A little while ago, I started having fainting spells again, episodes where I’d lose all my strength — kind of like it was being flushed right out of me — and I’d collapse. It was all very familiar, and therefore disheartening, as the last time I was having these symptoms, fixing a hole in my heart made everything better.
It had been about a year and a half since the surgery and I had been feeling really good, so initially I thought it was just stress. My regular doctor put me on a beta blocker which helped though initially it made me feel like poo-cakes. (I imagine a poo cake would feel very lethargic and lumpy, heavy and blobbish, which is how I felt, minus perhaps the odor and resultant flies. I am resisting the urge to draw a sad poo cake. You’re welcome.)
I followed up with my heart surgeon as well, and he agreed that the beta blocker was a good idea. Both docs were fairly cautious about it as my blood pressure already runs quite low, so I am on the lowest dose of Propanolol. A beta blocker reduces your blood pressure further, but they thought it might help even out my heart activity and prevent the fainting.
I joked that it felt like I was in the throes of a first trimester pregnancy, though without the vomiting. The beta blocker made me feel really drained and fatigued to the point that I did stupid things like put the mail in the freezer. (I can’t believe I can’t find a Parks & Rec still of Andy’s bills in the freezer!) But, after about a month on the little blue pill, things improved, though I still felt like I was running only half a battery charge. I’d still get dizzy and weak and could sometimes collapse, but the beta blocker seemed to keep me conscious (even when I hit the floor) and the episodes became less frequent.
My heart doctor would like to do some of the bubble tests I had pre-heart surgery: an ECG (echocardiogram) and TCD (trans-cranial doppler). He wants to make sure there is nothing wrong with the Gore Helix device he used to patch the hole in my heart, as well as check the three bad valves they found last time. He wasn’t terribly concerned about the valves, and thought the heart repair would have helped reduce the strain on them, but it’s a good idea to get them checked out anyway just in case they might be contributing.
The heart doctor also diagnosed me with POTS which stands for Postural Orthostatic Tachycardia Syndrome. Quite a mouthful, eh? A lot of it fits, but one thing doesn’t – I don’t pass out / have an episode only when moving from one position to another. I can blank out while lying down in bed reading. It’s all very odd, but so is POTS in general. It’s basically a diagnosis for people who black out when doctors aren’t 100% sure why. There is usually a trigger or a cause of some kind, but it can be different for everyone, and difficult to suss out.
The diagnosis has been validating though. Tracy has been diagnosed with it as well, though hers is more complex with her Ehlers-Danlos Syndrome (← I drew her a comic for her diagnosis on that link, it’s cute, you should go look at it.) Tracy sent me some of the research she’s done; one study stated that it takes patients with POTS three times the amount of effort / energy to do any one task. So when you stand at the sink to brush your teeth, it’s like nothing, right? I stand at the sink to brush my teeth and by the end I’m out of breath, gripping the counter, and I have to sit down for a while.
POTS patients have been reported to suffer from a degree of functional impairment similar to that seen in conditions such as chronic obstructive pulmonary disease and congestive heart failure, yet these patients are all-too-frequently misdiagnosed as having severe anxiety or panic disorder. source
This was nice to read, as I would sometimes feel like I wasn’t being tough enough, or that I was somehow not trying hard enough to ‘shake it off’ when I felt wiped out.
The timeline blurs a little, but I think two weeks ago – maybe three, the huge rash I battled for 10 months back in 2010 re-emerged. I wasn’t terribly surprised to see it, once you have idopathic (unknown cause) chronic (lasts months instead of weeks) urticaria (ridiculous, huge, puffy welts that itch like crazy), you’re very likely to get it again. I don’t want to jinx it, but the rash doesn’t seem quite as bad as it was last time, and the facial swelling is less disfiguring, but that could be because I knew the drill and got right on high doses of generic Benadryl and stocked up on Benadryl gel. One study about POTS examines a dermatological connection, so everything could be related.
The anti-histamines on top of the fatigue-inducing beta blocker resulted in a fairly comical picture. I felt so drugged and barely had the energy to get myself to the bathroom. I was really grateful that I’d stepped back from work, that we’d reduced our monthly overhead by selling the house, and that E. had secured a really great job. If I had still needed to work I’m not sure how I would have managed.
Just this week my episodes have worsened. I can have nervous system seizures (different than regular epileptic brain seizures, but they look somewhat similar) and my weak episodes ratcheted up to crazy levels of near-unconsciousness, where breathing takes a monumental effort and I go numb all over. After that, the seizures start, and those feel like they are trying to jump-start my system and reboot everything. Sometimes I’ll go in cycles weak / seize / weak / seize for a few hours. It’s exhausting. (My mom is here helping, and y’all know I have the best friends ever. I’m super lucky to have such a great support team.)
My team of doctors and care providers are involved, and we will get the ECG and TCD scheduled ASAP, and I’m going in to the hospital this morning for a host of blood tests. While I thought my thyroid was under control, I think it may be seriously out of whack as adrenals are screwy again as well, so I’ll be doing a 24 hour saliva (ick) cortisol test as soon as it arrives.
I do hope this will all be a very short blip and I’ll get back to normalcy quickly, but am also bracing myself for a bit of a long haul since it can take months to correct adrenals and thyroid. I hopefully will not require any further heart surgery, but if I do, we will at least have good medical coverage this time. That in and of itself is worth a bit of a celebration, yes?
If you fell asleep during my symptom list, don’t worry, I have a hopping playdate with some lovely senior citizens I met by the dairy products. We’re going to get together and compare ailments. It’s going to be a blast.