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peregrine

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About peregrine

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    Pacific Northwest, USA

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  1. 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
  2. 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 ver
  3. 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!)
  4. 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 ha
  5. 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! Guanf
  6. 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!
  7. 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
  8. 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,
  9. 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.
  10. 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
  11. 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 passin
  12. 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.
  13. 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 ascr
  14. 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?
  15. "That's a diagnosis called M√ľnchausen 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.]
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