peregrine

Sitting BP ranges from 100s/60s to 140s/80s, depending on when it was taken. All of those values are from the doctor's office; I don't have a home BP cuff. While standing (from my TTT) it fluctuated badly - up and down, not just stable and then down, or stable and rising. Confused the doctor quite a lot. The note was "Excessive oscillations in mean BP > 20mmHg for more than 50% of head-up tilt duration." But I'm not sure what it does during normal standing; we've never done the poor man's tilt table (though I've done it at home with just heart rate). Been thinking about a portable BP monitor...

Let's see... things that may help before the appointment: (1) Read up on various things that the doctor might mention (tests like tilt table testing, etc; medication options; symptoms) so that you've got a little background and aren't spending time trying to understand some of the basic stuff during the appointment (2) Make a list of your symptoms, definitely. When I saw my autonomic neurologist for the first time I had "symptoms at rest," "symptoms while exerting," and "constant symptoms." They will probably ask you for a series of weird symptom reports - do you cry more/less, sweat, etc. Worth thinking about those in advance. (3) Like you said, think about questions. I asked about testing, treatment, prognosis, what types of exercise I should think about trying, under what conditions I should go to the ER, etc. My doctor gave me a really good article by Dr. Grubb, but unfortunately I can't find it right now. It had a nifty flowchart talking about ways to treat POTS (different steps, things to try, etc) and I wish I had the citation to give you... will try to find it!

Cat_Lady - could you explain a bit about the asthma issue? I've been short of breath somewhat on propranolol and am curious to hear more. I was on atenolol beforehand (before they wanted me on something less selective, heh), and while it was a wonder drug from a functionality point of view, I was very tired all the time. But it did work very well otherwise! And no other side effects.

Mmm, forgot to add - my ANS neurologist told me that the thing to watch out for (for me, at least) dosage-wise on beta blockers (well, propranolol at least) is bradycardia (if the dose is too high for you) - so if you aren't having any obvious interactions, and your heart rate is doing okay, you might be all right. (my resting heart rate sitting on the couch just now is 55, which is low. time to start taking it more often now that the BB dosage is increased)

I started fluoxetine (Prozac) last week. My psychiatrist didn't seem to think it would interact with anything, though an interaction checker implies that it might result in elevated plasma levels of the beta blocker. No obvious interactions (though I am on a tiny dose of fluoxetine, 5mg, the max is 80mg per day) yet - I am actually ramping my BB up to see if it helps with the spaciness at all.

Hunh - I hadn't seen those (and perhaps she hadn't either, although that would surprise me somewhat). Is there a way to distinguish between the two? (and - curious - what are the cites on those? I'd love to read them!) Thanks :^)

Anything that sets you off in particular? Perhaps stair climbing, bending over, arms above your head... the poor man's tilt was definitely a good idea.

Also with the pooling - I thought that I didn't have it in my legs (though compression felt nice, I never noticed pooling) until I took my compression stockings off at my autonomic neurologist's office during the initial visit, and she looked at me a few minutes later and said "you're pooling, by the way." The skin wasn't hugely obviously different - maybe just a little more mottled - but not something I would have noticed on my own. It was really obvious on my TTT, when I didn't have compression and wasn't using muscular control to stay upright. (I'm not trying to say you do pool, just sometimes it can be hard to tell and I thought that I didn't until I saw this neurologist)

Propranolol 20mg twice daily. I was on atenolol (25mg once a day) but then we switched to try to get a less selective beta blocker (propranolol).

My antibody titer was negative, though I (hilariously) haven't had my norepi/epi/dopamine tested. (the bias I meant was mostly that folks who are interested in the topic will take the poll/comment here, folks with certain presentations may have been more likely to be tested, etc. not bias in a bad way, just sample bias)

Keep in mind some folks may have issues with acetylcholine (pre-ganglionic sympathetic NS and overall parasympathetic NS, as well as post-ganglionic sympathetic NS in the (p)s(e)udomotor neurons triggering sweat glands, hence QSART), which can't be directly tested with a blood draw the way that dopamine, norepi, and epi can... Personally, for the rest I suspect sample bias, both in terms of who gets tested and who shows up to vote in this thread :^)

I am currently on propranolol, 20mg twice daily. Thinking of bumping it to 30mg twice daily. I was on atenolol before (just what the cardio prescribed when I went off of diltiazem), a very small dose (25mg/day). My autonomic neurologist switched me to propranolol instead because it acts in the CNS (as opposed to atenolol which just acts in the heart) to decrease sympathetic nervous system drive in the hypothalamus (I have problems with being spacey, and am quasi-hyperPOTS, hence the switch). I haven't actually noticed it being any better than the atenolol minus the fact that the atenolol made me very fatigued; if anything I think the atenolol was maybe a bit more effective for me (but it made me very, very tired). Side effects from the atenolol were possible weight gain (hard to sort out) and extreme fatigue. Propranolol for me has very few side effects, probably some mild fatigue but it's hard to sort out.

Hmm - that makes sense! Like you say, if you have problems lying down then you should definitely have issues standing up. If nothing else, good for your peace of mind and a good thing to show to future doctors and other folks to say "no, really, there is something wrong here!" which seems to be a problem many of us have... (sorry, didn't mean to imply that it wouldn't be useful!)

Ahh, apparently SPECT is only lying down (from reading your other post - helpful, thanks!). I suspect it wouldn't be too useful for me, then, given that my issues largely disappear when I lie down. I do know that there are no blood vessel (structural) abnormalities in my brain from a contrast MRI, but nothing about blood flow. Sigh...

Hmm - it's been a while since I was off Cymbalta (I was on it 3/11-7/11 and then 10/11-Jan 2012). I guess it could be a withdrawal thing, but it hasn't changed whether I've been off of it or on it - hard to say. Doctors seem to think it's probably just going to stay the same at this point as far as we can tell. I'm on various meds, but the only ones that have been consistent throughout the POTS time are Lamictal and birth control, both of which I was on for 5 years before this whole thing started, so I think I'm comfortable ruling out the effects of meds in my case. None of the other brain meds have made a difference POTS-wise. Certainly the combination of chronic pain/bipolar/brain meds does affect cognitive issues (and I have some additional visual symptoms exacerbated by serotonin-inducing meds), but the POTS stuff is above and beyond all of that, and is unrelated to the visual stuff. I appear to be Complicated, unfortunately. But the spaciness - definitely dysautonomia something. Can they do the SPECT standing up? I haven't seen your post, but I'll take a look :^)

As a side note, the most helpful thing for me while walking has been being led by the hand by family and friends, and (to a lesser extent) just walking with someone else. I can walk without them, it just is quite difficult (especially in any busy situation) and drains a lot of my energy, making other things worse. I've been thinking off and on about a service dog to help with this - specifically with guiding and forward directed motion (and with other issues too, like the lightheadedness/presyncope) - but I have no idea if anyone has looked into this before, or has a dog that does such things. I think (but am not 100% sure) that the degree of difficulty I have walking qualifies as a disability under the ADA/ADAAA (see: substantial impairment of major life activities (standing, walking, thinking, concentrating, neurological/brain functions)). I would rather get some helpful treatment otherwise (simpler!) but I'm getting a bit pessimistic at this point. My spaciness while sitting is mostly an attention issue - I lose track of time, drift easily from concrete, organized thoughts into a general blurred vision kind of blah state where I lose most of my mental processing. I can shake it off sometimes (unlike while walking), but it again drains energy and usually I can't do much more for the rest of the day brainwise.

Oof - how to describe?! Vision is a big one. I get very blurry vision - or, maybe, not so much blurry but more generally out of focus/soft focus, nothing is sharp, and my eyes are not focused on anything in particular (sometimes my pupils are different sizes, but it doesn't seem to correlate). Sometimes when it's very bad I just look right through things without actually "seeing" them. Perspective is also a bit messy - it can look like a car is going to hit me even though I'm on the sidewalk and it's merely making a turn. I also have trouble recognizing my own body - I do not recognize my arms as mine, so when they swing into my visual field while walking I startle because they look like something potentially dangerous entering my field of view, if that makes sense? Similar problems with touch, but less severe. Hearing-wise, I tend to hear sounds somewhat incorrectly - oftentimes I hear my name being called and can't figure out who was calling it (note to self: usually nobody). Cars, again, tend to sound louder and closer than they really are, which can again be tricky to deal with. I have problems with time, distance judging, and short-term memory formation - it can be difficult to judge whether it's safe to cross at an unlit crosswalk for example (because I have trouble judging the speed/closeness of cars etc). After crossing the street I often can't figure out how I did it, or that it was done - I just don't notice the details consistently the way I used to. Definitely attention issues as well - at one point I was waiting at a street corner for many seconds because I'd forgotten whether I was going to cross or not (or, actually, forgot where I was/what I was doing), and another time I took the wrong route somewhere because I followed my usual pattern. I also have trouble navigating situations - again more of the spatial judgment - I can't figure out how to get through crowds or what path to take because I can't tell where people are going to be in a few seconds, so I often end up freezing, unsure what to do. In general I just can't predict what people/objects are going to do, so it can be very difficult to walk in a situation where there are crowds. I benefit from being guided or led by friends and family in situations like this - in several instances I was unable to function otherwise. It is related to (and I think causes) my overstimulation issues. I think, from writing this up, that the actually problematic parts of spaciness are due to this inability to judge movement and distance (the rest is frustrating but less dangerous). No real changes in smell or taste, although sometimes I don't notice the taste of food as much. Sometimes smelling particularly strong things (pot smoke while walking, strong food, floral odors) makes me a bit more in touch, actually. I haven't had anything like transcranial Doppler measurement done, and I don't know what my blood pressure is during a spacey period (though my BP on the TTT was fluctuating wildly the entire time, so probably the answer is "bad and not helping"). My suspicion is that the symptoms are caused by decreased oxygenated blood flow to the brain, but I can't prove that. If true, though, that would explain why no behavioral or cognitive tricks have helped - if you can't think, they won't do much :^)

Interesting! Thought it was just Naomi and I with this weird spaciness issue. This is my worst POTS symptom by far - it affects daily life a lot (happens to me 100% of the time while standing/walking and about 75% of the time while sitting, lying down seems to cure it rapidly). I can't drive, have trouble in small meetings (I often space out and can't follow conversations, or can't speak easily), have trouble crossing the street, noticing bumps in the sidewalk, etc. My autonomic neurologist says that it is definitely *not* depersonalization (even though it feels similar, and I have had depersonalization during mood episodes before), and she specifically suggests not using depersonalization as a word to describe it - stick with spaciness or something similar if you're certain it's dysautonomia-related (so that doctors, etc don't try to treat it as an anxiety issue). So far salt loading, water loading, compression stockings, calcium channel blockers, beta blockers (both atenolol and propranolol), and pyridostigmine (Mestinon) haven't done anything for it. Current successful behavioral techniques (besides walking with someone else, especially holding their hand, which helps a ton) are pretty much limited to avoiding nighttime walking (which makes it worse) and listening to music with one ear (I leave one earbud out for safety) - that way I have a soundtrack of sorts to follow to keep me somewhat in-body. It's really tricky, and very problematic for me. We're going to try clonidine (since there's some potential evidence for it being sympathetic in origin - it started with Cymbalta, which is a norepi reuptake inhibitor) in a few weeks to see if it helps. Beyond that... autonomic neuro is out of ideas. Sadface. (sorry to hear other folks are dealing with this, but glad? to hear I'm not alone!)

I was on a calcium channel blocker for a few months - they prescribed it because they were nervous about the effect of beta blockers on mood in my case. Long and short - it lowered my heart rate but didn't do anything else (in contrast to later beta blockers, which increased my standing time and general ability to do things). I finally got off of it two months later after pointing out that it was making things slightly worse (which the cardiology folks didn't seem to care about much) and was causing edema (which they cared about a lot). No major side effects other than slightly worsening things, though.

Have you had any luck with other compression stocking brands, or is it something fundamental to the stocking design that's giving you trouble (it happens for folks)? I know that the Jobst and I don't play nicely - it causes me to lose blood flow to the area - but that Juzo and I get along just fine. Can I ask for details on your abdominal binder? So far I haven't had any luck with my doctor's recommendations for abdominal compression (an abdominal binder from the drugstore didn't account for my female hippy body, and the compression shorts from REI aren't strong enough at all).

Hmm, silly forum polls (if you can't answer one question, it doesn't let you fill out the poll). Can't answer because my levels weren't tested, but the doc says hyperPOTS based on the immediate swing of my heart rate from 80 to 120 within the first 30 seconds of my TTT (it stayed there, which is why it wasn't just a normal standing response), plus other symptoms. But I also have pooling issues, "it's complicated." I'd like her to test them, but it may be tricky and I'm not sure she's interested.

With lots of other folks - I fear progression; I can deal (mostly) with things right now and I'm not sure how long that would go on if things became worse. I fear losing my partner since he helps me be independent in many ways, but I also fear that my POTS being more apparent makes him want to leave more. Tricky. I also fear a general loss of independence, since I can no longer drive; I fear I might not be able to live alone, and that I already can't do solo fieldwork as a result of this. As a result of a potentially POTS-related fall I'm now afraid of tripping and falling too. Also afraid of walking into an intersection without looking (spaciness) and getting hit by a car, or missing a hole in the sidewalk and hurting myself (again, spaciness). In the rest of life - I'm afraid of needles and blood, large black spiders (thank you, widow bite at 13...), falling (buildings/mountains/planes, not tripping on the sidewalk), losing my family and loved ones and pets, horror-movie stuff.

Totally with you all on the having trouble singing and also having trouble on the phone whilst walking. Very annoying! I used to sing walking-type songs while walking to work or the bus or whatever, but now I can't because it makes me very lightheaded. Sad as my partner and I spent a lot of time singing together in classical music groups in college... I think sitting down does improve it, though one has to sit up straight to maintain a good vocal tone, which is tricky. *sigh* One of my sadder things. And - corina - super glad your doctor wasn't dismissive of something so obviously important to you!

My doc won't prescribe me Provigil (or anything else that is supposed to increase attention/wakefulness) because she says I'm already on too many brain-messing meds and she's uncomfortable tinkering with things lest I get unstable. Which I totally understand, but part of me wishes I could try it :^)

Hmm - totally missed all of these, for some reason the email reply notifier was borked for me. Ah well :^) My doc says via email - "let me get back to you next week, but in general, not sure, if all your symptoms are related to POTS. (Pre-)Syncope should not cause longer symptoms, can maybe last for a day, but would not expect a week, unless you nearly passed out, because you were sick from other reasons." So it sounds like what Chaos says - we have something that isn't expected, but I would be surprised if it comes down to anything besides the POTS in my case (at least, don't want to say for anyone else's), to be honest...