Bigskyfam

Have you ever tried your tea warm?

That's interesting I wonder if it is warm would it have the same effect... I have raynauds now since my pots dx

My pulse ox always surprises me. 100% on the elephant on chest days

Why is it that we have what I think of as our standard symptoms.... Then the most random symptoms that come and go? This afternoon I feel tight. My chest, veins and body in general. It's my first summer with pots and I've been drinking lots of water and staying in the shade and cool. Anyone else have random symptoms? If so what was the weirdest one and how did you deal with it?

Randomly. I've had it this week when im walking .its like when I stop I feel like I'm still in motion. Worse at work with flourecent lighting

I can't stand this. My cardiologist ofc does this no phone calls from doc and if her nurse calls me back it's days later. Unprofessional ! If I did that at the practice I work at I'd be reprimanded

We are there with you!

Wow guys thanks for your posts I know it's personal and I appreciate it. My doc is hesitant and I am to a point. I've had my dx since nov.. But have been reflecting that I've pots for a while. I had a d and c, mirena placed/ removed, 2 dental procedures with iv sedation in the past 2years. Prior to that 3 csections with years in between. I think it's connected. I'm trying to balance my gyn issue/ pots... They are neck and neck right now

Yay. I need a good doc. My cardiologist here isn't as helpful as I'd hoped. I need a go to person to help me and my docs here. I live about a 12 hr drive away. Super nervous about the drive. I hope she answers questions. Mine now just says good question and move along and callbacks? Nope. Or days later after my flare has passed

Sorry to hear ...I know I'm already stressing for my specialist appt. ...12 hr car ride away . I'm surprised at the fact that they discharged you. I could see if they rescheduled you for first available

Blue. Interesting! Yet so simple which came first anxiety or pots. I started seeing a counselor before my pots initial flare. I think I've had pots for a while and those little "anxiety" flares were actually the syndrome making a peek into my life. I remember my counselor saying wow you are aware of your stressors and surroundings and are level headed. Which makes me believe it's pots symptom.

Bed bound to housebound to work on some days. I think what helped me besides my kids was exercise recumbent bike in cardio rehab. I have a bike at the house now. The first time I got on it was for 5 min and my heart rate went to 160. I had a buddy who took me to gym for cardiac rehab that helped on the days that I said I can't.im not on meds just a few supplements. I don't feel invincible. I am worried that I can slip back at any moment for any reason. My bed being lifted help tremendously. Headaches are only sporadic as opposed to daily and deliberating. V8, gluten free for most part helped with gi sx and fogginess. I still get surges and I have to stop what I'm doing and go rest.gotta go. Dizzy.Post more later.

Appt mid June. No autonomic clinic there

There's where I'm at. Thanks for your in depth reply. I meet with a pots doc mid June and we'll chat. I am doing better than oct. Was bed bound then housebound. Now out and about limited on good days. Don't want to go down the slippery slope

I'm on the waiting list... Since January. I missed a call from them yesterday with no message. Here's hoping it's good news, calling back today!

I'm on the waiting list... Just curious if anyone has gone to see dr Arden in Portland and if they have an autonomic clinic.

Remember the Atari game pitfall? I feel like I'm swinging on the rope over the "pits". Those pits or gaps seem to push me back a few feet. I get what your saying and I'm so happy you are going to mayo. Eager to read your posts with experience and knowledge learned

Appt went ok turned out to be a phone consult as my doc was on call. Understandable. I conveyed to her my thoughts. I'm glad she sees me as a pots patient even though not her specialty. She will be looking into pros and cons of surgery/ anesthesia and we will meet again end of month. I told her I felt kinda put off from other specialties as I've gone in paid my money and not gain too much. I know they aren't pots specialist, but my goodness... Can they research or collaborate with other docs? When do you know it's time to find a new doc?

Understand . My hubby feels like I'm selective about what I do...like not going to fam members house or going to park instead or grocery store vs Home Depot(his fav place to go) I rest up to go to work bc we need the money and I need insurance, instead of wanting to spend as much time with the family and Fam life. My hubby is a go go go guy. I was an in between kinda gal. I Enjoyed the busy time and the down time. Hard to adjust

Laying down quiet h2o and time does the trick for me most of the time

Thx for sharing. Not hijacking at all. Collaboration! I'll be happy to get the answer to two questions. I haven't had anesthesia since my dx. However I had a d and c last year in jan and iv sedation for dental work. Good question . My doc did wonder about sedation and anesthesia.

Did you keep your ovaries? It seems the hormone component is huge.

Would anyone like to weigh in on here or pm personal experience of your hysterectomy? My doc has recommended ocp trial until ablation or hyst. I have menorrhagia. She wants to leave the ball in my court

Aeris... Working in the medical field is challenging I think. I think my coworkers see me as a coworker not a patient. That is frustrating. My family sees my symptoms. I've always been a little on the non adventurous side. I think it was my body's way of saying something's not right. But stopped me cold last October because I wouldn't have listened. Work has been such a challenge bc I'm not hitting the marks I should be physically and mentally. No one is reaching out to say how is this going...

Magnesium Epsom salt foot soaks as to leave my poor tummy alone. Looking for creams lotions to have same effect