My Migraine Story by Amy Shannon
I am a mother. I am a writer. I am a poet. I like to tell stories that come from my imagination. I am a life-long learner, and I also write book reviews on a blog, and co-host a podcast about writing, authors and books.
On November 2, 2005, my then-husband tried to kill me by beating me to death. Now, this isn’t about that (I’ll refer to this as the incident), but it was the blows to the head and face, from flying fists and kicking feet, that started my long, painful journey with chronic, DAILY intractable migraine. Those injuries resulted in six concussions on different areas of my brain, and a broken left orbit (eye socket) and cheek bone. Both sides of my face were injured severely but mostly on the left side, because he was right handed.
Anyway, after a recovery in the hospital, I had to try to start a new life, with my young sons. At the time, I was lucky that I had a job where I could choose to work from home or in the office. It took several months for all the bruises to heal, but that didn’t help my migraine (I usually call them headaches, but I know there is a difference between the two). The interesting part (not really), but I do get regular headaches, which seem to lay on top of the migraine. The pain from the migraine will move from time to time on different areas of my head. Forehead, left side, right side (and when I say the side, I mean it radiates from that side of my face to the back of my head), back of head and radiating to my neck, and the worse one, is the whole head pain, which also causes scalp pain.
The migraine also has different levels of severity. Once I got the migraine and it didn’t go away, ever, just changed levels of severity. I was determined to get the baseline migraine (on the Unidimensional pain scale of Numeric rating scales (NRS), I categorized my baseline to a 6) to a point where I could tolerate it. Of course, over the years, the migraine added more side effects to the pain, such as nausea, vomiting, dizziness, double or blurry vision, among other things.
At first, I saw only my primary care physician (PCP), who is a wonderful doctor and treats me well, and she tried me on a few different pain killers to see if any pain would be alleviated. Nothing at the painkiller level worked. I was also seeing a psychiatrist for my PTSD from the “incident,” and tried different anti-depressants and a medication that would help me sleep. They helped me feel better mentally at the time, but I still suffered in pain. Sometimes the pain was so bad, it affected my speech, where I would say something and thought I was talking normally, but it came out as gibberish. After a “flash-back” seizure, I was sent to an ER, and told I had a “short-circuit” in my brain. Then I overheard the doctor talking to a nurse about me, saying I should be committed. I left the ER. I knew myself, and I wasn’t at a level of being committed. Depression, check. PTSD, check. Pain, check.
I worked until I was laid off on my job (my entire department around the country was laid off), and I was out of work. I was also dealing with an on again, off again, relationship, and of course, my young children, one of which was disabled with a “mood” disorder (later diagnosed as bipolar), autism, and MR (now referred to as intellectual disability). I tried to deal with the pain and put it aside to take care of my family.
At one point, I had a severe migraine, a level of 8 on the pain scale (and some days 9), and the severity lasted 45 days. That was my record, and not one I was proud of. Once that level decreased, it only decreased to a level of 7 and that was my new baseline. My PCP tried different migraine meds, but also tried a steroid, Prednisone, thinking it could break this migraine cycle. People who have non-injury migraines have cycles, and sometimes the steroid breaks the cycle, and they go back to their normal life.
My PCP referred me to a neurologist, who performed MRIs and CAT scans of my head and what’s inside. He diagnosed me with intractable migraine. Something I knew I had. I then saw his Nurse Practitioner, and she saw me every six months, and would give me prescriptions for the current migraine drugs, as well as medication samples to try before prescribed. Some didn’t do anything, and most made the pain in my head worse, so much that I felt my head was going to explode.
A few times, I went to the ER, where I was just given painkillers, like Demerol and Morphine, which made me drowsy, and the pain was still there. After a few visits, I never went to the ER again for my migraines.
When the NP left the practice, I had to see the neurologist and he took me off all of my migraine meds that didn’t work anyway and wanted to get rid of any chance of a rebound migraine (where it goes away with medication but bounces back after the medication wears off). I was off meds for a long time, and just felt my normal migraines, up and down. I did notice that every time I told my neurologist that about a new or related symptom caused by the migraine, he told me that was normal. It wasn’t normal for me, it was new. It became a regular thing, and so did any other migraine inflicted symptoms.
When Botox was being added as a treatment, my neurologist suggested I undergo that. Three sessions later, it didn’t work. I decided not to go back to that doctor.
I did what I needed to do and focused more on my family. I do admit that it took a toll on my physical health, and I did get heavier, a lot, but my children needed me. I felt I was falling into a depression, especially since the migraines were a constant reminder of my past. (I did divorce my husband. I did press charges and had to fight the system, to get him arrested, charged and convicted. He went to prison for 2 years, and was supposed to get parole for 7 years, but he died nine months after he got out. Our family finally felt safe).
In 2011, I had a mild heart attack, and was diagnosed with Type II diabetes. That had nothing to do with my migraine, but my lifestyle. Since 2005, at that time, I had two left knee reconstructions, and then later, a third one.
When the migraines added more symptoms, and someone mentioned to me that I should apply for disability, since I couldn’t keep a job where I had to work outside the house. So, I did. I applied for Social Security Disability, and SSI.
I asked my PCP for a referral to a new neurologist, and I saw him. He sat down with me, listened to my history and symptoms, and then said, something I never heard before from any other person, that my brain was used to the migraines, so much that it thinks it’s normal, so even if there is a split second where it doesn’t hurt, the brain signals that it needs pain. That was an interesting theory and one I truly believe, looking back, and even now. After I saw him for the initial consultation, I saw his NP, who truly listened to me, and really wanted to “cure” me or at least give me some relief. So, there was another journey of new medications, and breakthroughs to try, along with EEGs and CAT scans that didn’t show anything (pain can’t be shown or proven, I guess). Any old concussions disappeared, but I think they were absorbed into my brain, creating a “brain” memory (which is like a muscle memory), and also kept reminding me of the incident.
When I couldn’t work anymore, not just from the pain, but my sons needed me, especially my special needs child, I decided to go back to school, and do it online. My memory would come and go. Sometimes if I was in so much pain, I stuttered, or felt like I had to lay down. So, I got my BA in English, then my MA in Adult Education, and my MBA. I love to learn, and my goal is to learn something new every day, even if it is learning about my own health or how to help my children with whatever needs they have. I did and still do a lot of research.
I never wanted to lose the functions in my hands or lose my mind, and its intellect. I don’t want to lose my memories either. Sometimes I do forget things, and I’ve forgotten where I was for a few seconds, but those are very long seconds. After I started to forget to turn off the stove, or I’ve burned food, I set timers, and wrote notes around the house as reminders for me. I also changed the type of meals that I make. I make simple meals like pasta or chicken, or other quick meals I can make on the stove safely, or just heat in the microwave (not my favorite, but safe) or I ask my son for help.
I lost the first SSD and SSI case, and at that time, I didn’t appeal. Later, in 2016, I reapplied. After years of unfavorable decisions, and appeals, and those appeals having an unfavorable decision, I lost again.
But this time, in July of 2019, I was diagnosed with Essential Tremors, after ruling out Parkinson’s Disease. I asked the new NP I was assigned, if it could be another symptom of my migraine (seems like everything does), she said it wasn’t possible, but sometimes tremors just happen. She did more Botox treatments that didn’t work anyway. Botox treatment is 31 small needles in different areas of the head. This time I did 4 sessions. I also learned that if it does work, it’s a continual process. Sometimes I didn’t feel the needles, but could hear my skin tear. Other times, where it was injected, hurt so bad my eyes watered.
Social Security denied me again, because I hadn’t had the tremors for 12 months, yet. After they denied me, they instructed me to reapply, but for a different start date, since by the time I got my letter, I’ve had the tremors for over 12 months. So, I did that, and now am waiting.
The migraines affect my life, but because I could do school online, that’s why I was denied, because of my continuing education. I had also homeschooled my youngest twins for 10th, 11th and 12th grade, one special education, and the other, regular academics, following the rules of the school district, and state board of education, and they graduated from homeschool and got their letter of completion. That is why I wanted to get my MA in Adult education. I had a dream of doing online classes as a teacher, or even doing some consultations in accounting (that’s why I got my MBA).
I am, well, was a writer. Mainly an author and poet, but days when I was in so much pain, I couldn’t write, but it seemed to open my creativity and imagination, ten-fold. I would jot notes down in a notebook, since I couldn’t write it as a whole story yet.
In May of 2020, my migraine increased from a level 7 as a normal, to an 8. It was around the time that my left eye was having difficulties, such as retinal detachment, and vitreous fluid degradation. I didn’t know that the two were related, since my eye was diagnosed months later. Now, my new “normal” migraine is an 8. My tremors increased, and they happen whether I’m at rest or active. I don’t sleep more than 2 hours at a time before I wake up. I often take an afternoon nap (for about 1 to 2 hours).
Eventually, the NP left the practice, and I have a new one. She told me the migraines will probably never go away, but she was going to focus on helping me with tremors, at least to reduce the ones I have when trying to sleep. Currently, I’m on a Neuro patch, which helps reduce RLS (Restless Leg Syndrome) but makes me very dizzy when I wake up and shake uncontrollably for a while, sometimes it calms after a few minutes, or a few hours. I’m still trying to decide if the benefits outweigh the side effects. I still wake up every 2 hours, and take afternoon naps.
The past few years, I started seeing not only a psychiatrist for PTSD, depression and anxiety, but also a counselor. I had several counselors, due to staffing changes. I had known for a while that I needed to see someone, for my own mental health, and to take care of myself. The pain in my head seemed to awaken my past memories and reintroduce me to the nightmares and reminders of the past and how I was injured. I became overwhelmed, and now, I didn’t have to take care of my sons as much, as they were adults. Even my special needs son conquered his medication and is med-free. He is in a program that helps him, and me.
With my tremors, I can’t write for too long. I drop things. My head hurts all the time, and it hurts my eyes. My anxiety increases, my tremors increase. Any ache I get from another part of my body, amplifies in my head. I am learning to use adaptive tools and change how I do things. I use speech recognition on my smartphone, and on my computer. If I write, I either write really slow to make it legible, or can’t write more than a sentence or two. Speech recognition is not the best tool, but it’s what I got.
I use plastic and metal cups with lids, even my wine cup has a lid on it. My sons or a rolling cart help me carry things that I could drop, such as food. I wear Kevlar gloves, so I don’t slice my hands open anymore when I cut food. If I shake too much, I don’t cut anything, I ask for help (Not easy). I don’t even drive anymore. My migraines used to affect if I could drive or not, depending on severity, but now, I can’t drive. A tremor in my foot could (and has) caused me to step on the gas, accelerating the car. My son drives me where I need to go.
This is my journey of migraine, and what it brings to my life. Not everyone understands. My migraine are similar to what people who experience migraines, but mine don’t go away. I knew my new “normal” of 8 was going to be my new normal, after it lasted 150 days. That’s when I stopped counting. I did start a migraine journal in December of 2019, but I also add my severity level, what side effects and any other health incidents to keep track.
Sometimes I say one word, when I mean another, and other times, I speak slowly so I don’t stutter as much. I am in the process of trying to get to a point of tolerance of my new normal, but the tremors and pain, and how they affect my life, is not easy. It can be depressing. It can cause anxiety. My mental health affects my physical health, and my physical health affects my mental health.