In July of last year I had a cluster of 'real' migraines. For some years I've had clusters of auras without other symptoms, but these came with light sensitivity, nausea and headaches as well. I've only had a handful of those in my life and each time, as with the first of these, I haven't recognised what they were as they happen so rarely.
Over time the headaches stopped, but I developed other visual weirdnesses and the nausea became near-constant - never gone, although sometimes better and sometimes worse. In recent months I've developed huge fatigue, too. Issues with swallowing that I had a few years' back have returned, and haven't gone away with a medication increase.
As it's gone on longer I've at least become able to describe what's going on better and better, and my GP is trying various things. I've also found some things to try myself, as well.
- I'm on a lot of medication. The GP wonders if part of what is going on is medication interactions, and she wants to be sure I need everything I'm on. She's got me to stop two pills and I'm now tapering off a third. So far nothing seems to have changed.
- The swallowing issue led to a gastroscopy, which suggested I might have H. pylori. A test showed that I don't. I was gutted by that, to be honest, as that's pretty treatable and it seemed a good fit for a bunch of my symptoms!
- I went to the optometrist about the visual weirdness - basically asking if there was anything wrong in addition to the migraine auras. It turns out my eyes are super-dry, and I've been prescribed drops every hour or so (!) which have helped heaps. I no longer have blurry vision or blotchiness in my vision, and my eyes don't hurt. I do, however, appear to have developed a second kind of migraine aura in addition to the form I've had since I was a teenager.
- I've realised I also have a really dry mouth, which may be causing my current swallowing issues. The optometrist suggests the dryness could be due to a thyroid issue, a specific medication side effect, or due to an autoimmune disease. The medication I'm tapering down is the one that might be causing the dryness. If that doesn't help, my GP thinks it's most likely I've developed the autoimmune disease (where your body attacks mucus-producing glands), as a recent thyroid check was fine. Hurrah :-( I'm down to a 2/3 dose of the medication with no improvement as yet.
- A while back the GP did a of check of my eyes, and commented that I had some vertigo. More recently I've realised that my nausea seems quite independent of my migraine auras now, but that it's very much exacerbated by various physical activities. When I had concussion that also happened, and it was resolved by exercises aimed at systematically causing small amounts of nausea so that your brain stops reacting to those activities. I've looked over the notes I made back then, thought about which activities are problematic now, and have made myself an exercise plan. One week in I now have three things I'm doing 1x per day, resting immediately after. They each generate nausea which resolves within 30-60 minutes. As of today I've done them for three days in a row at the same level, so from tomorrow I'll start increasing either duration or intensity. Hopefully over time this will 'cure' the vertigo.
- I also have a lot of pain that seems to be significantly associated with bloating. A friend who is a naturopath has given me a tea to try which might help with that. I'm taking it 3x per day for two weeks, then will try without it for two weeks and see where I'm at. I think it's helping a bit, but certainly hasn't been a magic bullet.
- With my fatigue, my days have become very unpredictable. Some days I can be up my 'standard' 7 1/2 hours. Others it's only two. A week ago I decided to try some strict pacing, rather than being responsive to how I'm feeling day to day. I've been up 5 hours per day since (roughly 2h in the morning, 1h for lunch, 1h30 in the afternoon and 30 min for dinner). I was feeling like life was getting more predictable, but then today I've been shattered, so I don't know. I went to about an hour of church yesterday (the latter 45 min of the service then some chatting after) - maybe that's more than I can manage right now? Or maybe 5 hours per day is too much and after six days of that I've crashed?
- Other than my specific nausea-inducing exercises, I'm trying really hard not to exacerbate my nausea. That meant it took 10 minutes to walk to church yesterday (rather than the usual 4), and about 12 minutes to walk home. Oddly, cycling causes vastly less nausea than walking, so I'm going to try biking even for little local trips for the next while. Usually I try to do a 15 minute walk any day I don't do 'proper' exercise. Maybe I'll be able to resume something similar soon, but by bike instead of walking.
It's not much fun, but I'm feeling hopeful about the vertigo plan, and am grateful my GP is such a careful listener and believes what I'm saying and is trying to figure it all out.
Since this all blew up we've done one camping trip, which involved about 10km biking to get from the Beachlands ferry to a new-to-us campsite (Te Wharau in Duder regional park). I didn't do a blog post as I didn't have the energy, but here's some photos from the trip :-) I found the biking there and back a bit of a slog and not much fun, but it was also very doable and resulted in a peaceful few days in a lovely spot!
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| Stopping for lunch en route |
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| We were quite near Ardmore, and saw lots of small planes, but these three WW2 ones were the coolest! |
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| With the embroidery I was working on :-) |
We're currently hoping to do another camping trip over ANZAC weekend :-)
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