Razzles

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 healed. In fact, it's gotten slightly larger. It doesn't itch or hurt. It is mildly raised and mildly scaly. I can't seem to find anything that matches it online and I don't believe it is a bug bite. I can't get in to a dermatologist for a month or a PCP for another week. Does anyone recognize this? Is it at all related to the (suspected) Allodynia flare up? I'd appreciate any thoughts.

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.

@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."

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.

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 blood pressure and he raised his eyebrows and said, "well, be careful with this." I was so frustrated and tired that I went home and wondered if I'm even sick at all -- no one seems to be taking it seriously so maybe it's not even real. My mom said I should be happy that my blood work, ultrasounds, and EKGs are all normal. Still, it doesn't make my lightheadedness go away, or explain why I can't remain upright for more than two hours at a time, or why one of my pupils will randomly dilate, or why I can't be in heat, or why my legs are purple and painful on standing for periods of time. I don't know if they don't believe that POTS is real or if they don't understand the way I feel. I had to take a medical leave of absence from school, I'm terrified to drive a car because I once almost passed out behind the wheel and ended up in a ditch, and I am hesitant to be away from the house for more than a few short hours. The doctor didn't want to do a TTT when I asked because he didn't think that would explain anything. I really don't know where to go from here. I feel like every time I go to the doctor, they throw some pills at me without trying to understand the underlying problems. I know there isn't a magical cure-all for POTS specifically, but it would be nice if I felt like a doctor was at least listening. Anyway, that's my vent for the day. Thank you for reading -- I just needed to get that out.

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 feels like it. I was wondering if this was another POTS symptom or if it could be caused by my medications. Has anyone experienced the same thing? I can't get into my doctor until the end of next week, so I thought maybe I could find some answers/guidance here in the meantime. Thanks

It's reassuring that I'm not the only one who has symptoms that may or may not come with a high heart rate

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.

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 rate caused the dizziness etc. I didn't think I would have these symptoms without the high heart rate. Is this typical of POTS? It's possible that I felt bad for another reason, but I'm not sure. This condition is confusing and I'm trying to sort it out.

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 temperature?