Life with Gary's Ghost

Before surgery Dr T told me I'd have a 1:3 chance of chronic migraines post-op. About three months after surgery, right around when the surgery-related pain resolved, I got a headache. That headache lasted for a full year. Sometimes it got a little better, sometimes a little worse, but it was never gone. When the headache first started Dr T said it would go away on it's on. When it didn't, Dr F said to take 600mg motrin around the clock. That didn't help, either. Tylenol didn't help. Excedrin helped a little bit, but after a few weeks of it I started to get chest pain from all the caffeine and had to stop taking it. Mostly I just sucked it up.

About a year after surgery I finally went to a neurologist. She started me on nortriptyline, which is an antidepressant that can be used in lower doses for migraine prevention. The biggest side effect of nortriptyline is drowsiness, so it's supposed to be taken at night. Of course with me working night shift, this isn't always the best timing, so I experimented with times to take it and finally settled on just taking it before going to bed, whether that's morning or night. Nortriptyline takes awhile to build up in your system before it starts to work, so for the first month all I really felt was tired. Then, finally, a day without a headache! For about two months I had days, and even some weeks, without a headache. I felt pretty lucky to be cured so fast, considering many vestibular swannoma patients that end up with post-op headache battle them for a long time.

But then the headache came back. I went back to the neurologist, who doubled my nortriptyline dose and prescribed Imitrex or Motrin 800mg as needed to end a headache that'd started. The Imitrex is tricky to take. I was instructed to take it no more than twice per week, at the beginning of migraine. I don't get any sort of aura when the headache goes from baseline to bad, so it's hard to take it right at the start. Plus I was never sure if it was going to be a bad enough headache to use one of my two weekly doses. So in the end I just didn't end up taking it that much.The motrin helped, but after a few days where I had to take it nearly around the clock I started to get bad heartburn (motrin is terrible for your stomach) and rebound headaches. After the doubling of my nortriptyline dose I had a similar experience to the first time around. A month to get used to it, a couple months of feeling fairly good, and then a return of headaches.

This time when the headaches returned, they brought a new batch of symptoms. Sometime this past June I started getting waves of nausea, but at first I didn't think much of it as that's the way it is sometimes when I get bad headaches. Then I started getting dizzy/lightheaded spells. They're like when you stand up too fast and get a head-rush, but they happen when I'm just up walking around, and only last for a split second, happening over and over. Sometime in July I started getting tired. Really tired. In April/May when I had been feeling pretty good I had tried to start exercising, but with being so tired I was finding I couldn't get through the whole routine. With all these being partnered with my killer headaches, I decided it must be a head issue, and went back to the neurologist.

Because I go to a teaching hospital, the neurologist I orginially saw had graduated out of the program, so I saw a new resident, Dr D. I expected to be told that I'd need a new MRI a bit earlier than my one-year date. I expected she'd tell me they'd change around some meds and try something new. What I didn't expect is that my pulse when getting my check-in vitals would be 132. This combined with my symptoms reminded Dr D of something else - postural orthostatic tachycardia syndrome or POTS. I mentioned that I had had some bouts with tachycardia on and off since having gastroenteritis back in Dec 2010, but I thought it had pretty much resolved as I hadn't noticed it too much recently. She did a test - she had me lay down for a few minutes and then checked my pulse. It was 90-something. Then she had me stand up for a few minutes and checked my pulse again. It was 150.

In people with POTS, the autonomic nervous system, the system that controls unconscious things like heart rate and blood pressure, has trouble adjusting to changes in position. Going from a prone position to standing is something most bodies do without too much trouble, but in POTS the body has trouble choreographing the automatic changes that have to occur. In response, the heart starts racing to keep blood moving. When the heart is beating fast it's not doing its best job. It doesn't allow itself enough time to fill fully before beating again. This means the organs waiting on that oxygenated blood don't get what they should, and a whole bunch of symptoms pop up. Additionally, the imbalance of the autonomic nervous system in POTS patients messes with blood flow so it doesn't go to the right places at the right time. Symptoms can include headache, nausea, tiredness, dizziness, and light headedness.You'd be tired too if your heart thought you were jogging most of the day.

The neurologist told me I needed to go to my general practitioner for a work-up. She prescribed propranolol, a beta-blocker that is used for migraine prevention, to be taken along with the nortriptyline. Propranolol can also be used for prevention of tachycardia, so the hope was/is that it will be overall helpful. For treating headaches that already started, she said to give the Imitrex another, better, chance.

I started keeping track of my heart rate, headaches, and general complaints and saw my GP's associate, Dr N, later that week. She also suspected POTS, but drew a number of labs to rule out other causes. I had one week between when the labs were drawn and coming in for results (yesterday). In that week I felt bad. Exhausted, 'fuzzy headed', dizzy. When I say exhausted, I mean I felt like I weighed 500 lbs when trying to stand up from a chair. Sometimes I was nauseated. Sometimes my chest was tight. I marked off one-two bad headaches per day on my sheets, many that woke me from sleep. My heart rate typically ranges from 70-90s laying to 110s-140s standing. Many people asked me if I was okay because I looked so "tired".
Despite all this, my labs came back great. I don't have Celiac or Lyme. My CBC and electrolytes are normal, I'm not anemic. My liver and thyroid function is normal. My corticosteriods (I think that was the last batch of tests) are normal. My EKG is normal.

So POTS explains why I might have many of these symptoms, but it shouldn't be the cause of headaches of this severity. To check this out further, Dr N referred me back to neurology. She recommended an MRI and arteriogram to check out neuro/circulatory causes, but said she thought it would be better if neurology wrote for the tests in case she wanted to add other tests as well (might as well get them all over-with together, right?). In the meantime, to help me at least feel better, she ordered fludrocortisone. It's supposed to help me hold onto salt so that I hold onto water so my vascular system is more full and hopefully I can tolerate changes in position better. Either that, or I'll just blow up like a balloon I suppose.

I called for an appointment with Dr D soon, but the secretary said my late-September follow-up was the earliest I could get, so I emailed Dr D an update instead . I'm hoping she'll order the tests so that we can have the results for my appointment, rather than go back and forth. These headaches have beyond worn me down, and the Imitrex doesn't help. In fact the last time I took it my throat got tight and my arms got tingy - not cool.
Plus, I'd like to know sooner rather than later if there's something in my head... again.