Migraine Update 11/29/2019

I'm posting an update on how my migraines have been and what is working and not working in hopes of encouraging other people with chronic illness, particularly chronic migraine. Please don't take anything I write here as medical advice. This is just documentation of my own journey. I strongly recommend that you find a medical practitioner with whom you are comfortable working and develop a plan to minimize your symptoms and maximize your enjoyment of life. If you have chronic migraine, I strongly recommend seeing a headache specialist. Even if you don't have a headache specialist nearby, it would be good to get a consultation and have your regular doctor consult with the headache specialist as needed. I have been very happy with my specialist. He doesn't try to cure me but tries to minimize the migraines, and he communicates well with my family physician.

I've had a rough year with chronic migraine. I haven't been able to determine any trigger or anything new. I've been on a low-carb diet and generally in ketosis. Nonetheless, I've had three (!) Emergency Department visits since January. Not good!! Both my baseline headache and my migraines have been worse at least since the spring. My daily headaches have been up around a 5-6 from a 3-4 with migraines up to 7-9 and lasting as long as a full day which is up from 6-8 and lasting 4-12 hours.

My treatment consists of Botox, topiramate ER, amitriptyline, magnesium, riboflavin, CBD oil, CoQ10, my Cefaly device, a ketogenic diet, daily medication, and exercise as regularly as possible. Despite my regimen, which I try to keep steady, things were getting rather bleak during the summer. We did 2 courses of high dose steroids, one of which was accompanied by occipital anesthetic/steroid nerve blocks. These were reasonably helpful for a time.

This fall, the migraines escalated again, and for no discernable reason. I got very frustrated because I had very few days when I felt well enough to cook or do the laundry, much less do any other other household chores like vacuum.

My headache specialist redid the occipital nerve injections and started me again on oral steroids. Unfortunately, five days later, I had a really great day and got lots of stuff done and totally broke my diet regimen when I ate tons of carbs while making cookies. I ended up in the Emergency Department that night mostly because I couldn't stop vomiting. The pain was bad (8-9), but the vomiting was the worst. I was able to go home with pain levels around a 4, but for the next 12 days, I had constant migraine-like pain with some nausea.

My MD was out of the office, so the NP who works with him had me start olanzapine 10mg in the morning. I take it in the morning because, when I tried it before, I didn't complete the course because it messed up my sleep when I took it at night. After 2-3 days, I started to feel better. I'm now on day 8 and feeling much better. My baseline headache is down to a 3-4 and the couple of migraines that I have had have responded to treatment within 4-6 hours.

Olanzapine is not a benign drug, though! Even though I take it in the morning, I still have a hard time sleeping. I fall asleep pretty easily about an hour or two after I take my sleeping medicine. I only sleep about 5 or 6 hours, though, before I wake up and can't go back to sleep. This would be great if I was able to be productive all the time, but I think the olanzapine is affecting my thinking and concentration a bit. It's not terrible, but I'm not able to just sit and read for an hour like I usually do. I've also had a terribly dry mouth, so it's good that I'm used to drinking water all day. One of the side effects that I'll be very glad to lose is peripheral edema. My ankles are about twice normal size! Yesterday and today I wore compression socks to keep the swelling from getting too bad. My mood has been much better and potentially a bit manic. I've been talking (and writing) more than usual. Patrick says he's enjoying it because I'd become so quiet and withdrawn with the worsening migraines.

I'm hopeful that the migraines will stay at their manageable baseline even after I stop the olanzapine. Taking this medication on a regular basis is just not an option. (Also, there are long-term side effects that make it not a good choice.)

No matter what we do about medication, I have to remember all of my lifestyle habits. These are important for anyone with chronic illness, but they are crucial in chronic migraine.

* Regular sleep schedule. I try to go to bed within about a one hour window.

* Healthy diet. For me, this means low-carbohydrate at a minimum, preferably ketogenic.

* Regular exercise. I can't exercise when I have a migraine, so I exercise on non-migraine days, which amounts to 3-4 days/week.

* Daily meditation. This one is hard to do on the weekends and holidays, but otherwise, I have a pretty good routine when I read the lectionary scriptures, pray some routine prayers with prayer beads, then meditate. If a piece of scripture really meant something to me, I might finish up by blogging about it.

* Cefaly. This is like a TENS unit for the forehead. When I have a bad migraine I can't use it because it hurts too much. Otherwise, I try to use it every day.

* Socialization. This is mostly important for my depression. I have to proactively schedule time with friends. It's totally worth it, even if we have to reschedule it sometimes.

I have found that setting aside my mornings for my self-care works best for me. Sometimes, I do go have breakfast with a friend or have a late morning appointment so I have to work around things. Nonetheless, I try to keep the mornings for me to get my physical care done, then use the afternoon for cleaning house, cooking, and all the other things that I'd like to do. It also means that if I'm short on energy, I've focused it on taking care of myself and we may end up ordering dinner out if I never got around to cooking - LOL!

That's where we are right now. My hope is that my migraines stay at baseline (although I wouldn't argue if they went away completely). Unfortunately, my life rather revolves around my illness. However, the more stable my chronic migraine, the more I can participate in the life of my family and community.

What have you figured out that works for your self-care, whether you have chronic illness or not?

Catherine