Bigskyfam

Happened to me thurs. went to er. EKG normal. Subsided. Scary.

I'm not on meds, but feel like you do. Changes daily/ hourly. I left early tues because I started going tachy and had flushing ,I left before tremors hit. I exercise 3 times a week 20 minutes. Wear compression stocking if I'm up continuously, fluids and elevated bed. I think if most folks went to dinet site and forum they'd be different

I went into work today. Trying to do 2 days a week modified... Sitting as much as I can for a docs ofc. My ofc mgr asked me today... How much longer will you need this schedule? When do you expect to be better? We need more reliabity.

Bump

Dr grubb sounds like a popular guy. Did you have trial and error with meds?

How has exercise/ fluids and such been working for you? I had a ttt in nov and was dx with pots. No subtype. My docs are really stressing meds. I like that your docs are saying wait. I filled my scripts but haven't started yet. Wanted to see how lifestyle changes would work. So far, my initial symptoms have calmed down and I get flurries of more specific symptoms. I'm journalling it all to present to my doc, mayo or just to reflect. Welcome. A late one

I'm in the same boat. I'm in mt. Closest center I think is in az. Mayo. Anyway. I got my ttt here. Trying to get my norepinephrine level drawn. One doc said no. The other said yeah, but didn't follow thru and gave me a script for 2 meds. Scared to try. Small town. All cardiologists are in same practice. I've toyed with the idea of MSG dr S as well. Let us know how it goes.

I want to investigate a bit more

So glad I'm not alone. Scared to try florinef. Even more scared to try midodrine and BB . Wish my doc would listen more.

Katie, I love the sound of your dream team. When did you know when to move on to another doc?

Gjensen. I know Vanderbilt sees the overlap in symptoms as opposed to subtypes.i admire the relationship you have with your doc. I only see a cardiologist/ int med doc. Neuro said I know nothing about it and wished me luck.i just dont feel like my doc is researching other than calling mayo doc for an hour. It seems like you that I research on web and present to her... Then she says try these two meds, but doesn't talk about my thoughts. I see that you are a great historian and very sharp. I think if nothing else, that is in your favor.

Smart wool socks and fingerless gloves with mitten pull over part

Yogini. I agree and feel the same. Not alot of us pots patients here. There are a handful of teens. I'm hoping to get my doc to talk to the pediatric doc.he seems pretty hip on research and testing here in our sleepy little town.

Katybug. You seem like you got it together. I'm in mt... So far far away. May I ask if you are on a special diet? Gluten free... Etc. I'm leaning towards vitamins and diet since I've seen most improvement on lifestyle changes

Becia... I'll be watching your posts for answers... Good luck! Thx for sharing

Stefanie. Thanks for sharing! Was it hard for you to get your diagnosis? Did you see specialists?

Sue.... No meds? We need to chat. no meds for me... Yet.

What is the test for mcas? Sounds like you've made a good choice with doctors. What meds are you on? I can't read signatures on my mobile( I know a lot of folks post em) I only have a cardiologist. I feel I might need more.

I have raynouds/ chilblains... And pots

I'm not on meds. Dx with pots oct, raynouds dec. I live in mt. So it's cold and I keep my fingers and toes covered as much as possible. Smart wool gear has helped and lotion

Tyler must be an amazing kiddo. What a long road. I've loved reading your posts of hope and your always push for knowledge and ideas. Did his meds change once he was diagnosed as hyperpots? I'm med free at moment, improving slowly... Afraid of standstill...but starting to see more definite symptoms which is making me more prone to get as much testing here as possible. We live states away from autonomic clinics.

Becia... Do you have a subtype yet?

Whoa 30 seconds? I thought my under 5min was quick! I've been reading your posts...thoughts are with you.im so glad you are able to connect

Which came first with your pots diagnosis?

Medication trial or subtype diagnosis?

Did your meds change after your subtype was given?

Of course you are worried. There aren't any rules for pots. Glad your daughter has you. I've been close to passing out but never have. Hope that never happens. No real advice... Not on meds. Thoughts are with you

Happened to me today. I called off work. Hormones is what I'm chalking mine up to. Also happens 1 day midcycle. I'm not on meds though. I've been a machine this week though. Shopping at grocery store, shuttling kids, working... Housework