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September 30, 2012 at 4:46 pm #321ourfullhouseParticipant
Some crazy things have started happening this week and I don’t know whether to think they are just “part” of my hyper POTS or could it be something more, like a “real” heart issue.
Basically I have spent a week with tachycardia being bad anytime I am standing, especially if I do anything besides stand, like walk, move my arms, etc. Nothing new about this, though it has been pretty stable for a while and I haven’t had any med changes (diamox and Welbutrin are my biggest hyper POTS meds). But along with this I started having shortness of breath… in fact it feels like I am suffocating. The only thing to help is to lie down immediately. First it only happened when I was trying to sing at church, now just walking around can do it. On Friday I started out feeling better and hurried up and got some things done before the “window of opportunity” closed (got a few things from the grocery store and worked on some sewing). I got really sleepy (my usual MO is fatigue not sleepiness during the day). I crawled into bed and slept 15 hours! Woke Sat. to being dizzy and out of breath when standing (plus the usual tachycardia). I have also caught my O2 sats being in the 80’s to low 90’s when I am feeling the very worst. Rest of the time, like sitting and my HR is 112 or so, my O2 sats are 97-98.
Friend at church is a paramedic and he is telling me I need to go to the ER, but he also doesn’t know anything about POTS let alone hyper POTS. I HATE going to the ER because the NEVER know what to do with me. So, I’m kinda waiting it out to get to Monday morning and try calling my cardiologist (who will also probably say to go to the ER, which is ridiculous. I just want them to listen to my heart/lungs while this is happening).
My question to all you experienced POTS folks is, have you ever had something like this happen and it was “just” part of what POTS can do to us? Or, has anyone had this happen and it wasn’t completely connected to POTS?
I know it is very common with MS patients (not that I am one) that any new symptom they have just gets blamed on the MS, whereas sometimes some other problem is actually going on. I think with us EDS/POTS/etc. folks it can be the same way. Do we blame everything on those DX’s and/or when is it time to have something new checked out, that it might not be totally related to the others?
Hope that makes sense. I know it is a Sunday, but I hope a few of you will have some good info for me. 🙂
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