Thursday, May 18, 2006

Incurable

I can't remember when I first started seeing spots. I do remember one summer afternoon in Iowa when I just felt out of it and figured it was from being out in the heat too long. I laid down on the carpet in our living room and wondered if being out in the bright sunlight was creating the spotty vision that was something like if you accidentally looked directly at the sun.

I remember getting headaches that started at the base of my skull at the back of my neck that felt like my brain had swollen up inside my head and was pounding against the inside of my head with each beat of my heart. When I got these headaches, bending over caused the throbbing pain to get worse as the blood rushed to my head. If I shook my head I could feel my brain sloshing around in agony. They weren't pleasant, but weren't excruciating either.

My parents were big believers in chiropractic, largely due to the chiropractor that moved into our ward and did good business with the church members and other credulous locals. It worked sometimes. He was able to correctly diagnose and treat my lower back pain that was caused by a congenital defect. He also had a nearly miraculous cure for ankle pain that I developed during junior high track season. But he couldn't make a dent in my headaches. If it was caused by a pinched nerve in my neck then he never came close to fixing it. I'd sometimes leave with my head pounding worse than when I arrived.

But the spots were the worst. It's hard to live a normal life when the spots pop up and create blind spots in your vision. Sometimes they'd be like shooting stars or little sparks that would shoot across my vision. Other times they started as a pulsing, jagged dot that would gradually expand with a sparkly, jagged border around a blind region of vision. They always went away after a little while. Sometimes the headaches would start afterwards. Almost always I'd feel out of it afterwards and have difficulty concentrating.

I don't know how often I had the spots or the headaches. I don't even remember the first time it happened. It must not have been too frequently or I'd have probably gone to the doctor. Over time I just learned to live with it. Don't ask me why I never went to the doctor. I guess I figured it must not be that serious since it always went away. Secretly I think that I was worried that if I went to a doctor I might find out I had a brain tumor and was doomed to die and really didn't want to know that.

I distinctly remember a bad bout of the spots that I had when I took the ACT (an alternative to the SAT that BYU used for college admissions) in high school. As I got ready to take the test the shooting stars started flying around. Then the fixed spots started to grow. I remember struggling through the reading comprehension test as I tried to read with my peripheral vision because the blind spots were covering parts of the words. I also remember how difficult it was to read even after the spots went away as the words just didn't seem to stick. I finished the test as best as I could, but knew that a retake would be justified if the results weren't good. As it turned out, I scored in the 99th percentile on the test and did well enough to warrant a 4 year full tuition scholarship to BYU. I'm still curious about how I might have done if I'd have been at full fighting strength.

Things didn't get better when I went away to school. I remember having episodes where I felt so badly that I just wanted to crawl into a hole and die. One evening I was battling the spots so badly that I laid down on the floor with my legs up on the bed, hoping that getting some blood to my head might help. I couldn't stand up anyway because I felt so faint. I had the lights off because any light hurt and the noises in the dormitory really irritated me. My roommate came in and found me like this and went to get some older students who had the Melchesidek priesthood so that they could give me a blessing. They annointed my head with oil and did the blessing, but that didn't provide any relief either.

One Saturday I went to University Mall with my friend so he could shop for clothes. As he was trying on clothes I wandered around the racks waiting. A spot started to grow and as it grew I found a rack of shirts and put my hand on it and waited as the spot filled my entire field of vision and made me completely blind. Time seemed to stop and I wondered how I was going to find my friend or get back home. I'd probably have been really scared but I was also out of it and I was pretty sure that the spots would go away after a while and I'd be able to see. After what seemed like an eternity my friend came out of the changing rooms and I explained that I seemed to be temporarily blind. He guided me to the bus stop where we caught the bus back to campus. During the ride my vision started coming back and after a while I was back to normal.

Strange things continued to happen in my head as I grew older. Several months after arriving on my church mission in Bolivia I was already reasonably fluent in Spanish. But one morning I woke up with a headache and felt nauseous and really out of it. We were living in La Paz at about 13,000 feet so altitude sickness is pretty common. I spent the morning drinking coca tea (yes, the same leaves they use to make cocaine) while we waited for an appointment at our house. The teenage girl we were teaching arrived and as we got ready to teach a missionary discussion I was quite distressed to discover that I couldn't speak a word of Spanish. English was online, but I couldn't even figure out how to say hello in Spanish. That was a new one. After a little while I started feeling a little better and my Spanish came back, but it was certainly odd.

After my mission I immediately returned to BYU for my junior year of electrical engineering. I couldn't take a light load and ease back into my studies because completing the degree in four years required a full load of classes each semester. I was determined to finish in four years, because that is what my scholarship covered and I didn't want to have to pay tuition for extra semesters. So I found myself with 18 credit hours of hard upper division classes after a two year hiatus. Three of the classes were lab classes that required a time commitment far beyond their credit hours. The department strongly discouraged taking more than two lab classes in a semester. I took three because otherwise my graduation would be delayed by a year because of prerequisite dependencies between classes and when classes were offered. Just to add a little more stress, my scholarship required that I keep a GPA of at least 3.5 or else it would be suspended. It was hard, but I actually had one of my better semesters GPA wise.

At the end of the semester I had a welcome break. I went home for Christmas and returned to Provo and my apartment several days before classes started. During the entire butt-buster of a semester I never had problems with the spots, but now they attacked with a vengeance. I was getting the spots two and sometimes three times a day. I was practically bed ridden because most of the time I was having difficulty seeing and the rest of the time I couldn't hardly read because even though I could see, the words just didn't seem to be digested by my brain. With another grueling semester rapidly approaching I contemplated suicide but instead finally went to the doctor.

I described my symptoms to the doctor and how debilitated I was and he just smiled and said, "Those are classic migraine symptoms."

"Huh? Isn't that a really bad headache? My headaches aren't that bad. I don't care about the headaches. I can live with pain. But I can't live with not being able to see and not being able to read, concentrate, and think."

He prescribed some little pink pills that I was to take each night before going to bed that would stop me from getting the migraines. I was skeptical, but it worked. I mostly stopped getting what I now knew to be migraine attacks. I'd still get them occassionally, but not as badly and much less frequently. The only side effect is that they made me drowsy and I had a very difficult time getting up in the morning. I nearly flunked my 7:00 am computer science class that semester because I kept sleeping through classes. But that was a minor problem compared to finally understanding what caused the spots and finding out how to prevent them.

I'm 42 now and still get migraines from time to time. I still take medicine each night as a prophylaxis. But I've learned more over time. Strangely, it isn't stress that triggers my migraines; it is relief from stress. That is why my worst episode of migraines occurred during the break between two very stressful semesters. I now dread vacations because I know that I may spend them fighting migraines. I've also figured out that regular sleep patterns are very important as well as getting adequate sleep. I avoid sleeping in on the weekends because when I do I often wake up with a splitting headache. I also almost never use an alarm clock to ensure that I stay well rested.

Not only is there no cure for migraines, the medical community doesn't even really understand what they are. They're learning more, but doctors generally don't think of migraine as a serious illness. Just one example to illustrate the attitude of the medical community. One morning I woke up disoriented and confused. I didn't know who I was and I didn't know who my wife was. My wife hurried me to the hospital where I gradually started to become lucid. My doctor thought it was "just" a migraine attack but sent me over to the Mayo clinic for a CAT scan to rule out a stroke. The sympathetic intern at the Mayo asked me what I was there for and got a look of disdain when I told him what had happened and what I was there for. "You just had a migraine attack. Why are you wasting our time and money getting a CAT scan?" I guess migraines aren't considered serious because they won't kill you.

It turns out that maybe they can. Some research indicates that migraine sufferers are six times more likely to suffer a stroke. They are related to blood flow in the brain and the throbbing headaches can be lessened by drugs that constrict the blood vessels in the brain. Aspirin works for me, but there are heavier drugs available.

Recently doctors have found some tantalizing clues. Before you are born a hole in the heart shunts blood from one side of the heart to the other so that the blood bypasses the developing lungs. Normally this hole closes up after you are born and blood starts circulating through the lungs. But about 15 percent of the population has a patent foramen ovale (PFO) which is when the hole doesn't completely close and causes a slight heart murmur. For some people this seems to cause temporal ischemic attacks (TIA) which is a temporary stroke and even strokes. If the traditional stroke treatments such as blood thinners don't work then they do heart surgery to repair the PFO. This seems to be effective in stopping the TIAs and strokes, but many patients also unexpectedly reported that it also cured their migraines. Followup studies seem to show that many people with PFOs also suffer from migraine and that a very high percentage of people with PFOs and migraine report relief from their migraines after the PFO is repaired. Unfortunately migraines aren't considered serious enough to justify the risks of heart surgery. But new catheterization procedures for repairing PFOs may change that in the near future. It's strange to consider that some migraines may actually be caused by a heart problem. It just goes to show how complicated the body is.

Weekly Anamnesis

4 comments:

Cynthia E. Bagley said...

Very interesting. I used to have migraines too. When the treatment for Wegener's started and the treatment for hypertension (collateral damage) viola! my migraines went away. :-)

Sideon said...

Have you tried NLP or accupuncture?

It's interesting that these attacks occur when you're the most relaxed. Is there a way you can plan a sort of "good stress" into vacations, like running or exercise or bungee jumping?

Great anamnesis post.

lma said...

Thanks for the interesting post. My best friend has migranes that are horrible. The change in her is so complete, and sometimes so instantaneous, when she gets them that sometimes I can tell just by looking at her when one begins. And no wonder. She describes the sensation as akin to having a load or bricks fall on her head.

I'll have to share your post with her. I'm sure she'll be interested.

lma

-Domokun- said...

I have occasional migraines, and I had a childhood heart murmur like you describe. I never knew they may be related. Thanks!