kalamazoo

Yep I have high levels of adrenaline and I've had echos, EKGs, etc, all normal lol. And there isn't really a medium I can hit. It's either feel semi rested with high resting heart rate or feel like i'm going a million miles an hour with a really high heart rate of at least 150. Even just cleaning gets me exhausted. I'm going to UW in a few months for autonomic testing so hopefully that'll give more answers and I'll be seeing the POTS specialist in Kirkland as well. Doctors in Alaska have no idea what they're talking about or doing unfortunately.

I'd still hit 200, my POTS isn't just postural, though it is greatly exaggerated by it. My HR is just always elevated. Sometimes my resting can be 60ish, but i usually sit around 90. Any type of heat or exertion just makes it spike really bad. I can't cycle, I've tried that, same response, I haven't tried swimming though. And that's good that you're not having any negative side effects any more with that high of a dosage, I haven't really noticed any side effects except being really tired. My HR is high too, ad the propranolol keeps it around the same as yours as well. About 135/85~90. IT's a good thing you've been able to figure out your exercise though. They want me to exercise too but I haven't started the ivabradine they prescribed me because I have severe medication anxiety lol ... one day

mo? I can't exercise, at all. I feel miserable with any physical exertion. My HR gets to about 200 just with fast walking, I basically cannot tolerate anything that makes it elevated and feel horrible afterwards, I also have BP issues though as well. I would just be careful about taking so much because it really can lower your blood pressure, which is part of why I take it. Maybe monitor your BP to check? Since you did increase the dosage without your doctors instructions. I'm just very leery about medications lol. Just be careful because increasing your meds 3x seems kind of dangerous without doctor approval. Don't mean to sound like I'm telling you what to do but I know I feel a difference just on 30mg, I don't know how I would be able to handle that much, granted pronranolol only reallly lasts for about 5/6 hours.

Could it be dysautonomia, yeah for sure. We aren't doctors but i can tell you a lot of people on this site don't just experience high hr standing. I have high hr all the time that's worsened by almost anything. But i have hyper pots. You should probably see a dysautonomia doctor because a lot of other issues go with dysautonomia, check our the list in the forum section and see if you have any of the other ones because pots usually affects a lot of systems in your body. Small issues you might not expect it to. My heart rate ranges from 60-120 resting no matter what i do.

Do are you saying you take it twice a day or 3 times? I take propranolol 30mg once a day, twice if i feel like **** later because it's not the extended release form. I'd be worried if you were taking the extended release form that many times a day. And propranolol helps me too, not a ton though but enough to function. My heart rate and bp still go up and i still get short of breath

Really, put yourself first. It'll help you so much. Also I have the temperature issues as well, if I get hot with my entire body I basically can't function, my HR sky rockets, I turn bright red and I get severe swelling in both my hands and feel. I have erythromelelgia because of this. Was one of my first symptoms. I actually bring a small fan with me around, and I always bring cold water, as cold as I can get it, I usually leave it half frozen from the night before. I don't wear a lot of layers, nor anything on my head. I actually live in alaska so even when it's extremely cold -10, I still don't really bundle up because the cold is nicer to me. I also at one point looked into this vest you could wear that basically is a bunch of ice packs to keep you cool. It was kind of an extreme thing but at one point I was desperate. I don't really eat spicy foods, or drink hot drinks. A flare from heat with my body can be set off with anything. But asking your job for a fan or stool whatever should be perfectly okay. It's considered a reasonable accommodation and them denying you is illegal.n

you sound like you're off to a good start and an improvement, that's awesome!

Your story kind of sounds like mine and I'm also the same age, and I'm also on proranolol but I have hyper pots. I get very tired from propranolol and I honestly NEED about 10 hours a day to function. It's not me being lazy, but I genuinely need 10 hours to be able to function or else I'm just too tired during the day to do anything. I've struggled with depression for a long time because of this disease and was hospitalized once for issues related to suicide so I really know how it feels to be down because of the life adjustment. Accepting your limitations will be the best thing for you. My life revolves around my disease. I've even started listening to music that helps calm me down. I don't do doctor apts in the morning, I don't do anything late, no caffeine, I changed my diet to vegan and gluten free and I feel way better. I would look for ways you can improve your health in general as well. I take vitamins, and eat protein shakes and try my hardest to eat well, get enough rest and try not to get stressed. It's so simple but it really has helped. This site also helps, knowing you're not alone is bittersweet. But we all understand. I had to made adjustments at my job and at school too but it's best to always be honest about your limitations with employers and anyone really. I turned to art though. When I paint, I don't think at all. Literally at all. It's the most soothing thing, I just paint for hours with some music on and I forget all my issues. I do have leg pooling so I have to be carefu lwith that but I drink a ton of water and that seems to help. Really I would suggest taking care of yourself in every possible way you can. Dont' feel bad for feeling tired, it's just part of it, especially after you take propranolol. Don't feel bad for not having the energy to do things, it happens and you would probably feel worse if you forced yourself. Also try and get a support system, I have my dad who is my rock, if you don't have anyone maybe look for a friend on here.

Doctors are always quick to dismiss health issues they cannot label. I personally would look more into it if I were her, being that she already has dysautonomia, so many other symptoms and issues can occur because dysautonomia affects the whole body, and it affects the whole body differently for every person. I personally have not heard of a particular issue like that, but there's a lot of other people on this site with other symptoms that maybe someone has and can hopefully give you more insight. But I personally would find a doctor who would take a more direct approach. Maybe a neurologist who is willing to look more into it because it sounds like something neurological. (But I'm not a doctor) I hope she can get some answers, good luck.

I have panic attacks when i take new medications, ironically I have xanax that i was recently prescribed a few weeks ago that im still to anxious to try, how ironic haha. Good luck on your new meds. I hope you feel better!

I'm curious, you say your bp is all over the place, Does that include high? I was under the impression that medicine is to increase bp, i dont know why is why I'm asking though lol

Hello, I have hyper POTS, I have very weird blood pressure as it ranges from 100/60-140/100, so yes this is something kind of common with hyper pots. Now I'm of course not a doctor but for hyper POTS a table tilt test with norepinephrine is the standard, also testing for mast cell activation syndrome, any allergies, some times go hand in hand. And high BP is more seen in hyper pots from my understanding as typical POTS is more associated with lower blood pressure, but again, POTS is so **** all over the place it's hard to say without further testing done.

I don't think anything with POTS is normal haha, but I've never passed out, but I also don't get low blood pressure, I have hyper pots so it's kind of the opposite. I do get vertigo randomly though, more often lately too where I just suddenly feel like everything is spinning beneath me. 13 times a week seems like a lot though, have they put you on any meds or any type of symptom management plan? And have you seen a doctor that specializes in POTS? A lot of doctors know kind of just the surface of the pathophysiology but don't know much about specifics and thus can only be so helpful.

Honestly im trying to help you. You should seek a doctor. Everyone here jas already answered your question on whether it sounds like dysautonomia but we aren't doctors and that's what you need. I'm not trying to be rude at all but you really should find something to keep you occupied because you definitely sound anxious which is normal but you need to try and help yourself. Buying more things to monitor yourself every minute isn't going to help. I've been where you are, fixated on every weird sensation or change in my body. Your blood pressure and heart rate change all throughout the day due to a number of things. Smoking, caffeine, anxiety, sleep deprivation etc. So there's no point in listening to yourself like you are, you're just making it worse. Document the real and troublesome symptoms that happen more than once and see a doctor. There are clinics you can go to that are inexpensive and stuff you can do. But seriously, do something.

If you're that worried go to the hospital or a doctor, not having insurance isn't an excuse to not go if you think you're going to die. If you don't feel like you're getting enough oxygem then you're probably hyperventilating or are anxious. I know having health issues is scary but you don't even know if anything is wrong. People have given you advice, so take it. I'd Get off the internet and go distract yourself from every up or down your body has and relax. You're not going to die.

Smoking raises your heart rate and blood pressure so it's good you stopped. And a plant based diet is always good, jist make sure you know what you're doing. Lots of people fall into ruts making the transition because they're not properly educated about how different a plant based diet is. Do yoir research. Also it's different from veganism in that veganism is more a lifestyle versus plant based diets are just that. You'll feel better. Look into nutritional yeast, vegan protein shakes, vitamins etc.

It could be anxiety but you should probably ask your future doctor for a table tilt test and something for anxiety as well if they think that would help also.

No, nothing sounds life threatening, but I'm not a doctor. Just write down your symptoms so you can give your info to a doctor and i don't know how you'll get on insurance since the marketplace is closed for new applicants, so I'm assuming you're maybe getting put on hers? Maybe see if you can find a doctor who takes payment plans ot something? Just to go in for your basic check up and some basic blood work if you can anyways

When are you seeing a doctor

I was like that when I first started having symptoms and it made it to the point where I was scared to even leave my house. I know what it feels like to worry over every little thing, but the fact is, you haven't had anything major happen and you probably wont. You'd be amazed at what the body can handle. I'e had several tests done from almost every type of specialist out there, it all relates back to my POTS. POTS is just a ****** disease because it can't be localized to one area or trigger. It's a encompassing disease and the symptoms like our bodies vary A LOT. Like I've said, I know it's hard not to worry about every little thing that feels off, but that's just how POTS feels and once you can kind of accept it and realize that it's your POTS it'll be easier to not get anxious about it, because trust me, you are making yourself more anxious. It's an endless cycle with POTS, you get anxious because you don't feel good and then your anxiety makes you feel worse. Granted that's how I am, medication has greatly helped and I stopped checking my blood pressure, heart rate and blood sugar constantly. Good luck!

It's probably just an error from being moved while you're doing things, if you flatlined you probably wouldn't be typing here lol.

I do have chest pain almost constantly, if I don't have pain I have tightness and pressure. It radiates into my elbow and my neck, when I first starting getting symptoms about 10 years ago I would frequently go to the ER when it would get back. I have also had percarditis . I have hyper pots. and let me say, I am so sensitive to food, if I eat large meals, high carb, high fat, high sugar I feel HORRIBLE. Chest tightness, head pressure, trouble breathing, stomach pains etc. I have changed my diet several times over the years but I eat a strict vegan gluten free diet with about 6 small meals, never large meals. I also drink a TOOONNNN of water and low sodium as well. I recently had surgery for a kidney stone and ever since have been extremely cautious. diet is so important.

Body weight fluctuates a lot through the day and night so this isn't abormal. Like I said, you might be making yourself worry over nothing if you pay too much attention. Because I know I am like that.

Try not to worry about every single thing, the fact is people with pots are subject to a loooong list of random issues with seemingly no catalyst whatsoever. Don't monitor yourself 24/7 because the body fluctuates so much it's almost pointless. (in my opinion) When i watch and listen to everything my body does I find I'm more anxious and worried and then get hesitant to do anything because of it. It's not a good feeling. Find a good doctor and try to relax if you can. Good luck!

In reference to one of the comments, don't try and treat yourself at home until you have the ok from a doctor. More specifically don't start adding a ton of sodium to your diet especially if you suspect pots and have high bp. I have hyper pots and my bp ranges from high to low and i eat almost no salt as recommended per my doctor. Everyone is different.