peregrine

I go back and forth - if I take the most likely explanation (hypermobility syndrome plus Cymbalta-triggered SNS overdrive), then I know the root cause and it's not really treatable per se. Mmm, rather, it's treatable to manage symptoms but not in a way that would make POTS go away. Thus - dealing for life; sometimes I feel more optimistic, like I can continue to be independent and working (assuming lifetime medication, lifestyle changes, etc) and sometimes I'm more pessimistic.

Both - I do breaststroke (which uses rhythmic breathing) and sidestroke (which is head above water) and I paddle on my back (head above water) and use a kickboard with frog and regular kicking (again head above water). Both seem to work fine.

The pool is awesome! I feel almost in shape there for some reason. The only hard part is showering afterwards :^) The stall with grab bars has a really bad showerhead that they refuse to fix ("it's for wheelchair users, that's why you can't raise it," when the point is that it doesn't stay in one place; I can deal with low showerheads), otherwise I'd use it. But the pool is a total win! Ours is kept fairly warm, mid80s I think, which is better for my joints and general ability to swim - but overall the water is very good for dissipating heat. It's the main form of exercise that both my autonomic neurologist and medical geneticist/hypermobility doc prescribed.

I'm one of the under control ones - perhaps *too* under control. It's the only POTS thing (and its resulting palpitations) that I've been able to get largely under control. Any of diltiazem, atenolol, and propranolol have been successful at controlling my heart rate - though diltiazem made everything else worse and atenolol made me really tired. These days my resting heart rate (and even sitting sometimes) is around 60, walking I get up to about 105, recumbent bike up to 130, and really exercising hard (like walking up a really steep hill where the bus doesn't go) I might hit 150-160 at the most. A big change from the past! Right now sitting my resting heart rate is 51, which is kind of low. Maybe I need to back off of the propranolol a little more... hmm. Or it could be the pyridostigmine, come to think of it. Sadly keeping my heart rate under control doesn't seem to correlate with anything else other than maybe some mild increase in standing time.

Not sure - I have hypermobile joints (relevance depends on whether you go with the "hypermobility syndrome == mild-normal EDS-III), but was unable to tolerate HRT (Premarin, then Vagifem) because I get morning sickness on estrogen. Keep us posted!

Right, should have mentioned - I don't have amnesia on it, but my mom forgot the names of her children(!) when she took it, so had a huge sign over her hospital bed reading "NO ATIVAN." I don't know if she ever tried any of the other meds in this class (like Valium) or what the effects were. (she didn't have dysautonomia)

I take it, but only for bipolar episodes with severe anxiety. I've only taken it once since developing POTS, and it didn't seem to affect POTS things too much either way, other than making me cope with the IV line better (I also take it for IV-related stuff like breast MRIs, since I have a nice NCS-style reaction to needles).

hippychic, have you talked with your doc about vertigo? Some of the dizziness/floating stuff you describe sounds somewhat similar to vertigo - might be worth looking into? I had some pretty severe vertigo when coming off of Cymbalta (though of course like you said you're not on meds), and it definitely exacerbated the POTS and was quite hard to separate from it too.

Interesting - following that formula gives me a training heart rate of about 150bpm, which is actually where I cut off and stop exercising (chosen intuitively). Neat! My doc said to focus on symptoms rather than heart rate, but I'd hesitate to tell anyone else to do that...

In general - the spaciness/spatial awareness issues. More recently... presyncope, language issues (paraphasia?), vision issues.

I've flown multiple times since symptoms started, including a direct Boston to Seattle flight and several overnight flights. I'll second everyone else by emphasizing hydration (you can bring a bottle to fill past security, and bring Gatorade powder or Nuun tablets or similar if that's your thing). You can also get a wheelchair at the ticket counter if standing in line for security is a bad thing for you. In my experience just having lots of extra time for security, connections, etc makes me deal a lot better. I always like to get an aisle seat so I can get up repeatedly to go to the restroom :^)

My doctor also said to focus on symptoms - though of course that varies by person. These days with beta blockers my heart rate doesn't go much above 140 even for fairly strenuous stuff.

Here are mine... - Make sure when I leave the house I have everything topped up and ready to go (cane, folding stool, full water bottle, full bag of goldfish, meds) - Blackout curtain in the bedroom for summer so I can sleep in and be well rested - Tall stool in the kitchen for cooking, short stool in the tub for showering - Easy chair in the study so I can sit straight, cross my legs, fold them up under me, etc - In my lab, appropriate height stools so I can sit while I do labwork - Ask for a seat on the bus if necessary (I find that "I pass out when I stand up" tends to get much more response than "I have bad knees"!) - Prep food on the dining table rather than in the kitchen - easier to sit down that way - I use a laptop, so I can sit at my desk or on the couch (at work) or any of (easy chair, rocking chair, couch, bed) at home - Keeping a hair stick handy to put my hair up on really hot days so I sweat less - When I wash my hands, I dry with a paper towel and then use it (wet) to cool off my face, neck, and arms - In the summer, sit on the porch in the shade instead of sitting inside - more of a breeze but still shady (I live in a non-humid non-a/c region of the country) - Sort home/work tasks - things I can do while brainfoggy, things I can do while mentally with it but needing to sit, and things I can do while feeling goodish. Switch between the lists as necessary - Count the number of Priuses on the roads I walk to work (helps me realize there are cars out there) etc.

Diltiazem (calcium channel blocker) - slowed heart rate, made other symptoms worse Atenolol (selective beta blocker) - slowed heart rate, increased standing time, markedly increased fatigue Propranolol (nonselective BB) - slowed heart rate, somewhat increased standing time, worsened shortness of breath Pyridostigmine (indirect parasympathetic stimulant) - slightly increased standing time, slightly decreased fatigue Cymbalta (serotonin-norepinephrine reuptake inhibitor) - triggered POTS! decreased chronic pain but worsened spaciness

I've been taking it for a few months now. So far no side effects worth noting (unusual for me) - I take 60mg 2-3x/day, usually at waking up, then 4-6 hours later, and then sometimes 4-6 hours after that. I worked up from 30mg 2-3x/day for a week. I thought it wasn't having much effect, so I tried going off of it for 3 days. Definitely more tired and able to do less. So it may be subtle, but it's worth staying on in my case. Some days I can stand longer with it than without it, but not true for all days. Same for concentration. Sadly has stopped doing much of anything for my vision (I envy rama)... but definitely worth a shot.

On and off - when there are no balance issues I can amaze my PT with how long I can stand on one leg. But then sometimes I just wobble - like others here, especially with sudden turns or changes in direction. And I trip on things all the time, which is unfortunate - thankfully all the bad tripping episodes after the first (where I fell and chipped a tooth) have occurred while holding someone's hand, so I haven't fallen since.

I take 1000mg of vitamin C a day - no obvious correlation with how I feel on the days I fail to take it, but now I want to go look at the data again :^) Thanks for the link!

I've been on OCP (oral contraceptive pills, yet another acronym) for about the last 8 years. I had to switch from normal pills (35mcg estrogen) to micro pills (20mcg estrogen) - I get morning sickness otherwise (we know it's morning sickness rather than a GI side effect because I got it on Premarin as well). No obvious link to dysautonomia issues for me, but definitely try multiple options if one thing isn't working out for you. One other thing to consider talking with your doc about is the Mirena IUD - low-dose progesterone, doesn't need to be taken orally or put in monthly (it sits in your uterus for several years). I can't use it due to vaginismus, but other folks outside our community are big fans.

Hunh - no changes with alcohol for me either, though I've always been a light drinker. I did avoid it for a while when I saw the info page ("Things that hurt"), but in general it doesn't seem to affect me much. Though I've always been super-careful about hydrating, even before the dysautonomia started (one full glass of water for every drink at least). I'll happily drink something next time (but not a pina colada) for everyone who can't drink and stated here that they want someone else to on their behalf. A toast to our survival!

Same here re: irregular sleep. The quarter (I'm in grad school, whoo flexibility) was really rough, and so I was getting 6-8h of sleep a night (I need 9ish, maybe 9.5). Then, once it was over, I started sleeping 10-12 hours a night (in the past I might have done one 10-hour night after a period of sleep deprivation, but not weeks on end). I can get up after 8-9 hours, it's just that I will keep sleeping forever. Grah.

I get massage every 2 weeks for my joint issues; I find it also helps stabilize my mood. Very handy. No visible effect on POTS (despite doing it both before and after), sadly.

Searched for "papers," "articles," and "publications" but couldn't find one. I know various folks here have been posting topics about journal articles that they found useful - sometimes as separate topics and sometimes included in posts in topics to support various pieces of info on dysautonomia. Is there a way that we can create a list (perhaps on this topic, perhaps elsewhere) of all of the papers that folks have found? That way we (me, at least) can go back and just see what's out there in terms of publication. Surprisingly (or not!) Google Scholar just pulls up papers about pot (the substance) and pots (ceramics or metal fabrication)...

Definitely get a second read on that - and, if you can, try to take your resting pulse (maybe on waking up in the morning before you sit up to duplicate the effect of lying down for so long) several times to get an idea of what it normally is so that whoever else looks at it can get a better idea of what you look like normally :^)

I'm glad you brought this up - I've been having dyspnea (shortness of breath, I guess) since not too long after I started the propranolol - never really connected the two (I assumed it was edema from the Lyrica, which seems to not be the case). The increase from 20mg twice daily to 30mg twice daily has dropped my heart rate something impressive - my sitting heart rate is now around 55, which is low for me (sitting these days is around 75 normally), so I decided it was time to back off. Sadly my neuro is out of town until 6/18, but she's given me the authority to mess with the dosage myself within reason (and is the one who told me to watch for the bradycardia with the increased dose), so I'm comfortable. Thanks for bringing this to my attention!

Here's the article: http://circ.ahajournals.org/content/118/3/e61.long "Postural Tachycardia Syndrome: Perspectives for Patients" (Dr. Grubb) It has a great flowchart that's worth a look, and is generally patient-oriented rather than full of medicalese.