Living with migraines for 25 years
My name is Karen, and I’ve struggled with migraines since I was around the age of 9 – 10, but was never formally diagnosed until I was 18 a freshman in college. I am now almost 35.
Throughout my childhood, because I have a younger brother who liked to think that everything was wrong with him all of the time, I tried very hard to hide the pain that I was in and continue about my schoolwork and music. Not easy. It was when I was in 7th grade that I began wearing glasses for reading, and by the time I was in high school, was wearing bi-focals (I haven’t needed them now for almost 15 years, though I do still wear single vision glasses daily). My head would feel as if it was about to explode without any warning, and I frequently still feel this way now, though I am better equipped to deal with the pain since I know what it is.
When I was finally diagnosed with migraines, I was put on Zoloft (an antidepressant for daily prevention), though I was never told that the medication was an antidepressant, much less one that could be used for preventing migraines. When I discovered what the med was about 3 months into taking it, I was upset and took myself off of it. My doctor was not happy, and instead, put me on another preventative medication (this time a beta blocker – again, never explained it to me), as well as Imitrex. Within 6 months, Imitrex was like popping candy, and it didn’t stop migraines any longer. I gave up on seeking medical help for a while, and just struggled on my own.
When I graduated from college, I again began to seek help for my migraines in order to help keep them from interfering with my job as a teacher. This time, I was working with my OB/GYN, who thought that much of the problem was related to my menstrual cycle (I DO get some migraines related to my cycle, but not many). She was willing to explain what she was putting me on and why. After several years of going this route, with limited success (as well as my migraines getting severe during my first pregnancy and then not abating after our daughter was born), I worked with a local neurologist for a time, who was only willing to work with me as long as I was not pregnant – I was dropped from his practice as soon as I became pregnant with our second child. During this pregnancy, my migraines became even worse than they were with our daughter, and even the drive to work (11 miles), was enough to cause me to see stars by the time I actually arrived because my head was spinning. Once again, after our son was born, the migraines did not get any better, but continued to intensify. Six months after his birth, I was diagnosed by my then PCP as having Post-partum depression, though it is now believed that I had been dealing with depression since around the time that the migraines themselves began in my childhood.
In the summer of 2007, I sought out the help of a very prominent headache clinic, and was even hospitalized in their in-patient unit for 10 days on two separate occasions. The doctor here kept adding the medications on to me for both prevention and for aborting the migraines, as well as continuing to increase the dosage.
In February of 2008, I was noticing a very serious side effect of the increase of the blood pressure med I was on – I was getting dizzy and light headed quickly and easily. The doctor’s answer was to increase the dose not once, but three times. Finally, after dealing with this for 2 weeks, I passed out at work before school, and was taken to the local hospital, where I remained for 5 days. In the ER, my blood pressure kept dropping dangerously low, and while I was a patient on the Ortho/Neuro floor, I was wearing a telemetry monitor because of the blood pressure issue. I was also put on suicide watch for the first 24 hours because I admitted to the admitting doc that I had thoughts of suicide within the previous week because I could not take the pain any longer.
The hospital assigned a neurologist to me, and I continued to be in his care for the next year. During this time, he only did a blood test of my liver 1 time (this was because the pharmacist asked me if the neuro was doing blood tests because the one med I was still on for abortion – he didn’t change any of those meds – could cause liver and kidney damage) because I pressed the issue. I was put on Topamax and Neurontin, as well as another med that I cannot now remember. His records indicate that he did the neurological physical exam on me at every visit (I have seen these records because I had to request them for my now current neurologist), and that was a bald-faced lie. Those physical exams never took place. I had several status migraines, one of which resulted in a repeated nerve block to the one that was done successfully in February. This time, however, something went very wrong. The anastesiologist injected some lidocaine into the back of my head, and then inserted a needle that was connected to a radio-frequency device. When nothing happened, she pulled the needle out and replaced the needle. When nothing happened a second time, she pulled it out and replaced the batteries. After the third attempt, I was talking for several minutes, and then fell silent – I had become unconscious, and remained so for almost 15 minutes. An emergency CT scan showed nothing, and I was immediately admitted to the hospital. As I began to wake up, my speech was very garbled, and difficult to understand. My pastor, who had heard about what had happened, and quickly came to the hospital, thought I sounded as if I had just suffered a stroke. Aphasia is what it was called. By the next day, I was beginning to make more sense, and by the day after that, my speech patterns were returned to normal. An EEG performed while I was in the hospital after this incident turned up nothing (as was expected).
Late in the fall of 2008, I began to have absence seizure – like episodes, and he diagnosed me as having epilepsy (even though several EEG’s came back normal, including a 24 hour study). After 5 months of these episodes increasing, I was finally sent to an epileptologist who did not think I had epilepsy, but still wanted to run a 72 hour, in hospital, video EEG. As he expected, this came back normal, but with the one “episode” I did have, with my history, he believed that what I was experiencing was non-epileptic seizures (seizures caused by stress / trauma). He strongly suggested that I find a new neurologist who specialized, or had significant clinical interest in working with patients with migraines / headaches, who was also a female.
At the end of that school year, I quit teaching, worked with the new neurologist, worked with a new psychiatrist and psychologist (depression), and as the summer progressed, the NES symptoms went away, and my migraines came under tighter control. The new neurologist took me off of the abortive meds (she did not believe they were necessary), and instead, had me use oxygen – I do occasionally get cluster headaches – as well as Maxalt melts, 10mg. Finally, I have an abortive med that works for me! Instead of having constant status migrainosis (or at least, 4-5 migraines a week), I now have maybe 3 – 5 a month. I have been able to reduce my total medicine count down from 12 different medications to 4, including the Maxalt (not including vitamins).
Last spring, my PCP (a different one than the one who first gave me the Zoloft so many ears earlier when I was only 18) sent me to a specialist after trying to figure out why I was so tired all of the time. After reviewing blood work, a sleep study, my symptoms, he told me that if I was not diagnosed with Fibromyalgia by the specialist, he would be very surprised. Well, I was diagnosed with it and put on Lyrica, which has had a very surprising effect – it has continued to help with the migraines, allowing me to come off of two other medications I was still on at the time (Topamax and verapamil – a blood pressure med).
I know what triggers around 95% of my triggers, and when I look at the list of typical migraine triggers, I say yes to almost everything on the list. Sad, but what can I do. I cannot avoid all of my migraines, but I can take steps keep them at bay when I know they are possibly inevitable. I try to keep myself well hydrated, I have found ways to reduce the emotional stress I was under (I am still under stress, but what I’m under now is a good stress, one that motivates me to keep going). Maxalt is always in my purse, as well as stocked here at home. When one begins here at home, I’m able to quickly take the Maxalt, get a nice icepack, and go lay down for a little while. My house is very small, so if I’m home with the kids (ages 7 and 5) when this needs to take place, I can very easily still hear them (I don’t shut my door). Frequently one of them will come and snuggle with me, and my 7 year old likes to read to me during those times.
When a migraine now hits, I no longer feel as if I’m going to explode. My body knows well what to expect, as well as know with confidence that my medications will help. I’ve only had a status migraine 2 times since I have begun working with my new neurologist, and only one of those times landed me as a patient in the hospital for 4 days. The other time, I was taken care of by an anastesiologist with a nerve block using an injection of medication in the back of the head – NOT using the same procedure that had failed before. This one worked, and I have been status migraine free ever since – a year now.
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