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  2. @Scout - I used to be the same way. At Dr appointments the BP would be 90/50 and minutes later the doc would take it and it would be 148/98. Once I kept an hourly journal for 2 days and my doctor said that he could not even treat me because the BP would change so erratically and fast! Every hour it was a completely different reading. But my specialist started to treat me with BB and calcium channel blocker ( in addition to other meds ) and the BP switched to being more even. Today I am well controlled on weekly IV fluids in addition to meds.
  3. Today
  4. What’s working for you scout? Yes I shake like crazy
  5. I don't have bradycardia all the time, but I do regularly have times when my HR is lower than 60. Ironically, it's usually when my BP is surging. One of my biggest symptoms, other than the labile BP, is erratic heart rate. So, I do get tachycardia, and I have that most days, but it's often a very irregular heart rate. Fast. Very fast. Then slow. Then fast. Etc. Bouncing around like that. I wonder if your sister is, as mentioned above, experiencing another kind of Dysautonomia as well, or something relating to her baroreflexes?
  6. My BP is going very high at times. Do you get shaky when it happens? Or feel fairly similar to "normal"? And, I agree with @Pistol and @MomtoGiuliana. Fluids, salt, rest, and a medication to lower your sympathetic response. Different meds work for different people. It seems to be a balancing act.
  7. Sorry about that folks. The images were working on desktop when I posted it, but now, don't seem to be. Odd. I don't have the energy to fix it today I'm afraid. Feeling quite unwell, so I'll just type the readings: 169/78 117/103 79/55 These were all taken minutes apart.
  8. Yesterday
  9. I second what @MomtoGiuliana states. For me extra BB is the first choice - if that does not help IV fluids ALWAYS fix it.
  10. @Outaker - thanks, that might be what is going on. Her BP normally runs 150/90 on a good day ( with meds ) but used to get as high as 240/120 and higher prior to meds. She used to be in hypertensive crisis often. @Stark - that might be what is going on. I took her BP this morning and it was 150/90 sitting but her pulse was 50. So when she gets up and her HR goes to 80 - I guess that would be still POTS. Man - we people act weird!
  11. @dannyg - I agree with @bombsh3ll. It sounds like you only ever tried the one medication. an autonomic specialist could help you control your POTS symptoms.
  12. I am not sure if I fit into the hyper category. However when I am in a POTS flare I have high bp when standing and I get surges like you describe. The thing that helps me the most--which may seem counterintuitive, is extra salt and fluids, and IV fluids if possible. Otherwise, increasing my beta blocker dosage.
  13. DINET maintains a list of physicians here. I see there are two listed as being in Pittsburgh. If you are able to travel there may be others you can consider on this list. https://www.dinet.org/physicians/
  14. I'm also looking for a doctor in Pittsburgh. If anyone has references.
  15. I sort of fall into this camp. My resting heart rate is in the 40s (sometime upper 30s when lying down for extended periods). It rises to the 80s or 90s when I stand, which is more than enough for a POTS diagnosis, but isn't technically a considered tachycardia since it is usually sub 100 bpm
  16. How high is your bp going? I get bp surges every night to 150/100 even laying down.. still trying to figure out how to get rid of the excess norepinephrine I HATE NOREPINEPHRINE
  17. It’s not real . Norepinephrine causes bradycardia by activating the baroreflex which makes the heart rate go down and elevate bp how high is her bp get on diastolic ? Systolic should not be affected
  18. Totally agree - I am no doubt deconditioned and anxious now, but was neither before POTS hit! B xxx
  19. Could that be another form of dysautonomia than POTS? Don’t you need to have a 20-30 rise in HR on standing to have a POTS diagnosis? I had all those symptoms minus hypertension on standing and had bradycardia rather than tachycardia. I say “had” because I now have a pacemaker.
  20. I eventually will. Soon as I get kidneys, ballbladder, and liver tests. If thats not a peoblem, then to an Autoimmune Specialist. I'm in an autoimmune Facebook group, where a lot of people that symptoms like I have, liver and kidney numbers like I have come to find out that's what caused their pots and autoimmune problem. It was unknown and undiagnosed for years. I want to get to the root cause if I can. Whatever is going on is causing it to get worse. I've been getting up in the morning and getting real bad. My blood pressure this morning was 72 over 60
  21. Can't see them either, you seem to be missing a "g" from your .png.
  22. I also have untreated POTS (I have been able to access them all but am medication refractory) & know how miserable it is. I am the other way round from you in that BP is low sitting & goes up standing. If all you have tried though is florinef, there are still numerous options out there for you to try. it would definitely be worth seeing an autonomic specialist, as if salt & compression socks cut it, nobody would be on forums like this. B xxx
  23. In December I went to the ER after I found out my BP Drops and HR went to 140 when I stood up at home. They admitted me for 3 days and were going to do a TTT but the straps were broken and they never got it fixed. A Neurologist came to see me, had me stand up by the bed, checked my BP and Pulse standijg up and sitting down, and said "You have something called POTS," That was it. Went to an Endocronologist after I got out my old PCP sent to see me that did the same thing checking my standing and sitting BP and Pulse, he diagnosex me with ,"POTS, Dysautonomia, Neuropathy,". All Im ever told by 3 Cardiologists and all other doctors is "wear compression socks and eat more salt,". Thats it. My BP is 140/95 sitting most of the time, and when I stand its 92/65. So they cant give me anything to control my BP because I have to much of a swing in numhers. They tried giving me florenef before, ended up in ER, went way to high, they cant give me anyyhing to lower it cause its to low when I stand.
  24. I currently have my sister visiting. She also has hyperadrenergic POTS like me and is going to see my autonomic specialist. As we are preparing for her appointment she told me that she NEVER has tachycardia, only bradycardia. But she has every single symptom that I have, including hypertension upon standing, orthostatic and exercise intolerance, brain fog, fatigue, palpitations … you name it. And she has POTS. I have never heard of someone who has POTS with bradycardia - only that sometimes we can get bradycardic but mostly have the tachycardia. Anyone else here have POTS without tachycardia?
  25. @Derek1987 - my PCP and I have been wondering for years if there is a connection between the immune system and POTS. I used to hardly ever be sick, despite working in a hospital and having a school aged child ( you know - they bring home all the goodies ). Since onset of POTS not only do I get sick more often but also become more ill and often I need 2 rounds of antibiotics. And I am homebound - so I don't go anywhere to get germs. But I have not yet been able to find ant evidence or research that would explain that. Regarding the tonsils - it sounds like a tonsillectomy would definitely fix that for you. Frequent infections like that can wreak havoc even on healthy people - let alone a dysautonomiac! But I personally - through experience - would wait with that surgery until your POTS is more stabilized, simply because it is not an easy to recover from surgery. Do you see an ENT doctor?
  26. @dannyg - I actually was asking if you ever saw an AUTONOMIC specialist and if so - how did they diagnose your POTS?
  27. Might just be my phone but I can't see the pictures.
  28. These are some BP readings from a day ago, minutes apart. It bounces around like this all the time. Does anyone else's readings look like this? I can't wait to see my specialist soon.
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