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  1. My hands get red and swollen during bp readings too. Yeah, I was wondering if it was a circulation issue.
  2. I was wondering if it's too tight, but it seems like it's not. And sometimes it doesn't happen other times it does. It used to only happen with my left arm, now it happens with both. Does it happen with both of your arms?
  3. Sometimes when I take my BP at home, I feel fine. But more and more frequently, I feel so much pain in my fore arm and hand that I can't get through it and have to stop the machine. It feels like my veins are going to pop.Occasionally when it's somewhat more bearable, I struggle through it only to get an error reading. I've done trouble shooting and it seems fine. It works on my husband 100% of the time and it used to work well all of the time for me. About 10 minutes ago I tried to take my BP as my arm started throbbing, I could feel my heart throbbing. Just like my arm, it felt like my heart was going to pop. Does this happen to anyone else? What could be going on?
  4. Thank you StephL! I completely agree. I need the actual results. So far everyone I've asked for the actual results says that there are no actual results other than the summary on the final report. I don't know if this makes sense, but I'm wondering if that may be because they were only focused on looking for my blood pressure to drop since my doc thought that I had Orthostatic Hypotension. Even on the final report it says I had no symptoms, even though I was constantly complaining of symptoms and even told her I couldn't do it anymore a few times. I'm wondering if it's possible that they just ignored everything other than my BP. My doctor is the one who did the test but I don't think he knows much about POTS. He's an EP cardiologist.
  5. Thank you for the clarification Flying Squirrel! :-) My doctor actually didn't tell me anything, even though I asked what the results meant specifically. After not getting answers, I sought a second opinion from a different cardiologist and that doc read through my initial doc's notes and saw that he wrote "possible POTS seen at tail end of test". I then requested the tilt table results and only got the report, but not the complete results. I called for them again today. Not sure what they will send this time. Yes, he said that the test was negative because he was testing for Orthostatic Hypotension and that clearly wasn't what I have. After the test, without answering my questions, he prescribed Atenolol, only 12.5 mg at first to see if I can tolerate it, and put me on a Holter Monitor for 48 hours. Dakota, the fact that my bp went that high worries me also. But I have no idea what that means. My bp is always very good when I'm sitting, roughly 120's/high60's to low 70's, but when I'm standing or doing chores and taking care of my babies sometimes it's insanely high. My cardiologist has said nothing about it. He wants me to increase my salt and fluid intake, but I'm worried about doing that since my bp does get so high. Last week at home I got a standing reading of 213/145 and HR 136 along with a ton of symptoms. Many other times I get error readings, I'm guessing because my BP and HR are so high.
  6. You might want to try try Reiki also. It alleviated my chest pain and fatigue, even though I also have cardiomyopathy. I also have anxiety from PTSD and it was gone after one session. I like Reiki because you can learn how to do it on yourself for about the price of 2-3 sessions. It's something you can do for the rest of your life if you need to.
  7. Thanks for responding Libby! My minimum resting HR was 64, so not a big difference. At first after they tilted me up my hr only went up to 77 (normal) right away, but within about 5 minutes it hit 96. For the next 25 minutes it dipped slightly, but stayed close to 96. I'm also confused because on the report they said I was asymptomatic during that first 30 minutes. But I wasn't. I didn't faint, but I felt very sick. I was shaking and would have fallen if I wasn't strapped in. I felt nauseated, had a bad headache, neck pain, dizziness and I would start drifting to sleep but I was able to wake myself up. I was struggling to stay awake. But they didn't document any of those symptoms. I wasn't ok, but I was fighting through it. Is that normally what they do? When you say your body "crapped out 15 minutes into the tilt", what happened? Did you pass out/faint? If not, what made them stop the test?
  8. I haven't tried acupuncture. But I did try Reiki and it alleviated ALL of my many symptoms for about 3 weeks. I felt completely normal and healthy for the first time in decades. I'm planning on having a Reiki attunement so that I can do Reiki for myself.
  9. I feel like this often in different situations. But It's usually the worst while I'm trying to make meals for my family. I think bending down and reaching up into cabinets and into the dishwasher makes it worse. And then add the heat from the stove or oven and I'm done. I also can't hold onto objects when this happens, so I break a lot of dishes and spill a lot. As it gets worse, I start to forget what I'm doing and where things are in the kitchen. I have to read recipes over and over and over and I sometimes add the wrong things to the food I'm making. The other day I added garlic powder to oatmeal instead of cinnamon. I've been known to put the milk in the cereal cabinet and put the oatmeal box in the fridge. I frequently hold on to the counter to regain my balance. I have vertigo only at night. Right after laying in bed I sometimes feel the room spinning. It gets so bad that I have to get up or I will throw up.
  10. I'm just wondering how much of a role stress plays in other people's lives. I believe stress and emotional trauma is at the core of my symptoms. Stress also makes my symptoms far worse. I'm wondering how many other see a similar connection.
  11. I'm confused, as this is all new to me. Does this seem like POTS? My cardiologist ordered the test because he suspected I had Orthostatic Hypotenstion. The test was negative, but he noted "possible POTS seen at tailend of test". For those of you who have had a tilt test, what happened if and when you were given adrenaline? Here are my results.... Laying Max HR: 66 bpm Max BP: 128/72 Standing (30 mins) Max HR: 96 bpm Max BP: 168/85 Symptoms: nausea, weakness, dizzy, feeling faint, having trouble staying awake/keeping my eyes open, my hand was turning purple Because I didn't get the response they expected, they gave me Isoproterenol (adrenaline?) Laying with adrenaline Max HR: 77 bpm Max BP: 138/60 Standing with adrenaline (11 mins) Max HR: 120 bpm Max BP: 170/71 Symptoms: chest pain, neck pain, shortness of breath, nausea, weakness, dizzy, feeling faint, having trouble staying awake/keeping my eyes open, purple hands My HR went up to 113 almost immediately when they tilted me up after giving me the meds. They stopped the test once I hit 120 bpm and told them I was having chest and neck pain, 11 minutes after being tilted up.
  12. Hi all, I'm so very relieved that this forum exists and that I found it. To say I'm frustrated is an understatement. My first symptoms of POTS showed up at around age 13... blurred vision, numbness in my arms, fatigue and dizziness. After examining me, my pediatrician and the optometrist I saw decided that I was making up my symptoms. They suspected I was depressed. My symptoms were ignored for 5 more years. At around 18, more symptoms showed up. The fatigue and dizzy spells got worse and more frequent, I started to feel weak, and like I would faint and my heart would start racing after about 5-10 minutes of exercise, which didn't make sense because I had been very athletic until that started. They diagnosed me with PCOS, insulin resistance, anxiety and said I was just deconditioned (not so). During college, the dizziness got so bad that I would have to lay down on the floor in my classroom during my 4 hour studio (architecture) classes. I now realize it was because I stood for most of the class because sitting on the tall stools at the drafting tables made my legs feel like they were going to sleep. My symptoms were mostly gone for a few years, except for the fatigue, dizzy spells, memory issues and trouble staying focused. At 32, 8 months pregnant with my second child, I had an SVT (hr at 220) after bending over to pick up an object and feeling a pop in my heart when I came back to an upright position. ( I now believe this happened because of POTS). They diagnosed a left bundle branch block. Now at 34, I've developed mild cardiomyopathy (possibly tachycardia induced). I've had excessive fatigue, chest pain and tightness, leg and arm pain and numbness and much more since January. They ablated an accessory pathway in/near my AV node during a recent EP study, but they could not ablate the left bundle block. My symtpoms were all relieved, but about a month after the ablation everything started again and was much worse. My cardiologist suggested a tilt test because he suspected I had orthostatic hypotension. He was wrong, my blood pressure went up, not down and my heart rate went way up. He's still not sure though so I just spent the last two days wearing a holter monitor, hoping to get clear results, diagnosis and help. So over the years dozens of doctors have implied or outright said that I was imagining my symptoms. One doctor even laughed at me and told me I was too young to feel pain. I'm so disappointed that it's taken 21 years to get this close to an accurate diagnosis. To complicate things even further, I have had PTSD since I was 5. The trauma that I believe brought on POTS was years of being raped by a close family member as a young child. The symptoms started within a few months of the abuse ending. This is the only trauma I've experienced. My symptoms get worse with stress, colds and a few days before my cycle starts through it's end. I'm so glad to be here with you all. Since learning about POTS so much of my life makes more sense. And even though I don't wish this on anyone, it feels wonderful to know I'm not alone.
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