erik

There is also Dopamine Beta-Hydroxylase Deficiency, which is extremely rare. Of course, I wouldn't know which Dr. Jaeger was referring to, but this is another possibility. I think it is credited with being the first (or only) discretely known pathology of POTS so it comes up as a "classic" reference (but isn't prominent in care). Despite being a profound condition, where one neurotransmitter is absent and being partly substituted by another, it manages to emerge late in life: http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4792 http://www.ncbi.nlm.nih.gov/bookshelf/br.f...mp;part=dbh#dbh http://ndrf.org/dopamine.htm CORRECTION: I was blurring/confusing my memory of NET and DBH deficiencies here. NET is the most related to POTS and the illuminating or "classic" reference I was mis-remembering... and is probably the only possibility the doc was referencing for POTS. DBH is a separate autonomic disorder from POTS, despite resulting in similar symptoms... more like extreme orthostatic hypotension (with compensatory tachycardia). It's also congenital, rather than hereditary according to one article.

I have a thing with reading. Traditional reading mostly... like books. I have noticed at least a few other folks on board here that indicate similar challenge. I am wondering if I could solicit your description and response because I have trouble describing this for myself (and fear bringing it up formally because I can't describe it well). I've had various periods of what is probably "brain fog" or whatever, with one extreme case being inability to think of or spell simple words (but usually milder). I'm convinced I've got something separate that is more specific to reading itself. For me, I think the problem is at least 3 fold: First, is a general attention difficulty. Since reading takes extended focus, I have some challenge with that. Some is simple attention, some is volition. I have brief periods of fascination on a topic. I even buy some books. But I've actually read probably 1 book in the last 20 years (and it was on a "dry" topic I basically already know). Second, I sense that there is something challenged or inefficient specifically with reading for me. I've done a lot for myself with self study over the years, but was not "a natural" in terms of vocabulary, spelling, etc. as a yute. I generally have to digest things in small pieces. Internet information tends to be fed that way so it has helped me. However, I dropped out of college long ago and much had to do with inability to even do basic study (I had survived a long time on compensatory skills & efforts but eventually one has to become a "real student" and I couldn't hack it). Third, I have or have developed a level of anxiety with reading. I have almost a claustrophobic feeling when contemplating sitting down with a book. It is hard to describe. I will also get specific negative feelings while reading, like an "oppositional/defiant personality disorder" where 90% of my mind strays from the book! It is almost humorous. To digest a passage, I will have to recoup myself and re-read a section over and over until I get through it and feel like I actually paid attention to what I was looking at! After a period of reading, my eyes can end up physically "jittery" as though there is a physical fatigue too. So for those of you with reading (or other very specific cognitive) challenges. Would you be willing to describe it? I'm hoping there is a simpler way I can state this stuff! Also, of course, I'd love to hear about any work-arounds or cures I am an adult now, though this challenge does stem back a way. If I were to try to do something about it, should I consult a neurologist, psychiatrist, something else??? Are there "adult learning disability" specialists now-a-days?

Do you know if the physically measured signs have stabilized... or is it mostly the symptoms? In other words, is your BP now more stable... and heart rate more stable perhaps, even standing up? I am curious because I have had some good runs myself (times of symptom relief), but I've always still had the trademark POTS HR increase (well, except for 2 separate days when I hadn't... when my BP was very high). Since you're feeling relatively well, I don't feel as guilty asking Could you do a "poor man's tilt" test some time soon to see if the underlying stuff is stable or if it's still there but symptoms are being helped??? Sorry to press... maybe I can "guilt" you in to doing it... you know, for all us sick folk out here, oh well one! And congrats, BTW. Definitely never a need to feel guilty for an improvement... good news is always welcome!

I'm wondering if it was the Duke study that you are referring to. It implicated BCAA's only in combination with high fat... meaning diets high if fatty & proteiny meats. I'm curious what tie was found with BCAA processing and CFS. There is branched-chain ketoaciduria (or Maple Syrup Urine metabolic disease) but that, like the majority of known metabolic disorders, is pretty extreme and shows up prominently at young age. Perhaps there is some subtler version of something similar? So much of CFS and similar, look like "mild" metabolic/mitochondrial disorder... so this is a very tempting way to approach them which some seem to have success with (supplementing various low level mitochondrial fuels/transits and such).

There was someone on another forum that said higher dose cymbalta (and augmented with abilify) added to fludro/midodrine brought her kid back from barely functional to totally normal (night & day change). I think sometimes people do find med combos that make a huge difference for them. I know I feel somewhat better on Claritin or Zyrtec, but I do normally take the "D" version so I get some "pressor" effect by norepinephrine boost via the pseudoeffedrine (my "poor man's midodrine" I've wondered how much the anti-histamine might be helping me too. I've tried the non-"D" versions a little, but not enough to tell yet.

This article by Grubb does list SNRI as potentially beneficial for H-POTS. Also mentioned is Buproprion which one might call an NDRI... norepinephrine & dopamine reuptake (and also some nicotinic antagonism thrown in). 2008 Postural Tachycardia Syndrome article in Circulation: http://circ.ahajournals.org/cgi/content/full/117/21/2814 It is Table 2 which lists a couple SNRI's in association with "H" meaning "H-POTS": http://circ.ahajournals.org/cgi/content-nw...2814/TBL2189801 Duloxetine (Cymbalta) & Venlafaxine (Effexor) are listed along with Buproprion (Wellbutrin). Others might have similar potential to help. Opinions and actual experience may differ, as always, but they may be worth a trial run.

They do have a promotional discount voucher thing for Armodafinil (Nuvigil) which is the R-enantiomer of Modafinil (Provigil). My doc was open to Provigil, but resistant so far to a traditional stimulant, which I think tends to be much cheaper depending on which form is chosen. I guess Provigil won't be generic until at least 2012 so unless NuVigil really distinguishes itself I don't think Provigil will be much cheaper too soon. Adrafinil is unregulated (kind of a loop hole) and legal to get a hold of but is the older form and perhaps more prone to side effect than Modafinil which is one of it's isolated metabolites. I've tried Adrafinil with some modest alertness effect but I didn't push the dose too much. Despite being unregulated, Adrafinil does not end up being much cheaper than Modafinil for an equivalent dose... so it's of limited use. I've never taken a regular stimulant (other than coffee) so I can't form a comparison but it seemed tame to me (though everyone can respond differently of course). Anyway, I will probably try a 1 week discounted NuVigil (see nuvigil.com) or just a month of Modafinil before too long. They also have discount promotions or assistance with longer term supplies, though it is still expensive no matter what. Might be worth looking at one of those promotions as a more economical means of trying it out, though. If it really really helps it might be worth finding some way to fund it... like if it lets one get back to work or something it could be worth it.

Hmm... well, mouth-to-mouth with an old bag wasn't part of my normal game plan, but if it helps with POTS I'm willing. A chronic illness has a way of changing a guy's priorities. Tachy, you're a fun one to read. You blend your fun and useful insights well!

The adrenals and the thyroid are separate but intertwined. I think when one is sick the body tends to up cortisol in response to the "stress" (and presumably plenty of other things) so long as it can (meaning so long as you don't have Addison's or something). That could explain a bit of a compounding effect and sense that your normal thyroid dose is too much... though again, adrenals isn't same as thyroid, just part of same interconnected system. I don't know if there's a link between thyroid troubles & POTS but there is the possibility that a more general auto-immune thing is zapping the thyroid and creating a neuropathy. Stuff like Sjogren's and Lupus and who knows what else can be rather generalized like that and they are notoriously long term diagnoses. I guess that's a remote possibility.

I had a cold lately and my BP got very solid and steadily high... whereas I usually have orthostatic hypotension. When my BP goes high my pulse gets more stable. Even while I was sick, I felt better underneath it and after getting better I've had a run of good days! Is there a chance your BP has gone up? I think that might be normal when sick and sometimes it can account for some pulse stability as the heart doesn't have to compensate for BP problems as much by overdoing it with heart rate (that is one possible cause of tachycardia).

Oh Carolyn, I'm afraid bigeminy has been outlawed. Please people, only 1 regular heart beat at a time. Sorry, I have a thing for lame jokes... sometimes the lamer the better

I have bouts of this feeling. Its like being "on edge" with breathing... I will get sudden suffocation panic simply from taking a long gulp of water. Haven't had it in a while, but it comes and goes. Keep in mind that the impulse driving breathing is more related to expulsion of CO2 than intake of oxygen... so I've wondered if I have gone mildly acidic or if the sensor (as in the hypothalmus) gets out of whack (the hypothalmus is central to so many autonomic regulations).

I get the internal tremulousness... and occasionally it has emerged to be visible. For some reason my most distinct pattern with this is to wake up that way and have it subside. I've checked blood sugar and that wasn't off at those times (as is possible for hypoglycemia/diabedes stuff). It does seem to be one of those tagalong mystery symptoms of POTS weirdness.

I get it in a mild way usually. Sometimes it comes on associated with different weird feelings but usually just by itself. Not sure why but it's most often for me in the evenings. It's only been severely loud for me a few times and thankfully has passed quickly. Other times, it will be there constantly and quietly but easy to ignore. I am on a med now that apparently can cause it, though it was there before and hasn't gotten worse. Just mention it since sometimes meds have this side effect. Can't caffeine do this too??? not sure. I tend to write if off to stuff like adjusting or insufficient blood flow... like I presume to be behind occasional mild dizziness... but who knows what actual cause/trigger might be.

I may be mistaken and am far from expert at navigating medical care... I investigated this test for myself and I think the "nuclear medicine" departments at most hospitals might be the ones to perform this. Basically, you need a doc that "has privileges" at the hospital to take you on at least in a minimal way (like 1 initial visit) and order the test on your behalf. The hospital I investigated this at has a "referral hotline" to call and they kind of helped me find associated doctors (I was hunting down tilt table & possible blood volume testing). Of course, if at all possible you'd want a doc that might know what to do with the results of the test! I'm not sure what that would be, other than things like fludrocortisone, salt, water, licorice... I guess NSAIDS help build volume maybe? Etc.

I believe H1N1 is more like a "family" of virus rather than a specific one. For example, there are other H1N1 as part of the yearly flu vaccine already... different H1N1's than this year's new one, which is sometimes called "2009 Novel H1N1". So this year, since the regular flu vaccine and the Novel H1N1 vaccines are separate for now, it's sort of akin to needing instantaneous double production... next season, reportedly it'll be merged into the regular vaccine along with any significant newbies from this coming flu season. Are the kids hanging in there Angela? Did the middle son end up sick too? I hope not.

28 is too low especially when simultaneously feeling symptomatic. Definitely need to work with your doc on that, most likely tapering off the BB or changing dosing pattern or something. I have bradycardia without a BB and this makes them not an option for me (contraindicated) at least not without caution... even though they might help me with POTS. Some people do end up using a pacemaker to lock in a minimum, then a beta-blocker or something to tamp down on the tachycardic episodes. But first line of action tends to be adjusting any existing meds, even if they are otherwise helping overall. As a bit of trivia, I recall reading that the lowest healthy HR was 25 in a super-athlete... the distinction is whether one is experiencing symptoms along with the bradycardia or not. Docs will sometimes want to just ignore it... I clocked 40 on EKG in the ER and the doc just said no worries unless other things are bad too... which they tend to be. Also, be sure to investigate if other things can be tampering with your medication metabolism. On occasion our diets (and especially other medications) can interact and make things either more or less effective than normal. Sometimes changing one med can require reassessing the dose of others. There are a few foods known to interact too... and more than a few herbs and such which people often assume are inherently safe simply because they are natural. Just another possibility to keep in the back of your mind in general... especially if when meds seem to be having erratic effect.

Mine fit your description to a tee! "like a double beat...normal beats then maybe a skipped beat and a double beat again." Mine sometimes include a "pressure" feeling that falls short of pain (have only had full chest pain once, thankfully). Mine last only 5 seconds or so, I think. My breathing gets a little irregular too, as the heart gets my full attention for a bit! Though palpitations seem to end up being minor in most cases and I certainly hope yours are nothing serious, I think you are very right to seek attention especially since you describe a rather consistent and kind of longer lasting episode.

I'd stick with the CDC discussion which is not a misconception. One key to understanding this is to realize that one is both trying to inhibit spread and mitigating risk not simply from H1N1 virus itself but from complications such as pneumonia: http://www.cdc.gov/h1n1flu/recommendations.htm#5 Asthma is a qualifier. All three sons have asthma. H1N1 was confirmed.This is the scenario for which supplies are to be preserved... not an example of wasteful supply depletion. Even so, it is still a judgment call, not an automatic "yes". It is most certainly not an automatic "no". It also did not merit anger from the doc, nor even a "defensive" attitude about supplies. Neither of those are/were justifiable, especially given that complications of infection are so clearly evident here.

I guess "EPO" (Erythropoietin) might be a costly trick! Not sure of the critical components but obviously there is hemoglobin which is critical for carrying gases via blood. There are also various proteins that bind with stuff. I think in some ways the amount of the "carrying protein" available can be a limiting factor in the "active agent" that they carry. Some things are not water soluble and require help, some are water soluble but perhaps inactive when dissolved but available when bound to their helper/carrier (or I might have that backward!?). Some of those blood carrying proteins bind to many things and act generally, but some have very specific chemicals/nutrients/hormones they facilitate.Sometimes one is having blood drawn under poor circumstances, but ensuring "solid nutrition" (whatever that is might at least make sure the body is prepared to pump out replenishing blood components. I tend to supplement modestly with protein drinks and get a nice appetite satiety and "mental comfort" from having basic building blocks available... but not sure if it would make a big difference to this issue. Many of us tend to be (or our bodies behave as if) on the borderline of "hypovolemia" and benefit from consistent "overhydration" (salt, fludro, licorice, water) so it might make sense to prepare for blood work when possible by ensuring or overdoing these things for a couple days??? I guess anything that helps with "anemia" might also help??? If it is an dysfunctional or exaggerated autonomic response to the blood draw somehow (as opposed to an actual shortage of anything) then perhaps none of this is relevant! Then I guess a trick might involve minimizing that "response" somehow... not sure what that would involve. Would the "simple" approach of administering a saline IV prior and during the blood draw somehow make the body "notice" less? I know I always feel better from an IV and I usually "test as dehydrated" due to orthostatic hypotension, so I end up with them on any critical care visit. Anybody notice less "blood draw sensitivity" when it's done while also on IV... like during a general hospital visit?

I think you're on the mark with the 2-4 day to replenish estimate. In casual conversation with a doctor friend, he mentioned that recovery from dehydration can also happen in two phases: First, simply replenishing water which can be pretty quick; Second, replenishing the more active components of blood which can take a couple days. Seems like it would apply to blood loss too.

I started flax/fish stuff a while back to conform to "good fat" efforts while dieting (ensuring enough good fats while restricting regular ones as best I could). I continue to take fish oil, usually as a good fat supplement to a high protein and controlled carb mini-meal. I've tried varied doses over the last few years and haven't noticed a profound difference in POTS symptoms. Some studies giving credit to these fatty acids for addressing various illnesses do involve high doses which gets expensive. I continue to take fish oil pretty consistently since it is often on sale! I tend to feel better when I do, but that is partly because it means I am following my diet/exercise goals better at those times!

I'm like potsgirl (Jana), but without pacer... bradycardic baseline and double/triple pulse upon standing (which means 40-50's supine up to 110-120bpm or so standing). I usually skip sitting phase but I should probably measure that too... for me, sitting ends up being closer to supine. Others seem to have sitting conditions leaning more toward their upright state. I don't know if it is most typical to have higher general rates... might be... either way, it is certainly not "untypical" or "exclusive" of our dysautonomia diagnosis.

I don't know details, but I have heard that there is possibility of partial or full recovery once an aggravating circumstance is removed. I have read this about nutrient deficiencies (B12, thiamine/beriberi, whatever) and heard it also mentioned about Sjogren's (an autoimmune attack that can include neuropathy and other things). I think that makes it something akin to the "nerves being continually attacked" scenario. This can be a long term process and is said to vary. I don't know details or know this authoritatively, but that's what I've heard and read.

I feel way better when my BP is high. Was even 190 today which is getting a bit too high. I may be responding to fludrocortisone stronger than I did last time on it... normally my BP is normal and falls badly upon standing. I had high BP with a cold a week ago, then it dropped out normal/low again, now it's high again. Either I'm going volatile, as some with dysautonomia do, my fludro/salt management isn't consistent enough, or who knows what (lingering cold effects without symptoms)??? Anyway, I am unusually energetic but sadly continuing this would apparently put me at risk longer term so perhaps we're in a similar boat. I was hoping there is some way to get the benefit of high BP without the risk!?!? I guess ensuring good blood flow (perfusion) somehow without overdoing the pressure would do it... not sure how to accomplish that! I don't remember for sure, but I think a modest drop in systolic and perhaps a slight rise in diastolic is normal... but don't quote me on that!