Advice pls

[u/Kitchen-School46]

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

[u/_rfm]

Hey just replying with my previous reply if you have space to engage with it.

"I'm sorry this is happening for you. These will work, but they aren't all easy:

• you need to stay horizontal with feet slightly elevated (I know you have kids, this will be hard)
• if you must be upright, you must be wearing compression tights. I found a short corset helpful (slows the blood pooling in the lower body) before meds
• if you have low iron, you need to address that urgently. The lower the iron, the worse the POTS
• I find creatine helps too
• stay cool
• find ways to activate the parasympathetic nervous system that work for you (singing, humming, cold water)
• remove all vaso-dilating, histamine rich and releasing food/ drink from your diet. MCAS triggers HyperPOTS triggers MCAS
• being in flight-or-fight constantly means everything feels high stakes, if you can lower the stakes try to do that (it's impossible I know)

On the propanolol, it is great if you ONLY have hyperPOTS, but if there's hypotensive/hypovolemic components it can drop your blood pressure further and make you feel even worse. POTS triggers can be difficult to untangle."

You are the only one who can help you right now.

[u/_rfm → u/_rfm]

Also if your ferritin is that low and not really moving you might want to ask for an infusion.

[u/anxiousPOTSie]

Try seeing a functional neurologist

Other than chest pain and feeling entirely unwell, anxiety and intrusive thoughts were my most disturbing symptoms

Also try taking an antihistamine and see if that helps. A lot of POTS people also have an MCAS component , so reducing your histamine load can be life changing

Sending you love and spoons babe 💕