Bigskyfam

Thank you for your thorough comments guys! On days like this it helps keep me grounded. Can't thank you guys enough. Here's to a happy HEALTHY 2014

Scary! Thoughts are with you.

Hope u feel better soon rosey

I've only had timex easy trainer. After of course a cheesy Walmart one that stopped working after a month

thank you guys. I know my docs mean well. I figure I'll take my dads advice... When u know, u know.thats when or if I take meds. I have a low grade fever so maybe I have a bug... It will be interesting to see if I can through it med free/er free. I've read so many posts of folks getting sick and heading into er. My docs are on vacation this week. Go figure

I think I over did it this weekend. Hr high today. Argh. Despite fluids, salt. I only did 5 min on the bike as opposed to 13. Bathed, ate and trying to relax. Hope it's merely a speed bump. Well worth watching my little guy do jujitsu, mass and riding with my daughter while she drove for the first time. Hope you guys' Monday is going well

Kjay.. I understand and agree about your niece. I hope we can figure our disorder out so we can have more options. Closest autonomic clinic to me is tx or mn

Congrats Rosie a bike for Christmas is good!

Thanks guys for your input. I can see your thoughts and understand both. Since its a new diagnosis I'm holding off. I'm so glad you guys are here with me. Maybe meds in future if relapse or standstill. It's great to see what has worked for others. I work in the medical field and had my whole thought process turned upside down. My docs insist on trying meds. If I hadn't seen improvement I might have.

I have a script for florinef and another bb. After the first one I'm a little shy. I just don't believe I'll ever be 100% again no matter what I try. Toying with the idea of. B12 and natural stuff. I don't want to upset my docs by not trying it... But really there is no FDA approved drug or plan for pots.

How long were you on meds if you don't mind me asking? I hope to follow in your footsteps. Glad you are feeling better

Dx in nov with pots, appt mon with eye doc. Blurry vision comes and goes. Hope to get answers

V8 is my friend . If I chug a can and 16 oz of h2o first thing in the am it's a decent day. Keep us posted. Good luck! I'm in cardiac rehab I hope to get a recumbent bike for home after I finish the program

I'm not back to where I was a year ago but markedly better than 3 months ago with 1. Bed elevation x6inches 2. Increase fluids 3. Increase salt 4. Exercise recumbent bike( started at 5 min 3x week now at 13) Scared to try meds for fear of feeling worse with symptoms that have gone away or symptoms I haven't experienced yet. I can now keep up with housework, kids events and a few hours a week. My heart rates are typically 60s laying, 80s sitting relaxed, 100s standing. Few hr surges up to 130s. Haven't hit 150 in weeks Anyone not on meds or weaning off?

Merry Christmas dear friends.

I am in cardiac rehab. 3times a week. Recumbent bike started at 5 min a session to 9 min this week. I'm curious if there is anyone not on meds and improving on just lifestyle changes Yes! Please update everyone on your journeys

What region are you in for sun and warmth? It was 22 degrees for us. Hooray for good days!!!

I start my warm up by cycling backwards for two minutes with no resistance. I'd reach my target heart rate if I walked. Cool down the same

I was so foggy on tues. I took it slow. Double checked everything. Carrying you guys with me

Good days rock. This syndrome has made me do more living in the moment. I was an over scheduled overachiever. Not anymore

Full 8 hour day tomorrow. Hoping to not have the spike I had today at the store. 140! got home had soup and h2o and voila. Under 120 for spikes and resting 80s.

2 months

Thank you guys. Emotionally hard because I'm not my old self. But emotionally positive as I'm my new self.one who knows more about body than I ever wanted to know. I was able to sit when I needed to...foggy/ heart rate only went up to 120s... While not ideal... Still better than 150+ Light morning. Only half a day. doc in afternoon with a script for florinef and another bb. Sigh. Still not excited about trying meds. I've seen so much progress without them.

I hope everyone who recovers keeps in touch. It seems vital for our syndrome and our future. I'm better than October, med free at the moment. But realize how quickly things change. This helped me personally as im a planner/ organizer... Now I do a bit more living in the moment.

After being able to drive and a few local excursions... I'm on the schedule tues/thurs at work, so they can evaluate my abilities. Not sure what to expect. I've packed my bag...water, Chapstick, power aid zero, ramen. Forgetting anything?Good vibes and/or prayers please.