Tuesday, October 22, 2019

My Life With Chronic Headaches/Migraines Part 6: the Injections

My last official migraine update was 8 months ago, February!! A lot has changed in headacheland since then.

I began seeing a neurologist in Clarksville for the first time in March, and she’s great. She bumped up my nightly meds to 100 mg (and if I thought they knocked me out before...uffda! Talk about permanently sleepy...) as a last ditch effort to see if they worked before trying something different. 

I also began a 3-month long migraine study through Stanford University. Using an app, for 90 days I tracked my headaches (the length, the time of day they began, the medication I used to treat them, the symptoms that came with them, etc.). I also had to record caffeine intake/alcoholic beverages and the time I drank them, menstruation days, the times I took/forgot to take my prescribed medications, whether it was a workday/vacation day/weekend/half work day, the time I went to bed and the time I woke up. They also sent me an Apple Watch to wear to monitor my location- altitude, weather, allergens, etc. I was excited to get back the results in June, only to find there was absolutely no pattern. None. Zilch. Nada. Zero. What was causing my headaches and migraines? Stanford sure as heck couldn’t tell me.

June and July were tough months to make headache care a priority. I was busy, busy, busy and traveling what felt like all over the US (okay, only 13 states, one quarter of the US). Getting back to the neuro wasn't anywhere near the top of my to-do list. I was having daily, to every-other-day headaches. The good news was that between Excedrin and the Riz I was able to get rid of them. I maybe spent a day or two in bed waiting for severe pain to go away, but nothing near compared to two summers ago. 

Finally we headed back to school, and I headed back to the neuro. I had officially had little to no success with enough preventatives that injections were now a viable option for me to try. I was scared out of my mind to go to the neuro that August afternoon, because I knew that was what she would suggest. I didn’t know much about injections. I knew that was my next step, but I was under the impression that injection meant Botox, and Botox meant roughly 30 freakin’ needles being stuck into my neck at one time. UM NOPE. 

My neuro calmed me and said no way, that would be a last resort. A little over a year before this appointment, monthly injections were approved by the FDA for migraine prevention. In order for insurance to cover this injection, you have to have tried multiple other avenues of prevention first. Even still, it’s so new that most health insurance doesn’t quite cover them yet. I’m set up on some co-pay plan through the Aimovig company (Aimovig is the name of the injection) in which they pay the $700 for my injection each month for the first year, and eventually my insurance will pay them back. (I know there is a more technical and accurate way to explain this whole insurance thing, but that’s about what I understood from my neuro and the pharmacist).

Image result for aimovig

In normal people explanation, Aimovig releases an antibody that is suppose to wedge into these receptors in your brain and block one of the proteins released during a migraine from getting in those receptors and causing the pain.
Image result for aimovig

I get the injection mailed to me once a month from a specialty pharmacy in Nashville, and as of the writing of this post I have had three injections so far.

When I got the first box in the mail I panicked. I had read all about Aimovig as soon as the neuro sent up the prescription and I saw that people either did a 70 mg shot once a month, or 140 mg shot once a month, which was actually 2-70 mg shots given simultaneously. My box said 140 mg. My eyes bulged- I had been mentally preparing for one shot, not two!! I tore the box open to find one injection pen, hallelujah. I guess they’ve updated their drugs since release, but not whatever website I read it on.

I’m supposed to be doing the injection myself, but if you know me IRL you know that’s never going to happen. Literally, never. I thought it would look like a shot that you get at the doctor, but it’s more like an epi-pen, except less dramatic. All you have to do is press the bottom of the tube against your thigh, click the button down at the top which pushes the needle into your skin, then wait 10-15 seconds until you hear the click of the needle pop back up inside the tube. 

Did you hear that?? I said there is a NEEDLE stuck INSIDE OF ME for a whole 10-15 SECONDS!! (Imagine the 10-15 capitalized over there for dramatic effect). BLEGH.

I had our school nurse do the first two since they were given on school days. (Carlotta you da real MVP here). For the first one, my friend Josie came along to hold my hand. (She wanted to see it, I needed the moral support- Josie, you are also da real MVP). When Carlotta pushed down the button I felt NOTHING. I was so excited! It was way easier than I thought it would be- heck, I could do this myself!! Then we realized the needle hadn’t even gone in.... so we tried again. And this time it did NOT feel like nothing. I whined for the whole 15 minutes. 15 seconds, whatever. It felt like F.O.R.E.V.E.R.

Month two wasn’t as bad. I bought my hoodie to put over my face so I couldn’t see what was happening. My heart rate barely raced to over one hundred this time, versus the 115 BMP it reached during the first injection. #trypanophobiaproblems I still whined, but less, so I got a sticker.

Month three took place at the doctor because I had to get it on a Saturday and there was still no way in you-know-where that I was doing it to myself. The nurse was nice, she reminded me to breathe 28 times and kept talking about the beach to try and distract me. It didn’t hurt so bad at second one but by second 15 I was ready to rip the darn thing out. I didn’t even get a sticker outta her. Rude.

There are really no side effects to this other than  possible constiptation or a reaction/rash at the injection site. I get a small bruise a couple days after the injection, but that’s it. 

After month one I wasn’t sure it was helping. I still was getting headaches, but at least now they were almost always purely headaches instead of migraines and were treatable with a little caffeine and some Excedrin. Leading up to injection #3 I hadn’t had a headache in two weeks, so that’s good news.

They advertise Aimovig as reducing headache days by 50%. As mentioned before, this past summer had nearly daily migraines. We'll say roughly 20-25/month. In the month after injection #1 I had 8, and in the month after injection #2, I had 7. Making them go away permanently will likely never happen, and while 7-8 per month isn't ideal, its much better that 20-25/month.

This is the now. For now I get 140 mg of Aimovig injected into my thigh once a month. If we determine this isn’t working, there are similar injections I can try instead. If none of those work, that’s when Botox become an option. Let us all pray to the migraine gods that that never happens. I can hardly handle one needle, let alone 30...

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