peregrine

My doctor gave me this article: http://circ.ahajournals.org/content/118/3/e61.full It has a really nice flowchart describing treatment options for POTS - as a patient I found it very easy to read and it is nice and short too.

At my TTT I had both a wide (170/100 = 70) and narrow (62/50 = 12) pulse pressure. During regular doctor's visits, it's ranged from 18 to 63, but is usually in the 30-50 range.

I get something similar to what you describe almost all the time - as does Naomi, I think. I describe it as spaciness - dissociation or depersonalization is the closest description, but I try to avoid using those terms because the ANS doctor was very firm on me not using psychiatric terminology for what isn't a mental illness (I also get depersonalization during severe mood episodes, and she's worried about me being more susceptible to the "POTS is just anxiety!" misdiagnosis as a result, I think). As a result, I don't drive, have trouble walking on my own at times, don't hear people saying my name or don't notice people I know, etc. It's one of my biggest problems with POTS.

Never yet - my dysautonomia neurologist told me to go if I actually pass out, but thus far I've just gotten very close a few times. I'm lucky, I guess... there have been times when I've been tempted, but I've read too many horror stories here, so I know it probably won't do anything for my situation. Edit - other than the time right after the spaciness started, when I fell, split my lip on the sidewalk, and cracked a tooth (and killed the root of another tooth, though the root canal is doing just fine a year later) - pre-POTS, but post-spaciness.

How slowly are you getting out of the pool? I tried getting out at my pre-POTS normal speed and almost passed out; since then I've learned to take it super-slowly (stand in the pool for a few minutes, sit up on the edge for a few minutes, sit with my knees up, then slowly stand up with the help of the ladder). It sounds like your situation is much more severe than mine, but worth a try if you aren't already getting out very slowly.

Anoj - sounds like we are actually kind of similar. My POTS was triggered by starting (not withdrawing) from Cymbalta, an SNRI, and removing the drug didn't fix the problem. I think I always had some small fiber neuropathy and probably joint hypermobility-related pooling, but the hyper side - higher/labile blood pressure, tachycardia, spaciness, etc - didn't show up until the Cymbalta. It took a while to convince the doctors that it was not, in fact, just random, and that it was indeed triggered by Cymbalta.

In my case I think it's a combination of joint hypermobility syndrome/EDS/whatever and sympathetic hyperactivity triggered by taking Cymbalta, with maybe some borderline small fiber neuropathy involvement (cause of that unknown, none of the usual and not-so-usual tests were positive). Since the root causes are not in themselves really treatable (though we may be able to do something about the sympathetic hyperactivity), I mostly focus on symptom management. No obvious autoimmune involvement for me.

I have Joint Hypermobility Syndrome - depending on who you ask it's either a subset of hypermobile EDS type or a related condition. The joint pain and disability developed over time, but the joints were always hypermobile (moreso than for other kids my age) - they just didn't cause problems, and it's worth noting at least for joints that kids tend to have looser joints than adults anyways, so it can be hard to tell mild cases at first.

I haven't had similar things, but I note that for some people, urination (especially after holding it for a while, perhaps like sleeping?) can be similar to the Valsalva maneuver - some folks "bear down" to stop various forms of atrial tachycardia, and in some cases urination can trigger this too. Maybe that's related?

Ah, reading all the new posts! nowwhat, what you describe with missed appointments, etc is a "soft sign" that I often forget to mention in my own case. I am much more structured now - case in point, today my schedule got all messed up by other people doing stuff they hadn't announced while I was about to start my own experiments, and I just got so flustered, it was really bad. Or, I'll miss a thing in my schedule (volunteer shift, lunch with a friend) about once every week if I'm really busy, once a month otherwise, and then I just flail for the rest of the day. Everyone is so understanding but... augh, it's really annoying. I just can't deal with sudden changes any more, which is frustrating since life seems to be full of people who assume that everyone else is just as flexible as them :^)

As in Naomi's case (in so many ways!) I have severe cognitive impairment from my POTS. In some ways it is less "severe" than the spaciness-while-walking or the presyncope, but rather than being episodic it is nearly constant. I am finding more and more that the reason I don't do as much reading, etc at work as I would like is not from lack of energy or motivation, it's from lack of cognitive ability. Never an auditory learner, I find I am thinking about screenreading software to help me read papers when my eyes aren't working properly. I would say that the spaciness and presyncope are the most disabling in activities of daily living, but the cognitive hit (I have issues with focus, reading/listening comprehension, and speech most of all) is a really big problem, and is the most disabling at work. I set aside the time from 5-7pm as nonproductive time because I've observed I am especially spacey and brainfoggy during that period, which has helped me pace some (worth keeping an eye on how your body and brain work over the course of the day). I'm not sure of any long-term consequences - I do feel (like others) that doctors have generally ignored these "softer" symptoms and their effects on our lives in favor of the more obvious (and more visibly disabling) things like syncope and tachycardia and chest pain, which is upsetting as they're not always the most disabling ones. Something to talk with the new neurologist about in a month, maybe. We're thinking of maybe trying a stimulant (probably Ritalin) despite my bipolar disorder - just to see if it helps the spaciness (and maybe, by extension, the cognitive impairment).

Clair - not sure if this is an option for you with the NHS system, but is there any chance you might get to see a neurologist? It's possible you may get to speak with someone there directly, rather than getting testing and then (not) seeing a cardiologist. At least here in the States I had to get my Holter before seeing the cardiologist, whereas the neurologist was happy to see me before getting my TTT etc done.

Propranolol 15mg twice daily. I was previously on atenolol (a selective BB) 25mg daily in the morning, which worked great but caused some massive fatigue. Propranolol has been pretty good; I went up to 30mg twice daily but had shortness of breath and bradycardia, so now I'm on 15mg.

I swim, walk, and use the recumbant bike at the gym. I can swim for about 30 minutes - doing about 15 laps of slow, easy breaststroke - and I bike for 20-30 minutes on one of the lowest resistance settings with a fairly slow pace. The walking is nearly always downhill, since I have trouble with uphill segments. I walked a lot pre-POTS, and (for reasons of commuting) it's something I continued doing while getting my diagnosis; while I have severe spaciness with walking, and occasional presyncope, I am still able to do it. This may have something to do with why I am largely able to tolerate swimming and recumbant biking for as long as I can, although I'm pretty spacey afterwards too!

If your doc trusts you to be reliable, you could always just write the values down in a notebook and bring that to show him/her - that should work even if you don't have one with memory.

I'm not publicly out, but folks at work and friends know something is going on - to varying degrees depending on how much time I spend around them. So labmates, my advisors, housemates, partner know ~everything, as do college friends I still talk with online. Other folks who are less-close friends just know that I have some neurological stuff; because I had joint pain and fatigue that predated POTS, it's just another dimension for them. I don't tend to tell new folks that I meet professionally, mostly because I don't want people to think I'm not up for being able to work. But folks I currently work with know what's going on.

I tried explaining it as "no blood in my brain, this is why I am silly and feel lightheaded all the time" to a friend. After that I then tried the "running in place all the time" explanation that is on DINET. She said the latter worked much better for her to understand - I think it explained the fatigue much better.

I, too, have found that talking about dysautonomia/POTS as "a heart condition" tends to get a lot more "ohhh, okay, so you will be tired, can't exercise much, and we should treat you carefully" than talking about it as dysautonomia specifically, or as a nervous system condition. It's not entirely true, but it definitely helps get the idea across.

Thanks for the response, all! For some reason the notifications failed to reach me and I missed all of the awesome replies. I suspect you guys are right about the midodrine - that it's a bad idea given both the high BP on the TTT and my overall generally higher BPs when measured sitting at the doctor's office. Looking at my metronomic breathing test, I also got up to 140-150 over 75, so probably not the best idea. Hmm... some of me is now confused. Jangle's analogy helps so much! Thank you! I do know that I can't keep my arms above my head for more than about 30 seconds without feeling really bad, although (unlike some) I can bend over and squat just fine (minus the knee pain). So is the thought that the cerebral autoregulation stuff is not really due to BP but more due to, say, norepinephrine? I wish they'd had a way to measure cerebral blood flow at UW where I got my autonomic testing done. My autonomic neurologist moved not *too* far away, actually - in the same state, but a 3-hour ride by public transit (I can't drive, though may be able to get my partner to get a Zipcar). Depending on how things go with the new guy, I may switch back to her anyways. Hmm.

Trying to figure out how to make sense of what happened today. So my awesome autonomic neurologist picked up shop to a place 20 miles north of here that my insurance will only sort-of cover, and referred me to someone I'd seen once before for an unrelated, pre-POTS issue. I saw him today for the first post-POTS time and I'm trying to figure out what's going on. Context - I have my diagnoses, I'm on a beta blocker and pyridostigmine, my main issues are spaciness and presyncope (whoo summer). I planned to ask him about additional options - trialling clonidine, understanding why midodrine isn't for me, etc. He read my history quickly, talked with me about what had and hadn't worked med-wise (didn't ask about fluids, salt, or compression, other than noting that I was doing all three). He asked why I thought I was spacey, and seemed curious to hear my response (whoo biology education). I said "I'm not sure, cerebral hypoperfusion maybe?" and he replied that he's pretty sure that's not going on, that I don't have low blood pressure when I'm standing (only kind of true?), and that - while there may be some blood vessel-caused localized hypoperfusion, he's pretty sure my brain as a whole is doing just fine when I stand. And that midodrine is totally not the right call, since I don't have low blood pressure. I can't tell if this is my case in particular, or if he's in the "POTS and NMH/low blood pressure in general are mutually exclusive" camp. (note that I don't have NMH, and no low BP when sitting) The problem with this is that, while my sitting BP fluctuates between 106/64 and 140/85 (new since the POTS onset last year), my BP did fluctuate massively in both directions during my TTT - the highest looks like 170/100 and the lowest was 62/50 (near the end, as my HR topped out at 160 and they lowered me down). And I do get presyncope/lightheadedness, which I thought was associated with/caused by low cerebral blood flow? So I'm not sure what to make of what he said versus the symptoms I have and the TTT results (I don't know how much of the TTT results he read, since he seemed to be reading clinic notes during the appointment and hadn't read them beforehand). Edited to add - my TTT BP values did fluctuate pretty hilariously - about every 10 seconds the systolic went up/down by about 20-25mmHg and the diastolic by about 15mmHg - just swinging back and forth. We're going to try upping the pyridostigmine to 90mg 3x/day (up from my usual 60mg 3x/day) and then to 120mg 3x/day and see if that helps. After that we're talking about a stimulant (both of us are nervous about it due to the potential for triggering mania), and it sounds like clonidine might still be on the table. Thoughts? Is he misreading the situation, or did I misunderstand my TTT results?

I've got fibromyalgia, but it far predates the dysautonomia - I'd say it started showing up in late high school/early college, but wasn't diagnosed until my first year of graduate school. For me it appears to be associated with the joint hypermobility issues. I haven't noticed any particular pain-dysautonomia association in myself, but the fibromyalgia/chronic pain-caused brain fog and the dysautonomia-caused cognitive impairment do add together, which is annoying.

Many folks who pool do seem to pool in their abdomen - unfortunate because it's a lot harder to look for than pooling in the legs! The binder theoretically should reduce some abdominal pooling too. Thus far I find it doesn't seem to help with most of my symptoms other than gastric issues, but it's only been about 1.5 weeks... we'll see!

Oh, smoothies are a great idea! Anything liquid or semi-liquid (bubble tea, regular tea, ice cream, yogurt) works better for me at times when I'm not doing so well, and they seem to agree much better with the gastroparesis-type symptoms I get.

Spoke too soon! Last night I was very, very nauseous - got out of bed and lay down on the bathroom floor, then sat up next to the toilet because I felt I was about to vomit. Got a sudden *very* cold sweat, felt the blood drain out of my face, vision went dark, immediately lay down and was dizzy for a while. I got up and walked quickly around the house to get a pillow and blanket, but was very lightheaded the entire time. No needles this time, and I didn't vomit (so it wasn't just quasi-shock from the vomiting itself)! Hmph.

I probably eat about five or six times a day. I eat three normal meals (breakfast/lunch/dinner), plus a snack in the afternoon and a snack right before bed, and sometimes one mid-morning too. In the snacks I tend to eat fresh fruit, nuts, cheese, toast (good for nausea), plain rice (also good for nausea), saltines, or (occasionally!) chocolate or another sweet. For away from home times, I grab granola bars, chai lattes (they're pretty high-calorie), random baked goods, cups of soup, keep Goldfish and nuts in my bag, etc. For nausea I eat Goldfish crackers (my secret vice). What I would do with the nausea is try several things and see what you tolerate best - for me it is plain carbohydrates or nuts. You might find that raw veggies (carrot sticks, fresh peas, etc) are better for you. Whatever works, haul that out when the nausea is particularly bad and you need to snack.