peregrine

blue: oh man, yes. When I was first having symptoms, I walked into my doctor's reception wearing sandals, shorts, and a camisole, with an overshirt in my bag. The receptionist said "Well, you're sure dressed for summer, honey!" in a really disparaging voice, totally ignoring the sweat literally pouring off of me. I was not pleased :^) Not looking forward to the coming summer (I'm in the States) - even here in Seattle it gets a little warm (80F max most of the time) and the thigh-high compression and abdominal binder are not so happy then, I fear.

martiz: Oh, totally. I'm not saying she *doesn't* have CFS - quite the opposite! But I find it interesting that she appears to have ~no symptom overlap with me whatsoever despite many folks on this board having overlaps between the two.

Hunh - I didn't realize there was such a test! They haven't talked about the biopsies; I don't know what she thinks on that but I will ask her next time. Right now we're waiting for me to get back in town on 3/17 and then get those other tests drawn on 3/18 (so will probably see her ~3/23 or 3/30 as she's only in on Fridays).

I'm super-sensitive to heat - anything over ~80F sends me into a nasty state. But I also have found that I'm more sensitive to cold than I used to be; it's less my extremities and more that I just can't get my central core to heat up and I get cold very easily even if it's not that cold in the room. My neurologist has told me to try taking cool or warm showers/baths instead of hot ones, but I can't stand being that cold! (plus it's worse on my joints and muscle tension and pain)

My half-sister has CFS, but in her case for the fourth category (D) she only fits criteria 3 and 4 - she has temperature intolerance due to constantly running a decent fever, but denies anything along the autonomic spectrum of stuff. The overlap seems interesting to me; when I was first diagnosed I repeatedly poked her saying "Are you sure you've never felt X symptom?"

Ok, so I will reply to my own question, since I unexpectedly couldn't just go through the metal detector this time. They had me go into a separate room after the usual patdown (but I got to bring my hubby into the room with me) so they could wipe the abdominal binder and my hands with pads to check for explosive residue. The two ladies told me that the next time they'd probably just suggest that I get a private screening to start with. So - FYI in case you fly. (hubby suggests that I take it off in the bathroom right before and re-don it right after - *shrug*)

Silly question - has anyone had any experiences with the TSA (Transportation Security Agency) flying with abdominal binders? I don't go through the new scanners for various reasons, so when I don't have the choice to go through a metal detector, I get patted down. Would they want to do additional screening because of the binder? (and, for anyone who wears one with metal stays, if anyone does - what do you do?)

Well said! This forum has turned my situation from "oh gosh what is this horrid thing" to "ok, I've got this issue, I can live with it." I never was into support groups/fora online much before, but this group is a lifesaver!

Welp, more updates. The HB A1C, HIV, anti-SSA/Ro, vitamin B12, protein screens, etc all were normal, and my 24-hour urine sodium shows I'm not dehydrated, so the narrowed pulse pressure due to the Valsalva has to be something else. Time to pull out the more expensive tests for paraneoplastic syndrome and amyloidosis (TTR specifically, so looking for familial amyloid neuropathy, which affects the ANS). Ah well. At least I'm drinking enough fluid (passed 2.65 liters during the 24-hour urine sodium test) and am not dehydrated! Doctor writes: "All your lab results have returned very normal. So no common cause for autonomic small fiber neuropathy. I am sending you a lab slip by snail-mail for the two special tests (paraneoplastic panel and TTR), which you can get done at your convenience. Your urinary sodium is nice and high, so you are drinking enough and using enough fluids to get rid of it."

My doctor didn't go right out and say the words "you have small fiber neuropathy," but she said that the QSART and my GI tract issues hint it strongly enough that we're chasing down potential mechanisms (e.g. undiagnosed diabetes). So I counted it as diagnosed, even though the "magic words" haven't been said.

Hee - I just started wearing a binder similar to that today - doctor said to try it as she thinks I might be pooling in the abdomen too and she says most of her patients can't tolerate waist-high stockings, so I'm doing binder plus thigh-highs. So far it's been riding up a lot - more stopped by my breasts/tiny bit of flab and not staying far down enough, plus my skin (which is a touch sensitive) is super-red as it's been squished and wedged around a lot today. I can't tell yet if I'm feeling better as a result, although I'm fitting better into my pants, so the nausea isn't as bad. My big issue is that it appears to not be built for someone who has hips and a large... rear end for lack of a better term? I also have a very short back (18" from the protruding bump at the base of the neck to my waistline), so even though this one is only 8" wide it's still causing issues. I think it will do for now, but I may have to get a custom one (or sew one myself, or get a corset!) if this persists.

I wonder if we can put together an infosheet about POTS/dysautonomia and if there's a medical professional we can run it by for san-checking? Or does such a thing exist and I've missed it? It might be nice to have just a pdf folks can print out and hand to their doctors. Obviously anyone can put together one of their own (and probably should, it's worth a shot), but if we have a more official-ish one I assume we'd need someone with an actual medical degree to take a quick look at it :^)

I haven't noticed it, but then I only take Ventolin (ah, I miss my old CFC-ful albuterol inhaler, why did they get it back under patent!) when I'm doing exercise and don't have much mental room for cognition. But I will keep an eye out for it now!

Would you be willing to define low/normal/high flow and what they refer to specifically? I've seen the terms around but can never quite figure out what's meant :^)

Naomi - I'm not sure how the SFN fits in, although from what I understand she's implying that it might be responsible for my blood vessels failing to constrict appropriately, thus causing pooling. Plus she says it may be causing the gastric symptoms I describe, and she says she think it's more likely SFN based on my bringing that up. From what I understand the QSART and similar tests are about it for SFN diagnostic techniques, with the exception of biopsies which I understand are pretty rare. She is testing for diabetes specifically (the HB A1C) because that can cause SFN and thus dysautonomia. I will let you know about how the tests go - I'll get the labs drawn on Monday and the 24-hour urine sodium started Monday morning and returned Tuesday. Mack's Mom - thanks! I count myself as super-lucky to be (unintentionally) living in a place with two dysautonomia specialists, a gastroparesis person, a medical genetics team that likes hypermobility and knows about dysautonomia, and an actual autonomic testing setup. I honestly hope this becomes a lot more common so folks don't have to travel and people know about these illnesses. And rarely gets above 80F in the summer. (I guess that's my plug for Seattle?)

Chaos - thanks, that makes sense. Not that I like the outlook part, but hey - that's life! Thanks so much for the explanation. Rama - gotta love it! I agree it's hard to say. Personally - if you go with a mechanistic approach - I would argue that hyperPOTS and poolingPOTS (including low blood volume POTS) (from what I've read) are different. But the role that neuropathy plays in both, or low flow versus high flow, or which are autoimmune, or which can be induced by illness or trauma, or which is common in kids who can grow out of it... eh. It's hard to say!

I personally began hyperventilating during my TTT (within the last 30 seconds, but was breathing fast before that), which I'm sure made things worse and made my BP and HR fluctuate more. But... they were already fluctuating like crazy and I was already pooling before I started breathing fast at all. I don't hyperventilate at all otherwise unless I'm walking up a steep hill, not even if I feel like I'm about to pass out. I'm sure it made my TTT worse but if hyperventilation was the cause for all of my ANS issues I'd sure be surprised :^)

Oh, also, if folks haven't seen the NDRF (National Dysautonomia Research Foundation) Handbook, you can find it here: http://www.ndrf.org/NDRFHandbook.htm It's packed with a super-awesome glossary, great descriptions of tests and treatments for dysautonomia, etc. It mostly looks at POTS, NCS, PAF, OI, OH, and MSA, and doesn't cover mast cell stuff at all. Plus it's free, always a plus. I've found it to be a great read.

Let me answer the ones I can think of: POTS- postural orthostatic tachycardia syndrome: your heart beats too fast when you stand up, and you have other symptoms too (often lightheadedness, fatigue, nausea, etc). Just having tachycardia when you stand, with no other symptoms, isn't really POTS per se (although some people disagree about this) - the idea is that you have that and other symptoms too, which is why it's called a syndrome. As far as I know there's nothing fundamentally wrong with having a posturally mediated tachycardia if nothing else (the fatigue etc) is happening. NCS- neurocardigenic syncope: also called vasovagal syncope, the commonest cause of syncope in the general population. In terms of its effects it can be similar to POTS (in terms of daily problems between episodes of passing out), but it doesn't have the tachycardia (fast heart beat). It can be caused by "insults" like seeing blood, getting poked with a needle, etc, or it can happen as a mechanism for passing out (syncope) in people with POTS... people disagree about these a lot (how much POTS and NCS do or don't overlap). As far as I can tell the only thing people don't disagree on is that POTS involves tachycardia! NMH- neurally mediated hypotension: low blood pressure caused by issues with the nervous system (rather than, e.g., dehydration or low blood volume) IST- inappropriate sinus tachycardia: your heart beats too fast caused either by a faulty sinoatrial node (one of the biological pacemakers in your heart) or is part of dysautonomia; it's a subtype of SVT and is pretty uncommon unless part of dysautonomia SVT- supraventrical tachycardia: a general class of tachycardias (rapid heartbeats) caused by the part of the heart above the ventricles (sinus node, atria, atriaventicular node); distinguished from ventricular tachycardias, which are life-threatening in most cases PVC-premature ventricle contractions: a particularly weird type of heartbeat (although single events of these are pretty common, most people will show them from time to time) where your heartbeat starts in the ventricles (the bottom part of the heart) rather than in the sinoatrial node PAF- pure autonomic failure: orthostatic hypotension (low blood pressure when standing), especially in older folks, resulting from the sympathetic nervous system failing to successfully regulate the heart and blood vessels MSA - multiple system atrophy (or Shy-Drager, again, classification is Hard apparently): progressive degenerative neurological disease, includes degredation of the autonomic nervous system and thus shares many symptoms with things like PAF, POTS, NCS, NMH, etc but unfortunately is lethal after some period of time.

So my reaction to the TTT (as described elsewhere here) was weird - my doctor basically described it as "starting off with hyperadrenergic POTS and then adding some pooling on top of that." Roughly - I went from 80 bpm to 120 bpm in the first 30 seconds of the tilt (after which point it fluctuated like crazy), which she said looks like hyperPOTS, but then I started to visibly pool (and I felt it too) and got worse over the next 7.5 minutes before they tilted me back to lying flat before I was apparently about to pass out. Apparently the QSART results and my description of some GI tract issues are making her think small fiber neuropathy as well, which she said could be causing the pooling (I think?). I'm a little confused - it seems like most folks here talk about either being hyperPOTS or having pooling (or having other types), but not about having more than one etiology. Has anyone else been told this? If so, did treating one avenue of failure (sympathetic NS or pooling) help at all, or help only halfway, or what? Sooo confused.

Nothing at all like that - she discussed a swallow study as something we could do if things persisted and I got referred to the specialist, but nothing more. Should I just keep an eye on it (I keep a symptom journal on a daily basis), try to follow her advice, and tell her how things fare and then discuss further testing, or bring it up now, or what?

Now that the diagnosis is in... I apparently have a combination of hyper-POTS and pooling POTS together (double the fun!) and NCS. Symptom-wise: ever since early childhood - alternating diarrhea/constipation, constant low-grade nausea (tummyaches), phobia of needles (thanks, Dad... *sarcasm*) first syncope episode with needles - age 15 age 25 (3/2011) - begin taking Cymbalta for fibro/joint hypermobility-related pain. Begin having episodes of spaciness, typically while walking (took me a while to realize that was the main time I was on my feet... duh). Also begin having overheating/sweating. 7/2011 - realize one morning while getting dressed that my heart rate was at 156. Stop taking the Cymbalta. No changes in symptomology. 8/2011-present - other symptoms (nausea, headaches, blurred vision, lightheadedness, failure to filter sensory input, more GI tract issues) develop. 2/2012 - diagnosed. So in my case... basically say "some early GI stuff, plus needlephobia-triggered NCS, then sudden development of Cymbalta-triggered POTS" and it's about right.

Looking at my TTT data, I went from 80bpm to 120bpm in less than 30 seconds, but took a while after lying back down to get back to something normal. In my case, I do have pooling issues (I first felt those about 2 minutes in), but the doctor says I also have some hyperadrenergic issues - she said that the TTT "started hyperadrenergic and then you added some pooling on top of that." Don't know if that info helps you out, but that's what she said was happening in my case.

She thinks gastroparesis is quite possible, and may be another indicator of small fiber neuropathy that she thinks I might have. There is a specialist here at UW in Seattle who deals with gastroparesis (and apparently loves seeing new patients), but she says it's probably best to just see how it progresses (since it seems fairly minor) and try to eat more frequently, try to avoid huge carbohydrate loads, and try to avoid majorly fatty foods. I've certainly noticed that eating tempura makes me nauseous if I eat too much, but I am happy to stop eating it and eat rice and sushi instead - it's the fat in particular that makes me sick.

Ooo, wanted to add more now that I've stared at the 12-page test printouts some more! (Okay, I am a dorky biologist, I am not supposed to be excited about bad tests results, but we knew something was wrong, so sue me) So apparently my pulse pressure was reduced during the Valsalva, which can be caused by one of deconditioning, dehydration, or sympathetic nervous system failure. But we know it's not the third due to the normal response to metronomic breathing. Regarding the TTT specifically, "Excessive oscillations in mean BP > 20mmHg for more than 50% of head-up tilt duration. Symptomatic abnormal heart rate response with increase > 30bpm [whoo, POTS] and >>120bpm within 10 minutes after head-up tilt with increased oscillations, consistent with POTS, reaching a maximum of 160bpm. Remark: patient started hyperventilating during the last 30 seconds of this test. She had visible venous pooling." For the TTT specifically, those last 30 seconds or so my heart rate stopped fluctuating and went to 160bpm steadily; my doctor said that if they hadn't tilted me back it would have rapidly dropped to zero (umm), my system was in overdrive, and I basically would have undergone a brainstem reset similar to how opossums play dead when they're being chased by a predator (which is NCS in her words). So we are opossums being chased by an invisible predator called POTS! *grin* The blood pressure chart looks very weird (it's not supposed to fluctuate that rapidly) - at the worst my systolic blood pressure was 62.5 and my diastolic blood pressure looks (based on the graph) like it was about 50. She also gave me Dr. Grubb's paper "Postural Tachycardia Syndrome: Perspectives for Patients."