erik

Here is the Hyperpnea in Postural Tachycardia website. The Valhalla, NY folks are not crackpot researchers and they happen to be investigating the issue of increased breathing as it relates to POTS. Keep in mind this is related but tangential to what the UofIowa doc is saying... because that doc measured masumeh's pulse and saw no undue increase in pulse upon standing (basically the POTS is gone now though it was there before). As I "read it", that doctor was not claiming hyperventilation to be the cause of POTS... he was suggesting an intervention that will hopefully help. Here's quote related to the Valhalla study (backed by American Heart Association): I personally hope that they turn something up that helps understanding and treatment for POTS, syncope, whatever. One thing to note is that they state "hyperpnea which activates pulmonary stretch receptors" which implies that if one can intervene in the hyperpnea, one can mitigate stretch receptor stimulation and perhaps reduce later consequences.

Quite true! In the old days a nose ring and a mohawk would do the trick too... not so now-a-days Oh, also if you're the type of POTS person that gets an adrenal surge from being upright it might pay to get places really early and let your body physically recover a bit before a class... not to mention recover from the effort of getting there. I guess you'd be in the business of "scheduling" the stressful events as best you can... facing known extra stresses head-on so you can maximize the windows where you get to face the normal stresses of school. Not fair... but that's the situation. I knew a fellow that had finals rescheduled due to personal events... there is a remote chance that some scheduling accommodation could help when that comes up eventually... either spreading out, or doing back to back... or better yet having a main date and a backup date established up front. If you're like me, some days are just "off" days and it is stressful just worrying about the possibility of ill-timed "off" days. It would be ideal if a prof could understand and accommodate that... perhaps wishful thinking... but it can be worth bringing up those issues up front as you see fit, as people can surprise you some times. And "philosophically" give yourself license to be self-concerned... bordering on "selfish". This is tough and always a challenge to find balance doing, but it can be important. Depending on personality this can feel unnatural and I don't know the trick to it, but find a way to be firm and assertive as best you can (if you're not already). I'm just throwing ideas out there... obviously you know what fits you, your personality and your situation best. Just brainstorming here.

Kudos! I'm a solid walker too. I've got a water carrying backpack, which I find to be essential. Loaded with ice & water it keeps a constant cool feeling on the back and a solid supply of liquids (water or water+NUUN now) available with a hose dealio. Fill it light and it's light... fill it full and you get a little extra upper body/back workout and plenty of water! I make sure I'm hydrated before a venture... then down 2+ liters upon leaving and have a 90oz capacity in the backpack bladder. Sometimes I'll finish it, sometimes not. Today I went without the backpack and came back 5 lbs lighter (water weight of course). Today was without caffeine to dehydrate me... but at other times I pit caffeine for energy against constant water flow for hydration and it balances out okay. Without the backpack, I couldn't do that very well and caffeine would be a bad option except for short stuff. When I stop, I sit or lay down immediately... or do the "squat maneuver thing" which stretches the lower back (my weak point) and gives some blood flow for a bit (but get up slowly By contrast, something simple like standing in line can trigger a feeling of impending doom (worst case, not always) so I too get symptomatic benefit from moving, like you! I think we here are super athletes no matter what we do... we have to fight and manipulate our bodies as much as a triathlete.

I can throw out a bunch of tidbits for consideration: Consistent fluid intake should help the body keep up blood volume better. Doing that over time can help promote the active contents of blood (the plasma, proteins, etc. that do more than just the water in the blood) but that takes days. However, just having more total volume of blood in the short term (even if it's "thin" or watery) can be helpful especially if your POTS involves blood pooling to less immediately useful places (like legs and such) since there is more fluid "left over" to keep supplying the brain and elsewhere. "Pooling" can occur in the abdomen from eating, although perhaps a modest bit of that can be tolerated or helpful (as opposed to a major rush and redirection of blood that comes from a heavy meal). I've read that chugging water can give an immediate blood pressure increase. Electrolyte (sport) drinks are designed to facilitate rapid absorption (both of the nutrients and the water) so they might get into you even quicker than straight water. Having the salt in there (like Gatorade does) can also help with water retention (sudden high salt tends to get retained by the kidneys and to retain salt they re-absorb water too) so that can help explain the peeing away of water but better holding on to gatorade and such. The Gatorade has some other key electrolytes, so those might be helping keep stuff more balanced... too much plain water can gently push electrolytes out of whack... and I tend to think we are sensitive to fluxuations tighter than the standard "normal blood test" margins. Even a modest bit of sugar can trigger some extra response (above plain water) that happens to help... too much might go the other way. There can be a bit of "satiety" response that comes from ingesting stuff. It's a mild effect but for a body in a shakey autonomic state it could be a bit helpful. I find that a healthy "habit" can be a little calming... like they say some smokers develop response to the tactile aspect of smoking (by association)... perhaps we get a bit of that as our body gives up "feedback" over time for things we do that help (a bit of "classical conditioning" going on perhaps).

I hope that a school administrator would be able to be appraised of your medical condition and work something out with the teachers officially. If you have not done so yet, I'd say to inform them up front, as opposed to waiting until you miss a day, so it doesn't play as an "excuse" after the fact but is a known circumstance and just something to deal with. At a minimum, people usually respond more positively when given warning (as opposed to feeling ambushed by a tough situation and getting unduly defensive or uptight). I'm not sure if there is much you can do about the general issue of other people being implicitly encouraged to attend while ill... but at least you can hopefully cover yourself for extra absences. It wouldn't be the worst thing to "get a little OCD" about carrying some Purelle or whatever. I always wonder just how effective the masks are for infectious sorts of things. I would ask a doctor specifically about that. If they said it offered some real protection out in public then I'd give it serious thought... perhaps it could become a fashion trend Overall, there is the obvious of minimizing loads on your life in general, so you give yourself a buffer or margin for some down/recovery time as best you can (and minimal extra stressors... I hope things are getting better on that front for you). For example, even if you know you can handle 15 units... if at all possible, drop to a minimal classload until you get into a rhythm and have some time to begin recovering. If there are administrative requirements on "progress" there is a chance that exception can be made. I don't know about scholarship eligibility requirements (I believe you mentioned this prior), but it is at least worth asking if exception can be made there... sometimes even hard rules can be bent if you bring up the issue with a counselor or administrator and get lucky. Perhaps there could be a "fluff" class that could substitute for official requirement and buy you some slack as you get used to managing all this. Better to slow progress a bit and make it through than to hit a roadblock. You will most likely begin to recover or fine tune treatment and lifestyle over the coming months and surprise yourself eventually. I think your diagnosis was pretty recent, right? You can frame any "request for accommodation" in that light too, point out that early recovery accommodation is key to making some progress despite the chronic nature of the condition.

Good to have things pinned down. Great to have the solid cardio workup. It seems like you made it through this diagnosis rather efficiently, especially compared to many. Was it Autonomic Center in Birmingham, AL that got most of this done so fast? It was not long ago that you were stuck with a frustrating cardio who didn't give much credence to autonomic issues at all! So glad that turned around and you've got results. Much credit to your persistence. Congrats to that... very tough to do when one is run down by an illness. I bet you are on the road to a solid recovery. Hope so.

Some gyms have a cheap/free trial offer every now and then which you might be able to use to try some stuff out first hand... I guess places that sell the stuff would too but I just don't know so I'll throw out my gym idea just in case! It sounds like people really vary as to what exercise approach & positions they can get away with. For me, standing still is worse than most any activity... as moving something about tends to help. Don't have a specific recommendation except perhaps some break dancing and good pop-n-lock moves (really pump the blood around)... you can go horizontal for some moves or even bust out a head spin which really keeps the blood from pooling

What are the short term benefits of a diuretic to POTS? A temporary increase in plasma osmolality? An indirect impact on Renin-Angiotensin-Aldosterone-Vasopressin-et.al.?

As do you have ours. Get well-er, soon

The scale is cool, but it's "raw" numbers would be more helpful than any resulting calculations it comes out with (since they're making assumptions that likely don't apply and are "average" norms at best). A more direct "hydration" device might be better, although the notion of measuring impedance in multiple areas of the body (particularly comparing fluctuation in regions known for pooling) is interesting. Your scale likely measures through both legs. This one is targeted at dehydration specifically and they chose the chest: http://www.hospimedica.com/?option=com_art...temid=266860000 I wish that ER's used this device rather than looking for Orthostatic Hypotension as an indicator of dehydration (or that nuclear study was cheap & trivial). ZOEwi sounds like a fun Wii game too... In addition to "hydration" of circulatory system, remember there are things balancing intracellular hydration/electrolytes/nutrients/flows such as very tight PH constraints and metabolic needs of each cell type. Traditionally, supplements like creatine will "pump" stuff into muscles specifically and are known for bloat... more subtle things are at play too like "osmolarity gradients" and such, which can set up flow between tissues of the body. All too complicated for me, but fascinating. A person can be well hydrated in blood but dehydrated in tissue, and vice versa. Was there anything that might have brought on this "good streak"? I know I feel best when my body is magically non-bloated but balanced in hydration. Don't know how to maximize that but it is an observation. When I'm overhydrated I feel sluggish, although that is the doctor recommended state.

It might be auto-immune too. Sometimes I end up attacking myself over my own Bologna Syndrome! I figure an overactive spleen might be implicated too... when there is an ooze of black-bile here and there Tachy, many thanks. I will print your article and present it to my doc next visit (wearing my House T-shirt and dropping a few references to the latest Mystery Diagnosis episode

I think it is smart to try. I haven't done it yet, though I've excluded or reduced various other things for extended periods to see if I was sensitive. I wish you luck... and do let us know how it goes.

It is understandable and useful at the same time! Tough to balance those things, and they pulled it off well in my opinion.

I did test positive for IgMDBS antibodies "Immunoglobulin Medical Doctor Bologna Syndrome" antibodies that is. Mine are off the charts sometimes. Perhaps it's genetic or perhaps caused by some environmental exposure. I think there is a correlation with POTS, though... research will bear me out on this one day.

I'm tempted to just ask that the doc give me the blood test to prove I am a hypochondriac. When they say that there isn't one... I say, well I guess YOU have no basis for YOUR concern then either, right DOC? Sorry, feeling like a smart aleck today... bit of repressed anger here. This is very bad to do, but I have a private list of symptoms and a "public" or "doctor" list. I manage them separately for fear of dumping things on the doc. However, this is horrible to do because a doc needs the full picture to do their job. But it seems an inevitable compromise and I hope it doesn't bite me... like there is some clue sitting in an odd minor symptom. Oh well. Sorry, not much help... but I have sympathy in the frustration aspect at least.

Buspirone comes to mind off the bat. However, since you're on a benzo already they say it won't feel as anxiolytic to you by comparison (and takes time to kick in). However, it is intriguing because they do try to ween people from benzos to it at times. It is anxiolytic AND antidepressant. (It will not replace your beta-blocker function directly... not many things will, but perhaps it can have indirect benefit) They also used it to augment other antidepressants that aren't cutting it for anxiety. I don't know if it is compatible specifically with zoloft, but if zoloft was good for your depression but lacked anxiolytic effect perhaps it could be augmented with this??? I know it is odd to consider "two" new meds, when there is enough anxiety over adding "one"... but since you were otherwise comfortable with zoloft perhaps this is a possibility. Also, there is the remote chance that benzos can aggravate depression (and also are known to become less effective over time). Sometimes SLOWLY tapering them while replacing with something else can get someone to a better place after the transition. As you know all too well, every med has its ups & downs. Transitions can be difficult or have to be altered if they don't work out. I applaud your fortitude in addressing the anxiety and maddening/saddening aspect of autonomic dysfunction directly! It seems so important to manage the physical factors thoroughly to minimize psychological factors... and it is important to manage psychological factors since they aggravate the physical autonomic symptoms. You are wise to take such a proactive approach. I think you have more bravery than you give yourself credit for Since you have been well screened in terms of cardiac conditions, there shouldn't be a big risk from anti-depressant medications. As always, I'm expert at little and certainly no doctor! Just brainstorming things to consider. Obviously, professional medical consideration is essential. http://en.wikipedia.org/wiki/Buspirone

I edited my prior post above and am throwing in this "cross-link" here too. It is a difficult issue to balance out since it's an asymptomatic condition most of the time and we are a class of patients living on the edge of hypochondriac accusation. Diagnosis can be aided by having a "baseline" measure done, but I don't know how one argues for this baseline measure since there are no symptoms yet! Anyway, for EDS it sure seems like it should be standard practice: http://dinet.ipbhost.com/index.php?showtopic=13160

Here are some specifics on the Long QT issue: http://www.hrspatients.org/patients/heart_...qt_syndrome.asp http://www.sads.org.uk/drugs_to_avoid.htm A family history can be considered. A relative with this diagnosed is said to be reason for specific screening of an individual. My pops has this, so I'm eligible for screening (or should be... though I'll be called a hypochondriac for considering my life to be valuable). It is something one can proactively check for and monitor during initial use of a medication in the rare event that such a condition exists. It is an issue that can be safely managed. In terms of critiquing the study... I note that they are unaware of LQTS and it's association with sudden death and anti-depressant medications. They should have at least mentioned this in their "research" (even if they dispute it for some reason) since it is a documented circumstance and can explain some of their statistical findings. Hmm. Maybe UCSD's internet link was down for a while and they couldn't google this issue?

I have read that several meds (including some anti-depressants) can be contraindicated if one has "Long QT syndrome". That is a specific arrhythmia that would tend to show up on EKG (sometimes only with stress test). Other than for specific conditions, it is very difficult to interpret the articles that are based on large groups of statistics and apply them to individual situations. It is unfortunate that you are pressured by the choice and not assisted better by your doc in this regard. That stinks. I'm a saddened at your doc's tact (or lack thereof). They might be hoping that giving you some control of the process will help... but that can also just invite more anxiety too. In general, anti-depressants are a very safe "class" of drug and can usually be ramped up slowly too. The SSRI's are often used to help dysautonomia, so you might get a double benefit there? At the same time, one can get orthostatic intolerance from many psych meds too... so it is ironic and a bit confusing and somewhat trial & error I guess. Various tricyclics have quirky (and often useful) specific characteristics so there could be one that happened to help with other things too, but it's beyond my knowledge. Looking at "off-label" use can give some hints about a drugs less obvious "character" and might be handy. Have you selected some that you are considering that we could help you "analyze"? Did the doc have a specific one in mind at any point? More importantly, has a cardio doc screened you for basic heart function, perhaps during the dysautnomia diagnostic process... often people with dysautonomia end up having very clean "bill of health" on the heart itself (despite conditions that mimic heart trouble).

I slept in a lazee-boy for years simply because it somehow made me feel better... this was before learning of all this POTS stuff. I had no idea why but it was significant enough that I almost "feared" my bed. For me the couple times I'd sleep in a bed I had significant but mysterious "anxiety" feelings and disturbed sleep (perhaps other symptoms that I didn't know to keep track of). I don't know if I buy the "avoid vascular deconditioning" explanation... if you have "denervation" or one of the other various causes of POTS then that is not the direct cause (though deconditioning can be a compounding factor). There is a remote chance that keeping a slight "load" on the system avoids the ping-ponging of an unstable autonomic management that dips down too low and panics in response (disturbing sleep and inducing little panic things). My blood pressure isn't usually super low (except briefly when POTS is in bad phase and orthostatic hypotension is extra pronounced) and my heart rate rides very low when supine. Perhaps keeping my "baroreflex" a little loaded was keeping my HR up slightly and voiding disruptive surges. I've recorded myself in the 30 bpm range during sleep at times when fully supine (that's decent bradycardia)!

I did not know florinef was estrogen inducing... I have heard that about anabolic steroids but didn't expect it from the "glucocorticoid/minercorticoid" aspect of fludro. I definitely felt the "mood effects" (hormonal stuff) as my body adjusted to it. Although I did not start knitting or watching Oprah while taking it, I did have extra "feelings" at times (which is rare . Luckily that passed after a few days! As a side-note, a family member had high estrogen level and this was attributed to extra soy in her diet for many years trying to keep protein up as a vegetarian (she now strictly avoids soy after having cysts removed and attributed to the high estrogen)... I have heard most soy is "estrogenic" (though some forms are available which are not). I have no idea how valid that assertion and concern is, but some people have are weary of it too, at least if their body is on the high-estrogen side already. I will probably resume fludrocortisone and hope it's side effects go easy on me. As to the estrogen issue... I figure I have such a wide safety margin in my masculinity that it is of little concern Well, at least I talk a good game, anyway

Midodrine is an alpha (adrenergic) agonist. Many hormones/chemicals can have similar action but each is kind of "tuned" to hit various places in the body (veins, heart, brain, metabolism/glucose). I do think norepinephrine/noradrenaline is quite similar in effect on veins (but has more generalized effect too). There would be plenty of others, I'm sure, but that is one we tend to be familiar with. Also, a dip in something can make similar effect since all these things are "opposing forces" but never balanced... the body is never, ever balanced & happy. Always "resonating" like a very strange shaped musical instrument

Here's a nice ADH page! It acknowledges the secondary constricting effect so you are on to something: http://www.cvphysiology.com/Blood%20Pressure/BP016.htm Since I'm being overly detailed here... there is the fact that a hallucination/delusion requires "belief"... so if you "feel like" creepy crawlies are on you but you know they are not, you are not hallucinating. Technically (so your probably not guilty of formication). Just being extra nit-picky. Probably not too useful.

DDAVP (desmopressin) is the synthetic med most like ADH/vasopressin... and "mostly" tells kidneys to hold water. Midodrine "mostly" tells the veins to constrict. Of course these things always have multi-effects... for example, some key kidney regulation happens to interact with vasodilation hormones (angiotensin/angiotensin II). Just pointing out the primary effects of those two meds/hormones. BTW, I get a brief mild tingly head thing shortly after really intense exercise (even if I continue with regular pace... as in "interval training" things).

Haven't had flu shot before. Probably won't start this year, but not sure. Tough call. It's something that "group managers" push because of social statistics and the fact that even those for whom a flu is mild or uneventful transit it to others (such as more immuno-compromised or otherwise vulnerable). Extremely poignant example of group vs. individual perspectives on health management. Lost ancestors in the world-wide-flu epidemic, so I know such things are possible even though this likely won't turn into that (fingers crossed). One amazing thing I (and many others learned) from this swine flu "hype" is that there are an incredible number of "regular flu" deaths annually. I'd prefer to simply live on a remote island for a while (hmm... wait a minute... I already do I do plan to do some minor "contingency plan" things like making sure there isn't anything too major going on in my life this coming flu season (in case I am down for an extended period of time). I have the luxury of having no dependents.