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Finally A Specialist Who Gets It!


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On Friday I saw a neurologist who specializes - in part - in dysautonomias. She and my partner and I spent about an hour and 15 minutes talking about what's going on with my body, including a ~20 minute neurological exam (the only weird finding was that my pupils don't really react to light levels, but are not Adie's pupils, so it's probably just more dysautonomia); the rest was just sitting in chairs talking. She liked my use of my laptop. I am pleased. She even acknowledged that I had probably done a lot of research on the issue, so we didn't have to do the medical equivalent of baby talk. Win!

We started out by talking about how things started. She'd already read all of my medical history, including the Holter monitor strips from August, so I didn't have to rehash hardly anything. I gave her the quick overview (took Cymbalta, developed symptoms, started realizing I had tachycardia, stopped Cymbalta, issues persisted, atrial tachycardia diagnosed, started diltiazem, worsened things, started stockings, seem to help, switched from diltiazem to atenolol, it helps a lot) and then we went into deeper detail. It sounds like - based on her initial take, with more definitive results post-testing - I might have two problems. The lightheadedness while standing, tachycardia, presyncope, etc are likely POTS, but the eye blurriness, brain fog, digestive stuff, etc may be due to just generalized dysautonomia, since they don't seem to correlate to posture. What do you folks think of this? She seems to be more of a "splitter" than a "lumper," if that makes sense.

We talked about my history of faints and near-faints around needles (generally lightheaded, fainted in 2001, near faints twice in 2011) - she said that folks with dysautonomias often have some degree of fainting around painful/bad stimuli from a young age. She also suggested, perhaps to be done later, that I chat with one of the medical genetics clinicians who specializes in connective tissue disorders and dysautonomias. My maternal half sister and mother both have loose joints, though not as bad or as symptomatic as mine.

Short-term, we're starting with some over the counter treatments until I can get in for testing next month (tilt table, Valsalva, QSART, other physiological tests). The issue is that I need to be off of several medications before then - I was already planning on stopping Cymbalta because I can't open my jaw all of the way any more due to tension, but that will take 4 weeks to finish tapering down off of. It would be 3 weeks, but I have a conference to attend next week and Cymbalta was a terrible taper last time - severe vertigo including inability to stand, plus nausea severe enough that I spent each evening sitting in the bathroom. Not really compatible with a conference! She also wants to do some bloodwork, I think, but given my history didn't want to make me do that now. I told her I was fine with draws (pretty much true); there might be some weird standing draws and stuff to look at postural levels (lying/sitting/standing) of norepinephrine and the like, which I bet I'd find less fun.

Treatments I'm starting now (she was originally going to hold off on these until testing, but when I told her how bad things were she told me to just start now):

(1) Salt. Starting with 1 gram (a bit less than 1/4 teaspoon) 3 times daily with food, tapering up as desired to a possible maximum of 20 grams a day. Apparently even a junk food diet only gets you 5g, and I need more than that!

(2) Continuing drinking plenty of water (60-80 fluid ounces) and continuing to eat regular small meals.

(3) More compression stockings - the ones I was using before were 15-20mmHg and knee-high. I'm now (well, as soon as they arrive, hopefully pre-conference) switching to 30-40mmHg thigh-high stockings. They're expensive ($80/pair); insurance covered the last pair, so we'll see.

We wrapped up with a chat about my spacey-while-walking sensation and how nervous it makes me. I explained that I'm always too spacey to drive, but that walking is particularly bad - my concerns about going the wrong way, or walking into traffic/not noticing cars, etc were hard to get across, but I think I got some of it. She's not sure of how to treat this particular issue; we'll see if it improves with the treatments above. I'm spacey just writing this right now and I'm loafing on the couch!

I had a really bad episode yesterday - started feeling really bad after walking around grocery shopping, ended up having to sit down at the grocery store on a convenient bench, sweated a ton, held onto my partner's backpack all the way home (soooo helpful), flopped on my side and ate goldfish to kill the nausea, ended up sleeping for 2 hours.

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That sounds amazing, someone who cares! Can you ask this doctor to do a literature review? I think there might be some sources pertaining to POTS that isn't widely available on the internet and might be of some use to figuring something out. That's the one thing I wish doctors would do, research things they don't understand!

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Hooray! It makes the journey so much less frightening and overwhelming when you start to feel like you have the right "team" of physicians, working with you, not ON you! Makes all the difference in the world when a doctor displays real interest and concern, and tries to treat you as an equal. So glad you found a good one!


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