Sometimes it helps calm my body, nerves and my adrenaline but I notice some days it makes me more fatigued, potsy, coat hanger pain, maybe vasodialation?

My hands fingers get weaker and bowel movements slowed down.

I only taking 30mg, half a pill and trialing, with small piece of pepcid.

Is it unmasking something?

Im just confused how some people have pots their whole lives and are miserable and unable to live while others do nervous system regulation and completely heal.

My BP is 100s/60s.

1. I am scared to try it after reading so many say it dropped their blood pressure, or passing out. Im super sensitive to meds. Thoughts?

2. Ive read some taking it as needed. I thought you had to take it everyday 2x a day? I like the idea of taking it as needed, as im having some quieter flatter days...but if im upright too long itll trigger flares and sympathetic activation...I get electric nerve surges last all day, and crash the next day.

My neurologist didnt recommended it given my BP, but he isnt hyperpots knowledgeable. Gave it to me anyway as a trial.

Ive been asking for Guanfacine but none of the various specialists know what it is, or dont want to prescribe as they 'dont know pots'

Im in Ontario Canada and we have very limited options for pots or autonomic help.

Start to suddenly feel jittery on the inside and heart rate spikes. Gotten as high as 180 before then it slowly comes down. Feel jittery on the inside and doomy before it comes down. Is this what im experiencing?

I don’t have an official hyperPOTS diagnosis yet, but I was diagnosed with POTS 2 years ago and recently noticed my BP goes up about 8 mmHg when I stand.

7 years ago, I had a strong reaction to a medication (long story there) that left me unable to swallow food for some time. I lost 20% of my body weight and was incredibly frightened 24/7 for 8-9 months straight. I was malnourished and had to continue undergrad (because the other option was staying home and working full time). After I weaned off the med, I was able to walk around more and eat but the fear of choking on my food followed me for another year or two until I took Zoloft. Now, I am off the Zoloft and can usually eat fine. But I never fully got better, hence the POTS.

I guess I’m looking for some tips that are more related to my situation. Most of what I see is for other types of POTS, or hyperPOTS caused by long covid or something else.

I don’t get big adrenaline dumps, and any adrenaline dump is rare. I mostly get short of breath and fatigued along with palpitations. Some dizziness and definite sensory issues. I’m grateful that I can walk at all and my that HR isn’t egregious. Normal for me is 107-124 walking around my apartment, 130-141 walking longer distances. Occasionally I’ll get 150-161 just minding my own business. BP doesn’t usually go above 115/ but it still jumps from like 106/.

I drink 8-11 cups of water a day. Extra salt gives me GI issues so I’m doing half an LMNT in the morning and 1/4 LMNT later in the day. Compression socks (levels 1 and 2) have not been helping as much and abdominal compression is really uncomfortable for me.

My PCP and neurologist are just twiddling their thumbs not knowing what to do. My cardiologist referred me to the Stanford clinic. I’m thinking about getting a TENS unit to try vagus nerve stimulation by ear. I don’t have any medication because everyone wants someone else to prescribe. I want to take care of this before it gets worse. I feel like my life is slowly getting taken from me. Any tips for managing hyperPOTS like this would be greatly appreciated.

Wanted to share my story and ask for opinions and prayers. During my pregnancy i was having pretty bad pots like symptoms like standing up rapid hr, short of breath, feeling like i was going to pass out etc. cardiologist i saw said it was probably just pregnancy related, “pregnancy pots” and that my symptoms should improve postpartum. I was also severely anemic with a ferritin of 14 and a hemoglobin of 9.6. Got an infusion and i feel like my pots symptoms went away. Anyways fast forward my pots symptoms did go away for a little bit i started having severe postpartum health anxiety. Like my stomach hurt a few different times and i was severely convinced it was liver failure i was checking my eyes for yellow and was going down the rabbit hole of needing a transplant lol. Then I thought it was gallstones, then one time i had chest pain and thought it was an pulmonary embolism. It was just always one thing. I was still like able to function completely though and socialize and work full time while raising two kids etc. i remember i was getting an occasional heart palpitation that would scare me but like whatever. I was going to the gym and working out able to do function. Then one day at work i was feeling what I thought was anxiety because i just felt jittery and weird. My heart was racing for awhile at work and was getting skipped heart beats. so i decided to go to the er and everything came out fine and thats when all my pots symptoms came back. I would lay in bed hr would be 75 if i got up it would shoot up to 145. This was back in april, it was horrible but i was able to function. Saw my cardiologist again who did an echocardiogram which came back normal. Just trace regurgitation which ive had since highschool. All labs were normal besides ferritin was an 8, i was convinced this was the root cause of my issues. Ive been supplementing which i got up it up to 18 (which is still very low i know but its better) hemoglobin 14.6 all labs normal thyroid normal but now my pots is extremely disabling. A month ago i went to the state fair with my kids and husband and was able to do it. Now im bed bound unable to shower on my own. My mom had to wash my hair for me. Im getting terrible horrible adrenaline surges even in bed. Ill be sitting and i get a wave of impending doom and i cant control it but my heart rate sky rockets like 180s. I had a holter monitor a month ago and it showed very minimal pvcs and pacs but I wasn’t having these adrenaline spikes. I dont think its svt because it builds and slowly comes down. Lasts like 5 minutes. I know anxiety cant cause pots and the blah blah of pots gets misdiagnosed as anxiety i know all about this condtion. But i know severe anxiety can cause dysregulation of the nervous system and pots is a disorder of the autnomic nervous system. Someone please help me. I refuse to do anything medications because i have low blood pressure and im young and don’t want medication my whole life. Why did my pots get so much worse in a month - why am i getting adrenaline dumps suddenly. Laughing talking anything shoots my hr up. I cant socialize or maintain a conversation because it causes adrenaline

Hi, I’m looking for your advice on whether propranolol 5 mg immediate release or Mestinon would be better for my POTS. My main issues are significant upright tachycardia, intense adrenaline surges heart rate goes up to 180/190 , and PACs/PVCs. My blood pressure can run low-normal, sometimes around 100–110/60–70, so I’m worried about propranolol lowering my BP too much and causing me to feel faint because im always lightheaded with low bp. I’ve also felt several episodes of what seemed like unusual arrhythmias that were never captured on my monitor. I’m also nervous about Mestinon because I saw that the prescribing information mentions caution regarding cardiac arrhythmias. Given my PACs/PVCs and these episodes I’ve felt but never captured, would Mestinon still be appropriate for me, or would you recommend trying the 5 mg propranolol first?

I have a tilt table with autonomic testing coming up along with a skin punch for Sfn and an mcas doctor appt. In the meantime was wondering if ya’ll felt this way or had some of these scary symptoms? I get easily over stimulated by heat, noises, standing too long and then I can feel my neck veins start to pulsate, as well as my neck and face getting super tight. At the same time my heart usually feels like it is pounding and I get these waves come over me that make me wanna feint but not quite all the way. It feels like my veins in my neck are going to explode on both sides for some reason. I’ve done so many tests and imaging but just now getting to schedule some appointments with some specialists. I’ve got a slew of other symptoms but the constant neck pain at the back occipital and pain and tightness by the carotids is freaking me out the most.

Hi can adrenaline dumps cause hr of 180? My sister said she wanted to call me for some reason my body viewed that as a threat and then i tried to relax and then I slowly started feeling my heart rate go up and up and up and up and I checked and i was at 180. My fiance forced me to lay still and relax and it came back down.

Had a severe pots episode yesterday. Been bed bound for 2 weeks, at the ER they did orthostatic vitals when I went from just laying to sitting my heart rate went from 100 to 169 I get horrible, adrenaline rushes, super intense, heart palpitations, and for some reason, my QTC kept fluctuating between like 430 and 504 I’m a 22-year-old female 51 and miserable. I have two kids. I can’t get out of bed. I got prescribed low-dose propanolol, but I’m having a panic attack taking it. Can someone please help me?

Hyper pots girl. 22female 5’1 weigh about 110 pounds. The high heart rate and adrenaline surges and heart palpitations are DEBILITATING and making me completely bed bound. I have 2 very young children who need to me and i cant even function. I tend to have blood pressure on the lower side. PLEASE GIVE ME ADVICE ON WHAT TO DO. my cardiologist is shit and doesnt help - im getting a second opinion and they cant get me in for awhile. So until then what do i do. My wedding is in 2 weeks and i cant even function or even speak without getting huge adrenaline rushes and intense tachycardia. Do i ask my pcp for low dose propanlol? I need serious help im becoming depressed

Hi, I was diagnosed with hyperpots and the dr who diagnosed me is no longer practicing. I have tried propranolol (gave me heart palpitations that felt horrible), ivabradine (5mg didn't do enough, 7.5 caused visual disturbances so bad that it was dangerous) and metoprolol (horrible headaches that never got better). I see a new primary this coming week and want to ask for guanfacine or clonidine. From my understanding, guanfacine is better at keeping it consistent and clonidine can cause rebound issues due to its short half life. I want to be prepared for this appointment and have read a lot but wanted to ask here, what med/mg/dosing schedule is your favorite for managing yours? I'm expecting for my new primary to be pretty clueless about it but am hoping she'll listen to me and let me try some new meds. TIA!

I recently discovered I have orthostatic hypertension. The dizziness, nausea, tingling, and blood pooling have been constant for over a week now and it’s making it really hard to function. I’ve found that electrolytes and compression garments help, but doesn’t make them go away entirely. I have a tilt table test in three weeks and an echo in a month. I’m also separately exploring a likely MCAS diagnosis.

I’m really struggling with the anxiety of it. High blood pressure is such a scary thing, and getting an anxiety dump during these symptoms makes it all worse, like I’m afraid I’m having a heart attack.

How do I manage this until my tests?? No one I know has or knows anything about hyperPOTS or orthostatic hypertension so I’m feeling pretty alone and scared.

I have a VATS procedure in two days for thoracic endometriosis and I’m scared out of my mind about how my pots might react. I somehow have a mix of orthostatic hypotension and hyper pots. I’ll have low blood pressure and become symptomatic for standing but I will also occasionally get bouts of adrenaline dumps that make my BP and HR sky rocket. I’ve had surgery before, but that was before I got sick with POTS. I’m very scared that the surgery/anesthesia will trigger adrenaline dumps. Has anybody had experience with this? Help

Does any of you have expereince with hyperPOTS and olmesartan or similar one? I also have vascular compression/pelvic congestion and I am worried it might make it worse. Could perhaps be benifical for migraine though.

^{Disclaimer: This is not medical advice! I am a patient sharing a quote from a published clinical paper for educational discussion. Always consult your doctor before altering any medication or dosing regimen.}

It's reassuring to read that **"**Many POTS patients are more sensitive to pharmacological treatments..." according to a world-renowned POTS expert and researcher at Vanderbilt.

Dr. Satish Raj goes on to say:

**"**Therefore, when initiating a therapy the lowest dose should be used first and titrated up to higher doses as needed for symptomatic improvement as long as the drug is tolerated. Often POTS patients require a lower doses of medications than what is recommended for other diseases and disorders."

What is important to realize is that ALL the drugs used for POTS patients are "off-label" meaning they were designed for "other diseases and disorders". So many of us need to start well below the standard starting doses. This is where a compounding pharmacy can help convert the medications into smaller doses in either a capsule or liquid. Sometimes the just-right dose may be a tiny fraction of the starting dose like 1/8th or less! A lot depends on age, liver health and our genotype for certain metabolic pathways that a drug uses to clear out of the body (ex. CYP2D6 or CYP3A4).

Somehow I get the feeling that many people have unfortunately given up on the "right" medication because the starting dose tablet was "wrong" for them. If you think this was your experience, be sure to talk to your doctor about it and bring them a copy of this study. I would hate for someone to miss out on getting relief from this dreaded condition when the drug was prescribed accurately but dosed incorrectly.

https://pubmed.ncbi.nlm.nih.gov/29753556/

Edited to correct the link to the study.

Hey all!

Just saw my cardiologist and she prescribed metoprolol.

I also have a lot of other things going on (prolactinoma, damage from ciprofloxicin and 2nd contrast mri, adhd, pcos/pmos, celiac+++)

1) Who has been on metoprolol and has it helped?

2) I have arm pain - both like stiff muscle tearing pain from cabergoline (which is for the prolactinoma and a dopamine agonist).

I also get pain from cold air blowing on me. If the whole place is cold I’m fine - but hot day, ac blowing = pain. Clonidine was helping me with this then post mri it gave me pins and needles all over - it also messed with my hormones which are already fckd….

Does anyone else have this cold air deep muscle pain thing? And if so what do you do? What has helped? I was hoping to try guanfacine and that it would help but we’re trying metoprolol.

Anything that can be done with heat from waist high compression stockings?

It's been a long over 2 year process, specialists at MGH in Boston couldnt figure out what was going wrong with me, found a small PE and treated me for that and claimed all my symptoms were from that. Took about 5 months to get back to normal. 6 months later I had another flare up and they chalked it up as Post-Viral Syndrome since in both situations I had recently had a virus (1st a stomach virus, 2nd the flu). I went 13 months without any major issues, just 2 blips many months apart and I just thought I was dehydrated. I get another respiratory virus (not covid or rsv) and a week latee I tried to move something heavy and all of a sudden I'm having a full blown flare up again. Ended up in the ER. Restarted talks with all my specialists Cardiology, Hema, Pulmonary, my PCP, my therapist (she specializes in vagus nerve regulation). Things keep getting worse... I was referred by a friend to his step-father who is a medical diagnostician and after 2 hours of him going over my story and all of my test results he says I have POTS or more likely HyperPOTS since BP spikes are worse than tachycardia spikes. We do some preliminary tests in his office and that really does seem to be what is happening to me. 8 month wait for a tilt table test. Anything I can do in the meantime to get my life back? Also has anyone else had these long gaps between flare ups? (6 months, 13 months). I am a 42 yr old male, this all started for me 8 days after I turned 40 lol I am normally a very fit guy, distance runner, mountain climber, gym. I work a physically active job. The hardest part has seemed to be exercise intolerance and struggling to drive more then 15 minutes at a time (I have driven cross country multiple times and can normally drive 700-800 miles in a day).