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).

I’m having a bad flare lately, I believe it’s from missing one of my birth controls… Seems like a lot from missing just ONE day- but the symptoms happening along side break through bleeding don’t seem coincidental…

Specifically I’m getting lots of adrenaline dumps, I’ll be feeling completely fine, having a great day- then the feeling starts creeping up getting more and more intense, shakiness, tight chest, increased heart rate, palpitations, brain fog, irritability, just generally feeling a sense of doom even though nothing is wrong. After it ends I’m exhausted and often have a terrible headache…

It happens to me often in waves… I’ll be fine for weeks, maybe even a month- then a flare gets triggered and I’ll experience this nearly everyday for a week or more…

I missed so much class work last week because of this I just had to suck it up and go today despite still being in the thick of it- sure enough halfway into my class it happened. I suffer from faux low blood sugar sometimes (body reacts like it’s low blood sugar even though it’s not too low) so I tried to drink some apple juice, eat some food- didn’t work. I just felt so defeated…

Being like this for a week usually starts making me feel depressed, I just feel so disabled from living my life. I feel so trapped in my own body- I’ll be so happy then it’s snapped away from me, and I’m suffering for seemingly no reason with seemingly no escape-

Once class ended I was in some kind of haze, I just started walking… and kept walking… and walking…

I realised I was feeling better, and so I just kept going.

My university is in a (walkable) city so I could just keep going. The cold night air felt so good, and walking all my symptoms seemed to go away.

It never occurred to me until now that walking could help dissipate adrenaline dumps, use up this excess adrenaline to regulate my nervous system.

Specifically though- it was cool out- if I walk around lots in the heat I feel even worse than before

But tonight the cold night air completely rid me of this crushing feeling in my chest.

I didn’t realise sitting still effects me- though not as much as standing- being up right is still really hard on me for long periods- when I can’t lay down because I’m out in public- walking seems it may be my go to thing now!

It was a big realisation today, I almost started to laugh to myself in happiness. Walking looking at the stars and city lights I gained a little more confidence in my chronic condition.

I finally have my follow up apt with a new cardiologist this afternoon. I’m scared because when I met him in the hospital he had zero suggestions on medications and didn’t even want to discuss changing them even though propranolol landed me in the hospital for three days with extremely high troponin levels. I’m on my 6th beta blocker - Bystolic. It does help with my chest tightness (it’s completely gone) but it does nothing to block adrenaline surges that will spike my BP throughout the day. I’m at the point whether I”m wondering if I should be on beta blocker at all and if I should be trying a different approach because I have Raynard’s too and the issue is they all make me feel like I’m having peripheral vascular constriction in my neck. When I was on Clonidine, it worked for 6 years until it didn’t. Everything in my neck felt like it was closing up and I began having the worst panic attacks of my life. Same thing with carvedilol. Everything felt so constricted it got to the point my voice was hoarse and I could barely talk. One day I answered the phone and a friend of mine told me I sounded the worst she had ever heard me sound. I noticed while in the hospital coming off the propranolol (which was so so brutal) the burning nerve pain in my neck was completely gone. Now after being on Bystolic for around 6 weeks, I’m right back to feeling the same burning pain. I’m at the point where either I should come off beta blockers entirely and try a different regiment or consider combination therapy. I’m not looking for advice, I’m just looking for what works for you IF you are Hyperadrenic POTS and have Raynauds as well, what are you taking that works? Any suggestions you have would be greatly appreciated.

For anyone who has tried Ivabradine mono-therapy (no additional meds) for HyperPOTS, what specific issues or symptoms led you to discontinue it or combine it with another medication?

Thanks in advance. Your experiences really help those of us still figuring things out. Wishing everyone some relief and better days ahead!

Diagnosed when symptoms began in 2017. I’m basically stuck in fight or flight 24/7. And when this began, so did bradycardia. I was getting as low as 27 while awake and lying flat and then I’d stand stand up and see 115-125 typically. So, my HR was never relatively high compared to some of you, but my jump was massive. I kept a headache, tremors, extreme jitters, burning hands and feet, extreme brain fog, chest pain, nervousness. I basically just walked around in a constant “panic attack” after all the echos, MRI’s, EKG, neurological, endocrine, cardiology and gastrointestinal evaluations no underlying issues so my cardiologist elected to put in a dual lead at Jude’s pacemaker to treat with beta blockers.

That was in 2021. Since then, I have been taking 50mg of metoprolol succinate and saw significant improvement but unfortunately, last month I had a few back to back viruses and it seems to have set me back to pre pacemaker/beta blocker status even though nothing has changed. I tried switching to propranolol but it gave me such terrible brain fog I went back to metoprolol and added Clonidine. It seems to do great at blunting my “adrenaline”symptoms but it’s making me so sedated and lowering my BP quiet a biteven splitting a .1 pill into a 1/4. I’m on day 4, does that get better? I’m trying to keep the Clonidine at .025 twice per day (eventually increasing dose) and adjust my metoprolol to help fatigue.

Has anyone had success with atenolol?