So…. I’ve been feeling pretty miserable since my last post.
24/7 migraines combined with nausea and vomiting, extreme fatigue, and another POTS flare. (This time with low bp on top of the tachycardia.)
If I’m being honest, the worst part is the fatigue. We’re talking deep down bone tired. “Can barely stay standing” tired. “Don’t give a rats A** about anything” tired. “Would volunteer for a coma” tired. Fatigue that I can’t even admit to my friends, family, and co-workers, because apparently I’m “too young to be tired.” Admitting that I’m tired only results in a series of lectures where all I can do is smile and nod, because I know I “look” healthy and they don’t understand.
I tried some drastic diet changes with no luck. (Mostly high carb raw vegan meals which used to help with fatigue in the past). I tried increasing my iron and B vitamin supplements. I also cut way back on my activities and exercise so that I could rest and save my energy solely for going to work. Nothing I normally do for fatigue is working, and I confess that I’ve gotten very desperate.
Desperate enough to start playing with monsters. Specifically….. caffeine during the day, and when necessary alcohol at night.
I call caffeine and alcohol “monsters,” because both interfere with nerve function and are typically forbidden in patients with nerve disorders. Caffeine is a stimulant which speeds up the chemical reactions between nerves, and is also a vasoconstrictor. Alcohol is the opposite, a depressant which slows down nerve reactions, and is also a vasodilator. I can speak from personal experience that caffeine is dangerous for patients with Dysautonomia/POTS. If I accidentally have too much, I crash and have disruptions in every major bodily system, and it can take weeks for me to recover. I don’t know what happens if I have too much alcohol, because I haven’t crossed that line yet, and I don’t ever intend to.
I’ve found that my current tolerance for caffeine is about 10mg. The same amount found in 1 cup of decaf coffee, or 1 Hershey’s chocolate bar. However, I need something more reliable than snacking on chocolate throughout the day. We looked for low dose caffeine pills, and couldn’t find any! The lowest dose we found was 100mg, most are 200mg (the same as 2 cups of coffee), or higher up to 400+mg. Then by luck we found these caffeine “mints” at GNC. Each are 20mg, and can easily be cut into 10mg halves. If I take one half roughly every 2 hours throughout the day, and it gives me enough energy (or at least the illusion of it) so I can get through the day. I’ve found that because it’s a vasoconstrictor, it also helps raise my low bp, reduces my blood pooling in my legs, and hides my joint and migraine pain!
It comes with side effects though…. The caffeine raises my heart rate and makes my tachycardia worse. It also seems to increase my sensitivity to light, noise, smell, and touch. The noise sensitivity in particular is a big problem since I cut my hair to a pixie, which means I can’t wear earplugs without other people noticing. I definitely wasn’t thinking about that when I got my hair cut, BIG mistake on my part…. and now I’m planning to grow it out to a bob or “lob” as soon my roots finish growing in.
Alcohol is pretty much the exact opposite of caffeine, and I’m also very sensitive to it. I use it as a sedative at night when I have a migraine so painful I can’t sleep. I mix 1-2oz of wine with 4oz of fruit juice, and it both sedates me and cuts down on the migraine pain so I can sleep. However, it also drastically lowers my bp and hr. Especially if I have it on an empty stomach, it can make me feel very dizzy like I’m about to pass out. So a word of warning I guess to other POTS patients…. if you have low bp and want to try wine, start small and have it with a BIG salty meal!
On top of my “experiments,” my primary wrote me a prescription for Scopolamine patches, to help with my nausea and vomiting. I don’t tolerate anti nausea meds by mouth, so the patches were the next best option, and I definitely recommend! My meals lately tend to be bland, chicken, eggs, rice, plain veggies, ect… but I’m keeping most of them down.
I’ve also increased my protein as much as possible to help build muscle to control my POTS, since I don’t have the ability to exercise regularly right now. I’m still having blackouts on a daily basis, but at least I haven’t lost any muscle tone.
Anyone else have suggestions?!!