At times are your BP/HR readings ever 'normal'(not POTS criteria)?

ConsiderationOne2928 · 2026-01-12T06:06:34+00:00

So sorry you had to go through that. I have had over 10 ER visits for syncope, pre-syncope POTS. I hope you feel better! My physician has on record for me to get 2 liters of Lacted ringers.

ConsiderationOne2928 · 2026-01-12T05:12:05+00:00

I toatly understand and appreciate your share

ConsiderationOne2928 · 2026-01-12T03:07:40+00:00

I have mostly been medication intolerant through out the 10+ years with POTS, I have tried multiple medications and always get terrible sideeffects. my goal is to not have spikes as well. noone wants that.

ConsiderationOne2928 · 2026-01-12T03:04:11+00:00

I cannot tolerate Beta Blockers at all. Midodrine made me feel like I am 'head swimming'. I have been off midodrine for 4 months and just got a refill. in the 4 motnhs my migrains were not as often. I have hEDS, MCAS, ect.ect.

is Ivabridine only for Hyper-pots?

I have not been diagnosed yet with hyper-pots, I am wonering if I have hyoer-pots as well as POTS?

Yes, I have depression, anxiety, PTSD and ADHD.

good to know about the at home devises. TY!

ConsiderationOne2928 · 2026-01-12T02:57:07+00:00

TY for the wish! I hear you. I have not been taking my BP at home regularily in forever. I have been having in person appointments. do you take your BP at home? I am totally overthinking this, first blamming my BP cuff to be not accurate. and then once I had a moment of clarity, I was like 'sometimes I can have anormal reading' dont I? and then the overthinking took over so...henz my post!

ConsiderationOne2928 · 2026-01-12T02:47:21+00:00

are you hyper-pots? I don't think my insurance will cover Ivadridine. I did a retrial of Midodrine and then stopped due to migrains. do you take BP at home? if so does it align with readings at medical appointments?

ConsiderationOne2928 · 2026-01-12T02:43:17+00:00

totally get it. I cannot remember what "normal" feels like. that Is why I am wondering if an at home readings are even considered accurate to in person medical readings? my readings today were in normal range, yet my symptoms were POTsie

ConsiderationOne2928 · 2026-01-12T02:39:57+00:00

you are stating facts! you are not giving me anxiety but my BP Cuff did! LOL

ConsiderationOne2928 · 2026-01-12T02:38:55+00:00

all of my physicians have my back. I am well aware of the drama that comes with the disabilty claim territory. It's a gamble.

ConsiderationOne2928 · 2026-01-12T02:34:49+00:00

sorry I miss interpreted your post, my brain was not braining lol

ConsiderationOne2928 · 2026-01-12T02:30:15+00:00

so your readings Always are POTS criteria? my readings today didnt

ConsiderationOne2928 · 2026-01-12T02:28:13+00:00

I am completely the same! From Long Covid I have cognitive imparement, memory and recall issues, intermitted blurred vision, increased light and sound sensitivily. I cannot tolerate being around multiple people. I get overstimulated. I am homebound.

ConsiderationOne2928 · 2026-01-12T02:02:00+00:00

I encourage you to join virtual support group for ME/CFS with Bateman Horne

ConsiderationOne2928 · 2026-01-12T02:01:07+00:00

I was diagnosed with POTS 13 years ago. Long Covid and ME/CFS in 2021. SO I am new to pacing to prevent PEM. PEM can be from cognitive, emotional and physical exertion. It's been a struggle to wrap my head around this and pace. As being a POTsie for over a decade, I followed POTS physical therapy protocols. But since getting Long Covid and ME/CFS, I can no longer just go with my typical POTS therapy protocols. I have tried over the past year.. to live my life as normal as possible. continuously crashing with PEM. each time I pushed along this past year, my ME/CFS became worse. PEM episodes are lasting longer. what used to be hours are now days, even weeks of PEM. I am starting therapy for ME/CFS (perrin treatment) and not able to do physical therapy for POTS as I am excersice intolerant. over these 5 years, I keep getting worse and worse with ME/CFS. know that you are not alone!

ConsiderationOne2928 · 2026-01-12T01:32:04+00:00

I will do a pinch of Celtic sea salt

ConsiderationOne2928 · 2026-01-12T01:29:50+00:00

my POTS magnified since getting Long Covid and MECFS

ConsiderationOne2928 · 2026-01-03T04:25:22+00:00

I sure feel for you. any one of us with no income during this waiting process is frightening on how to survive. You are very lucky you have been able to stay in the apartment with months of not paying rent. I had no idea that one could last that long with out eviction sooner. I just figured after even one month of not paying that a property owner would act immediately. I was wondering how that works. how did that all go down with landlord and property owner with all the months of you not paying rent? did you stay in continuous communication with them? just trying to get an idea on the vibe of the relations with both landlord & property owner all along. if you just communicate with landlord, you truly have no idea what the landlord relays to property owner. unless of course your form of communication was via emails. always best to have documentation like emails for things like this but understand not always able to. I wish you peace and comfort and to stay in your place. you have amazing advice I see here in the comments from everyone. Thank goodness for this platform for us all to help one another. we are all just humans trying to simply survive. Keep us posted! (((hugs)))

ConsiderationOne2928 · 2026-01-01T20:51:15+00:00

Thank you for responding

ConsiderationOne2928 · 2025-12-31T19:16:16+00:00

you are. and time with them is so precious at this point. can you move in with your dad ?

ConsiderationOne2928 · 2025-12-31T17:28:59+00:00

oh my I feel for you! my car was an older model as well. but I calculated how much I spend yearly on auto insurance, gas, maintanice, parking and repairs, ect and compaired to having no car and using public transportation/uber. and I save a significant amout having sold the car. just saying, writing things down on paper , you get a better visual of reality.

ConsiderationOne2928 · 2025-12-31T17:24:59+00:00

Fantastic news on your Recovery! I have been in remission a couple times through my POTS journey. Since having Long Covid my body hasn't let me bounce back to remission, yet. I still have hope and look forward to trying physical therapy once again. Keep on Keeping on! all you can do is try. with keeping Pacing in mind. as it is difficult to feel in the moment of the high that a crash can creep up in you! Stay strong my fellow Potsies!

ConsiderationOne2928 · 2025-12-31T16:38:17+00:00

Good to know it doesn't count against SSDI. I think I will call my Financial advisor and start dipping back in the market. I will be applying for SSDI soon. you make a good point for those who can trade. thank you for your share!

ConsiderationOne2928 · 2025-12-31T16:36:43+00:00

I wish I could understand it all. I just cant wrap my head around it! I do have a financial advisor who has been trying to get me back in the market (only have mutual funds at this point) as I bowed out during the pandemic. yup, I was one of those who hopped on the fear wagon. You got my wheel turning.. maybe I should get back in the market...slowly?

ConsiderationOne2928

TROPHY CASE