peregrine

Hunh - TTT was normal. You describe flushing - has anyone spoken with you about mast cell issues (e.g. mast cell activation syndrome)? Flushing is a big heads up for those.

Just 0.1mg a day in the morning? Hunh. A month is definitely a fine interval between dose adjustments, but - especially since you are taking something else that affects blood pressure - you really should check with a doctor or a pharmacist; my pharmacists always look freaked out when they refill either my atenolol (beta blocker) or clonidine (alpha agonist) since stopping the clonidine suddenly while taking the beta blocker can, in rare cases, cause pathologically high blood pressure that can kill you (rebound hypertension). I don't know how losartan interacts with that, but I would probably be careful with things. Did they give you tapering instructions (e.g. "after 1 week, increase by half a pill daily/switch to twice daily dosing/etc")? The single dosing per day seems odd to me, since it usually lasts about 12 hours and standard dosing is 2-3x/day, but since I'm not a doctor I would definitely consult someone who is about changing the dose unless they already gave you instructions. My neurologist actually isn't really familiar with clonidine (he spent 10 minutes during yesterday's appointment trying to figure out the maximum dosage, which I could have told him in 2 seconds!). Amusingly, my psychiatrist says she is willing to manage it if he won't, since it's used for ADHD and thus she is more familiar with it.

By passed your TTT - what do you mean? Did you have the >30bpm heart rate increase, any decrease in blood pressure, etc? It sounds like (given the high NE and high BP) you might be hyperPOTS; given that you're already on clonidine, it sounds like you have a good treatment plan in that direction. Being hyperPOTS or neuroPOTS or whatever is not a be-all and end-all of treatment (if only it were!) - the experts can't even decide on firm categories or treatment plans for each, other than "if you pool, try these things first; if you don't seem to pool, try this instead" and it does depend a lot on who you see. But knowing that you have those criteria is helpful for you going forward in terms of which treatments to try first, which it sounds like Mayo did by starting you on clonidine.

Kris - I've been on 0.1mg twice daily for about four months now, and just started 0.15mg twice daily yesterday night. The postural hypotension (from standing up too fast) and sleepiness are stronger than earlier, but the postural hypotension had mostly gone away after a month, so I'm not surprised, and it's far less severe than the last time I changed the dose (when I started I would go from 110/70 sitting to 85/45 standing and nearly passed out very quickly several times, so watch out for that - just stand up slowly). I get some side effects from it - more clumsy in general, tremor, mild postural hypotension, and sleep attacks, but for me it's definitely worth it. They want you on 0.2mg three times a day? That's the upper end of the dosing (max of 0.6mg a day) - it seems kind of strange to want you on a certain dose before figuring out if you respond to a lower dose, but who knows :^) If you end up staying on it, you might see if they would be willing to try the patch, which would keep you from having to take your pills three times a day. For me twice a day is fine (since I already take meds morning and night), but I keep wondering about the patch, since I know some folks really like it.

(on reading the below, it's kind of disorganized, for which I apologize - not enough brain to reformat it, but hopefully it's helpful regardless) These days I have less daily sympathetic activity (thank you, clonidine!) - I no longer get an adrenaline rush from things that shouldn't cause anxiety in the first place, like a bird flying nearby or someone walking past you on the sidewalk. I still have issues with things that are really hard on the body - pulmonary function testing (just resting, not exercise) flattened me for the day. So those things are clearly not anxiety, right? I got a very clear surge when I hit my head hard in lab on Wednesday - no anxiety that time (I knew I would be fine, was just bleeding a lot), but the starting/ending BP measurements at the ER (140/90 vs 112/69 over 75 minutes) were pretty impressive, as was the tremor and sweating and the usual sympathetic response. So that's clearly not anxiety, that's just POTS. I have had anxiety (and corresponding POTS issues; when I have fight or flight issues these days they are absurdly strong, I just have them for more reasonable reasons than before) over reasonable stuff, like people trying to break into my lab late at night. I think pretty much anyone would have anxiety in that situation! If both anxiety and POTS are leading to a "fight or flight" response then they'll happily feed off of each other, which is why that particular issue was more of a problem for me than a standard panic attack, which would have made me a mess for about an hour, not for six hours. The problem comes when there are things that are borderline - so, for example, last week my advisor told me in the middle of lab meeting that we had to have this paper in by Friday. Two days from the meeting. At that point I begin to have an adrenaline rush with the usual effects. The question is - why? How much of it is the sudden "oh crud gotta get this done let's load up the adrenaline to get it done" response and how much is the "oh crud there's no way I can get it done and now I'm scared of my advisor confronting me in front of five other people" response? Having had anxiety and intermittent panic attacks before the POTS began, this does feel different - part of me is going "it's my fault for not getting it done" and the other part is going "no, it's not your fault, your body is responding this way, it's not you freaking out." A good test for me is trying my cognitive-behavioral anxiety techniques - if I can't get myself to go "it would be okay to not feel this way, I am reacting to a thing that is not as bad as I think it is" and think it's true, it's probably the POTS and not anxiety, or there's less anxiety. Like lemons says above, breaking the cycle can help - I'm certain that if I weren't already on edge about meeting with my advisor and having lung function testing later, I probably wouldn't have reacted that strongly, though I still would have reacted. So working on anxiety will probably help POTS - trying to figure out triggers (I have spoken with my advisor about not confronting me with no warning in front of others, since the resulting episode really decreases my productivity for the rest of the day) and learning to recognize when it's "just" POTS (i.e. there's nothing else anxiety-causing around) and when it's a combination of the two, where working on decreasing the anxiety might help reduce the POTS symptoms. And keep in mind too that if you already have experience with anxiety, your brain will go "oh gosh this feels like an anxiety/panic attack" and will react accordingly even if it's just POTS - it still feels the same physically in many ways, and the near syncope experience often includes a feeling of impending doom even in people with no history of anxiety. You might benefit from sitting down and noting (perhaps in writing on a daily journal) when you have episodes and see if there are triggers that would have made you anxious in the past - perhaps note if there are different symptoms if you are anxious or not?

For me, although methylphenidate (Ritalin) was helpful, the big shift into being able to do cognitive-heavy work was taking clonidine. I'm not entirely sure why - my best guess is that with my body not reacting to everything with adrenaline rushes, I was less tired and more able to focus instead of always fighting down the fight-or-flight response. I still get spaciness - another brain fog type thing - but I can sit down and read an academic paper, which is really important for me work-wise and is a big win. Of note, I don't think this means most folks can or should take clonidine - it's not really a brain fog medicine per se and whether it works probably depends very strongly on why you have brain fog in the first place. These days I mostly just take the Ritalin to counteract the sleep attacks from the clonidine.

Weird... for me, an SNRI (Cymbalta) was what triggered the "spaciness" that then four months later developed into POTS. In my case, going back on the Cymbalta did worsen the lightheadedness, spaciness, and tachycardia somewhat even with beginning a beta blocker. What helps me the most right now is clonidine - a centrally-acting sympathiolytic that inhibits norepinephrine release - but it's hard to say if the SNRI worsened things because of the increased norepinephrine levels due to NE not being cleared in the synapse. Strangely, although I'd thought that Cymbalta was effective for chronic pain due to the NE effects, a 2010 paper says it's more likely the sodium channel effects, which is unexpected. So... in my case: Imipramine (tricyclic antidepressant): central NE reuptake inhibition (more NE in the brain) -> no POTS symptoms but severe speech issues Wellbutrin (dopamine/norepinephrine): central NE reuptake inhibition (more NE in the brain) -> no POTS symptoms Cymbalta (serotonin/norepinephrine): central NE reuptake inhibition (more NE in the brain) -> spaciness and later POTS (causal role not entirely clear for POTS itself) Clonidine: central NE release inhibition (less NE in the brainstem) -> less brain fog, perhaps less spaciness, general improvement ... I don't know what to make of the whole mess, but for me I just try to avoid things that increase norepinephrine. I unfortunately don't have serum NE levels to share!

wishing&hoping - I got mine from REI (mods, if this link is not allowed, please delete it, and my apologies!): http://www.rei.com/product/765283/rei-trail-stool It is small enough when folded to fit with the bottom in the water bottle pocket on the side of my pack, and then I use the strap that goes horizontally across the side of my pack to hold the top in. I think the weight limit is maxed out at 225 pounds, just FYI. When flying I take it out of the side pocket and put it in the overhead bin (my pack goes under the seat in front of me). The only downside is that it is less good for sitting in long lines that move steadily - like airport security - since you have to move too often; it is also pretty short, which can be good if squatting helps you but can be harder if you have trouble getting up from low chairs. I find that holding the corners helps me rise up (bad knees and hips). My model is the one pictured - no carry bag or cloth bottom. The other big thing I use it for is museums - they usually let you take it in even if they make you check your bag, as long as you tell them it's a medical need and not a camera tripod! (sorry to hijack the thread, folks)

Yeah, mine said the same thing - it looked like hyperPOTS based on the heart rate response to tilt (with pooling, just to be confusing), it responds to beta-blockers and especially clonidine, so... not much point, especially since I have issues with needles causing syncope so an upright blood draw would be tricky (though with an IV I now know it might work out).

As far as I know, the 24-hour urine samples are mostly done for urine sodium (to figure out how much you are losing and make sure you're not eating too much salt too) and, as an initial screening test, to rule out pheochromocytoma; I don't think you can test for hyperPOTS based on urine alone. Many docs don't seem to test for hyperPOTS even if it looks like you have it (and not all autonomic testing facilities do a standing catecholamine draw) - what seems to mostly happen is looking at symptoms and trying to treat for it and see if there's a good response.

What you describe fits me exactly to a T - and it does seem to be strongly linked with my spaciness, especially the visual issues with attention; it makes it very hard for me to navigate in crowded places like busy sidewalks, malls, airports, etc - I get really confused and overwhelmed because I can't navigate. In those situations it's often easiest for me to just take hold of the person I'm with (if that's feasible - e.g. my partner or housemate, not so much my labmate!). None of my treatments have made it better (meds or things like stockings), though the clonidine has made the blurriness worse. I get (and got before clonidine, but they were shorter) blurry episodes around 10 seconds to 2 minutes that resolve spontaneously or can be forced back into clarity, but it's uncomfortable to do so. Occasional depth perception loss too, which is annoying and means I have to be extra-careful to not trip on sidewalk cracks or step off the curb.

The QSART is basically a test to see if you have issues with the peripheral autonomic nervous system signalling to your legs and arms - basically, do you have small fiber neuropathy? The reason they test for it is twofold: first, it is an easy test, and second, many of the causes of SFN, even autonomic SFN, are treatable (diabetes, HIV/AIDS, vitamin issues) so it's a good call to rule it out. In my case both TTT and QSART were positive, though the QSART weakly so; we did a ton of bloodwork and ruled out all the usual causes of SFN, so it's just "idiopathic" (due to no obvious reason). A non-significant QSART doesn't mean much about whether you have POTS/dysautonomia or not, it just suggests whether you might have issues with nervous signaling in your legs and arms that influences autonomic functioning in those areas. If you have the autonomic workup done at UWMC, they test QSART as well as Valsalva.

Thanks so much - this is awesome stuff! How does one volunteer to be an inpatient person - do you have to live locally or have a specific set of POTS symptoms/subtype?

Currently on clonidine (my wonder drug!) and atenolol (and Ritalin, but that's not for the tachycardia). I don't have issues with betas - no obvious mast cell issues for me despite the hypermobility issues. You might think about a calcium channel blocker as others have mentioned; I took diltiazem (Cardizem) for several months but found it wasn't for me (edema, lack of effectiveness against other issues but it did remove the tachycardia). If other folks are thinking about beta blockers, keep in mind they come in different "flavors": (1) Where does it target? selective (beta-1 receptor targeting only): atenolol, bisoprolol, metoprolol, etc. Little to no effect on breathing so safer for folks with asthma etc, though still not totally safe!. non-selective (beta-1 and beta-2 targeting): propranolol, nadolol, Eucommia bark, etc. Hit the lungs too - safe if you don't have breathing issues, less safe with asthma etc. (2) Does it go into your brain or not? lipophilic/crosses the blood-brain barrier (so has effects in the brain): propranolol, metoprolol etc. Can have more side effects affecting the brain like insomnia, nightmares, worsening of depression, etc. hydrophilic/does not cross into the brain: atenolol, nadolol, bisoprolol, etc. Little to no effect on sleep, etc, though perhaps still less safe for folks with mood disorders. (3) Does it block other things too? Carvedilol and labetalol block both beta receptors and alpha receptors, but I don't know if they are selective/nonselective and lipophilic/hydrophilic. You might consider whether a given beta blocker your doctor suggests/you are interested in fits these categories - e.g. if you already have insomnia and asthma, you might want to try atenolol; if you have migraines and no asthma, propranolol might be a better choice since it might help the migraines too. (nb - I am not at all trying to imply that folks should be taking betas, especially folks with a history of MCAS etc; mostly just that not all betas are the same and it's nice to know why you are taking a given one over another.) I was originally prescribed propranolol for its central nervous system effects - my ANS neurologist suggested that its targeting the hypothalamus might ease some of my overall issues, but it didn't end up doing anything special and the breathing got to be an issue. I haven't had any central nervous system side effects from the propranolol, but atenolol is overall better for me.

Urine sodium the day after I saw the autonomic nervous system neurologist was 316 with 2.65 liters of urine (I'd been doing about 6g a day at that point); after I started on 10g of salt a day it was 400? 600? again 2.65L. She told me over the phone and I forgot, but she said to stop loading quite so heavily. Now I take 6g. Since I have no issues with salt retention, etc (and my BP is usually fluctuating but rarely too low), she didn't want to put me on Florinef (*shrug*).

I think part of it is that they are comparing to kids who have POTS, many (but not all!) of whom seem to recover once they become adults. So - if you put it that way - us adult POTSies do have a poorer prognosis, since we don't tend to recover the way the younger set do. I personally don't feel that "poorer prognosis" is the right term - it's not like most folks' POTS is progressive or anything - more "tend to continue having POTS rather than recovering as many adolescents do" or somesuch would be better. edited - I do believe the scientific literature discusses the kids-vs-adults difference in POTS duration/recovery, but too tired right now to dig up citations :^)

No issues here, and I've gotten the flu shot for years. In terms of pain, it does feel about as painful as a tetanus shot because both are injected into the muscle, rather than the fat. I have found success with taking an NSAID (like ibuprofen) beforehand, and then about five minutes after the shot I start swinging my arm to make the shot diffuse more quickly; for me it prevents a lot of the pain, and I just sleep on the other side for a night. (if it helps, my POTS isn't autoimmune or post-viral)

I wasn't such a fan of the NUUN tabs, although my neurologist recommended them. I personally find that the recipe I gave at the top - but with no sugar, just the salt in water - works well for me; they usually mix salt and sugar (as in gatorade or this mix) for when folks are seriously dehydrated and need the sugar as well to keep them going. I find that the combination of sugar and salt is kind of icky, honestly (when it tastes good, in my experience, you know you're dehydrated!). Part of the reason that Gatorade doesn't taste as icky (besides the flavorings) is that it has far more sugar than necessary, which kind of hides the electrolyte tastes. These days I drink a liter of water with a teaspoon of salt in it (to get my 6g above dietary salt daily), then drink plain water, tea, and milk after that, which works well for me.

Waking up without numbness and having it at the end of the day sounds like you might be compressing a nerve while you're up and about that has a chance to come back after you sleep/rest overnight - perhaps something as a result of your posture, walking gait, etc. I'm not a doc (of course), but when/if you have the monies, make sure you mention the pattern to them. I don't think that most small fiber neuropathies present that way, but I could be wrong.

I haven't heard that from my autonomic nervous system neurologist - both she and my current neurologist just describe it as something that's not likely to change too much for better *or* for worse. Not something progressive in most cases (as far as I can tell), just something you have to learn to live with and treat as best you can. I would definitely suggest being reasonably forward with your primary care doctor about seeing a specialist and getting treatment - trying various medications, taking the more conservative treatments like compression and extra water, etc. No point in waiting when you already have the diagnosis. Staying active if you can is always a good idea, but be mindful of not pushing yourself too hard with daily activities (learn to keep an eye on your energy levels so you know when to rest). (I'm late 20s, symptoms started two years ago now and I finally got my diagnosis a year ago. What a relief for me, knowing that it wasn't something physically wrong with my heart - but I have other chronic health issues, so "one more chronic health issue" isn't the blow that it is for some folks. Pre-diagnosis I was pretty active - and still am much of the time, although active = walking to work, not extreme sports or jogging or anything - but definitely not deconditioned. I take a variety of prescription medications, wear stockings, drink plenty of water and take my salt; although I'm not 100% back to normal, I am able to function better than when I was first diagnosed.)

I currently take atenolol - I took propranolol in the past, which gave me worsened shortness of breath (I have a history of asthma, so this is not terribly surprising).

I've got numb (loss of sensation, no tingling, just can't feel much) big toes - at first I thought it was Christmas Toe (a problem that backpackers get) - I had hiked 250 miles with too-tight boots), but it didn't recover. When my primary care doctor referred me to the autonomic nervous system neurologist at the local hospital, she did mention that specifically. I have also had a period of tingling numbness and weakness in my ring and pinky fingers, but it resolved fine; my neurologist just said that it's probably the POTS. Numb toes *can* be associated with small fiber neuropathy, which can be caused by things like diabetes, HIV, vitamin deficiencies, etc. You might talk with your primary care doctor about getting those ruled out - they are simple blood tests and may help allay some anxiety - and if you do have one of those (I don't have any of them), they are treatable and should be treated. Peeing all the time sounds like issues with salt retention - before I started eating salt I peed all the time when I drank extra water. It sounds like you should have a talk with your doctor - if you can't get a specialist to see you, maybe show him or her the DINET website and see if he/she can run some simple tests like the poor man's tilt table and some blood tests to start with, and maybe talk about some of the more "conservative" (less likely to be harmful) treatments like salt, water, compression stockings, abdominal binders, etc for starters. (regarding the PVCs - everyone throws them on the monitor from time to time, as far as I know; I threw a couple on my Holter monitor but my heart is fine)

Hah! I never knew I had cervical issues until the last few weeks when I saw a good PT for my shoulder and jaw (he has hypermobility in the family, so he is really good at knowing how to treat patients with it). We've been working on posture and building up the neck muscles to keep the cervical spine from being wibbly - fun times.

Not a doc, obviously, but those don't sound like panic attacks to me - in the past when I got them it was just sweaty palms, feeling pale, nausea, and rapid heart rate, but certainly not that often and not with the hot/cold thing. If it isn't responding to the cognitive-behavioral stuff you're trying (breathing/refocusing), that's probably more evidence too. As a question - when you are worried about your health, do you have the same reaction? Or is it only "out of the blue?" If it's just random, and doesn't ever happen when you're actively worrying about your health... it sure sounds like not just an anxiety attack. With other folks - see what the Holter says. The surges are weird and take some getting used to, but just remember that "this, too, shall pass" - it's not an episode that will kill you, it will finish and you will feel better, you have no control and you did nothing wrong and you're not having a panic attack - that helped me a lot and it might be helpful to you. You might also, if you have insurance that will cover it, see a therapist for a few sessions - a good therapist can help you both come to terms with the diagnosis and give you suggestions on how to treat symptoms that feel like a panic attack even if they aren't one.

Just discontinued pyridostigmine for a week with an eye towards going off of it entirely. End result? No change at all (maaaybe slightly more energy, actually, but I'm not certain that's not just fluctuations in what I'm doing on a daily basis). It seems to have given me a little energy boost before I started clonidine and methylphenidate (Ritalin), but compared to both - and especially to the clonidine - the effect is basically zero. Whoo for fewer meds. I am glad that it works well for some folks, though!