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NMPotsie

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Everything posted by NMPotsie

  1. Also, no idea if this helps, but I tested postive for antiparietal antibodies when seeking out the cause of my B12 issues.
  2. Hyper my absolute count looks like this: neuts 5.62, lymphs 2.51, monos .55, eos .14, basos .04 when not infected. Mayo tested my IgG, IgA and IgA Ab (?--says tissue transglut). All indicate negative. What does this tell you? AZ girl thank you for that information. It's funny because I'm so used to infections that I know I'm getting one before symptoms show up in many cases and the doctor checks me and sure enough that white count is high and then the symptoms show up shortly thereafter. Usually my infections are visible; with MRSA it was skin lesions and eventually an issue in my nose, but the respiratory stuff is difficulty swallowing, coughing, and lymph nodes like golf balls in my necks. Considering that those Ig tests were normal, would you pursue the testing you mentioned? I will do so if there is a chance it might help.
  3. Hi. I have very similar numbers as you and allaboutpeace. I am on propranolol, which I thought might lower hr and bp when sitting/laying and since mine are already low I was nervous about that. Oddly, they haven't changed much since I started the BB, but my standing hr and bp have dropped significantly unless I am having an adrenaline surge. Before my POTS symptoms started my bp was always low and my resting hr was in mid 70s even though I was a competitive athlete. With POTS my resting hr is much lower but standing goes to 130s.
  4. Another newbie question here. In my defense, I did search for this first to avoid bothering you but there were many hits with infection and I couldn't find what I was looking for I am concerned that I am have had multiple, recurring infections in the last few years. I had two lengthy bouts of MRSA in 09, which is when it all started, and then always seem to be fighting a cold or infection of some sort (sinus, throat, respiratory, etc.). Was in ER Memorial weekend for kidney infection, strep infection on my tonsils almost a month to the day after the kidney thing. Antibiotics make me sick and I have strong negative reactions to most of them, so I'd like to head this off. I have two questions I guess: is this normal with POTS, and if so, why? I can't seem to find a clear answer to why these issues with my brain/heart/etc. would open me up to infections. Secondly, is there anything anyone does to prevent it? I guess it would require an answer to the first question. I was taking 1000mg of Vit C a day until my doctor said it is too hard on my kidneys. One doc suggested Alpha Lipoic Acid as it helps the C work better, but I don't really understand why. For the record, though my white count is always high with these infections (19+), it is normal at other times (9) and I don't have any other disorders that could seem to be causing this (though they suspect MCAS, but I don't know if there's a connection).
  5. I have a horrible time falling asleep because of my adrenaline, which never seems to shut off. It seems like I either wake up with tachycardia (140+ from dead sleep) or wake up coughing because I have bradycardia (38-44 pulse) and have to "restart" my heart. I couldn't live without naps because I never get a full night's sleep; I can only sleep 2 hours or so at a time.
  6. Wow, this is all very confusing. My doctor thinks I am Hypovolemic and possibly have MCAD, and that the adrenaline surges are caused by my body's attempt to compensate for pooling and/or MCAD episodes. I have tried taking a bath and the heat made it much worse. I wanted to pass out but couldn't because my bp was too high, I guess. I have read that hyper patients shouldn't do excess salt, but he told me to eat 10g/day and it has helped and I haven't become hypertensive except when I'm experiencing an "episode." I think, if I'm reading this right, that's what rama is referring to re: the compensatory mechanism? Heat exacerbates my symptoms almost as badly as caffeine (which I think would kill me at this point). I saw a bad neuro on Monday in my attempts to find a doctor (#13!), so I'm hesitant to discuss it but he said if the diastolic gets above 100 I should go to the ER. He also prescribed xanax, on top of my beta blockers, BID. I tried this and was comatose the entire day. No good for me. On to the next one...
  7. Oh, also, yes my b12 is under control (ish). Up to 300s from 150s, and climbing. Still low, but improving.
  8. Thank you for your answers. They are both very helpful. I did have a plasma cat test which showed high norephinephrine (from 300 supine to around 800 standing) but I wasn't having an episode at the time. I would wager the number is MUCH higher when I do. The problem is when I am having these episodes I cannot lay still; I will twitch all over and shake. I will try the ice for sure. When my BP was the highest I thought that exercise would help the "anxiety" (they told me I was having panic attacks at the time); BIG mistake! That's what pushed it so high, and it stayed there for quite awhile. I appreciate your sharing what you would do in a similar situation; my docs have been no real help with this issue.
  9. You've probably answered this question a million times, but I'm in NM without a POTS doctor and I am desperate for answers. I'm hyper POTS and when I have a surge I shake, shiver, pace around the house like a madwoman, and get really nauseous. My biggest concern is my bp, which will spike to 160/130 (usually) or even 180/150 (highest). It's normally 90/60 range. I am trying to get some meds to deal with the surges but in the meantime at what point is the BP high enough that I should go to ER? Or is this something I should just deal with? The surges last anywhere from 1-4 hours, though I am sick as a dog for days after. Thanks!
  10. I take propranolol 10 mg 3 times a day. It really helped with my tachy/hypertensive issues, but it makes me pretty brady at night (sometimes to the point that I wake up coughing with a pulse in the 40s) and makes it harder to breathe. It really controls the adrenaline surges that used to send me to the ER better than anything else, so I'll stick with it forever as long as it keeps working.
  11. I do this, and my oxygen is also around 94 at night/when laying down. I did the sleep study and it dropped to 89 momentarily but there was no evidence of sleep apnea. I'm on beta blockers, which makes it worse. My doc wasn't concerned as long as my numbers are above 90. When standing I'm in upper 90s.
  12. OK good to know and thank you. Also, thanks for the warm welcome. You guys have great information on here. It really helps to feel not so alone and to be able to share experiences.
  13. I am convinced that the 2009-10 H1N1 vaccine caused my POTS. I got the shot and had my first episode of near-syncope within 10 days, with several following that I wrote off to heat/exhaustion (I was dead tired but didn't know POTS causes it). Then I got a sinus infection in 2010 and have been completely messed up since then. I tried to file a claim for injury but there is a one year window on vaccine-related complaints and it took me two years to get diagnosed thanks to the gaggle of doctors I kept getting passed off to.
  14. Hi. I'm new to this, so forgive me. I was diagnosed at Mayo in March with hyperadrenergic POTS and I'm trying to find a doctor in New Mexico to help me (a struggle!). Anyway, my Autonomic Reflex Study has a note that I don't understand and was hoping someone could explain because I can't find any information in my research that makes sense: "In addition the HR baseline showed irregular small amplitude oscillation." Can anyone help me understand what this means? I have to explain POTS to possible doctors and I hate not knowing what that is. Any help would be much appreciated, and thanks for having me on the forum. Shana
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