Kristina

I just wanted to provide an update. I saw my PCP and got a referral to see a cardiologist. The first thing the cardiologist is having me do is wear a holter monitor for 24 hours and track my symptoms at the same time. I'm also being tested for mast cell activation syndrome with the tryptase test as well as a 24 hour urine test. PCP said the worst case scenario was that I have an endocrine tumor or pheochromocytoma. PCP is leaning towards MCAS though and did prescribe me zantac and zyrtec to see how that helps.

After my heart rate issues yesterday, I've been feeling awful since. I got a headache a few hours after that 161 heart rate reading, and I still have it today and it's been varying in severity. My face has been perpetually flushed, especially my cheeks, but the worst of it is definitely this shortness of breath, worse tachycardia than normal, and chest tightness which came on this morning and hadn't gone away since (12 hours later). I've also been having issues with temperature regulation and sweating, but that's normal for me. I am definitely bringing up mast cell activation syndrome during my appointment with my PCP next month (earliest I could get sadly) and I guess we will go from there.

I have been reading up on mast cells and mast cell activation syndrome and it matches my symptoms. It took three months for things to get worse with the propranolol for me. How long were you on it if you don't mind me asking? A few people here have mentioned ivabradine and flourinef so I will be reading up on those. Thank you!

Hi all, I was previously diagnosed with POTS in May 2017. My PCP wanted to try me on propanolol for around three months, as my blood pressure used to tend to be on the higher side of normal, I took 10mg twice a day from May to around mid-August when I felt like I started feeling worse after I would take propanolol instead of getting better. When I initially started taking it, it took away a lot of my symptoms including the head rushes, vision disturbances, and pounding heart rate when I would go from sitting to standing or lying down to standing. This was a huge relief because I'm 25 and I believe I've had POTS for most of my life, so I thought all of the symptoms were normal things that other people also went through. I thought propanolol was my cure all, but then in mid-August when it stopped working I just felt fatigued all of the time, no energy, so hard to concentrate, and the tachycardia was back when I would stand up. I took my blood pressure 89/65/129. I had gone from having normal to sort of high blood pressure to having low blood pressure. I stopped taking propanolol. My blood pressure has normalized since then at a normal levels like 104/66/92 or 113/78/91 when sitting. Upon standing, the first two numbers don't change much, but here are the results of my most recent test from today after laying down for 10 minutes and then standing up: 0: 118/87/133 2: 109/91/150 4: 112/94/161 I stopped after four minutes (should have stopped after two). I now feel awful. I feel shaky, and I should have stopped way sooner but wow. Needless to say, I'm making an appointment with my PCP and getting my cardiology referral (which I waited on because propanolol was working). What else can they do for me? I have increased my salt as advised by my PCP and that has been consistent since I was diagnosed. I already drink multiple liters of water in a day and have for most of my life. I'm curious about other types of medications since all I really have heard of are beta blockers, and that doesn't seem to be working for me anymore. I am hoping to be proactive and do some reading before my appointment! Thanks all!

Hi Greyhound, your symptoms sound very similar to mine. My heart rate goes from around 80 to 90 resting to over 130 when I stand up, and I feel a lot of the same symptoms you do especially the thumping heart, aching legs, and the fatigue... I never realized that my increased lack of ability to concentrate could potentially be a related symptom of all of this.

Hey all, I just wanted to let you all know while I have not been formally diagnosed yet, my doctor did start treating me and prescribed me propranolol to help with symptom management. She is consulting with a cardiologist for a further course of treatment for me, as she does not want me to get shuffled between doctors as of yet. The medication has taken away a lot of my symptoms. I don't feel dizzy or lightheaded when I stand up anymore and I can't feel my heart pounding anymore. I think it is working. Everything feels so different. I honestly feel like a new person going about my day to day actions. As I think I've had POTS my whole life, or at least as far back as I remember, this is an adjustment, but I'm so happy that I've found something that helps!

Thanks for the warm welcome and support everyone! My appointment with my primary care physician is in less than a week, so I'm anxious yet excited to see what will happen.

I often find that my symptoms are worst in the mornings, especially when I first get up from bed. I'll feel my heart start pounding, it feels like my body can't regulate its temperature, and it can lead to nausea. Can't wait to go see my doctor and get a referral to get a proper tilt table test done. For me I feel like I start feeling a lot worse when my heart rate is above 130 or so, if I'm at 150-160 I usually feel like I'm going to either pass out or throw up.

Hi all, So so so happy I found this forum. I have not been formally diagnosed yet, but I suspect that I have had POTS for most, if not all, of my life. This whole time, I thought the symptoms that I was experiencing were normal and that everyone else also experienced them. It wasn't until I randomly saw a link to a petition for POTS awareness that I decided to click on and read that made me realize that I could identify with almost every symptom listed on that page. I asked my fiance if he ever felt these symptoms, and he said no. Long story short, I ended up buying a blood pressure cuff and we did the stand test. After minute 6 of me standing I felt like I was going to either going to faint or throw up. The last reading had my heart rate at 135, it had jumped over 35 points from lying down for 10 minutes (averaging around 90-100ish) to 135. At that point we had to stop. I have the test results written down and planning on bringing them to my doctors appointment at the end of the month. I am hoping to get a referral to see a cardiologist after seeing my primary care doctor. For those of you who want a longer version, feel free to read on as I describe all of these symptoms and things that happened in my life that I thought were normal *haha*. This all became subconscious to me and a part of my daily routine. For reference, I am a 25 year old female, in the normal BMI range, and I'm pretty sure I've had this my whole life. I have previously been diagnosed with ITP, but it has been in remission since a lot of IVIG and prednisone a few years ago. -Pretty much every time I go from sitting down or lying down to standing up, I get dizzy to the point where it's hard to concentrate on what's going on around me, my heart is pounding, my vision starts to get blurry or I get tunnel vision. and I get the chills. Sometimes it's so bad that I have to pause to collect myself before getting back to what I was doing. Sometimes it feels like I have to go sit back down immediately or I'll faint. -I have blacked out in the shower many many times. It's hard because I like long, hot showers, which I have now read are not the best for people with POTS, so now I don't shower with the water as hot and I've noticed a big reduction in the severity of my shower symptoms to the point where I don't notice them now. I had previously fallen in the shower from blacking out as a teenager however I never had health insurance so my parents just thought it was anemia. (I don't have anemia) -Straightening my hair is becoming a huge issue for me. I straighten my hair standing up. I have really long curly/wavy hair that goes down to below waist level, so it takes me a while. I frequently have to go take breaks and sit down while I'm doing my hair because my heart is pounding, my head is pounding, and my vision starts to get blurry and I don't want to end up burning myself because I can't concentrate. This last time I straightened my hair I pushed myself to fight through some of the symptoms and kept standing to see what would happen and I got so violently nauseous and ended up throwing up for a few minutes. I felt fine after I sat down. -My symptoms are alright if I am standing but slightly moving around and shifting my weight around. A few weeks ago, I had to give a presentation for work in front of 60 people, and I got up from my chair and stood up at the front of the room. I tried to stand still and do this professional presentation, but I had to move around and at least shift my weight on my feet while I was doing this. Otherwise, I felt my heart racing, my head pounding, I had the chills, and I felt myself becoming nauseous. I felt fine once I sat down after the presentation. -I can't really run or exercise aside from rowing or biking. I try to run and while it feels like I run for a lot longer, I can only run for less than one minute spurts before my heart feels like it's going to point through my chest, I get a headache, and feel nauseous. As a teenager, I took my school physical education/gym classes during the summers so that I would not have to run the mile because I couldn't stand how awful it made me feel. Rowing and biking I can do for over 20 minutes straight. I'm fine with swimming too, but anything that involves running around, I just feel so inadequate like I can't do it. -I am so very easily cold or warm. I frequently joke with people that my ideal temperature is ideally between like 70 - 80 degrees Fahrenheit otherwise I am either freezing or sweating. I have to have a heater at work because the the air conditioning always makes it within the 60 degree range, and that is too cold for me to even concentrate. At work, when I go from sitting to standing, I experience the same symptoms, and I am scared that I will end up blacking out or fainting at work. When I'm walking at work and there's a quick change in temperature (walking outside from inside, walking to different areas, etc...), I immediately get the chills and start sweating. I also experience a lot of IBS-like symptoms in the cold especially when my hands or feet are cold... and those are the first parts of your body that get cold. The worst part of my work symptoms happens during lunch time when I'm heating up my food at the microwave. Standing up next to the microwave for those few minutes waiting for a frozen meal to heat up is seriously the worst. I end up with a headache, not being able to concentrate on any conversation that's going on around me, I get the chills, I start to sweat, my heart is pounding, and I feel like I'm going to faint. -I used to be in choir from the 2nd grade through the 8th grade as a kid. I would experience so many symptoms when we would be standing up to sing and perform. I always had to shift around on my legs and fidget to keep from feeling faint and lightheaded. My heart would usually be pounding while we were standing up. There were times I had to sit down because I had tunnel vision, blurry vision, or it was like my vision was black and white. My choir teacher always emphasized not locking your knees, so I always made sure my knees weren't locked, but I guess because I was upright I still experienced symptoms. Another time, I remember walking from a different building to an outside area to my main elementary school building in a line with my classmates and my vision started to go again, my heart was pounding, and it was like I was experiencing time in slow motion, and I had to stop and crouch against a wall briefly, but I was so happy when it all went back to normal because as a child, that was scary. -My symptoms are worse in the mornings. For a long time, I thought I had IBS because a lot of my other symptoms seemed to match with that, except that everything is worse in the morning. This year, things have been getting a lot worse in the mornings. I usually feel nauseous right when I get up from lying down to standing and walking around and this has sometimes led to me throwing up. I also regularly have morning diarrhea (almost a daily basis) and a whole lot of stomach pain. Just posting this because I don't have anywhere else to and I never thought that any of this stuff was not normal because the symptoms I've been experiencing have been ones that I think I've had my whole life, so I just assumed this was normal. I'm seeing my doctor at the end of the month and plan on sharing all of this with her and go from there. I look forward to getting to know you all and your stories in the meantime!