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About DriftingDolce

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  1. I have IC, ME/CFS, and POTS too! You're right, most IC forums/groups only talk about IC and don't seem to address other related illnesses. Weird question: Are you taking any kind of birth control? My IC was HORRIBLE. Constant agonizing bladder pain all the time. And it's an agitating kind of pain. With POTS headaches and fibro pain, I can lie down and do nothing and that often calms things down, or at least makes it more bearable. With an IC flare, I can't settle. There's that constant urge to go to the bathroom, even if you just went, that makes it difficult to relax at all. A few years ago, we made an accidental discovery that improved the IC dramatically: my bladder hates birth control! My ME/CFS doctor suggested that I go off birth control to see if that was making me more fatigued. It had no impact at all on my fatigue but it made a HUGE difference in my IC pain. Now I still have IC, but it's much more manageable. I've tried every possible kind of birth control (pills, patches, IUDs both with and without hormones, etc.) and all of them immediately provoke the worst IC flares. If you are on any form of birth control, I highly recommend going off it for a month or so and seeing if that gives you any IC relief. Also, do you use heating pads? You mentioned that it's hard to rest when you constantly have to get up to go to the bathroom and I so relate. I'm pretty much chained to my heating pad, especially during a flare. At night I wrap it between my legs and over my pelvis every night and that dulls the constant urge to pee so I can get to sleep. Hot baths sometimes help too. Other things that have helped me: IC diet, pyridium, condom pops, bladder instillations, seat cushions with holes in the middle, pelvic floor physical therapy. You said you've already tried everything though, so I'm guessing those aren't new. I'm currently on week 3 of a 12-week PTNS therapy for my IC - hopefully it helps!
  2. I've had POTS for about 2 1/2 years and I pass out a LOT. I've been tracking my symptoms for the last couple years, and on average I faint around 13 times per week. I've had two Tilt Table Tests and in both cases, my heart rate went way up and I fainted, but my blood pressure stayed about the same. My doctors are all confused about how I can be passing out without a drop in blood pressure. I thought that high HR/stable BP was pretty typical for POTS though? So I'm wondering... how frequently do you pass out? What's within the realm of "normal" for POTS? Am I that unusual?
  3. When I stand up, my heart rate goes way up, but my blood pressure stays about the same. Is that normal for POTS? (I also always get dizzy when I stand, and pass out pretty frequently.) I thought that was common for POTS, but my new neurologist keeps saying how "weird" it is that my blood pressure doesn't drop (even though I do get dizzy), and that it's confusing to her. Fellow POTS people: does your blood pressure change substantially when you stand? I was diagnosed with POTS about a year ago by my cardiologist. He said he can't do any more for me, so he referred me to this neurologist. I've tried a bunch of things but nothing seems to be making much difference. None of my doctors seem to know very much about POTS and it's getting frustrating!
  4. I have both POTS and Interstitial Cystitis. With IC, the primary symptoms are usually bladder pain and urgency - you constantly feel like you have to go to the bathroom, and it hurts. Basically like a painful UTI that doesn't go away. Abdominal (not bladder) pressure doesn't sound like IC, but you should go to the doctor to find out for sure. If it does become painful, you might try phenazopyridine (aka pyridium), which is sold over-the-counter as AZO or Uricalm. It helps treat bladder pain; I take it at prescription strength and it's been a real lifesaver for me many times. It may also give you better insight about the source of your discomfort - if phenazopyridine helps, there's a better chance that it is a bladder problem. If it doesn't help, it might be something else. Good luck! I really hope you have something easily treatable and not IC!
  5. When I'm in a car (driving or riding), sometimes my POTS symptoms flare up like crazy - my heart starts racing, I get chest pain, nauseous, and dizzy. It always happens on long trips (over an hour) but sometimes even on short trips after only twenty minutes or so in the car. If I pull over and stop the car for a while, things gradually calm down until I resume driving again. Does this happen to anyone else? Does anyone know why it happens or what I can do about it?
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