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About potsyturvy

  • Birthday 06/23/1989

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  1. I've had a lot of circumstances come up lately where I haven't been able to get enough sleep at night. Not just the normal fatigue, but actually getting too few hours of sleep. I work part time, but if I don't get enough sleep, I get really sick to my stomach and get horrible vertigo. I know it is ideal just to get enough sleep, but when that is impossible, how do you cope? I can't drink caffeine because it makes my heart rate increase and my stomach feel worse.
  2. Definitely agree with benches and chairs throughout every store. No stairs in any buildings. Padded cushions on wall corners (I don't know about you, but I walk into things all the time thanks to dizziness.) Everything would be perfectly flat (again for dizziness and vertigo) All restaurants would have ingredient lists available for people with unusual food intolerances/allergies
  3. Oh dear! This cracked me up! I'm sorry about your abscess though. No fun. Both times I had C. Diff, I pooped my pants. Horrible experiences. The second time I had C. Diff. I was admitted to the hospital and I was hooked up to an IV so I couldn't get up without a nurse. I called and told them I was about to poop my pants, but they weren't fast enough. Plus it was like 1 a.m. and I couldn't call to get clean clothes or anything so I had to settle for a hospital robe. Let's just say they put a portable stool next to my bed after that. The diarrhea from the C. Diff literally burned my butt. Here is the embarassing part though. Once my bottom started to heal, it felt like my cheeks were sort of stuck together at the top. Major freak out! I went to my pcp and fortunately the skin had not grown together,but she told me that that actually can happen, so I felt a little less like a paranoid hypochondriac aboutt hat part of my experience.
  4. I was diagnosed with Common Variable Immunodeficiency this year and have been doing IVIG for about 6 months. I have to have someone drive me over an hour away to my Immunologist's to have it done because the hospital here will not order the right medicine for me (the issues with living in a small town). I can't drive myself because of the pre-meds and it's becoming a pain. I had my last IVIG treatment today and am switching to SubQ in two weeks, so I can do it myself at home. One of my and my Cardiologist's concerns is that I will not get blood volume increase doing SubQ and won't feel as good as I have felt on IV treatment. Any thoughts on this? I know the IgG itself should be more stable on the SubQ, but I am hoping that my POTS symptoms don't get worse, since it will no longer be injected into a vein and my blood volume won't increase. I don't know if that makes sense or not, but if anyone has done IVIG treatment and switched to SubQ and could tell me how it affected their POTS (if it did at all), it'd be great to know! Thanks!
  5. I had a case worker from my insurance call right after I got out of the hospital with C. Dif. She asked a ton of questions about my health, and I had to educate her on a ton of stuff. I was scared too that they were going to try to drop me from insurance because some of my stuff is super expensive, but so far they haven't done anything.
  6. You argue with the doctors in the hospital about how your medications SHOULD be given. You have a thirty minute conversation with your surgeon about how you want the surgery done, and when he doesn't understand how he can do it without a certain drug, you are able to name numerous other ways to have the surgery without said drug.. at which time he pauses before saying, "oh yeah, why didn't I think of that!" and agrees to do the surgery with one of the methods you named. You have more meds in your house than the local pharmacy. Your friends call you first for medical advice. You learn how to do pretty much every household chore, lying down or sitting and leaning backwards.
  7. sorry, I mistyped the name of that, It's hypogammaglobulinemia.
  8. I was recently diagnosed with hypoimmunoglobulinemia (haha, and I thought pronouncing POTS was bad lol), which basically means that my body isn't making some of the antibodies it is supposed to make. So, I am always getting infections and it takes a long time to get over them. My POTS feels a lot worse when I have an infection. I currently am trying to get over C. Diff. (had it for over a month now), a sinus infection, and infections in both my ears. It makes you wonder how the immune system is involved with POTS.
  9. I get a cold sensation in my chest when my GERD is flared up. I also usually feel cold all down my esophagus.
  10. I get this weird fluttering like feeling in my head, right behind my forehead. It makes me feel a little lightheaded and like I can't focus my vision. You know how you feel when you get a heart palp that makes your heart feel like it's fluttering? That's really close to how it feels only it's in my forehead. Does anyone know what causes is this or does anyone else have this? I've had it off and on for years now, but never thought about asking about it.
  11. Happens to me at home sometimes, but definitely at movie theater's. I haven't seen a movie in theaters for over a year because it makes me so dizzy.
  12. The most I've done post POTS is run for 1 whole minute straight and then was sick for most of the day from it. It is awesome to see people who have the symptoms better controlled. Hopefully, all of us will get to that point some day!
  13. I'll have to check that out. I have kind of wondered how he is doing and hadn't heard much of anything about him since he left The Wiggles. At least we have a celebrity who can try to bring some awareness for us
  14. I think mine was 600 cc or less, and I even cheated and went a little over 24 hrs. I wasn't drinking as much when I did that test (it was right after my POTS diagnosis) but I still don't go that much.
  15. My POTS symptoms started after a year of misdiagnosed Strep. I had fatigue as my first symptom, then sinus infections/allergies and GI issues. I've had tachycardia pretty much my whole life, but just didn't know it was abnormal. Four years ago, it started getting really bad when I was working a job where I had to stand for 10 hour shifts outside in 100* weather. I thought I was just having issues with low blood sugar and severe allergies. I always knew I had trouble standing for long periods of time (and I'd often shake uncontrollably while standing, but I just thought it was nerves or something) but I didn't attribute my symptoms to it. My doctors were suspecting Lupus or early MS and I kept testing negative for both, so I searched online for things that had similar symptoms to those disorders, and found some information about POTS. It totally shocked me when I first tried a poor man's tilt on myself and found that my hr increased by 60+ bpm!
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