Blogging about my health seems to come in waves. I want to let people know how I’m doing, but the news usually isn’t all that great and I don’t want this space to become nothing but a boring pity party and litany of symptoms. Plus, there’s more to me and my life than dysautonomia, though sometimes I have to remind myself of this when things get really tough. Like right now.
I’ve been having panic attacks. There was a limited period of time when I was getting these regularly, and my life just about stopped. Then they went away (not magically, mind you, but with all sorts of stuff going on behind the scenes) and they didn’t really bother me again. Until December of last year.
I’d just a week or two earlier started a new possible treatment for the headaches: hormones; more specifically, birth control pills. I felt pretty ridiculous starting on birth control pills at the age of 46. My doctor and I discussed the risks of such pills at my age and decided it was worth a try to get the headaches under control.
(Brief pause for quick backstory: I’ve had daily migraines/headaches since November 2014. We’ve tried a lot of possible remedies. We don’t know the exact cause. The headaches aren’t my only problem; they’re just heaped on top of dysautonomia, which I’ve had probably my entire life.)
Unfortunately, the hormones haven’t done anything to reduce or eliminate the headaches; those are still going strong. And the birth control pills also artificially increased my anxiety levels and left me vulnerable to panic attacks. I decided to “tough it out” in hopes that this very unpleasant side effect would settle out, but after several months it’s only gotten worse.
The weird thing about my anxiety and panic attacks is that they are separate from anxious thinking. I’m not worrying or fretting my way into a panic attack. The attack can come seemingly out of nowhere, even when I’m feeling calm and relaxed. Sometimes just being in an especially loud environment can do it. I’ll get an uncomfortable tightness and even pain in my chest. My breath becomes short, quick, and shallow. I’ll sometimes flush hot or be shivering cold, or even fluctuating between these two. My heart pounds in my chest, although interestingly my pulse normally doesn’t race (though my FitBit Charge HR clocked an increase in heart rate from the mid-60s up to 183 beats per minute this past Tuesday morning). And I feel very insecure physically, as though I’m under imminent threat. It’s the fight-or-flight response in overdrive, with apparently no connection to the conscious brain.
There’s more—like the need for quiet and dark (but not too much quiet, because then the ever-present tinnitus becomes a bigger problem). I have found that getting away from people, focusing on my breath, providing myself with some cool water or hot (non-caffeinated) tea to sip, playing some soft and soothing music, wrapping myself in a thick blanket, and seeing if I can get some sleep all seem to help.
In December, I had two or three of these panic attacks overall, but now they’re coming every few days. I’m having bouts of insomnia, too, which also look to be related to the hormones. The upshot is that I’m exhausted and pretty much nonfunctional right now.
Under my doctor’s guidance, I’ll finish out this last round of the hormones and then will stop them. That’s gives me another few days on the pills, and then we’ll see if I experience any “readjustment symptoms” afterwards. I imagine it could take a couple of months to work that out, and I’m trying to make peace with the idea that I may be having panic attacks for a while yet.
In the meantime, I still have the daily headaches. Some days aren’t so bad; other days are just brutal. And all of this is happening on top of the “regular” dysautonomia symptoms that have been a part of my daily life seemingly forever.
Since the last panic attack happened in public, I’m understandably gun shy now about leaving the house even to run an errand. That doesn’t keep me entirely housebound, but it’s a significant factor. I don’t leave the house much anyway because I’m usually feeling so poorly.
I haven’t always been laid so low by dysautonomia. There seem to be “bad pockets” in which the illness just takes over my life, and these pockets usually last a couple of years, and then there will be “good pockets” where it’s not nearly as bad; I’ll still be symptomatic but not debilitated. I can map this current bad pocket back to September 10, 2006—making this stretch particularly and unprecedentedly long. I’d participated in a local river clean-up effort that day, and felt really wiped out afterwards. I’m not talking about the muscle fatigue one might get after an athletic contest; this was something much deeper. At the end of that day, I felt as though something had reached into my body and sucked the very marrow out of my bones, and the feeling—and the dizziness, fatigue, palpitations, etc.—lasted for several days thereafter, and I guess it’s actually never really gone away.
And poor Mike! This means that I’ve been pretty sick—to one degree or another—the entire time he’s known me. That man must really love me. Or he’s doing penance for some horrendous secret transgression. (We joke that it’s the same difference.)
But I do have hope that I’ll eventually find my way out of this bad pocket and back into another good one. The current thinking is it’s perimenopause that’s exacerbating my dysautonomia, and that my symptoms might actually improve once I’m through full menopause. Of course, my perimenopause symptoms first started in 1999 (when I was 29) and I’m nowhere near the finish line. I’ve often wished there were a non-surgical means of accelerating this process; if there is one, I’ve yet to come across it.
In the meantime, I keep operating in general accordance with Spoon Theory. I keep reminding myself that I’m sick, not lazy, and that despite one person’s opinion that I’m simply determined to be miserable that I am instead determined to have a real life again, hopefully very soon. Because this existence of limitation and of always having to choose the lesser evil instead of being able to reach for the brass ring isn’t all that much fun. There are big things I want to do in this world, so I keep getting up each day and doing what I can with the assumption that one day I’ll at least get to try to make those dreams come true.
Creative Commons photo: Great Blue Hole – Belize by Eric Pheterson
Any chance that you are reacting to a lack of sunlight in this winter?
Unfortunately, no. I’ve had dysautonomia — and have been struggling with these symptoms to one degree or another — all my life. The symptoms are usually worse in summer, not winter, and I don’t exhibit signs of Seasonal Affective Disorder. My vitamin D levels have always been low, however, and I’ve been taking daily vitamins (over the counter and prescription) for several years.