peregrine

Mmm, I forgot to add that when I say "adrenaline surge" it's that feeling of pressure? in the heart? not pain, but feeling kicked in the chest - the kind of thing that used to happen when I tripped and almost fell on something, or got really close to something dangerous.

One last question from my insomnia-riddled mind... sigh. Does anyone know the physiological mechanism behind transient eye blurriness (not constant, but semi-frequent lasting for up to a few minutes at a time)? For me it comes on randomly - there's no particular plane of focus, my eyes are just so blurry that I can only make out shapes. I know I have pupillary issues, but I assume the blurriness is lens-related? Ideas?

Tried my abdominal binder for about three weeks (a Spanx, definitely enough compression to notice quite a bit). No clear results POTS-wise, although it did have the following effects: (1) TMI - Increased gastric motility (for lack of a better term) - more poops more often (nearly every time!), diarrhea every time - which is somewhat good for me (2) urinary suppression - I went from peeing every 2 hours (I do 2-3L of water a day plus 6g of salt) to every 6 hours, but nothing indicating dehydration (urine still clearish) Sadly no effect on the spaciness, presyncope, etc - if anything slightly worse due to removing another area to sweat and cool. I might wear it in the winter to deal with point #1, but will skip for the rest of the summer. Anyone else have effect #2 above? I found it very weird!

Usually the symptoms that require me to sit abruptly are presyncope - lightheadedness, vision issues, severe sweating and nausea, speech issues, etc. My main other POTS issues are brainfog, fatigue, and the spaciness that makes it hard to navigate day-to-day life. Yesterday, though, I got a different one that I've had only a few times. It felt like my body was getting an adrenaline surge for five minutes straight. I got very short of breath and could barely stand, but no nausea or more sweat than normal for me. I also was very exhausted all of a sudden - it was all I could do just to stand up again at the end. No flushing or anything obvious that might indicate MCAS, though. My doctor diagnosed me as hyperPOTS (with pooling too) based on my TTT (no bloodwork for it specifically). Is this what other folks describe as an episode (for lack of a better term) of hyperPOTS? I do often have little adrenaline surges to normal stimuli - someone walking towards me, someone opening a door in the middle of the night, objects dropping. Edited to add: I took 5mg of propranolol to try and deal with it (my dose is 15mg twice daily) as suggested by the cardiac electrophysiologist. Not sure if it helped, since I had no way to test my blood pressure.

NMPotsie - what was the Valsalva abnormality that they used to help support the hyper diagnosis? My Valsalva was somewhat abnormal, so I'm curious. For me the caffeine was suggested as a way to deal with the spaciness - end result was that it did nothing and I was slightly sleepy (this was after 2 double-shot drinks in 30 minutes, and I only drink a cup or two of black tea a day).

My sister (half-sister on my mom's side) has chronic fatigue (in her case it appears to be of the chronic mono type), but does not have any type of dysautonomia (we checked after I was diagnosed); we also both (as did mom) have hypermobile joints, but I'm the one with the actual syndrome (mine move more than either of theirs and hurt a lot).

I'm also like Rich, it seems like - I do get high BP both sitting (intermittant) and standing, but I do begin to pool after a few minutes and then I get a BP drop after it's been long enough without any muscular pumping. FWIW, my doctor was happy to diagnose me as hyper without doing the bloodwork - I think maybe like firewatcher said she just went on symptoms and TTT response.

My POTS doc said I have pooling but seem to also be hyperPOTS (though she hadn't done the blood draws to confirm the hyperPOTS, not sure why) - she says I have some neuropathy and there may also be a connection to the joint hypermobility syndrome. So - yes - it's certainly possible. (my personal bet is that I have been pooling for a while, but the addition of a medication that triggered sympathetic overactivity seems to have broken the camel's back, so to speak)

Severe spaciness, where I lose the ability to really process my surroundings and just walking down the street avoiding people and garbage cans and cars is an exercise in mixed luck/terror. The others (presyncope, sweatiness, nausea, shortness of breath, palpitations) I feel like I either have some control over, understand why they happen, or have accepted them, but the spaciness (especially when really severe like above) is just a disaster.

I've had Ringer's pre-POTS for a serious stomach flu (wasn't keeping anything down), and it was wonderful stuff.

What NMPotsie said - I get these too (especially in the hot weather of summer); they seem to last for a day or two or four and then resolve spontaneously, and I just have to take it really easy on those days. Maybe that's a "POTS flare" the way other folks talk about?

That's pretty consistent with them being in your eye, then - the slight lag behind the motion of the eye is due to the fact that vitreous humor is fairly thick liquid, so things move slightly more slowly in it. My floaters do that too (the palinopsia, being brain not eye, doesn't).

Ah, flyingsquirrel, thanks for the reminder/clarification! My tracers (the palinopsia) are present in both eyes; we know they're CNS (brain) in origin, specifically probably due to some weird activity in areas MST and MT (I get extra tracers in both in/out directions due to MST and sideways/up and down due to MT).

Not sure since I've only had one shot since developing POTS. But I've almost always needed more than the standard dose, especially when I was younger - I hear it's linked to joint hypermobility syndrome/EDS as well. The most recent time I had one (post-POTS showing up and not yet on meds) I did very nearly pass out, but not sure if I was tachy and also not sure if the near passing out was due to the IV they were putting in, since I'm a terrible needlephobe about IVs in particular. In the past my reaction to shots with epinephrine was no worse than shots without it (having done both), but my use of albuterol for asthma has caused tachycardia in the past (many years pre-POTS).

Floaters, as far as I know, are clusters of cells and cell debris in your vitreous humor. Generally harmless; some folks have a few and some have a lot. Certain conditions (such as palinopsia, which I have, and seemingly POTS too) do make you more aware of them - most other folks seem to tune them out unless they're looking up at the sky. Floaters are usually clear, though - the black spots and squiggles sound like something maybe a bit different. The BP link makes sense, though - for example, consistent high blood pressure can affect the eyes in a negative fashion. Have you talked with your neurologist about it (I forget if you're seeing a neuro or a cardio)? Might consider a neuroopthamologist too.

Steph - wow, that's quite a different response to most folks here! Good on you for getting it tested. What they say repeatedly with the hyper-parasympathetic response is really interesting - especially with the lower resting heart rate (are you in particularly good shape?), since the parasympathetic NS does drive decreased HR. At first I was a bit surprised they wanted you on barbituates, since they're a central NS depressant, but on further reading they also bind to the neuronal nicotinic acetylcholine receptor (thus blocking its action and therefore suppressing your parasympathetic nervous system response somewhat), which makes sense. Good luck with the neurologist!

I stopped atenolol (I was at 25mg daily) "cold turkey" for my TTT - just didn't take my dose the next day. I would imagine for a higher dose you'd want to taper down, since it's easier on the body. No withdrawal symptoms other than more energy (hah!) and a faster heart rate and lowered control of POTS symptoms (grump). FWIW, it's totally possible to have hyperPOTS and still pool (at least, we suspect I am hyperPOTS and I definitely pool). Be clear about asking your doc why they don't want you on midodrine, stockings, another vasoconstrictor - that will probably help you understand. My new neurologist says no midodrine because I "don't have low BP" - I'm pretty sure that (1) I have occasional low BP and (2) systemic BP has not much to do with pooling, which midodrine can help. So definitely don't be shy about trying to understand why you both pool and are hyper, and whether you can treat the pooling without exacerbating the hyper.

Hi miajnt - I'm a bit too brainfoggy right now to talk about the rest (sorry! today has been a wreck), but - my Holter (24-hour monitor) showed some atrial tachycardia as well as POTS-related tachycardia. They partially diagnose atrial tach via the different shapes of the p-waves (the first wave of each heartbeat). After my 9-month checkup with my cardiac electrophysiologist (during which I got a TTT, POTS/NCS diagnosis, and treatment), she agreed that what she saw as atrial tachycardia was probably just POTS. So you can have both POTS and atrial tachycardia, or just POTS. If it were me, I would personally avoid the ablation (I avoided getting one based on dinet's info) and get treatment for the POTS - the non-ablation treatment for atrial tachycardia is usually beta-blockers or calcium channel blockers anyways, and you might trial beta-blockers for POTS and kill two birds with one stone. Does that make sense? Sorry for the rambling, blame my brain today.

Sue - you might think about looking into the cervical stenosis as well even if the dys panel is positive. Sometimes POTS symptoms (as in my case, with some hypermobility involvement, some neuropathy, and a medication trigger) can come from multiple causes - better to rule them all out rather than settling with the first one if you (and your insurance!) can handle the extra visits?

Cerebral hypoperfusion roughly means "not enough blood circulating through the brain" - hypoperfusion (from hypo = low, perfusion = movement of blood through a capillary bed) in the cerebrum (the thinking part of your brain, as opposed to the cerebellum which controls things like motor control). There are some things you can do with transcranial Doppler ultrasonography (roughly, they do an ultrasound of the cerebral artery using a sensor on the side of your head) to measure cerebral blood flow, but hardly anyone does it. I'd like to see if the spaciness, presyncope, etc (which are my worst symptoms other than brain fog) are correlated with it at all.

Mine wasn't triggered by surgery - I had a tonsiladenoidectomy and ear tube placement around age 7, and then ear tube removal around age 10ish, but the POTS didn't show up until age 25.

Let's see here... I don't know my non-TTT BP values that well (don't have a monitor of my own, keep wondering if I should get one), but: I have both high and low BP when standing (agree on the treatment bit!). The low BP when standing seems to be (1) delayed (takes several minutes to occur) and (2) due to pooling (which also takes several minutes to occur). I definitely pool - when I stand without my stockings my feet turn red, itch, and the veins pop out. I have joint hypermobility syndrome (I put EDS - suspected - because while it's not as severe as EDS hypermobile type, it's related depending on who you ask), neuropathy (based on QSART), and probable hyperadrenergic POTS (no norepinephrine bloodwork yet).

Hooray! That is amazing news. I am another walker/hiker, but I can't jog (silly joints). Keep up the good work! Sarahm: Mestinon (pyridostigmine is the generic name) is a medication that increases your levels of acetylcholine by blocking the enzyme that degrades (destroys) it. The end result is that it supports/increases the function of the parasympathetic nervous system, which acetylcholine is the main neurotransmitter (chemical messenger) for. Unlike some other meds it doesn't cross the blood-brain barrier, so it only affects the rest of the body, not the brain. In many folks it's used to improve HR and BP (decrease both), since it seems to have more of an effect when standing and thus avoids hypertension while lying down (which can happen with midodrine).

Tested: Causes of small fiber neuropathy (diabetes via HB A1C blood draw was negative, Sjogren's via anti-SSA/Ro antibody was negative, B12 deficiency via blood draw was negative). Chemistry, complete blood count, thyroid all negative. POTS-related: TTR sequencing (to test for amyloidosis, my gene looks fine). Paraneoplastic panel sent to Mayo for nictotinic acetylcholine receptor antibodies, that was normal too. 24-hour urine sodium has been normal to high. Holter monitor, numerous EKGs. Full TTT including QSART, metronomic breathing, Valsalva, and tilt. Causes for joint issues: various rheumatology tests (Lyme, sedimentation rate, ANA, RF, anti-DNAse) also all normal. Vitamin D is low to normal. Things I'd like to have tested: Standing and lying norepinephrine. Some way to look at whether I actually have cerebral hypoperfusion. Ifff there were some way to conclusively look at collagen issues with JHS/EDS III, I'd love to hear it!

Happens to me once every few months. Take a look at Thoracic Outlet Syndrome - it can affect both the nerves and the artery that runs down the arm. In my case (happened this morning, in fact!) it only happens on my right side, caused by the cervical rib I have on that side (found by chest xray for a random unrelated issue). For me it's also very different from the body part just "being asleep" - I pick up my entire arm using my other hand, and it just falls. I can't even lift it or move the fingers at all. Goes away after about five minutes. My primary care doc said it's nothing to be too concerned about unless it happens very frequently or it stays numb for a long time - at that point you might want to see someone.