Hi! It’s my birthday (for a few more minutes)!
It’s also Stacey Abrams’ birthday!
Celebrate by giving a few dollars to Fair Fight–combat voter suppression in Georgia and potentially help the Dems win the Senate!
When I started writing this, I thought it would be short and snappy. But as usual, there’s a steady procession of specialists and special symptoms to address, so let’s have at it:
Mom got me a new toy for my birthday that’s actually pretty helpful for pain management. It’s an HRV monitor from Heart Math for biofeedback. If those words sound foreign to you, their website has a great explainer. In short, HRV (heart rate variation) is a great metric for tracking how well your body is functioning at any given moment. Mindfulness and meditation techniques can improve your score, and with an HRV monitor, you can find out, in real time, which techniques are most useful to your individual body. It’s pretty cool, and I can use it in conjunction with guidance from my pain therapist.
Some good news: I can sleep now! The severe, recalcitrant insomnia I complained about last time just spontaneously resolved a few weeks ago, and my headaches improved as a result. I still get migraines most days, but they’re usually milder, so I can usually continue doing whatever it is I’m doing.
The larger Vyepti infusion didn’t seem to do much, but we’ll probably give it one more shot in January. However, my latest appointment with the headache psychiatrist from Jefferson was wild! We went over the results of a Genomind test he had me take. It looks at your genes and suggests how your body is likely to metabolize different drugs. Much of this information would have been useful years ago; it accurately predicted a lot of experiences I’ve already had, both good and bad, with several medications.
There was new information too! My body has trouble with methylation, which may play a role in headaches, so I’m going to take Deplin to see if it helps. My stomach is more likely to have trouble with ibuprofen and indomethacin–which I take basically every other day for headaches–so I’m going to be a little more conservative with that. Also, I’m likely to do well on Pristiq or Cymbalta, which sometimes help with headaches (we’re trying Deplin first, more meds later).
Martin has had huge success with Abilify, but also relapses. Never a dull moment with this condition!
Over in CFS world, a number of severely ill patients improved dramatically this year, with small amounts of an antidepressant called Abilify. By dramatic, I mean bedridden patients who were on feeding tubes are now able to move around and eat normally. No studies to back it yet, it’s all very new, mostly from researchers at Stanford; I should also note that some of the patients who had dramatic improvements also had severe relapses later, so there’s a lot we still don’t know. The Genomind test actually suggested I might have trouble with Abilify, but we’re going to start really, really low. Could be big, could be nothing, could be big and then fade to nothing–we’ll find out!
I tested positive for small fiber neuropathy back in January. It was a semi-hopeful event, because the standard treatment is IVIG, which can also be incredibly restorative for ME/CFS patients. It’s not a pleasant ongoing treatment, and there’s no guarantee, but I was stoked to try it.
The neurologist I wanted to see about the neuropathy insisted I get a skin biopsy to confirm the blood test before I could even make an appointment. It took forever, but I got the biopsy, and it was positive. I finally got to the appointment with the neurologist in November (11 months after that initial test!), she did a simple clinical exam, and she said I don’t have neuropathy. I’m still unclear on why I had to get three permanent scars on my leg before seeing her, if the basic clinical exam ultimately takes precedence, but she also had me get some special blood work done at Georgetown to figure out what caused the biopsy results. It could be a few different things, which may or may not require IVIG. I’m still waiting on the results.
Automatic blood pressure cuffs FTW!
In the meantime, my POTS has been pushing past my meds. Lately, when I stand up for more than a minute or two, my heart rate quickly climbs into the 100s. Postural Tachycardia Syndrome (POTS) is separate from but extremely common in ME/CFS. Basically, when you sit up or stand up, your heart rate quickly increases by dozens of BPM. For some people, it causes dizziness or fainting, and there are some folks who literally can’t get out of bed without passing out. Fortunately, my POTS is not nearly that frightening. It’s been fully controlled for years with just a small dose of atenolol. I need to take a few more blood pressure readings for my cardiologist, but most likely, we’ll simply increase my dose a tiny bit, and all will be well again.
Anyhow, I had some delicious birthday pie tonight, and I need to make sure there’s no leftovers. You know, for science.
If you need some lush, ambient tunes to bliss out with (perhaps to honor today’s tragic passing of Harold Budd), my dear friend John Thayer just released a really lovely album. Conversely, if you need to explore new rhythms and fresh grooves, don’t sleep on Jeff Parker or Tom Misch.
Oh, and if you hate politics, but you need to throw your money somewhere, #MEAction is doing great advocacy work, not only for ME/CFS patients like me, but also for Covid Long Haulers (whose symptoms are almost indistinguishable from CFS). If you have dollars to spare, you can give them in my name, and they’ll put ’em to good use.
And that’s all I’ve got! Wear a mask, and I’ll holler at you later!
-Ryan
PS If you’re still catching up on my overall health story, here are the Cliff Notes. If you want these updates to land in your inbox, just head to my profile page, scroll past the subscription levels, and click Follow (it’s free!). And if you know happen to anyone who might be interested in this stuff, for whatever reason, feel free to share!
