peregrine

No problem! It sounds like I don't have any damage to my esophagus from acid reflux, and the morphology is overall normal. One weird thing was that I still had some food in my stomach despite not eating for 8 hours (they asked for 6 hours of fasting and I happened to do 8)... he suggested Iberogast (and told me to talk with my PCP about it) to help with that and the symptoms in general. Still waiting on the results from the biopsies for bacteria and lactose intolerance. I was skeptical of Iberogast initially (herbal mix?!), but this study is pretty convincing: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2004.02275.x/abstract "Meta-analysis: phytotherapy of functional dyspepsia with the herbal drug preparation STW 5 (Iberogast)" - apparently it has a significant impact on stomach symptoms and is as effective as conventional medical treatment in some cases. Now just waiting for the results and the news from my PCP! [btw, corina, I'm actually living in Europe now - Zürich specifically]

Just wanted to post a positive experience with procedural sedation and POTS in case folks are looking for case studies. I had an upper endoscopy (mouth to the bottom of the stomach) this morning with procedural sedation with propofol. The doctor used double his normal dose of saline (he usually uses 250mL but used 500mL with me), and they used a mouthguard (standard, I think). O2sat (via pulse oximetry) and blood pressure were both monitored. I remember feeling "funny" and then waking up feeling very drowsy but otherwise okay; I was also pretty talkative! For the next hour or so I was very dizzy (required my cane to walk safely), but otherwise have had no POTS symptoms triggered (dizziness like this isn't normal for me with POTS or otherwise). Jaw also feels fine, despite the H-EDS and jaw troubles. Only downside is the sore throat! But I'm taking it easy today and resting at home just in case. I didn't even feel faint from the IV, which is a real wonder as that's usually a serious trigger. I had spoken with the doctor on the phone yesterday and he seemed receptive to my concerns/suggestions; definitely a good thing to do with POTS before any procedure involving meds!

Blue, just read your comment in my email. One possibility re: cutting down on meds is that the doctors are concerned about rebound headaches, which are not uncommon with chronic pain medication (you can read about them on wikipedia). This might explain their concern, rather than being concerned about you overusing opiates for Bad Reasons or something like that. (Regardless, it ***** a ton, and I am super-sorry to hear that!)

Heading to my regular doctor tomorrow AM to talk about having been sick for a week and coughing up green stuff from my lungs (pneumonia? who knows). Ewwww! No fun. I'm curious if anyone here has had an increase in "sympathetic" symptoms - specifically higher heart rate and higher blood pressure - when pretty sick. Between guanfacine (similar to clonidine) and atenolol, my blood pressure has been a nice 95/60 lying down and 105-110/70 while standing up, and heart rate 55-60 while lying down, 70-80 standing. The fludrocortisone (Florinef) hasn't given me supine hypertension - it actually hasn't affected my blood pressure at all, though it does help my symptoms a lot! With this sickness, though, my average lying and sitting blood pressure has been more like 125/75, and I've even peaked to 150/95 (scary for me), and lots of tachycardia and palpitations, plus the usual issues controlling body temperature and having strong tremor. I'm still taking my meds as usual and getting plenty of fluids and rest, so I'm not sure what's going on. Is this a typical thing? How do you address it when you're sick with non-POTSy infections? My neurologist didn't seem to have much to say about it...

Welp, I've been on guanfacine for about 2 months now, so figured I should answer my own post in case it's helpful to others. It took a few weeks for me to ease off the clonidine - I got some rebound hypertension during the transition, so we briefly upped my guanfacine to compensate, then took it down again. Guanfacine has generally been good - my insurance doesn't cover it, but it's pretty cheap (about the same as the copay would be for a month's supply, about $8). I even did some statistics last night (since I keep records) - here are the results that were statistically significant! Guanfacine does seem to worsen my heat tolerance and nausea somewhat compared with clonidine, and I do report more other symptoms. On the other hand, I am less fatigued, and also have fewer issues of microsleeps (nodding off in the middle of the day while not trying to nap), both things that were worsened by clonidine. I also dream more - back to my pre-clonidine dream amount - which I hadn't even realized the clonidine had decreased! There are a few good papers out there about the comparison, which were helpful: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1430114/ - "Differences in psychic performance with guanfacine and clonidine in normotensive subjects" http://www.ncbi.nlm.nih.gov/pubmed/6994771 - "Central effects of guanfacine and clonidine during wakefulness and sleep in healthy subjects"

My psychiatrist today suggested I talk with my neurologist about guanfacine, a more selective alpha agonist than clonidine (an alpha-2A agonist instead of just an alpha agonist like clonidine). She says it might have fewer side effects, since it's more selective. I know that one person here has used it, but had to stop due to side effects. Does anyone here have thoughts or experience, or any insight? Thanks!

Let's see here... I'm going to count times that were not just bad presyncope, but actual about-to-black-out types of episodes (actual syncope only once, but plenty of "stay with me, come on, breath slower, stay with us here.." kind of stuff. As a 15-year-old kid I was super-afraid of needles (not the combative type, just crying and terrified). My pediatrician tried Emla cream (a really good topical anesthetic) for a blood draw. It worked - I didn't feel the needle - but I fainted in the parking lot afterwards (stepfather caught me, fortunately). I was also sick at the time - probably didn't help. [since then I have gotten much better, and just lie down for blood draws] Nearly passed out again (not quite black out) after having to get a restick for a blood draw at 22. At 25, about two months after POTS stuff started, the cardiac electrophysiologist I had an appointment with explained - in detail - how an ablation is done. I apparently got white and shakey (and kept talking about vomiting and wanting to lie on the cold, hard floor); end result, she had me lay down pronto, and was pretty impressed. At 26, about a month later (whoo fall birthdays), I got my first MRI with IV contrast, and nearly passed out again when they put the cannula in. I'd gotten some xylocaine beforehand, which meant repeat needlestick, which didn't help. Two separate times since then I have nearly passed out due to pain - once while my PT did some serious myofascial work on my abdominal wall, and a second time when I had xylocaine injected to treat an abscess in a particularly sensitive area. At 27, a year later, I got another MRI with IV contrast (whoo annual screening), and almost passed out again. So, other than the one real syncope, it's all been very, very close (I was lying down for almost all of the rest, which probably prevented a full syncopal episode). But I would say mostly due to fear (the real syncope at 15), and sometimes very close due to pain.

Hi k&ajsmom - sorry to join the conversation so late! I have been taking Lamictal for the last 8 years, and it doesn't seem to have caused any POTS-type reactions before I started having POTS several years ago. As far as I know it's pretty good for that. SNRIs mostly affect your serotonin and norepinephrine levels (Wellbutrin, which is not technically an SNRI but is a non-SSRI antidepressant, affects norepinephrine and dopamine). I have noticed Cymbalta (an SNRI) affecting my POTS symptoms in a slightly worse way, but since it was what seems to have triggered my POTS in the first place, that may be specific to me. The explanation about your partner is kind of weird - what I would say (not a doctor, of course, but) is that adrenaline levels in your body are what tend to affect sweating, adrenaline rushes, high heart rate, etc. Things like SNRIs mostly affect the levels of norepinephrine in your brain, which can decrease chronic pain (as in Cymbalta) and depression, but not so much in your body most of the time, although Cymbalta can increase your blood pressure slightly; basically, it mostly does things in the brain. However, if episodes with adrenal surges are due to stuff happening in your brain (perhaps like PTSD, for example), then the SNRI can work on preventing the response to things that trigger those episodes - basically, you see something that stresses you/triggers you; you don't react as strongly because your brain neurotransmitters are more stable; ergo fewer body responses because your brain isn't going haywire. Does that make sense? Certainly for me the Cymbalta and Lamictal didn't do anything for the body in a good way! I have found that clonidine does help in that area, though - it works in the brainstem to "mute" signals that encourage production of adrenaline in the glands on top of the kidneys, so you get mostly body effects. I know clonidine is used for ADHD, but I haven't seen anything for it in PTSD; for me it does decrease my overstimulation and tendency to look behind me to make sure nobody is coming up behind me (since I space out a lot), so I wonder if anyone has looked at that in PTSD. Anyways, hope that is helpful! Feel free to pm me if you have other questions, or ask here, or whatever :^)

Like Rama, how much it helps can be hard to tell since every specialist has a different opinion and approach. For me, it was useful to look at my symptoms and look for patterns - for example, I don't pool visibly unless I've been in a hot shower, but I do sweat a lot and startle easily. During my TTT, I did pool visibly. My blood pressure is more often high than low. I get lightheaded and spacey, and overstimulated, but have never actually fainted due to POTS. If you look at my labs (e.g. the autoimmune ones), they are negative, and there was no sudden start or linked illness or accident. My standing/lying norepi has never been tested. Based on 24-hour urine sodium, my blood volume (this is a proxy and not an absolute like you would get with a radiological test) is pretty normal, and I retain salt just fine. I have joint hypermobility syndrome, which is (depending on who you ask) a form of EDS. I don't get any of the MCAS symptoms. My QSART was positive, so I probably have some mild neuropathy, and my toes are numb. The end result of thinking about things that way was that it helped guide treatment. For example, because of the limited pooling and okay blood volume and salt retention and normal to high blood pressure, we have never tried midodrine or Florinef, but I do wear compression stockings and take salt because those are generally helpful as volume expanders (my neurologist described it that way to the medical student he had with him one day, who was trying to figure out why I was on betas and clonidine but also eating salt!). Because there doesn't seem to be any autoimmune component to my POTS, we haven't thought much about IVIG or similar treatments. Betas have been helpful. After a while of badgering my neurologist, he agreed to try clonidine, which has made many of the sympathetic-type symptoms (sweating, startling, being overwhelmed, resulting fatigue) much better, so my SNS was probably a bit overactive. The combination of joint hypermobility syndrome and numb toes also suggests some more minor role of pooling, so I probably have some combination of secondary (JHS/neuropathy) and primary (hyper-ish) POTS. Pyridostigmine hasn't helped, so my parasympathetic nervous system is probably okay. So I guess I would say - types of POTS can be a useful way to think about it, but I find it's more helpful to look at your symptoms and see where they fit in terms of what parts of the body are affected, what treatments they respond to, etc. I find that figuring out what treatments I respond to is more helpful than looking at test results, mostly because in the end it's all about what works! Being a bit too rigid about classification can also keep you from trying something that might work, but isn't typical for a given type. *shrug*

I don't drive, and probably never will again at this point (I have a license, have never owned a car, but used Zipcar to get cat litter, etc - an hourly car rental). I mentioned to my psychiatrist (when we thought it was a med side effect) that it didn't seem safe, and she agreed; I did drive briefly last summer with my partner coaching me, but in the last six months I have been much too spacey to drive. I like what hilbiligrl says above - "I always feel like I'm "stuck" in some type of "pre faint mode" but for long periods of time" - certainly no fun! My neurologist has never said I can't drive, but when I mentioned that I didn't feel safe, he said "okay." I think he trusts my judgment. I'm reluctant to give up my driver's license if I don't absolutely have to. My dad suggested I get a motorcycle or scooter so that when I am too spacey I will at least only injure myself. Wow, thanks, Dad, I really appreciate the help. These days I am uncertain about bicycling (an okay way to get around Seattle) - I can't ride an upright bike for unrelated medical reasons, and I don't want to spend the money on a recumbant bike until I know it's safe. Back when I did bicycle (upright bike) it was a good way to get groceries home. One can certainly order heavy things like cat litter from Amazon, though it's a little more expensive. I've considered, if biking works, getting an electric assist bike to navigate steep uphills to save my heart and lightheadedness! It's annoying having to think about public transit, etc when figuring out where to move to next year. Does the place have good public transit? Does it operate later at night, on Sundays, etc? Can it get me to an airport, hospital, etc? Is the place walkable so I can walk to buy groceries since I can't drive? Etc. Very glad Seattle meets all of those criteria, and I can take buses nearly literally door to door from home to work if I absolutely have to. In some ways I'm glad I found out the driving thing before moving out of the city or buying a house... I always wanted to live in the country but now I think it's just not an option.

Hmm - it depends. Walking is my usual form of exercise, and I do feel worse during (mostly the horrid spaciness and some lightheadedness) which is better when I stop and sit down afterwards. For "real" aerobic exercise (recumbant bike, stress test, hills while walking), definitely worse during (more spacey, more lightheaded, more completely out of it), but I do have to sit and cool off in stages so I don't fall over when I get up from the bike. Though, during the stress test, I had a non-recumbant bike, and they said "keep pedaling to cool off, then sit there! That will keep you from passing out" and I was thinking "no, get me off this bike, I am about to pass out and sitting here with my legs hanging down is worse!" Sadly they had no place to lie down after the stress test (seriously, I was kind of surprised and peeved). For anaerobic stuff, or stuff with controlled breathing (like lifting a heavy item, or pulling against resistance, or spirometry), definitely worse at the end/after - like doing a Valsalva maneuver. I almost collapsed after the spirometry was over, much to the chagrin of the pulmonologist (I told him that it would be rough, he said "it's ok, everyone feels winded and lightheaded" and sure enough, they didn't get that I meant it would be more severe for me).

I only itch when I'm visibly pooling blood - e.g. after a shower. But the itching then is super-fierce, and the only thing that removes it is sitting down and raising my legs. I do have probable SFN (based on QSART, not biopsy), but I tend to have more numbness in my feet rather than itching.

Are you referring to Julian Stewart's 2012 paper ("Mechanisms of Sympathetic Regulation in Orthostatic Intolerance")? I found that paper quite useful, particularly the data on how TTT responses are different in folks with POTS and folks with NMH/NCS that isn't an end consequence of POTS. His theory on cerebral blood flow being largely independent of the sympathetic nervous system does help explain why, despite treatment with clonidine, my spaciness has not improved, while pretty much everything else - including classical SNS effects like sweating and overheating, and also fatigue that I ascribe to SNS overactivity - have mostly stopped happening to me, quite dramatically. Granted, I don't *know* that spaciness is due to cerebral blood flow issues (some parts of it, like always looking over my shoulder, becoming overstimulated, or starting more with sudden input, have also calmed somewhat with the clonidine - that hypervigilance-type behavior does go hand in hand with the SNS), but it does fit nicely into my personal mental model of how my POTS works. To clarify, also, clonidine has helped somewhat with my seated/lying down cognitive impairment - I can now read papers for work! - but not with standing cognitive impairment; I still get flustered when I'm standing up. I'm wondering if perhaps it's helping indirectly via removing fatigue and distraction (if SNS overactivity is reduced, perhaps I am able to pay more attention to things/concentrate better when my brain already has enough blood due to sitting, whereas in the past I had enough blood, but had too much SNS activity and so couldn't focus), if it isn't having direct effects on cerebral blood flow? Who knows; no easy way to measure it without TCD, which seems to be not in general use anywhere, and certainly not for personal experiments like this! I do get cognitive impairment with clonidine at other times when seated/lying down, but it does correlate nicely with clonidine-induced low blood pressure - it makes good sense that one would have cognitive impairment when overall blood pressure is low. Would you be willing to explain more about the parasympathetic innervation of pia matter idea? I haven't heard anything about it and am curious!

I don't know about the specific value of change in HR, but it doesn't surprise me. Like you said, swallowing increases HR. Drinking through a straw you're tensing a lot of the muscles in your neck and upper chest to create suction, and I could easily see that increasing HR for a short period. Our bodies also have small HR changes with breathing - your HR goes up when you inhale, down when you exhale (respiratory sinus arrhythmia - the name sounds terrible but that's how the body normally works). Does it happen without a straw if you are able to drink without one?

"That's a diagnosis called Münchausen syndrome and I don't have it." [i'm not sure you would be comfortable saying this to your friend, but what he describes is an actual psychiatric diagnosis that most folks with POTS don't have.]