peregrine

Both the neurologist and the medical genetics/joint doctors have prescribed (heh) daily exercise in the form of swimming, recumbent exercise biking, and guided (through a trainer) weight and core work (more for the joints). Obviously I don't wear compression while swimming, but should I be wearing it while biking and doing weight/core work? Are there differences between e.g. stockings and abdominal binders in terms of what one should wear while exercising? Not sure about the sweating versus compression tradeoff.

I got my B12 taken as part of a workup for small fiber neuropathy that showed up on a QSART last month - so we had a symptom and a prior test result, thus insurance didn't seem to have a problem covering it. My B12 was 417 a month ago, and my neurologist (who's a dysautonomia specialist) said it was a fine level. The reference range they gave me was 180-914; not sure to what degree reference ranges really are "normal is within this range, doesn't matter where!" or are "well, try to be in the middle of the reference range, please."

Had severe fatigue with atenolol - I thought it was the POTS until I stopped the atenolol and suddenly was - shocking! - less tired! The propranolol (a less selective beta blocker) is causing no obvious fatigue, which is amazing.

I love them both canned (pickled) and baked (with some garlic and goat cheese - yumm) - we grow them here in our home garden. So delicious!

Currently on it - we started at 5mg twice daily, now at 10mg twice daily, with an ability to increase as needed (my decision) to 60mg twice daily. I'm not getting the severe fatigue that I got off of atenolol, so I'm personally liking it more, although I think at 10mg twice daily it still is a tiny bit less effective than 25mg of atenolol daily. I'd just try to wean onto it very slowly; my neurologist says that she's seen POTS folks respond at much lower doses than a cardiologist would find believable, so don't be afraid to start small :^)

Yeah - my doc says that she's only interested in one test in the paraneoplastic panel, but it will be interesting to see the results (and I want to know what's on that panel!).

Mine didn't say anything (and I'm having the draw Monday too! we can think of each other, or something), so I'm guessing no. She was pretty good about telling me very carefully the going-off schedule for my meds for my TTT, so I think she'd remember.

Katie, are you talking about the Mayo's Paraneoplastic panel, among others? My doc is having me get blood for that one drawn on Monday when I get back to Seattle, although she says she only wants the antibody against nicotinic ACh receptors so she can look for autoimmune autonomic ganglionopathy; apparently Mayo will do the whole thing only, so I guess I get more results for my expense. She's also sending blood there to look at the TTR gene for amyloidosis (which can cause similar issues). Our plan is to have blood for both drawn here in Seattle, and then Mayo will do the tests and interpret and send the results back. In my case we're doing this because the more common reasons for autonomic small fiber neuropathy (diabetes, HIV, B12 deficiency, and Sjogren's) were negative in the labwork, and she wants to see whether anything else might be going on. We'll see if it's useful :^)

I was on diltiazem for three months for what my cardiologist said was just atrial tachycardia but probably also something autonomic; it made my symptoms worse, though not severely so (although it did slow the heart rate) but the big issue was that it caused edema, so I stopped taking it. I'll note that in my case simply slowing the heart rate down didn't cause it to worsen my issues, since the beta blockers I'm on now do slow the heart, but also make me feel much better! YMMV.

Sudden appearance and good days/bad days (as in "it's always bad, no remissions, but some days are okay and some ****"). My personal theory is that I've been pooling for some time, either due to small fiber neuropathy-induced pooling or connective tissue issues, and that starting Cymbalta messed with my sympathetic nervous system, making the issues rise to the level of observable and problematic. The only reason I've got this hypothesis in the first place is the weird hyperadrenergic/pooling thing my neurologist went on about after my testing, and the sudden appearance of symptoms despite no obvious insult (viral illness, accident, other sickness, surgery, bed rest, etc) :^)

Those are the numbers I've heard too. lemons - hopefully your blood volume would increase! I found post-diagnosis that I don't acclimate nearly as well as I used to, so I never quite get to being comfortable at the altitude I'm sleeping at (say 10,000 feet), even after a week sleeping at that height.

Oy vey. Yeah, I figured this would happen, plus anyone can read your posts even if they don't have an account, which makes sense from the point of view of helping folks. For this reason I use a different alias than I use for my other accounts (and of course from my real name) and don't use a picture that's otherwise linked to me, but then I might be being a bit paranoid :^)

bunny: Makes sense (re: both blanket and shower issues). You can always pretend that the stool is there to help you wash your legs (which sometimes helps for me when I'm feeling particularly miffed about needing it). Mine is from ikea and therefore doesn't feel quite as "medical equipment" if that makes sense. Regarding climates - I live in Seattle which is warmish in the summer (70s-80s) and coolish in the winter (40s, sometimes down to 30s or up to 50s) and it's pretty good, although I'm worried about the combo of compression gear (stockings plus binder) with the heat.

I tend to eat organic produce because we do most of our shopping at the local (organic) farmer's market and grow our own organic veggies, plus we drink organic milk and eat organic eggs (due to the taste in the former case, due to getting free range eggs - as much as free range commercial eggs are free range). But I don't really have a propensity towards eating organic, it's just that that's what we do.

A bit complicated - I have a neurologist who does pretty much all the treatment, my primary care doc who is just getting the hang of things but did a lot of the initial workups (Holter, bloodwork, etc), and a cardiac electrophysiologist who thinks I have some ANS symptoms but that it's mostly atrial tachycardia (she's wrong, but whatever). Since it's just the first year, the cardio hasn't talked with the neuro yet (I haven't had my cardiac followup yet), so we'll see what happens. Probably will add a new rheumatologist into the mix if the genetic counseling comes out the way I expect.

I said low BP, because, in the end, that's what the TTT showed right before they lowered me back down. But my BP fluctuates wildly when I stand, so it's not entirely accurate. Weight gain of about 30 pounds in the last 6 months due to first edema and then actual weight gain, almost certainly from beta blockers.

My primary care doc (who ordered the Holter) asked me if I wanted a copy, then a packet about 1" thick arrived in the mail. It had strips (the EKG waveforms) from my highest and lowest pulses, plus strips for any time I pressed the button or recorded symptoms (although their timing was a bit off, so I had to correct it with my doc; I was more precise than they were!), plus a strip every 10 minutes for the entire 24 hour period. The cardio I saw first was so happy I'd brought it - he said it was amazingly valuable and to bring it anytime I saw the doc, since he couldn't access the raw strip data and it was critical to see it. So you might ask the doc who ordered it if you can get a copy to bring to other doctors appointments. They might make you pay a nominal fee, but you can at least just ask for the same format I got or something similar.

bunny, have you considered getting a heated mattress pad to put on your bed? Mine has two zones with separate controls (one for me and one for him), and it allows me to "pre-heat" the bed before I get in. I usually turn it off or turn it to low at that point so I don't overheat in the middle of the night, but you might find it useful. Unlike an electric blanket it has a 10-hour timeout, so it runs all night long. The only problem I have with them is that they tend to lose effectiveness after a few years of use, but they have a 5-year warranty and have been happy to fix them in the past (you just ship them back after calling the company). When I'm super-cold I'm like you - I need an external heat source. Electric blankets are my choice unless I need to shower - I agree, then I get lightheaded! No fun. (thank goodness for my shower stool)

Yeah - it started with normal rate/deep breathing and then worsened into hyperventilation. Maybe I'm weird? Maybe it's the asthma triggering some sort of reflex? Who knows :^) The fun and joy of a complex and diverse set of syndromes!

I haven't been accused of drinking/drug use yet, but I have this concern that when I fly someplace (which I do from time to time) I will have increased security screening because I'm sweaty, pale, shaking, etc (plus the fact that I opt out of advanced imaging technology, so am already having a patdown). I know profile-based security looks for people who look nervous, but I swear I'm innocent of anything besides having a poorly functioning ANS :^) My best explanation for my spaciness, which is something any doctor will appreciate: "You know when you're sitting in a seminar, and all of a sudden you realize you were kind of not paying attention, the speaker is several slides ahead of where you last noticed, and you have no clue what happened in the interim? It's like that! But all the time." Everyone gets it (both in my field, science, and doctors). My favorite "tweaking healthy people full of advice technique": The person asks what's wrong, you explain that you get lightheaded standing up and can pass out. They suggest that you are dehydrated and need to drink more! You tell them how much water you drink every day. They shut up. (hopefully they continue not suggesting anything)

I have word-finding issues when I'm doing poorly; I also tend to substitute the wrong words for things I know very well, which is annoying. My hubby says he's never noticed it being particularly bad, but to me it's not something I had trouble with and now I do it all the time. And... now that you mention it, it is worse when I'm not sitting with my legs up. I recall many events of staring up into space (or the blue sky) trying to remember a word, and all of them involve me standing up.

Sometimes - I notice it especially when I try to sleep on my left side (not always, but often). The palpitations make it bad enough that I have to roll over.

When it shows up depends for me, but stress is regardless really bad for my system, especially my POTS. If the stress is something that has no *absolute* deadline (translation: grant proposals are an absolute deadline, doing an experiment is not), then the POTS gets worse and I often end up putting the experiment or similar thing off until the next day when I hope to be better. If it's an impending absolute deadline then I power through it (for some reason the brainfog stays away then, wish I knew why, probably triggering my SNS?) and then fall over for several days afterwards. For recovering... I try to take a few days off. Lots of baths (my positive symptoms from warm baths and showers outweigh the negatives, thankfully, otherwise choose something hopefully as relaxing), tea, watching movies I've seen before or rereading comforting old books, naps, meditation, staring at funny videos on the internet or pictures of pretty places, etc. Basically anything you find that lowers your stress, relaxes you, and makes you feel like you're babying yourself.

I just started it 3 days ago after being off of atenolol (my previous best friend) for a week and a half for autonomic testing. Within that period (especially the last week after the atenolol was completely gone) my heart rate soared, I was out of breath just walking up a gentle slope, etc. I'm currently on 5mg twice daily (what a tiny dose) and already am doing better; today I was able to stroll through the aquarium for two hours with only two sitting breaks! Plus my standing heart rate was down to 80bpm instead of my usual off-meds 120-140bpm. Generally feeling better, too - much higher energy than on atenolol, whose only big issue was that it caused fatigue. Doctor says I can raise the dose up to 60mg twice daily, but I'm pretty sure I'll not move it much beyond this given how effective it is at such a low dose. The one thing to watch out for is bradycardia - my doctor said this was the one bad side effect she wanted me to keep track of, and to stop any tapering up and email her if it happened.

A rhyme a friend taught me: "30 is hot, 20 is nice, 10 is cold, and 0 is ice." Maybe we could rewrite it for the temperature-sensitive folks: "30 - far too much, 20 might be okay, 10 can be cold, and 0's a very bad day." (or something like that - my poetry is not up to snuff this morning)