed a second opinion because things seemed to be getting worse rather than better with the course of treatment recommended by my doc in Omaha.
I found out you can't just "go" to Mayo. You have to apply for an appointment. They only take appointments on cases with which they believe they can make a difference. On a whim, I applied and was surprised to be accepted. I filled out a TON of paperwork to prepare for the appointment. They told me to plan on five to seven business days in Rochester. In December. Yikes. Fortunately, everything in downtown Rochester is connected by skybridges and tunnels, so you can walk just about anywhere without going outside into freezing temps. I found myself wanting to leave a trail of bread crumbs everywhere I went so I could find my way back.
I started yesterday with a neurology appointment. I was so nervous. What if I'm just blowing this headache thing out of proportion? What if they think I'm crazy? What if they can't help me? They had me bring all of the bottles for my meds, vitamins and supplements which they reviewed first. They did all the usual stuff - height, weight, blood pressure, pulse. The doc met with me for about two hours. He did a full neurological exam, asked a lot of questions, answered a lot of questions, and really listened to me. He is a migraine sufferer himself, and was very empathetic.
The big takeaway for me was that migraines are hereditary and complicated. There are things in life that exacerbate the problem, which is where you get into debates about triggers and lifestyle changes. That's also why there's no bullet proof treatment that works for everyone. Most migraine treatments were discovered accidentally when docs were treating for a different condition. Treatment is very complicated and involves a lot of trial and error. Turns out you can make all the lifestyle changes you want, but if you are genetically inclined to have migraines, you might still get them. Ugh.
He has recommended a daily med for me - gabapentin. It's an anti-seizure medication, but supposedly has fewer side effects than others I've tried. For acute treatment, he recommended maxalt. I took maxalt years ago and it worked, but was very expensive and difficult to run through insurance. Today it's generic, so much more affordable. He also prescribed naproxin (an NSAID) for inflammation and promethazine for nausea.
When I feel that dark cloud, I'm supposed to take the naproxin and wait 45 minutes. If the headache doesn't clear, then I'm to take the maxalt. My most painful and difficult to treat headaches are the ones that wake me up in the morning. The doc said the reason these are so bad is because they've been forming while I'm asleep...by the time they are painful enough to wake me up it's like the "train has already left the station". For these headaches, I have to take all three - maxalt, naproxen and promethazine - together and try to go back to sleep until the pain is gone.
I'm participating in a headache study as well - which means I have to fill out a bubble sheet every day to log my headache pain. In three months the doctor will review the log and see if the meds have made difference. If they work, he believes there is a chance I could come off the gabapentin after 12-18 months of treatment. His goal is to get me down to one or two migraines a month - which would be life changing for me!!!
At the end of the consultation, he ordered an MRI. He was surprised that I had never had one after nearly 30 years of migraine.
Photo Shoot of My Brains
Check me out, ya'll! Never have I felt sexier than I did while wearing a three armhole medical gown and fancy teal grip socks while preparing for my MRI.
The latest in MRI fashion.
After a 15 minute walk through the bowels of Mayo, I checked in to Radiology and received a beeper + questionnaire to complete while I waited. The beeper went off and they whisked me into the prep area where they put in an IV port. Have I mentioned how much needles freak me out? The nurses were great - they let me lay back and gave me ice packs so I wouldn't pass out.
The MRI took about 45 minutes and included amenities such as a pre-warmed blanket, an unforgiving headrest (designed to prevent all movement) and ear plugs. I had to lay motionless in a tube. It felt like I was participating in some kind of futuristic sci-fi experiment. The machine actually had an interesting dance beat - once the earplugs were in, it reminded me of being in a Vegas club. I closed my eyes and thanked God for the hypnosis techniques I learned in preparation for childbirth...they helped me stay calm and relaxed. Rarely do I have 45 minutes all to myself in muffled silence. What a treat! There were all sorts of subtle electrical sensations on my head - at one point I had waves of goosebumps on the right side of my body. The nurse said that was weird and that I wasn't supposed to feel anything. Whatever. I came out feeling refreshed and rejuvenated!
Now I'm hanging out in my hotel room waiting for results, enjoying some time to myself. I hope those pics turn out great! The doc said he would call when the photos are ready. If my brains are normal (which I anticipate they will be...), then I'm free to go home and start my new treatment plan.
Moving Forward
I'm cautiously optimistic that this new treatment plan will work. I never thought I would have a chance to come off the medication, so hearing that from this doc gives me a lot of hope! In the meantime, I'll continue taking the best care of myself that I can while balancing family and business responsibilities.
While I'm doing what I can for myself, I'm also very interested in doing everything I can to help my daughter, Charlotte, not have these headaches. Knowing that migraine is hereditary has me very concerned for her. I don't want to see my little girl experience this kind of life-limiting pain. As of now, she shows no signs of migraine. We are doing some things as a preventative measure to help her stay as healthy and balanced as possible:
- Taking care of her neck and spine. Not all people agree with chiropractic care, but it has helped me with some neck problems caused by car accidents (which may have made me more prone to migraine). We took Charlotte for her first adjustment at five days old and continue to take her a couple of times a year.
- Protecting her head. I was a pretty serious gymnast and cheerleader up until the age of 12. I fell on my head. A lot. This may have exacerbated my tendency for headache. We will be very cautious about activities that involve a risk of concussion.
- Promoting sleep. We have been very intentional about teaching Charlotte how to sleep (it's a skill) by creating a home environment and routine that is conducive to sleep. She is very aware of when she is tired and welcomes her afternoon nap and bedtime. This keeps her from getting run down.
- Promoting healthy eating. This is a skill too. We put a lot of color on her plate and exposed her to spices and flavors starting at six months. We limit sweets and sugar to special occasions. She is forming her palate - what we put on her plate now will inform her preferences for the rest of her life. (This is coming from a Chocoholic mother who lived on Pepsi, goldfish and brownies in high school.)
- Protecting her gut health. Some theories on migraine suggest they are related to inflammation in the body. Much of the inflammation people experience comes from a lack of balance in the bacteria that live in the digestive tract. To promote balance, I nursed Charlotte until she self-weaned at around two years old and we give her a probiotic every day. Limiting sugar also keeps her in balance.
I would be doing well to do for myself what I'm already doing for Charlotte (except for the breast feeding part)! Better late than never, right? I hope this information is helpful to my friends who are also dealing with migraine. Every person is different, so you have to keep searching for answers until you find what works. I sincerely appreciate all of the support, prayers and kindness people have shown me through this journey. I truly feel loved. Thanks for reading :)