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erinlia

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  1. interesting! Is there a way I can listen to that conference?
  2. Before I got the diagnosis of POTS, my different Rheumatologists felt my issues were autoimmune. My lab never showed much clear evidence of this. The meds that helped my POTS symptoms more than anything were methotrexate, humira and Plaquenil. I was on Plaquenil for years. It was the most helpful med i ever tried with the least side effects. I've always felt like my POTS is tied to an immune disfunction of some sort. Very interesting to hear that Plaquenil has been helpful for some of you.
  3. thanks Pistol, that's helpful info
  4. 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.
  5. 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 constrict blood vessels are tricky for me because I have severe Raynauds. Some meds I've tried make that a lot worse. SSRI's do help me with sleep. I do take one of those. I don't think i've ever tried Trazodone. I could look into that. I use Magnesium, Taurine and a tiny bit of Progesterone cream (at certain times of the month) to help with sleep issues. I have tried one stimulant med and felt pretty terrible on it, very wired/ tired. I don't think I've tried Ritalin or Modafinil though. I've tried Fludrocortisone. I feel like i tried med after med after med in my teens and twenties. I took a break from it all in my thirties other that an SSRI and my own home remedies. I guess I feel like, is there more I can try that I have not tried? Do I want to risk feeling worse while trying new meds? I'm guessing I would need to come to my doctor with my own research and ideas of things to try since I don't live near a specialist. My blood pressure does go up when I'm standing and then eventually drops. I'm pretty sure I have hyper POTS. Dr. Grubb thought my POTS was likely the type caused by too stretchy of connective tissue, but I'm not sure if that is correct or not.
  6. 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 in a small town in Alaska so my doctor options are limited, but i'm wondering if I should start working with one again. In what ways are doctors able to help you with POTS fatigue specifically? If I see a doctor who does not treat POTS in other patients, are there suggestions i could make for tests we could run or meds we might look into? Is it important to know for sure the type of POTS i have? thanks!
  7. 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 getting cold. I always have to dress warmer than others. But i also have to avoid getting hot. :) I have Raynauds and if i get very cold at all I'm going to get more chilblains. also stress is a big thing. If I'm stressed about something I get chilblains. It may not be that day. They may show up the next day. I'm careful too to keep my toes dry. Even dampness from lotion on my feet can make them worse. You mentioned that you exercise. For me, for some reason, very much exercise make mine a lot worse. When I was a teen and very sick the doctors thought physical therapy would be the magic cure. that was when the chilblains moved into my fingers. Sometimes my chilblains would turn into open sores that were tricky to heal. I even lost the tips of two of my toes from repeated ulcers. I now am able to keep my feet from getting that bad but I also now have nerve damage in my toes from years of chilblains. I dont think this is at all typical though, so don't freak out. :) Chilblains are not as major of an issue for me now but its only because I'm careful about it everyday. I'm pretty limited how much i leave the house, how much activity i do, how much I'm on my feet and how much stress I can handle. But this is after thirty years of damage and years of not knowing how to manage it. I would pay close attention to what seems to make it worse. see if you notice any patterns.
  8. that makes a lot of sense. thanks
  9. 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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