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About turtlefairy5

  • Birthday 08/31/1979

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    North Carolina
  • Interests
    reading, writing poetry and fiction, mental health issues

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  1. Why wait too weeks? It sounds like you're at your ropes' end. I'd say go ahead and give your specialist a call ASAP. You deserve some help.
  2. As a matter of fact!... One of the last times I ended up in the ER, the doc found my thyroid levels were off and referred me to an endocrinologist. By the time I saw the endocrinologist, my thyroid levels were "fine," but my DHEA levels were off. I haven't made my appt. to follow up yet, but I plan on it because I'm hoping to find an answer to the embarrassing amount of facial hair I have. Both the endocrinologist I saw and the cardiologist noticed and remarked on my "hirsutism." I know that's just comestic, but if something's off, it could be contributing to other symptoms. My regular doc checked for PCOS, and said I didn't have it, and just left it at that.
  3. Yes! They did tell me to do to countermanuevers! And I kept absent-mindedly wiggling my fingers because my hands kept going numb. And I kept clinching my rear-end because my legs were shaking. I told the nurses that I was doing it, that I would try not to, then find myself doing it again just as a response to my knees and legs trembling, and they kind of laughed, and one said "Whatever works!" And I kept talking to the nurses because I felt so awkward. My heart rate was all over the place - way, way up, then closer to 100, even dipping to upper 80's, then way, way up again, back and forth. I think this test didn't give an accurate reading because of all these factors - the countermaneuvers, my anxiety, etc. Oh well, though - at least the doctors know something ain't right! And they kept me on the meds that help me. And I have this community for extra help.
  4. I talked to the cardiologist's assistant today over the phone, and I tried to get him to clarify for me what they were thinking so far as my diagnosis based on my response to the tilt table test. He said that he couldn't really specify; he said "some POTS," but that my heart rate went back down "signigicantly," the "but" implying that, for POTS, it would have to stay way, way up the whole time. He brought up my anxiety/nervous responses during the test again, and used "Inappropriate Sinus Tachycardia" to describe/diagnose those reactions. My question: - Do ya'll STAY tachy upon standing? For how long? A few minutes? Until you sit down again? And how tachy? 90's, 100's?
  5. When I had the TTT, a nurse said, "You need some pork fat." I think people with POTS tend to be thin, some see the correlation, and form a false if/then. I was overweight when I developed POTS symptoms.
  6. Ohhhh my goodness, explosive burps! Yes. I could knock windows out, shatter glass. I have GERD (acid reflux), and I assumed it was related to that. But it's related to POTS? Then again, gastro issues are related to POTS, so maybe it isn't necessarily related to POTS directly but to the gastro issues by way of POTS, by way of messed up autonomic systems. But anyway, yes. Burps. In fact, I'm having an endoscopy/colonoscopy Thursday due to gastric issues. My gastroenterologist threw IBS, Crohn's and Celiac out there as possibilities.
  7. My most recent flare of symptoms was induced by a virus of some kind. I'll just second everything Rachel just posted - make sure you are drinking lots of fluids, eating well, and back off your exhertion level. I tried to "push through" my illness, and ended up making things a lot worse. Lay down, and stay layed down, until you feel better. Don't let obligations or should-do's get you worse off. See if you can get friends, family to help, and cancel participating in anything that isn't absolutely necessary.
  8. That's exactly what happened to me except they kept me upright and told me to breathe and bare down like trying to have a bowel movement.
  9. Thank you! Hopefully, this will get straightened out in a way that I can feel confidant in the doctor. It was a nurse who said it was negative, and she may not have realized they were looking for POTS, but for me to faint or something. In any case, I can always take the results/readings of the test to another doctor for a second opinion, because this one is 5 hours away anyway! I have a feeling I'm freaking out about what the nurse and the physician's assistant said, and hopefully the cardiologist will clarify. I just don't see how there could be any doubt about POTS.
  10. I absolutely have this issue, and it makes me so self-conscious socially. Very few people are informed about this, or understanding. Most of the world seems to value loud, value excitement, value extreme over peace and calm. I've had to leave theaters, dinners, and other social gatherings. I've realized that it's important to find the few who are understanding and compassionate, and distance myself from the others. It's too much stress to pressure myself to be "normal" when I'm not. I was in a relationship with someone who didn't have understanding or compassion when I first was becoming symptomatic. On top of the tachycardia, I felt their disappointment, frustration, and I felt my own shame and guilt for being a party-pooper, too sensitive, etc. So glad that relationship is over! We still have contact, but it's only an acquaintanceship. About an hour after my recent tilt table test, they texted and asked if I wanted to go get dinner later. Ha! I laughed out loud because it was such a reminder of their cluelessness.
  11. Thank you so much for that information! That makes a lot of sense, and helps a lot. And thank you for encouraging me to get my doctor to clarify things!
  12. Hey everyone, I joined this forum years ago, but have been absent for a long while. I was diagnosed with POTS by a cardiologist back in 2008, based on my response to "orthostatics." A nurse measured the differences in my bp/pulse upon laying, sitting and standing. I was prescribed Metropolol Succinate ER, 25 mg daily. Eventually, my life improved after the anxiety I had developed over my symptoms abated with the help of the medication. I got a part time job to supplement my disability, and was living independently. Last year, I got the bright idea to stop my medication because I was frustrated with the fatigue it caused. I did fine for a while, and thought that POTS was behind me. Fall came along, and I caught a virus. I pushed through the virus, though I knew I was weak and worn out. I went to visit my mother for the holidays. I ended up in the emergency room, my heart rate sky high. Over the next couple months, I was in the emergency room 4 more times, and caught another cold. Each visit, I was given fluids, my heart rate improved, and I was discharged. At one visit, my potassium level was low. At another, my thyroid was off. When my thyroid was tested again, it was fine, but my DHEA was off. I'm getting to the tilt table test, I promise! To make a long story short, my symptoms are back again - tachycardia, susceptibility to infection, wacky levels of random vitamins/minerals/hormones/etc., gastric distress/reflux./fatigue, anxiety, etc. The doctor at my last ER visit referred me to a cardiologist that he said researched POTS. I met with that doctor, and he set up a tilt table test. I did the tilt table test this past Friday. When the table lifted, my heart rate went up. I know because I felt hot, sweaty, lightheaded, sick. Also, one of the nurse's eyes bugged out and she started telling me to breathe. Another nurse told me to bare down as a countermeasure. Soon, my heart rate decreased, but stayed over 100. (I could see the monitor reflected in the glass of a picture frame.) After a while, the nurse grabbed an IV bag, which I realized was the medication they had mentioned might induce symptoms. I was really terrified of this. My heart rate shot up over 170, and the nurses all intently tried to get me to calm down, which I did once they explained the medication was a tiny amount, and would only mimic me walking around, or maybe going up stairs. (Information is so helpful sometimes!) I was still sort of anxious, and though they had told me to try and be quiet, I conversed with the nurses. They pointed out how thin I was, and I told them about my reflux issues, and how I had lost a lot of weight recently, and was having a endoscopy/colonoscopy soon. It was a calm, pleasant conversation, and I wasn't particularly nervous, though I could feel the medication, and my standing position, and talking, was affecting my heart rate. One nurse kept bugging her eyes out, shaking her head at the monitor, and the other kept asking me to perform countermaneuvers. The nurse administering the test said, "Something is definitely wrong....." when I asked her how I had done. Imagine my surprise, then, when a different nurse who came into my room after the procedure announced that the test was negative. Negative? She said that my heart rate definitely went up, but that it didn't "bottom out," and that "that is what we look for." Really? I thought that POTS is defined by an increase of 30 bpm or more upon standing. And I definitely had that happen. Anxiety aside, after I had calmed down, it happened again, and continued to happen, under the influence of the drug meant to mimic minimal exhertion. The doctor told me to continue taking my beta blocker, offered some exercises for me to do, and prescribed Cymbalta. I am so confused as to why my test was negative, if my heart rate went up so high upon elevation, and in response to the influence of the drug. I'm concerned that because I had an anxiety response to the administration of the medicine, that all my reactions during the test are being chalked up to anxiety, including my response to being elevated, and to the influence (not just administration) of the drug. Also, I'm confused because the aftercare nurse indicated that a responsive drop of the heartrate was needed to receive a positive result. I've never heard that associated with POTS. Does anyone here have any information, insight or suggestions? Thanks!
  13. Here's another hairy girl! Count me in. I have to rip mine out with wax and go back and pluck the hairs that wouldn't come out with the wax on a every other day to even DAILY basis. It is so embarrassing and annoying. Mine started when I was put on some drugs for depression, namely Paxil CR and Risperdal. I stopped having a period and sprouted hair on my chin. My local mental health center psychiatrist responded, "Do you have to have a period?" when I questioned her about it. I also gained a LOT of weight. She put me on a diet program. Of course, now I know that those levels of drugs, for that length of time, in the face of those kinds of side effects was unnecessary. I learned that drugs can be very damaging. I'm off of those medications now, but the hair, and some of the weight, is still there. Just thought I would chime in! I'm not sure if the continued hair sprouting in my case is POTS related, but there you go.
  14. I have this same thing. Just mentioned it to a friend a work today, actually. It comes and goes with intensity. Past few days has been bad, along wiht my mood. Wonder if it is partly hormones as well. Just the other day, I was walking by a table where a woman was sitting in a wheelchair. Add in my clumsiness. My foot caught the edge of her wheel, and I had a little hiccup in my walking. I sort of tripped. It was barely even noticiable, except I got a huge hot flash and both my armpits tingled. Does anybody else have the prickly, tingly armpit reaction?
  15. Occasionally I get the full-ear feeling, but mine also feels like I have a fluttering in my ear - like a bird is flapping its wings in my ear. I haven't heard anyone else ever mention anything like that.
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