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About erinlia

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  1. how often do you do IV fluids? I've never tried that. What is the dose of your Ritalin? My norm is to get up in the morning and get my girls going on their school and chores then go back to sleep for a couple more hours because i feel so terrible in the morning. My girls think it's normal, ha ha. Maybe Ritalin would be helpful. I saw Dr. Grubb a couple of times. it's been ten years though. I could make that a priority again when we are in that area visiting family.
  2. Yeah i manage symptoms with lots of rest, fluids, salt, avoiding stress, managing my body temp, (avoiding getting cold or hot) not being on my feet too much. and sometimes compression, although I don't like them much and they only help if I can keep from getting too warm in them. I feel like compression just barely takes the edge off for me so i don't bother unless I know I'm going to need to be on my feet longer than usual. I've tried a number of Beta Blockers, and meds to constrict veins. I've also tried Clonidine. I don't remember if I've tired Midodrine specifically. meds that c
  3. I've had POTS issues all my life. they became severe at age 9. I finally got a diagnosis from Dr. Grubb when I was 29, after years of doctors and my own research. at that point I was pregnant with my daughter. that pregnancy really really improved my POTS. For the last ten years I have not perused medical care for POTS because it had improved and I dont have medical coverage. POTS symptoms were still a constant issue but not as debilitating as my teens and twenties. I managed it on my own. In the last few years my symptoms have been getting worse and making me more homebound. I live i
  4. I've had a lot of trouble with chilblains. I have had POTS since I was little. Always I think. I started getting really bad chilblains on my toes when I was nine. eventually in my teens I started getting them on the soles of my feet and my fingers. Im 39 now. They are still an ongoing issue for me but I have learned how to manage them and keep them from getting as awful as they used to. I've seen various types of doctors and tried all sorts of meds for them but none have been helpful, other than aggravating my POTS more. The most helpful things for me has been keeping myself from gett
  5. that makes a lot of sense. thanks
  6. one thing I always wonder about my POTS is why do I get so cold when I do too much or get stressed? Is this a POTS thing? and if so, what's going on there? Why would standing too long make me cold?
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