peregrine

*laughs* Pre-beta blockers my HR would happily hit 150 just sitting there, and exercising it would hit 200 just fine. It makes me giggle when I sit on the exercise bike these days and the bike sensor is like "your heart rate isn't high enough!" and I'm like "beta blockers, dude, chill." I wonder what people walking by think when I'm sweating and pedaling hard and fast and the HR meter says 110.

I loves me my beta blockers, though not as much as my clonidine. I started on atenolol (after diltiazem, a calcium channel blocker, gave me edema), and it was a big improvement. It did lower both my resting and standing/exercising HR - resting is between 50-60 and exercising is ~120 unless I am climbing a really big hill in the city and then it maxes out at 160. I got fatigue with atenolol the first time, but haven't gotten it since. I took propranolol (a "non-selective" beta blocker) for about six months, but it gave me shortness of breath; if you have a history of asthma you may be better off with a "selective" beta blocker like atenolol. My neurologist did note that most folks with dysautonomia take much lower doses of betas than those used to treat high blood pressure (something something "don't tell a cardiologist the dose you're taking, they will think it does nothing" something something!), which is a good thing to keep in mind but may not be true for everyone. H1s and H2s are different histamine receptors; you might know histamine as the chemical involved in allergic reactions (which is why antihistamines like Benadryl can help treat hay fever). Some folks with mast cell issues respond to antihistamines that target one or both receptors.

With other folks here. I actually have what's described above - something that seems to have features of both hyperPOTS and PD/pooling, and I do have joint hypermobility syndrome. However, when my autonomic nervous system neurologist (who has published herself and does dysautonomia research) saw the test results - the rapid response to the tilt table test, the very obvious pooling, and the wildly fluctuating blood pressure - she was very surprised and described it as "an odd type" - so I assume that if it were common or found in the literature that she would have responded differently. Personally, I have responded well to things that tend to treat hyperPOTS (clonidine) and general things (beta blockers), but I also do best with water, salt, and compression; I haven't tried Florinef because I retain salt well enough, and the neurologists haven't wanted to try midodrine because my issues seem to be more than "just" pooling/venous dilation. *shrug*

I've found that posture is a big one for me - even though it's very hard to maintain when I'm tired! In some ways it reminds me of the trick I use some days to feel less "bleh" - just putting on a shirt and fleece pants instead of a bathrobe makes me feel better. But what yogini says above is definitely true - it makes breathing easier and does help your muscles avoid some pooling. Just make sure that it's active posture, not the soldier-at-attention type, since locking your knees and not moving your leg muscles is a great way for even non-POTSies to faint!

Oof - sorry to hear! You might try the following: oral rehydration solution (what the WHO uses for diarrhea in developing countries): 1L or 1qt water, 2 tablespoons of sugar, 1/2 teaspoon salt. If you can stand it, add orange juice or a banana (or eat separately) to get potassium. I drink water with salt added these days - I personally do 6g of salt a day (the exact amount was determined by my doctor, yours may vary), so my first liter of water is 1 teaspoon of salt in a liter (a liter and a quart are about the same) of water, shake and drink like I normally do. This is close-ish to the level of salt in your blood, which may make it easier. edited - you can also try Pedialyte (what my housemate drinks when she has migraines and needs to replace liquid lost to vomiting) - but my housemate says it tastes terrible, so your mileage may vary.

My autonomic nervous system neurologist said that I have POTS, which explains many of the symptoms that I have; she said that my issues with my eyes and stomach might be a more general dysautonomia that's not POTS-specific. My personal take is that dysautonomia means *anything* wacky with the ANS - this includes things like POTS, NCS, orthostatic hypotension, Shy-Drager, PAF, etc, and that POTS specifically refers to tachycardia associated with standing/sitting and resulting orthostatic intolerance; it seems to include many other things (hence syndrome) that don't seem to be due to tachycardia, etc (e.g. eye issues), but as to whether those are POTS-specific or more generalized dysautonomia is hard to say. POTS is heterogeneous enough that it's hard to make too many generalizations other than "standing tachycardia that is problematic and causes issues with standing upright for long" - not everyone is sensitive to heat, not everyone has nausea, not everyone has headaches, not everyone even has fatigue associated with it.

What Ashelton said above - the electric currents are to make the acetylcholine pass through your skin (mine wasn't too painful, kind of like getting a little shock from the rug or the cat). In a normal person, when acetylcholine moves into the body, a peak of sweat is produced that gradually declines; this happens because the acetylcholine triggers the autonomic fibers in the area to tell the sweat glands to go to full production. An abnormal result often shows a smaller or absent peak - basically, your body doesn't respond to the acetylcholine much or at all. In my case some areas were abnormal. If the QSART is abnormal (at least in my case) they suspect small fiber neuropathy (SFN) - specifically autonomic neuropathy. This led to a battery of blood draws to rule out usual causes of SFN - diabetes, HIV, vitamin deficiencies, some autoimmune things (antibodies against nicotinic acetylcholine receptors), and some rare condition that I'm blanking on the name of. After that - when they were all negative (since many are treatable, they want to rule them out), the answer was "shrug. no clue what to do."

The cold sweat is a big red warning sign for me - it means sit *immediately* in my case, or get someone to tilt the chair back if I'm already sitting. It sounds like you got that but maybe didn't have enough time to get down? Maybe you could slide in a controlled way as soon as you felt lightheaded if there are things around you (sink, tub, heater) to slide down on? Beyond that, not sure. What Peace says above about knowing your triggers (and your warning signs) is a big one for me.

You might also check out Open CourseWare at MIT - nothing POTS-related, but good resources if you want to just take classes: http://ocw.mit.edu (a friend used to work there; it's one of the oldest free online class materials and courses)

*hugs* Sending good thoughts your way for as relaxing a next few days as possible and a good surgery (and recovery and outcome!) on Monday!

One thing I would mention is that sometimes side effects go away after a few days to weeks as you get used to the medication (but obviously most of them stick around!). In the beginning with clonidine I was very lightheaded all of the time - I would stand up and my blood pressure would go from 110/70 to 85/45 and I would almost pass out and my BP wouldn't recover for several hours. Now that I've been on it for two months, I only get a slight bit of lightheadedness if I stand up very quickly, and it only lasts for a max of 30 seconds. Not to say that you should stick with something if it really isn't working out for you, but worth a thought. Two other things along those lines - the first time I tried atenolol I found it very sedating; now that I'm back on it it doesn't have the same effect. No clue why. And Seroquel - the medication I take for sleep - sometimes is sedating at low doses (what I take) but less so at high doses (which I don't need) - so sedation can be dose-dependent in weird ways. (none of this is meant to be "go take it and don't be afraid!" thoughts, more just "drugs do weird things sometimes, sometimes side effects change over time" thoughts)

Hilariously, the thing that I believe triggered my POTS is also the thing that we know triggered my grinding/clenching at night: Cymbalta, a serotonin-norepinephrine reuptake inhibitor. When reading this I went "not much of a link between my POTS and the jaw pain other than timing," but now that I think about it, my massage therapist was finally able to get my jaw to unlock (after 13 months) about three weeks after I started the clonidine. I wonder if that's related? I have had some jaw issues for years (whoo HMS/TMJ), but it got dramatically worse with the Cymbalta - I suspect that the increased amounts of norepinephrine (and hence SNS involvement) are to blame. I do still have pain, sadly - worse now that it's unlocked, of course... - but at least I can get it to relax and unlock with the right self-massage (the ropey muscles in the back of the neck for me). Regarding pain, I have a constant background dull ache with exacerbations of fairly strong (7/10) pain that has woken me up at night. I've worn two nightguards to protect my teeth, but neither has stopped the grinding.

It seems to depend on the person - worth doing an elimination diet if they concern you or you're curious, but I wouldn't give them up without figuring out what their effect is on you personally. Hilariously, I've found that oatmeal (or rolled barley, which is what we have in stock as it's got more fiber and tastes "meatier" to me) is actually very helpful for me - when I travel it's the best way to make sure that my GI tract stays happy in the presence of foods it's not used to, so I've been working on eating it daily when I travel. But your mileage may vary!

Awesome! It's amazing to see someone who has kept up on the literature and modified their thoughts and practice accordingly. Hooray!

Sounds like pooling to me too. Before the clonidine I was always warm enough to only have stockings on my legs, even in the winter - now I'm more even in my temperature tolerance, at least in the winter (I get cold! it's kind of unfamiliar now). Regarding blood pressure - when mine is low I feel bad, but I can also feel very close to passing out - my 2/3-3/3 on the 0-3 presyncope scale - and have a normal blood pressure. It appears to mostly depend on *where* the blood is, which doesn't seem to have much to do with the blood pressure in your arm at the elbow or wrist, at least not in me. (edited - oh, also, pre-clonidine I really loved being outside in the cold - I felt the best that way. probably the lack of pooling)

I'm with Angelika - my doc prescribed diltiazem (calcium channel blocker) initially due to concerns about beta blockers and my mood. It was worse than being unmedicated for me - my tachycardia went away, but the POTS stuff got worse. I got switched to atenolol a few months later (triggered by edema from the diltiazem and supported by my desire to switch), and for me it's been very, very helpful - atenolol and clonidine are my two drugs of best effect. The ANS neurologist switched me to propranolol to see if it helped with the spaciness, and it didn't for me - I ended up switching back to atenolol six months later because the propranolol worsened my shortness of breath. If you have trouble with that, ask about trying a selective beta blocker (atenolol is one) instead, since they only block the beta receptors that deal with the heart instead of heart and lungs. The beta blocker didn't worsen my spaciness, if that's of help to you. And yes - taking a tiny dose should be fine. I started off with half of the smallest pill when I started the propranolol. The warnings about suddenly stopping are *mostly* there for folks taking much higher doses than most POTSies - most of us take doses that are tiny compared with those used for blood pressure or chest pain - but it's always a good idea to taper meds off if you can.

The electrophysiologist and I talked about an ablation when it was thought to be atrial tachycardia with some weird ANS symptoms (she and I now agree that it's just POTS - not in the minor sense but in the "no conduction issues in the heart" sense) and she agrees I was right to refuse it in favor of medications. In my case an ablation would have been tricky, since the abnormal p-wave forms were only present during POTS symptoms (figures! she now says that it's just POTS) and they might not have been able to get them to trigger during the electrophysiology study, at which point they wouldn't have been able to do anything (they have to localize the site of the electrical conduction issue to ablate, which is a problem if the issue is intermittent, only triggered by exercise, etc). Yet another reason for me to refuse, personally, though with IST I think it's easier to find the problematic site, since the SA node is pretty well defined. If I recall correctly, the main reason the literature suggests avoiding ablations in POTS is that the tachycardia is nearly always secondary to something else - secondary to blood pooling, secondary to a hyperadrenergic state, etc - and that doing the ablation may not stop the tachycardia (because there isn't an underlying electrical issue) and may make you worse if the tachycardia is actually a response to a need for additional cardiac output (e.g. in pooling). I don't know how that would work out given IST and mild POTS, though. I'm with Kelly - you might consider getting a second opinion. Is the cardiac electrophysiologist you work with (if you have one) familiar with autonomic nervous system issues at all? Can they/would they partner with a neurologist, especially one who works with autonomic nervous system issues? I don't think ivabradine is available in the USA, but I'm not sure, and I have no familiarity with it; the only reason I mention it is that it may work in folks who can't tolerate betas. Good luck!

Many of the online sellers (at least Brightlife and Ames-Walker) have in-house brands that are generally cheaper. I don't know how Brightlife's in-house are; my partner's father likes his Ames-Walker in-house ones, but he wears knee-high for DVTs so it may be less useful. Some of the sellers have exchange policies, which I strongly suggest taking advantage of; I had to go through three different brands before finding that Juzo is right for my particular body. I wear thigh-high 30-40mmHg open-toe Juzo (about $85/pair), which have worked best for me. I use "It Stays" to keep them upright, since otherwise the thigh-highs don't stay up... I can tell that the pair I got in February are getting too old (I alternate two different pairs), since they are starting to slip down even with the glue. There are also garter belts you can get for them, though the idea is kind of amusing! I've read that knee-highs aren't recommended for POTS since you can get edema above them, though I didn't when wearing lower-strength knee-highs. I find that the open-toe setup doesn't bother me, although the first few days of the new pairs I had to stretch the opening a little bit by hand. It's nice for wearing sandals, since mine have toe straps. I'm occasionally tempted by waist-high, but the abdominal binder I wore included a panty bottom, and it made going to the bathroom kind of a pain; something worth thinking about, I guess. A few other thoughts... the "opaque" or non-sheer types tend to last a lot longer than the "sheers" or similar. Hand-washing is a good idea; I do mine in the shower and then let them hang-dry overnight. Having two pairs to switch back and forth between is useful.

Let's see, answers to kitt's questions... I take 12.5mg of Seroquel at night for sleep. I react very, very strongly to sedatives (and less strongly than normal to local anesthetics, go figure) - I took trazodone for a bit but 1/4 of the smallest pill made me sleep for 12 hours straight and be a zombie for the other 12. Seroquel works well for me, thankfully. Clonidine-wise, I take 0.1mg twice a day. It's been a great medication for me - I am generally less fatigued and more cognitively "with it" than in the past, and it's had a mild beneficial effect on my spaciness (the only drug that has thus far). Downsides have been sleepiness (not fatigue! hilarious how many different sensations of fatigue there are) - more like narcolepsy "sleep attacks" than anything else. Also some transient episodes of eye vibration sensation, fairly strong tremor, feeling cold, and confusion - neurologist says those probably aren't clonidine but are "more POTS stuff." I suspect the reason I'm less fatigued is that I'm running "high" less often - I no longer startle quite so badly to things like birds flying nearby or cars coming towards me, so I wonder if I'm wasting less energy during the day. I also sweat less (and overheat less!) - almost cold much of the time now that it's winter. I had some issues with hypotension/presyncope with postural change (BP down to 85/45 at times, with very very fast presyncope) - it's gotten better somewhat and I've learned to stand up slower. Currently pondering increasing the dose and/or switching to the patch. As to "quasi-hyper" - my ANS neurologist said that my tilt-table responses looked like someone who is hyper, but that I also obviously pool and have some probable small fiber neuropathy (via QSART). My blood pressure started getting high-ish when my POTS started (normally 110/70 but it started going up to 140/90 when symptoms started) - during the TTT it swung wildly (max 170/100 and minimum 62/50). But I've never had norepinephrine drawn at all (either standing or lying down), so I can't say that I'm a true hyperPOTS person. (I could also argue on the side that my very positive response to clonidine might support hyperPOTS as well, but I'm not clear on that)

PhD student here - POTS began in my third year of grad school. I'm fortunate to still be in my program - I have two advisors who are fairly understanding (and I worked with them pre-POTS for 3 years, so we already had a good relationship) and the type and year of the PhD program I'm in means no classes, just research, which is a very flexible thing much (but not all!) of the time, plus my fellowship pays for health insurance. I have a technician I pay off of a small grant I have who does things that need to be done early in the morning, etc. I think in the future I will probably be able to do teaching and research, as long as they're both flexible hours; my problem is mostly needing extreme flexibility in terms of timing/schedules/progress deadlines, since I can work reasonably well most of the time with those accommodations. Folks in the US who are working (and those looking to return to work) might keep the ADA in mind - if there are accommodations that can help with work or school (having a stool at one's register, flexible hours if you're in a job that could have those, more frequent shorter breaks, etc), you shouldn't hesitate to ask for them with a note from your doctor. (obviously this won't fix anyone's issues entirely - it only enables me to keep my job, not make me a superstar - but worth thinking about)

I'm quasi-hyper ("it's complicated") and taking clonidine, if that's helpful. Sleep has been an issue for me for a long time, which is why I take Seroquel (quetiapine fumarate) - it's technically an atypical antipsychotic, but at the tiny dose I take it at it is mostly a sedative (the other effects are helpful for my bipolar disorder, but with the tiny dose it isn't doing much on that axis). It doesn't make my sleep amazing (Lyrica did for a while, but sadly stopped), but it does keep me from waking up every hour and looking at the clock. Most folks who aren't in the psychiatric field don't think of it for sleep - I'm not sure why, it may generally not be a good idea - but that's why my sleep is mostly okay. (the main reason that pyridostigmine was helpful for me in the beginning was fatigue - but the effect of the clonidine in decreasing fatigue far, far outweighs the pyridostigmine for me.)

No worries! Before medications (atenolol, pyridostigmine, methylphenidate, clonidine) my BP swung between normal-ish (110/70) and high-ish (140/90). During my TTT it went between 62/50 and 170/100. My HR before meds was resting ~70, standing ~120-150, and exercising ~150-200. Before I started having my POTS symptoms (so the first 5 years of my Lamictal use) BP was 110/70-120/80 and HR normal (resting ~60, standing ~80, and exercising ~120). Back when I started Lamictal I wasn't very sensitive to meds - hardly ever had side effects, etc (not true now!). If you do end up taking it, start very slowly so as to minimize the risks of Stevens-Johnson Syndrome/rash.

Thanks much for these!

Ahh, gotcha. Because they vasodilate so severely, I assume?

I've been on Lamictal for... let's see now, 6.5 years. I take the maximum dose (400mg) of the generic (lamotrigine). However, I take it to manage my bipolar disorder rather than for any POTS-related reason; as far as I can tell it hasn't done anything, but keep in mind that I've taken it at that dose for my entire POTSy period from symptom start until now. I don't really have any side effects on it (other than weird dreams, which I already had!), but I don't know anything about it and POTS.