Your symptoms are very similar to mine. 200/120 heart rate 110-130. I totally understand what you’re going through. Also, my skull cracked behind my sinuse cavity and part of my brain mushroomed out into my sinuse cavity with spinal fluid leaking out of my nose. Let’s just say the last 10years have been challenging. Having a doctor that diagnosed you and in some case backs you up for disability is a must.

From one potsie to another, thank you. We share mostly the same symptoms. My BP goes as high as 212/111 and last year March, it went from 140 to over 200 by just standing up within a minute. I was forced to stay at the hospital for 3 days and to make matters worse, was diagnosed with covid too while at the hospital. The worst symptom is that where my body can't calm down. I hate the sensation of feeling like something is crawling all under my skin. It's brutal but somehow, we survive it all daily. I am currently searching through the web to see what others are experiencing and what they are doing to at least, get some normalcy in their lives. This video helped. Thank you so much.

Thank you so much for the vídeo. I have not been properly diagnosed, but I have all The symptoms...have been dealing with tem tem the last 4 years now. Horrible experience! It is good to listen to other People Who has the sabe problem. Sending good vibes to you.

Compression calf sleeves and saline infusions can help. The Alpha-2 agonists (Clonidine or Guanfacine) specifically target hyperadrenergic POTS by signaling the body to not dump so much norepinephrine and adrenaline into circulation. They've been wonderful for me. I have hypermobile Ehlers Danlos syndrome. I also have digestive motility issues, which have been eliminated by Mestinon (Pyridostigmine) - plus this medication can help a bit at mitigating POTS symptoms.

Thank you for sharing this. I have hyperpots, hEDS and chronic migraines. Living with these conditions is really tough. It helps to hear what others with these conditions use to deal with theirs. I'm so thankful for the support of my great doctors and the support groups online. Wishing you better days ahead.

Thank you for sharing your story. Im piecing my daughter symptoms together.

Thank you for this ! I have been dealing with this fir twice years now . Still in the diagnosis stage but drs are treating the pots symptoms only . I feel it’s going to be a long road ahead .

It's hard to get s proper diagnosis. I'm trying to find a "movement" that knows where to knock. I'm exhausted and getting a bit hopeless. Thanks for sharing

Thank Allah i dont have thee extreme condition with blood pressure and heart rate, mine normally go up when standing up or when i climb a stair, usually it gets normal within 2 to 4 minutes, but i have migranes, indigestion, chest pain for over an year now, and 2 months back i was having trouble breathing when walking, also had fatigue and loss of apatite. also 2 weeks ago was having trouble swallowing saliva, saw an ent doctor, he did a barium swallow x ray and said there is no issue. I have symptoms of heart faliure, throat, and lungs cancer. Last year saw a cardiologist and he did blood and treadmill test and everything was fine, he told me clearly he has no idea why its happening. He gave me Ciplar La 40mg. This medicine works, it controls tachycardia by 60 to 70 percent.

I'm glad you've gotten help. I'm dx on propranolol but my heart won't chill. I sweat profusely. My all the cardiologist I've seen are beyond ignorant. They won't even do iv fluids for me. Told me I'm screwed and that's all the treatment I can receive. I have eds3 and gastroparesis. You'd think there would be more help by now

Me too

I also have fibromyalgia and I do exactly the same with my words. Also, I’m being diagnosed at the moment and you sound like me 🤗

Fellow pots sufferer here. Currently taking a beta blocker which helps reduce the tachycardia but still feel symptomatic. I can relate to the feeling of not being able to relax. I want to try one of the alpha agonists medications to see if it could help. I feel so wired , like I am on 10 cups of coffee a day. It really is horrible. I’m just wondering how long have you been taking methylodopa ? Also, do you think there will be a time where you are rehabilitated enough to then wean off the medication or do you think you will have to keep taking it indefinitely?

My endocrinologist diagnosed me POTS but kinda just left me high and dry. I didn't even know what he was talking about. I went to him for my hypothyroidism and anxiety/panic attacks and he diagnosed me with POTS after checking my BP and HR lying and standing. In my intake form I had listed issues with numbness and tinkling, heart palpitations and chest pain, shortness of breath, leg pain, and a bunch of other stuff. Between the BP and HR test he did and those symptoms he said, "You have Postural Orthostatic Tachycardia Syndrome. And I was like, "Wait? I have a heart disease?" (I heard the word Tachycardia) He told me no but never explained anything. 🤷 I stopped going to him after driving four hours round trip every six weeks. I found a local GP and when I had my records transferred over and he saw the POTS diagnosis he referred me to a cardiologist and neurologist. So now I have those two appointments coming up in the next couple weeks. Because of the way that I had been feeling I was afraid that I had too much salt in my body so I pretty much went salt free. After that though it seems like things or even worse than before. Now I am hearing you say to increase my salt intake LOL. I'm not sure what to do at this point. Sometimes my blood pressure is completely normal and then other times it jumps up to like 190/100. It will start at like 180/90 and when I see the numbers my anxiety kicks in and it goes even higher. And then my heart rate will jump up as soon as I stand up or start panicking. Even at rest my heart rate tends to stay in the 80s and 90s. I apologize for this being so long. I wasn't planning on writing a book LOL anyway, hopefully I will get some answers at the cardiologist and neuro appointments. Thank you for posting this. It gives me hope. ❤️

Wow sounds like a extreme case, You do any laying exercises? And what about dnrs? I have more mild diff version pots but curious what else u tried

Dehydration with hyperagernergic pots is likely worsened. I have hyperagernergic pots due to my paraganglioma. When dehydrated. Which is constantly...I presume due to the fact I urinate massive amounts at multiple times throughout the night. I believe There is a secondary pots syndrome in this instance. ( Hypovolemic pots). It's kind of like kicking a horse while it's down. Also. I'm curious about how or why you mentioned that the pots cause the norepinephrine and epinephrine. I always thought it was quite the opposite as it is a syndrome not a disease. As in my case Paraganglioma secreting norepinephrine causing pots. However a number of diseases may cause your body to develop pots. Including vagal nerve injury and disease.

I've questioned if I had POTS before bc I get faint while standing, especially in heat off and on for years now. Then I started having heart palpitations unless I sat back down last summer. I also found out I had hyperthyroidism so I thought okay, maybe it wasn't POTS after all. But now for 5 months I keep having random what feels like adrenaline surges and idk why and it really stresses me out. Happens alot when I wake up from a nap od just random wether sitting or standing. Does that sound at all like pots?

Thanks for sharing your story , do you also have polyuria? (Frequent urination?) That makes it hard to stay hydrated. Maybe it's compounded by high blood pressure against the kidneys, making them overactive, which is also the location to release the adrenals understress ..

Where is a good place online to find compression stockings? I’m pretty slim and tall so unsure about fitting. Like almost as skinny as Taylor Swift so I’m not even sure what size that would be haha. I definitely want them to be tight

Any idea what might have initiated your POTS manifestation. I'm dealing with a lot of these symptoms, namely throbbing pressure headaches when standing, but I have no idea why these symptoms randomly gradually developed over the years.

I have this too and am untreated. It usually is brought on by viral illness. Then will decrease in severity after a few months. I just got COVID and am dealing with severe symptoms. I have constant panic attacks, SOB, can’t sleep (sleep apnea now, I think), blurry/grainy vision, etc.

I am currently on Verapamil which helps, but I still have wild swings in heartrate and blood pressure when I am upright, I am hoping my doctor can get educated about this so as to help me.

i have it too!

Dr Dianna Driscoll has a great video she made years ago on this exact diagnosis. Highly recommend for anyone with this condition.

Were these symptoms all the time or just occasionally?

Calcium channel blockers dont work, Propranolol doesn't work, Corlanor caused 207 heart rate on loop recorder(had an E.P study) Metoprolol caused heat intolerance so Throughout the past 10 years I keep going back to Atenolol which works great but now I have a positive ana (drug induced) and I can NOT stay conscious in anything above 76 ﾟF. Need to try something new medication wise, i want my life back 😪

Have they ruled out pheochromocytoma?

Aren’t you supposed to avoid high salt with high blood pressure?

Hi, I’m in tears. I’ve never met anyone in real life that has this. I have suffered with this for 15 years. I truly hope you and everyone on here finds relief. I will share what I am currently on in hopes that it may help someone. I take propranolol 40mg x3 and Doxazosin 4mg x3. Every 8 hours I take both of those. I also have reactive hypoglycemia and take 100mg of Acarbose with every meal. I am open to answering any questions and I want to thank you for making your videos. While I hate to hear stories of anyone going through this, it helps to know I’m not alone. Thank you ❤

Who would people go to t ok find out the TYPE of POTS they have

Wondering how your lifestyle has been affected. My daughter used to be athletic but now..not at all.

Wait, if you code you go to the ICU and you get admitted! It’s serious. Not fast lighting you as I also have hyperadrenargic POTS and it does feel like death.

can i have hyperpots without high blood pressure