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potsyturvy

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Posts posted by potsyturvy

  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. 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.

  6. 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.

  7. 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.

  8. 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!

  9. I usually see it under the symptoms list for GERD. I'm not really sure what causes it though or how common it is with GERD. I know acid can reflux into your larynx and lungs sometimes with it, but I'm not sure if there are other causes of shortness of breath with it. (My larynx has been burnt several times from GERD and it causes it swell and have short periods of spasming shut)

  10. Best of luck Songcanary! I was able to stop Prilosec for a few months, but then I get a POTS flare and my GERD gets really bad again. I've been trying to cut back on it for the last two days because apparently it can increase the risk of getting C. Diff in people who have already had it (I'm still treating symptoms of C. Diff.) and because the amount of Celexa I'm taking is supposed have a bad interaction with it. I haven't totally stopped the Prilosec and I'm not sure I'll be able to because just cutting it back to one dose a day, I'm having a lot of trouble swallowing and getting bad shortness of breath from it. :(

  11. I take Prilosec twice a day for my GERD symptoms. I try to follow all the "rules" for GERD, like not eating spicy food or dinking caffeine, and I have raised the head of my bed. My GI doctor insists that I only have GERD symptoms because of eating habits (even though I told him I don't do any of the things that make GERD worse), but I notice that my symptoms get a lot worse when my POTS is worse and so I was curious if anyone else experiences this.

  12. Welcome to the forum Mandy! I use Celexa for adrenaline surges. I used to have them so bad, that they would almost nonstop all day and through the night. It took a little over a week for the Celexa to start working, and it was a miserable week, with increased dizziness and adrenaline surges, but now I rarely have an adrenaline surge. I think everyone just reacts different to different medicines. I'm with BellaMia, that you might want to ask about a Tilt Table Test. Glad to have you on the forum, and best wishes!!

  13. Thanks for the input! I went to the dr who would do the surgery under sedation with local anesthesia yesterday. By the end of the visit, he decided he would try the septoplasty with local anesthesia and Afrin instead of epinephrine. I had a balloon sinuplasty and fracture of turbinates done under local anesthesia only and it wasn't too bad. He doesn't think this will be any worse and could be a little easier because he would be using a much stronger anesthetic. Unfortunately, today I went to my immunologist and she wants me to postpone the surgery several months now until I have done some IVIG treatments :( I'm a little frustrated, I just want to get this surgery over with!

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