Chronic Pain, Fatigue, and Isolation
Last updated: May 2023
My migraine story followed a similar path to many other migraineurs until about 6 months ago, when it all took a horrible turn into debilitating chronic daily migraines.
I do not know exactly when my migraines started. I figured out, with no help from the doctors I was seeing, that I had migraines about 4 years ago. I had dealt for years with chronic sinusitis, which I assumed was the cause of headaches and stomach aches that I was getting. It is hard to say if those actually were migraines or symptoms of sinusitis, but they could be debilitating at times. I remember at one point in college I was sick for nearly two months, mostly with stomach issues and tiredness. I don't remember if there were headaches too. I missed a lot of class that semester.
I still managed a 3.5 GPA that semester, but I felt like some of my professors were not happy with me. The doctors thought I had mono, even though I tested negative for it. It is possible that I was already experiencing the migraine condition that I would finally identify years later. From what I have read, a lot of other migraineurs have had migraine-like symptoms that went unidentified for years before they realized they had migraines.
At around age 22, I started having chronic stomach problems again. I was frequently nauseous. I had headaches on one side of the head as well. Doctors thought as I did that the headaches were caused by my sinusitis and that the stomach problems were acid reflux or an ulcer. However, treatments for digestive problems did not prove effective. I kept dealing with symptoms for months.
Almost a year later, the headaches became much more profound, and I knew there was something much deeper going on. My sinusitis was largely under control, but the headaches and stomach problems remained and were getting worse. One night, I had the worst headache I have ever had in my life. It was on the right side of my head. I would say that it was a 9 out of 10 on the pain scale. If it had been any more painful, I probably would have been unconscious. The pain was accompanied by nausea, which became worse every time the pain throbbed. I tried some Vicodin. It did nothing. I finally checked myself into the emergency room at about 2:00 AM. After a long wait, the doctors prescribed oxycodone for my pain, but I had to go pick it up from the pharmacy because I had driven myself to the hospital. The only 24-hour pharmacy was on the opposite side of town. I drove myself to the pharmacy, where I threw up in their parking lot two times, once by the car and once by the front door. I informed a store employee, who of course was disgusted. I am not sure that the painkiller actually helped with the pain, but it knocked me out for about 12 hours.
For the next few months, taking a heavy painkiller that put me to sleep for 12 hours was my primary way of treating the headaches, which would usually occur once every few weeks. When someone finally suggested to me that I look into migraines, I did a lot of reading, and it was obvious that it was what I had. Needless to say, I was pretty upset that the doctors had never discussed this as a possible diagnosis for my stomach and head aches.
For the next few years, I tracked my migraines carefully and tried to remove as many migraine triggers as possible. Removing common triggers did not prove to be very effective. The only thing that really helped me was understanding that the best thing to do with a migraine was lay down in a dark quiet place as quickly as possible. Through trial and error, I figured out that the only triggers I could confirm were weather changes, alcohol (especially beer), and light and sound. I frequently used sunglasses and earplugs at work and kept drinking to a minimum, which eased my frequency of migraines slightly. I would miss about a week's worth of work each year due to severe migraines. I usually just worked through the pain, which would pass after 1-5 days.
In the fall of 2013, I was going through a lot of stress, mostly related to my job. In October, I suddenly started feeling extremely tired all the time. All I wanted to do was sleep all the time. As I was starting to research possible causes of this, I was hit with a really bad migraine. Painkillers were doing nothing for it. Sleeping it off didn't work. It went on for several days when I decided to finally go into the doctor. They gave me more drugs for symptoms and sent me on my way. Two weeks later, I was still experiencing migraine symptoms every single day. I returned to the doctor, and they finally set me up with some scans and referred me to a neurologist.
Since the beginning of November, I have had migraine symptoms most of the day for nearly every day. I occasionally have a week or two of relief where I won't have any symptoms or the symptoms will be milder and for shorter portions of the day. However, most days I feel sick, and most days I struggle to work through it. For example, today I am on day 15 of a streak of consecutive days with migraine symptoms for at least 4 hours out of the day. I have done a lot of research on migraines, to the point where I can often predict what my neurologist will say at the next appointment and what he will prescribe. He agrees that I very likely have chronic daily migraines (a.k.a. "transformed migraine," migraine symptoms for a significant portion of the day more than 15 days out of the month). I have now been dealing with chronic migraine for over 6 months.
Chronic migraines are debilitating. I feel weak almost constantly. I am often nauseous, dizzy, tired, irritable, and in pain. I have only taken 4 sick days in the last 7 months, which I think any person familiar with this condition would find impressive. However, I cannot say that the condition hasn't affected my work. I have been late many mornings. I have canceled meetings and all kinds of evening activities. I have very little focus. I am irritable with other people at work and not very effective at my job. I am terrified that I am going to get poor evaluations this year. I used to come home every day and spend hours in my home office composing music. I was in a phase of a couple years where I was constantly feeling extremely creative and getting so much work done. Sometimes ideas were coming into my head faster than I could write them down. That's a good problem to have! That creativity stopped instantly at the onset of my chronic migraines. I have completed no new compositions since then. I have barely written anything. I feel like the flow of creative ideas into my head has completely shut off. There is no question that migraines are having a serious impact on my work and my creativity, not to mention my housekeeping and my marriage.
I recently read the book "A Brain Wider Than the Sky" by Andrew Levy. Dr. Levy is a professor and writer who has personally dealt with chronic migraines, and the book is sort of a memoir of his experience and summary of the research he did on migraines. The book is very interesting, and I found some relief in reading the experiences of someone else who has dealt with this same condition. Dr. Levy tried really hard in the book to show a positive reason for humans to experience this condition. There must be a reason, right? Levy suggests that some people have found inspiration for their creativity from their migraines. Many artists use their pain as a source for inspiration. The characters in Chuck Palahniak's novel "Diary" poison the main character Misty Wilmot so that she can put together an art show that will save their island. I am sure that I could find some creative inspiration out of this experience if the headaches ever took a break long enough for me to focus! Levy's other suggestion is that migraines are the body's way of telling you that you need to chill out: too much light, sound, and stress, too much of a particular food or drink, or perhaps just a warning that nasty weather is on the horizon and you need to take cover. He may be on to something there. Lately, my migraines have been at their worst in stressful situations. Studies that I have read about chronic migraines have shown a regular schedule of sleep, eating, and exercise to be more effective than any treatment or other factor.
I have read that chronic migraines usually pass after an unpredictable amount of time––perhaps months or years, depending on the person–– and most people progress back to episodic migraines. I certainly hope that this is the case for me and that it happens very soon. This is the most difficult thing I have ever experienced in my life. My work is very important to me. Teaching, writing and playing music, and spending quality time with my family and friends are all very important to me, and having chronic pain and weakness takes those things away from me or at least sucks the joy out of them. The worst thing about this condition, worse than the pain or any of the symptoms is the isolation. So much time spent alone, laying in a dark room. Whole weekends in bed, hiding from lights, sounds, and human beings. Family members, friends, and co-workers who I am letting down. Everyone expects more from me than I can give them right now, and I feel like almost nobody understands how incapable I am of giving them my attention, no matter how hard I try. The isolation is depressing. I feel like the emotional pain is just as bad as the physical pain. They are both more than I think I will be able to tolerate if something does not change soon.
From what I have read, I have the feeling that the next step in my treatment is going to be to try an anti-epilepsy drug or an anti-depressant. These have shown to be effective for some migraine sufferers. However, many people have found, whether the drugs treat their migraines or not, that the symptoms are horrible. Dr. Levy wrote in his book that an anti-epilepsy drug stopped his migraines, but he stopped taking it because it made him behave erratically. He would rather have the horrible chronic pain than not be certain that he was in control of his own behavior. I suppose that side effects are a risk you take with any drug treatment. I have taken drugs that have given me insomnia, fatigue, anxiety, and all kinds of other side effects. Those things have scared me. I suppose that my biggest fear right now is that my pain will either last forever or will only be relieved by a drug that does something else horrible to me. I also fear how this is already affecting my career and my marriage. How much more stress can those relationships take before they are broken?
I feel a bit relieved to finally put my fears into writing. I look forward to communicating with others on this site who have shared similar experiences. I would love to find out how others have found relief for the pain, isolation, and lost production that they have suffered from their migraines.
Have others downplayed your migraine pain?