Hell in my Head

Hell in my Head

Read part one of this story in Zero to Migraine.

I was working night shift in the hospital pharmacy when I got a message (yes, in the middle of the night) from our REI specialist.

“Well, I think we may have some answers for you! Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause)…This is very different from PCOS and likely reflects a small growth in your pituitary gland (your prolactin was elevated). This is the most common type of pituitary growth and is usually NOT CANCER…The next step will be a head MRI (I see you had a normal CT)…As long as the pituitary gland looks as expected, we can start a medicine to bring down your prolactin levels and you should start cycling regularly and be able to get pregnant…”

Wow. Just wow. I remember sitting there, reading the message over and over again inbetween checking meds that needed to go out, just to be sure I was reading it correctly. So by “small growth”, she meant, like, a brain tumor, right? A legit brain tumor. And of all the people to diagnose it, it was our REI specialist! The baby lady! When I got home from work that morning, I wrote in my journal:

March 1: “I’m glad we are finally starting to put the pieces together, even if it is something potentially serious. I had a feeling this whole time that something wasn’t right in my head. The chronicity of the migraines was too sudden a change from status quo that I don’t think it could be due to anything else.”

I had my MRI on March 9th, and when the report finally came back, it read: “6 mm area of diminished enhancement in the pituitary gland suggestive of a microadenoma”. So it was official. I had a brain tumor.

But don’t be alarmed. A microadenoma refers to a growth less than 10 mm. In my case, it is more specifically a prolactinoma, which is a benign brain tumor that can be easily treated with oral medication. Surgery is rarely needed, and even so, isn’t always curative in the case of a prolactinoma (meaning, they sometimes grow back following surgical removal).

There are two possible medications used to treat prolactinomas: bromocriptine, which is a much older drug, or cabergoline, a newer drug with fewer side effects that is generally better tolerated. *Pharmacy nerd moment commencing* These medications work by binding to dopamine receptors in the brain and inhibiting the release of prolactin from the anterior pituitary gland. *Pharmacy nerd moment complete*

Since cabergoline is historically the better tolerated of the two medications, I started taking it in the middle of March 2016. Instantly, my headaches changed from migrainous to non-migrainous. That was a huge relief! But I was experiencing all the side effects common to the medication: nausea, dizziness, lightheadedness, hot flashes, night sweats, and course, I was still having severe daily headaches, even though they’d changed in character. The side effects were severe enough that I was having to call off work on a regular basis, which made an already difficult situation even worse.

April 10: “So then what’s the point? I live on a medication that makes me feel sick all the time? And still having headaches? What kind of quality of life is that?…I feel sick a lot of the time, have a headache all the time…feel dizzy and lightheaded a lot. I mean, I can’t function that way…I don’t want to feel this way. I can’t imagine living the rest of my life like this. I really don’t think I can do it.”

It only took about a month to realize I wasn’t going to be able to tolerate the cabergoline. My life had taken a complete downhill turn ever since I had started taking it.

April 18: “Then the brain tumor. Oh, the brain tumor. Headaches beyond belief for 3 1/2 months now with no end in sight yet. Hopefully the change in medication will help. I can’t deal with both the headaches and the side effects: nausea, dizziness, hot  flashes, night sweats. The side effects are just as bad as the headaches themselves.”

So even though bromocriptine is typically the less tolerated medication, I switched to that on April 21st. But we decided to lessen the chance of side effects by changing the route of administration…to one only girls have. (Oh, come on, it’s really not that bad!) I was willing to do anything to avoid side effects. I would have shoved it up my nose if it would make a difference. Surprisingly, I did well with it from a side effect perspective for a few weeks…until the headaches got worse in May. More work was missed, which was starting to become a more serious problem despite FMLA. I only made it through one full week of work successfully the whole month.

Meanwhile, I tried to get an appointment with the neurosurgeon who specializes in pituitary tumors at the hospital where I work, but I was turned down because I hadn’t even seen a regular endocrinologist yet who would determine whether or not I truly “failed” therapy and thus needed to see a neurosurgeon. Thankfully, on May 20th, I had my first appointment with said endocrinologist, who would be handling my tumor from here on out. Since my prolactin level was still slightly elevated, she wanted to increase my bromocriptine dose. Sure, why not? And for awhile, it seemed to work.

Alas, a few weeks after the dose increase, I began to have side effects again that were interfering with my life and work. One night, in the middle of a night shift, I was suddenly overtaken by dizziness and vertigo so severe I was dry heaving and had to call a coworker in the middle of the night to come in and finish the shift for me.

June 10: “As soon as I left the building, I started bawling, which made me retch into the little plastic bag I had, so I made myself stop crying so I wouldn’t get sick. I somehow managed to make it home, although I don’t know how. Luckily the roads are deserted at 3 AM.”

The next time I tried to return to work a week and a half later, I had a bout of vertigo so severe that I passed out in the shower while getting ready for work. I could barely stand because of the dizziness and lightheadedness. I haven’t been able to work since that day and am now on short-term disability. I am in the process of tapering off the bromocriptine altogether at the instruction of my endocrinologist.

And then…well, I’ll let my non-edited self take over for a bit.

June 25: “I woke up wishing that yesterday had all been a bad dream. But when I realized it wasn’t, I started crying. I feel as useless today as I did yesterday. I can’t believe this nightmare I’m going through. I can’t believe the downward spiral my life has taken in the past 6 months. I think I can truly say I’ve hit rock bottom now. And I don’t know how on earth I’m going to get out of it…So in the interim, I’m just suffering.”

Finally, once the powers that be deemed I had suffered enough…

June 28: “[Endocrinologist] suggested making an appointment with [neurosurgeon]. So I just called and of course they have to review my case again. I have this feeling that they’re going to turn me down again because my prolactin is almost normal. In which case, I’m screwed.”

June 29: “On a happier note…I already heard from [neurosurgeon]’s office this morning to schedule an appointment! So we’re seeing him next Friday, July 8th…”

July 8: “Then Dr. [Neurosurgeon] came in and he was just as wonderful as I was hoping he would be. We went through how I had received the diagnosis and how I had (not) tolerated the medications and what side effects I had experienced. He then explained there were two options remaining: surgery or radiation. Surgery for prolactinomas has about a 70% cure rate and it’s actually better if the tumor is smaller, so I definitely have that going for me. Radiation (gamma knife) has about 50-60% cure rate…Based on all this, he recommended proceeding with surgery and we agreed.”

And there you have it. The big day is September 8th. Two months to go. And the countdown begins!

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