It’s been almost a year since I updated. Things took a definitive downhill slide with my health (and since health is what this blog is about, it’s very relevant) and I lost half a year of my life to a quack of a doctor.
Let me explain.
In my last post, I expounded on how I get migraines. July 9th marked the beginning of the end, somewhat. I’d been slowly but surely getting worse when it came to my migraines, but July 9th was my last day at work. At that point, I’d run out of FMLA to cover my absences and could not return without a doctor’s release, per HR at work. So, I stayed home, attempting to get my Neurologist to pay attention to the fact that my migraines had gone from once a month, to twice a month, to weekly, to twice a week, to every other day, to daily. Because I was in constant pain, I was beginning to be unable to sleep in any meaningful capacity. My nerves were shot and I could barely concentrate or focus on anything. My neuro’s response was to change up my meds.
The first change was to nortriptyline, which is another antidepressant, actually, and works by kicking your norepinephrine in the junk. Or something like that. I’m no expert on how medications actually work. Now, because I also have Major Depressive Disorder, Dysthymia and Trichotillomania, I’m on Cymbalta – the highest possible dose, 120 mg. The moment I started taking the nortriptyline, some interesting things began to happen. I began to get frequent cold sweats, random muscle spasms, excessive jaw clenching and teeth grinding, floaters in my vision, and ringing in my ears. I was exhausted, as well, though that might have been contributed by the fact that I could sleep for two hours, then be awake for two hours, then sleep for two, then be awake for two. I was also chronically nauseous and in pain owing to the migraine. In any case, the new symptoms were indicative (to me) of Serotonin Syndrome, a distinct possibility when you dump a tricyclic antidepressant like nortriptyline on top of an SSNRI like Cymbalta. My neuro couldn’t see me, so I saw a physician at my doctor’s office and begged to be taken off nortriptyline. This was permitted, and I was given tramadol to manage my pain until I could see my neuro. Now, tramadol doesn’t do a damned thing for migraine pain, but it’s great on muscle pain.
I was growing disillusioned with my neuro, and my work was growing disillusioned with me. I made appointments with two other neurologists recommended to me by other migraineurs I know in the hopes that I could get myself treated. At this point, I was terrified that something was horribly, awfully wrong. I was sick in a way I’d never been in my life. My workplace proceeded to send me through our long-term disability insurance company so that I could continue to receive benefits while I wasn’t drawing income.
Meanwhile, I was continuing to see my neurologist. I went in after being given permission by another physician to stop taking the poison she’d prescribed me, and was more or less read the riot act for daring to be ungrateful enough to stop taking something I /knew/ was wrong for me. The nurse was sarcastic when I attempted to tell her my symptoms, basically accusing me of being a hypochodriac and asking why I hadn’t been tested for Restless Leg instead of going off of the nortriptyline. I was also told, for the first time since I’d started seeing this neuro, even though I’d been with her for over five years, that if I had a migraine for more than three days, that I needed to call in and let them know so they could document it in my file. I had /never/ heard that before. They refused to fill out any paperwork pertaining to the long-term disability, instead opting to give me a copy of my file, even after I pointed out that their failure to assist me was going to cost me my job. I left there defeated and nearly in tears, with a new prescription for propranolol – a beta blocker. My blood pressure had come up high that day, so they figured changing my drugs again would somehow help my migraine.
Because my General Practioner Doc knows I’m not a big baby, and because I trust her, I made an appointment to talk to /her/ about my long-term disability paperwork and to see if she could help me. Of course, because I was out of work due to migraines, a neurological condition, she couldn’t fill out my paperwork, but at least someone knew now that I wasn’t making this shit up. I was in legitimate, daily agony. I couldn’t sleep. My head hurt constantly. My thought processes were minimal. I felt like a ghost.
I met my new neuro on August 11. Dr. Reilly sat down with me for two hours at our first meeting and went over every single symptom I had, even the ones I thought were silly. She was pleased with the changes I’d already initiated on my own to try and handle my migraines – yes, believe it or not, I had done things on my own without prompting, such as getting a bite guard to cut down on the teeth grinding when I /could/ sleep, and Chris and I had changed our diet to something closer to Paleo – we were avoiding weird chemicals in our food. I already knew about rebound headaches and that I couldn’t and shouldn’t over-use painkillers because that would lead to a rebound headache situation. After two hours with this neurologist, I had hope. I also had a new prescription for a daily medication, an order for a new MRI since my last one had been in 2008, and an order for a sleep study to see if my lack of sleep was caused solely by my migraine or if there was something else going on. As she was leaving, Dr. Reilly looked at me and said, “In the 20 plus years I’ve been practicing, I’ve only had 5 intractable/untreatable cases. I don’t think you’re going to be my sixth. I think we can help you.” I left with a folder full of information about migraines, and hope for the first time in over a month.
At the end of August, I saw my first neurologist again for a follow up appointment on my propranolol. I’d already gotten my MRI completed. I still had a migraine every day. She was baffled and finally suggested new imaging. I sheepishly admitted I had seen another neuro to get a second opinion and that I’d already gotten an MRI. She was … gracious about it, and called up the results, elated that my scans were normal. And she’s very fortunate that they were – imagine if I’d had a tumor or scarring from mini-strokes or something that could have been caught if someone had taken me seriously sooner. She also had a lab draw my blood to see if I had any thyroid conditions – a folly, really, considering I get tested yearly for both thyroid conditions and diabetes. First Neuro suggested that I only see one of the neuros at a time so as not to get conflicting drug prescribing, and I agreed. I left her office for the last time.
I did two rounds of sleep studies. They found that not only did I grind my teeth in my sleep, I also had sleep apnea and very very mild restless leg syndrome. The apnea was a bit of a surprise, given I had no real markers for it – I didn’t snore with any regularity, had never been known to just stop breathing in my sleep, or any other weirdness. The only marker I had was being fat.
Following up with the new neuro in mid-September, I was instructed to avoid dairy and start taking COQ10 supplements to help me focus/concentrate. I also had new blood tests ordered to test for vitamin deficiencies. Two weeks later, I got a head’s up – I was severely deficient in vitamins D and B12 and was to start taking mega-doses immediately unless I was really fond of rickets.
The moment I started taking those supplements, my life changed. The body spasms stopped. The ringing in my ears stopped. The sweats stopped. The floaters in my vision stopped. And because my body was no longer freaking out on an epic scale, my daily migraine med could finally start being effective. I went one day without pain. Then two. Then three. I was starting to get better. I got the CPAP machine for my sleep apnea in October. I’m still trying to get used to it.
Throughout all of this chaos and drama with my health, I was taking the last two classes I needed for my associate’s degree. They were online classes, but they were definitely not at my own pace. Turns out my Women’s Lit professor was a stickler for making sure everything was in on time while simultaneously failing to give feedback on things she said she would or even responding to e-mails. On the flip side, my mythology class was wonderful, but so information intensive some days it felt like my brain was bruised. Frankly, I could not have worked in any capacity, done both of those classes, AND have been in constant pain the way I was. Some days, I had to opt to not do some of my schoolwork because I simply couldn’t process what was being asked of me. I passed Women’s Lit with a C and Mythology with a B – both classes I would have aced had I been in normal health.
In November I received the verdict on my long-term disability claim: denied. They had based it on the testimony of my first neurologist, who more or less told them my migraines came from being too stressed and depressed, not from any actual physiological problems. I was given the option to appeal, which I had to do if I wanted to continue my benefits with my job. And I would have appealed it anyhow, because I’m pretty sure having a migraine for five months is a long term of disability.
So, from July to November, I had had a migraine nearly every single day, and was slowly coming out of it. I was beginning to sleep at night again. My body didn’t ache all the time. I was beginning to feel human again. I had a major setback after Thanksgiving, when I realized I’d been off of my standard mostly-Paleo diet for ten days and had been eating stuffing in large amounts, which made me realize that I probably have a bit of a gluten intolerance. So now I’m cautious about overdosing on wheat.
And now we’re just past the holidays. I still have migraines about every two weeks. Sometimes a little more frequent. I’m still in recovery. I am fully cleared to go back to work.
Now I just have to find a job.