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Razzles

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About Razzles

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  1. Hi there, It's been a while since I've posted/logged in. Since last time, I have been treated at the Mayo Clinic and was officially diagnosed with POTS and EDS. Yay -- I got two prizes I've largely been trying to focus on getting a handle on my symptoms which has gone well enough until about 3 weeks ago when my right side felt like someone had taken sandpaper to it. Touching the skin or putting on a shirt was so painful. I suspect it may have been Allodynia (however, nothing is official). Once the pain ebbed, this red spot appeared on my hip. It has been two weeks and it hasn't hea
  2. Well, I finally was able to get an appointment with the Mayo Clinic. I'm happy to be able to see someone who knows about POTS. My appointment is with Brent Goodman -- I've heard good things about him; has anyone else been treated by him or gone to Mayo? Any advice/suggestions/stories about your experience? I'm not sure what to expect. I want to make the most of my appointment since I'm not sure where it will lead.
  3. @KiminOrlando - I'm not sure what kind of POTS I have. The doctor's are too busy testing and re-testing my thyroid to do anything about my POTS I'll look up some information on calcium channel blockers -- thanks! @marcus99 - I hope you can find someone to help you with your POTS. My cardiologist did all standard tests and all the results were normal, so like you, my doctor was just like, "well, you're fine."
  4. I'm going to see if I can find a neurologist. The guy I was seeing was a cardiologist. The Mayo Clinic said they'd accept me as a patient, but that I need to have a diagnosis first before I can go. I feel like if I can at least get that far then maybe I can talk to someone who knows more about POTS. I really don't think my cardiologist knows that much about it. Kim~ I'm on Duloxetine currently which is a beta blocker. The pill he prescribed is Verapamil. I've never heard of it; the package just says that it is used to treat HBP, chest pain, and abnormal heartbeats.
  5. I'm sure you all know the feeling: you wait for weeks for an appointment with a specialist and then the whole thing is a let down and you're back to square one. Yesterday, I went to a doctor after some testing and I was ready to get some answers. I've been keeping a notebook where I write my HR and other symptoms down daily and he said my "heart rate really isn't all that high" -- despite a difference of 30+ beats on standing. He gave me a pill and sent me on my way. When I went to pick up the prescription, the pharmacist said it was for high blood pressure. I told him I have low blo
  6. Hello, I've been on Duloxetine 30mg (beta blocker) and Fludrocortisone .1mg for about a month. I've also noticed that I've been experiencing throat pain/difficulty swallowing/breathing issues for about the same amount of time. It feels like my throat is a size too small and it feels like I'm coming down with something (sore throat feeling). There's a little amount of phlegm every now and then that I cough up, but nothing major. It feels like my Adam's apple area is being pinched. According to my oximeter, I'm getting enough air, so I don't think that my throat is swollen even if it
  7. It's reassuring that I'm not the only one who has symptoms that may or may not come with a high heart rate
  8. He hasn't seen me yet, but I've messaged him through the health portal that he has and he just said "that's weird" lol. I have a few specialist appointments coming up, so I'll bring it up then.
  9. I'm new to treating my highs and lows as POTS, so I've been trying to pay closer attention to my heart and other symptoms so I can get a better understanding of my condition. This afternoon, I suddenly felt very hot like my face was burning and my feet were sweaty. I was overcome with nausea and dizziness and my body felt like it was incredibly heavy. One of my pupils was slightly dilated as well. My heart felt like it was pounding in my chest, so when I took my heart rate I was really surprised that it was only around 90 when standing and 77 when reclining. I thought that the high heart
  10. I'm new here, hello! I have been dealing with POTS symptoms for years, but it was only this last year that things started to get really bad and now I'm going through the process of getting an official diagnosis. One of the things I am wondering is: what is the maximum temperature you can tolerate and for how long? I notice a difference in how I feel at 75 degrees F and 80 degrees really is about all I can take. I can only be outside for 5 minutes before the heart pounding kicks in and I find it's hard to breathe as well. What about others? How long can you be out and what is your cut off
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