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  1. Hey guys, I've had arrythmias from my POTS for as long as I can remember and I'm just wondering if you guys have them too and what they feel like? How do you deal with them? Are you guys able to drink alcohol? Have you found any effective medicine? Does anything make it worse? Personally stress exaggerates my symptoms and so does exercise but I know everyone is different
  2. It depends on your POTS to be honest. I have hyper pots and when I was tilted upright I went into hypertensive crisis and couldn't speak. But I have really bad problems with blood pressure. I felt like poo for a few days but I recovered. My first TTT wasn't so bad. But my symptoms have gotten worse. I hope everything goes well!
  3. That BP is fine, mine goes up to 150/100 usually when i'm up lol.
  4. I have been semi happy about the doctors at UW, but today I did see the head of the endocrinology dept and did not have a good experience. Will not be going back.
  5. I will be seeing Dr So once a month, he's working with Dr Oakley on my case as well. Which is nice, he feels like he's actually trying to help although I'm not sure where it'll go. I'm about to start a new medication, it's called lebatalol. Dr So and Oakley are neuros, they don't think I need to go to a cardio but I'm also going to see a new primary care next week and will get referrals for a new cardio and ortho. I see an endo tomorrow morning at UW also. I'm hoping I can get some answers, but so far I don't have neuropathy and I have confirmed hyper POTS.
  6. Yes, the weather has been horrible! And my doctor, confirmed my POTS diagnosis. But doesn't seem to want to do any further digging. I have an apt with a endocrinologist on tuesday so I hope I can maybe get some more info from her.
  7. The pooling is an uncommon symptoms of pots, but it still considered a symptom. I have severe pooling in my extremities and was told it is not dangerous. Just to kind of give you a bit of comfort, if that's possible.
  8. My HR went up to 180 and I went into hypertensive crisis during my table tilt test so I can't really compare, I will say though that I would get a second opinion maybe. I would try lifestyles changes as well. Drink more water, watch your BP at home, try different foods/ maybe lose weight if you have to. But if your BP isn't insane and your HR isn't insane I would maybe see a cardio, maybe SVT or IT, which a cardio would have to test for. Which both are essentially high heard rate. Obviously I'm not a doctor, but those were ruled out with me first before they sent me for further testing. Could also be mild POTS, not everyone has crazy BP fluctuations.
  9. If you need more clotting, one thing that could help would be to eat vitamin K, leaf greans. But if you are having clotting factor issues have your sed rate and vitamin k levels checked. I wouldn't change anything without finding what exactly is wrong first.
  10. You know, I stopped taking propranolol, and once I did my blood pressure went down (after slowly going up for about 6 months) and I feel like I can breathe easier. I will say though, that a lot of the symptoms you have described sounds like stuff we POTsies deal with regardless. I am nauseous every day, and short of breath. I have vertigo and dizziness etc. I find I do feel better though OFF medication. Yes my HR is high, but overall I just feel more "normal"
  11. When i first got sick I was 17, I was really really sick. Horrible random health issues, and erythromelelgia on top of my POTS symptoms. They were all brushed off as me being clinically depressed. The brush off made me more depressed while I got sicker. I became suicidal and tried killing myself one night after about a year of being bedridden and not leaving my house. Was in the psych ward for a while afterwards. Now I am happy and live a semi normal but restricted life but my entire thought process has changed. But maaaaaaan it has been some work getting here. And when i say work, I mean real work keeping my mind occupied. I still get depressed often but I get myself out of it and don't wallow. I read a ton, draw, paint etc. Thing I can do while relaxing that are easy on my body. But the negativeness that comes with these types of health issues is never ending. To this day I am still looking for answers and see plenty of doctors on a regular basis. It is part of my life, but I've accepted it. I would say some things that help are; Don't stay up late googling your symptoms, don't google diseases, it'll only worry you more Don't focus on every thing your body does wrong, each pain or bruise or whatever happens in normal bodies (this was hard for me to do) Read books, books helped me so much!!!!! Keep your mind busy, maybe join a positive online community that is for something other than health issues. The less your life revolves around it the better you will be. Know that people will NEVER understand, it's just part of it. They can only understand to a certain point but there is a wall, and it's better you don't force that expectation on people Just keep yourself busy. Doesn't matter what it is, idle handle are the devil playthings as they say. Well an idle mind lets your thoughts wander, which can turn into a bottomless pit. Look for online friends if you can, maybe not ones with health issues, or maybe even some with it, doesn't matter, just find someone to talk to! I do hope you feel better. I've been "sick" over 15 years, been in and out of hospitals/doctors etc. It's a long road, but being negative will make it worse for yourself and those around you. And I truly understand that it is easier said than done, but if you're working towards it somehow you can change. But by not trying to change, nothing will improve.
  12. yes! I feel horrible after eating but I also found out I have insulin resistance. I've found that eating small vegan low carb meals every 5/6 hrs works best for me, the smaller the meal the better I feel and I'm constantly hydrated. How I feel is relative to my blood sugar/insulin levels as well.
  13. odd that you mention the swallowing thing, I have issues too. It's like there's something in the back of my throat. Swallowing is frustrating and if I drink something I basically have to gulp. I also have hyper pots.
  14. So I just moved to Seattle to be able to see the specialists over at UW and had my autonomic work up. During the table tilt test I was so miserable and almost went into hypertensive crisis. Once I was put upright I could barely think or talk or function. I just felt really disoriented and felt that way the rest of the day. During my test my heart rate went up to 170 and my blood pressure went up to 175/110. It was actually horrible. The breathing tests were also very uncomfortable and made me extremely light headed. And the skin test left me with some kind of weird rash on my arm that still itches 4 days later. I don't really know what to think about my test but I know I felt horrible and my body was freaking out. I met with Dr So, and Dr Oakley will be reviewing my results. They're the only two dysautonomia specialists at UW. Dr So said he didn't understand my symptoms and they're not typical POTS, definitely a form of dysautonomia and maybe hyper pots but I have extremely venous pooling and vasodilation in my veins. It's extremely painful and my heat intolerance is very bad because of it. He basically said he had no idea and would have to consult with other doctors. I've been checking my BP per Dr So's orders and my bp is weird. 110/90 or 130/100. Kind of confusing but only my diastolic number is constantly elevated. Just feeling frustrated and kind of hopeless as I've been dealing with for 15 years now. Just came here to vent because no one else understands how hard these health issues are.
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