The New AN (that's not a tumor)

Some months ago, in my last post, I talked about the testing I'd had done so far for the problem of feeling crumby all the time. If you read that last post, you may remember that I started at neurology, as I thought the continued headaches, dizziness, nausea, and exhaustion was all related to that history of craniotomy for vestibular schawannoma. I was sent around to my general practitioner and cardiology, picking up more tests and meds along the way. I even saw an electrophyiologist for a pretty disheartening appointment where he pretty much said I have some minor problem on the spectrum of vasovagal issues, and that I should keep on taking my meds and expect to have 'episodes' from time to time, because that's just how it is. He said he could increase my fludrocortisone dose ("Some professionals would say to keep increasing it until your swollen all over."), but I might have more headaches from it. So I said no thanks. I asked if this meant a lifetime of medication and he said they're hopeful I will kind of grow-out-of-it (my words, not his), but possibly yes.

Ultimately, I was sent back to neurology for some autonomic testing. Due to doctors leaving the clinic and them accidentally scheduling me for the wrong procedures, it took awhile to get in for the testing. I didn't know what to expect going in to it. I was just told 'autonomic testing'. All in all, it was about 5 or 6 tests over the course of about 2 hours. I found a nice little video online that shows most of the parts, in case anyone reading needs to have this done and wants to know what to expect.

The tests included a sweat test, where some little suction cup things were stuck on my arm and leg and filled with a fluid, and some monitor leads attached to measure sweat output. I was told it may be a little 'warm' feeling, but it was more like intense tingling and electrical-type-burn feeling than it was warm. Not very pleasant at all. After that, I did two breathing tests while my heart rate and blood pressure were monitored. In one I had to breathe in and out slowly for a couple minutes, and the other involved blowing against pressure for about 30 seconds and then laying still. There was another tilt table test, but this one was only 10 minutes and didn't involve isoproterenol, so it wasn't so traumatic. Finally, two more tests that weren't shown on the video, one with a little vibrating thing on my toe and another with a little puff of air, where I had to say whether I could feel it or not.

Then, I sat around for awhile while the doctor looked at my results. I was surprised he was doing it right away instead of scheduling a follow-up appointment. Maybe that's standard for this kind of testing, but I generally consider it a bad sign when they want to look at things right away vs waiting to call you sometime later. The first thing the doctor (Dr. R, who has among his credentials Director Autonomic Nervous System Disorders Laboratory) said when he came in was something like, "Well, what you have is more serious than just POTS." That wasn't what I was expecting. I was expecting what I'd heard from every other test so far, which is something to the effect of "hmm, looks okay.."

Dr R said that my responses to the sweat and cardio portions of the test (at least I think he said cardio... cardio-something? Anyway, the breathing parts, I think.) were abnormal. He was especially concerned about the sweat part. Apparently I didn't sweat like at all, which is news to me, as it was just last summer I was complaining about the ineffectiveness of the cheapo antiperspirant I bought. However I have noticed that I'm always either hot or cold, almost never just right, so maybe it's related. He said I would have to be very careful in the summer to protect from heatstroke - stay in the air conditioning most of the time and stay in the shade if I'm outside. I'm too be drinking 3-4 liters of water a day anyway, but especially when it's hot. He said I definitely have the tachycardia going on, but my blood pressure didn't drop significantly during the tilt table test, so that's good.

Dr R called my problem "autonomic neuropathy". He asked if anyone else in my family had it, as it can be hereditary. As far as I know, however, no one does. He asked when I "first realized there was an autonomic problem". I was thinking 'well, just right now', but figured he really meant when were the first significant symptoms so I said last summer was when Dr D first brought up my tachycardia. He asked "how are you doing with the POTS?" so I guess I am officially diagnosed with that, too, despite what cardiology says. I said I'm either exhausted, nauseated, headachey, or with an upset stomach pretty much all the time, but I guess I'm not feeling my pulse racing as much. Unlike the cardiology people, Dr R didn't write everything else off when he heard I've never really passed out.

For the most part I was kind of just listening and nodding my head, but I'm not sure much of what he said was absorbed. I do remember the heat thing, and that it might be hereditary, and that it might be fixable if it is hereditary, but probably not. He said we would start investigation into this, but my next appointment with him isn't until July (his first available!). In the meantime, I follow up with my regular neurologist in April.

I see my general practitioner this friday. I hope she received all the reports from all my tests and can help me sort them out. I'm so confused. I feel like one doctor says I don't have a problem, the next one says I do. One doctor says let's increase this med, the next one says I probably don't need it. One concern is the fludrocortisone. My GP, who prescribed it, said she didn't intend for me to be on it long term, as it could shut down my adrenals. At the same time, I shouldn't just stop it, as then I could have an adrenal crisis. Hooray! Otherwise, I'm already on all the meds that I've seen listed as supportive therapies for autonomic neuropathy / POTS (florinef, propranolol, pamelor).

I've been trying to read more about autonomic neuropathy, and I guess I just don't really understand. I wish I knew specifically what was abnormal about my tests. I read this, and tried to recreate in my head what I felt, since I felt my pulse in my finger and the back of my head, and take a guess as to its rate and how it related to the test.

I understand the words autonomic neuropathy. I get that it's "a group of symptoms, not a specific disease", but then, what is my specific disease? I see POTS as being within the category of autonomic neuropathies, so why did Dr R say it was "more serious than POTS"? Is it POTS with extra autonomic issues? Or just like, dysautonomia NOS?
I want to know more about the cardio tests, and should I be afraid? Dr R said I should be exercising on a recumbent bike, and advised against other exercises (anything upright, which is pretty much everything) as I could pass out. This was just before I was about to start a new exercise program with Matt, so that's a bummer.

Some of the things I read don't sound so bad, like that people with POTS can get better, and at least I'm not bed-ridden or severely disabled like some people end up. But then I see other things about autonomic neuropathy and how it's progressive. "Many cases of autonomic neuropathy have a gradually progressive course, leading to a poor outcome. Patients with severe dysautonomia are at risk for sudden death secondary to cardiac dysrhythmia" and "Many complications of autonomic neuropathy exist, as described above. The most severe are cardiac arrest, cardiac dysrhythmia, blood pressure fluctuations, and risk of cerebral and cardiac ischemia" (from Medscape Reference).

Honestly, that scares me. Given my family history of high cholesterol and heart disease, I feel like a heart attack is pretty much guaranteed for the future, I don't need any more risk.What scares me more is to think that I might feel bad for the rest of forever.

Currently, I wouldn't quite say I have good days and bad days, more like okay days and bad days. My headaches are much better controlled since switching to day shift. I did acupuncture for awhile but I didn't notice a big enough difference to justify the weekly time and copay expense. Every third weekend I work night shift, and it's then that I can really tell the difference in how I feel. I still have some degree of headache most, if not all, days, but they're generally not as severe or long lasting, unless I've worked a night shift.
My GI symptoms seem worse. I get random bouts of terrible dry mouth, even when I am drinking a lot (haven't quite made it to 3 liters yet, about 2.5 is as much as I can do), and my upset stomach bouts can happen randomly a couple times a week, instead of a couple times a month. They do sometimes interfere with what I want or need to do, like the other day when my GI system decided to freak out in the middle of morning shift report. I'm nauseated much of the time, too, especially after I eat. At work I try to plan eating times for times when I'll be able to sit and chill for a bit afterward.
I spend most of the time exhausted. Not just tired, like "I stayed up a little late" tired, but more like "the fact that I can't close my eyes right now is causing me actual, physical pain" tired. It doesn't matter how much I sleep.
I'm always cold, especially my fingers and toes, and my nails tend to look kind of purple. I get tingly, shooting shock type feelings in my arms when I move them certain ways, but I can never seem to reproduce it in order to figure out what those ways are. And forget trying to stand with my arms over my head, I get crazy dizzy and sick.
I sigh a lot, and tend to feel kind of short of breath. It's accompanied by a weird sensation in my chest that's hard to describe, it's kind of like my heart's racing, even when it's not. Like nausea in my chest instead of my stomach, if that makes any sense.  In the morning especially my heart does race when I'm upright, but with the beta blocker it's more from 110s to 120s (though I did get a 130 the other day) instead of 140s to 150s. Some days my heart behaves itself. Recently my pulse was in the 70s all day. I've never had a day so low that I can remember.

For the most part, the tachycardia episodes have resulted in a couple day-to-day changes that make me look lazy. If I get right in the shower after waking up, I have to sit down while washing. So, if I've no where to be in the morning, I generally don't shower or get out of pajamas until the afternoon. I also have to sit while brushing my teeth and whatnot in the morning, as well as during morning shift report at work. If I try to ignore the sick and dizzy feeling and just decide to 'be okay', it will just get worse and take longer to recover from when I do give up and squat or sit down.

I did find this article ("It's Dysautonomia, Not Laziness") that made me feel a little better. I don't really look like I feel bad or am 'sick', and try not to whine so much in the normal day-to-day. A coworker recently asked how I've been doing since surgery and when I told her honestly she was surprised - "You don't look like you have a headache everyday!" I've also had people tell me, "You don't act like you have a headache everyday!" This is good, as I try not to look and act this way. But I've had some teary moments at home since my testing and appointment with Dr R, as I've thought about how much worse things are this year from last, and how if they continue to get worse, this stupid problem is really going to get in the way of life. It shouldn't be a big deal, but thinking about how I probably won't be able to take my kids hiking in Grand Canyon, for example, is really bothering me.


"Sticks and Stones; when the media perpetuates the myth" - about how it's not just all in the patient's head
"If you know someone with dysautonomia" - Explains in simple terms what to expect from someone with dysautonomia