Chronic Migraine Awareness

Written by Kristen Estep for Chronic Migraine Awareness Inc.

As I look back to my youth, I can honestly say that I have always had depression and anxiety, I just did not know it. In the 70’s and 80’s no one talked about these things, so I had no idea why I felt the way I did. Aside from feeling anxious all the time, I always had an upset stomach and headache. I vividly remember this during 4^th through 6^th grades. I spent a lot of time in the nurse’s office at school and got shooed away because I never had a fever. My first migraine with aura occurred when I was twelve, which was terrifying because I had no idea what was happening.

I spent my teenage years living with episodic migraine with aura, and always had headache. One time I remember getting a nurses pass from my gym class because I was having an attack. When I walked out of the gym my friend was leaving school for the day, so I left with her. My dad found me downstairs in the cool, dark family room with my head throbbing and asked if I was going to get in trouble for walking out of school. I told him I did not care; I could not stay. Luckily, I never got in trouble for leaving.

I had my first daughter at twenty-one, it was a natural birth with no medication. During the postpartum period I began getting strange auras as I typically do, skipping the headache phase. This happened multiple times a day. I had an extremely colicky baby, my husband worked third shift and I found myself depressed. I remember on several important occasions during this period my mom saying to me “why aren’t you happy?” I had no idea why I was not, I just felt like things were happening to me; like an outsider looking in at myself. Still in the early 90’s depression and anxiety were not talked about, in my family anyways. During this time, I was diagnosed with migraine, FINALLY! The drawback was the meds that did not work. I did not have the time or the money to continue going to the doctors, so I suffered and learned to mask everything. I had my second daughter at twenty-five and thankfully I did not have the strange auras this time. My depression did get worse again and my anxiety was through the roof. My daily headaches began to come back, and I had, what I always thought were sinus headaches with weather changes. While on birth control, the placebo week was the worst for my migraine attacks; I would feel like death and vomit. No one understood how I felt. Again, I masked my pain, depression, and anxiety as best I could. However, this was getting harder and harder to do.

I was in my thirties when I was officially diagnosed with clinical depression and anxiety. I began trialing migraine medications again, some helped, others did not. The side effects of a lot of these medications were terrible. I would take my depression meds religiously and then decide that I was fine and did not need them anymore. I’d go off them and ultimately fall down the depression rabbit hole again. I went through the motions of being a mom, doing all the things. The thing was I was completely mentally checked out. The day I heard my 4-year-old repeat what I always said, “I should just disappear – I don’t matter” devasted me and I bawled my eyes out. I promised her I would not say those words anymore if she didn’t either. I went back on antidepressants. I continued my negative self-talk, but never out loud.  We finally found the right combination of medications and I felt somewhat better mentally.

Migraine began occurring more often beginning in my mid-thirties but was still considered episodic. I was still seeing my family practice doctor for them. I tried modifying behaviors, staying away from certain foods and perfumes. It did not seem to matter; I still was getting them. Relpax was my savior at this point, but it would make my body so heavy I was unable to function when I took it. That is not conducive to having active growing children! I did not take it as often as I needed it because of that and again, I suffered and masked. I began to feel my depression creeping in again, the medication I was taking was becoming ineffective. I tried a few different antidepressants and anti-anxiety medications and once again found a decent combination.

The increasing frequency of migraine was becoming troublesome and in July of 2016 I woke up with a migraine that has never gone away. Between 2016 and 2018 I completely fell down the rabbit hole again. I lived in the dark, in the quiet, by myself. I felt hopeless and alone and unnecessary. The terrible soundtrack that plays in my head when I am in this state is unbearable to vocalize. Friends stopped calling or inviting me and my family was becoming self-sufficient. No one could count on me for anything and that holds so much guilt for me. I was letting everyone down, but I could not even help myself out. I wanted it to end. I did not care about myself anymore because what good was I? I had a plan. This was the lowest point of my life to date, and I felt so alone and so insignificant. Who would miss me? I felt the answer was no one.

I had never kept a journal or really written anything before but one day in 2018 I started writing down absolutely everything I was feeling, and it was so cathartic to get these thoughts out of my head. This was the beginning of me again -learning to live a modified life with chronic intractable migraine with aura. I searched social media for people like me who understood what I was going through seeing as the majority of my friends and family did not. I thank God for my online community, you are all amazing and life savers! I researched my diagnosis and treatments available; I began seeing a neurologist. We ran through a gamut of different medications and treatments, almost all of them failed me. People in my life do not understand why we cannot find the treatment stop my migraine. It is so difficult sometimes when people tell you what so and so did and now, they are cured! It used to make me want to pull my hair out but now I just tell them that I am so happy that said person has found relief, because I truly am. It is wonderful that many people are being helped by the new medications and treatments out there. I am diagnosed as intractable for a reason, my migraine is complex and difficult to treat.

My mental state is quite a bit better than when my migraine journey began, but I would be lying if I said I did not have bad days. This disease exacerbated my depression and anxiety, and it is a daily struggle to not let the internal voice win. I consider this community, advocacy, and volunteering to be a large part of why I am still fighting. I love interacting with each of you and hearing your migraine story. I must say that my quality of life began improving when I reached out to this community. I am still in pain every single day but am not confined to my bed and the dark 24/7. Some of my treatments have reduced the severity and duration of my migraine and, I’m able participate in my life again! I have found my confidence again over this past year and it feels amazing!

Please reach out to the migraine community and/or CMA if you need support. We all know how you are feeling, we really do! Do not believe what your internal voice is telling you, because you ARE worth it! We all deserve to be mentally healthy!

Thank you for helping me find my way out of the rabbit hole.