Bigskyfam

What helped? Any tips? Experiences? I'm on the books for dec to rule out arythmia and confirm my tachy is plain ol sinus tachycardia. Thanks guys. First procedure since having pots besides the TTT.

I'm wearing a holter monitor at the moment... Saturday ... Urge to urinate and racing heart etc... Cardio called this am 167. Sinus tachy. Was sitting in wheelchair whole time other than in bathroom. I did wheel myself into bathroom. Slug the rest of the day.

i love being able to use search aspect on dinet. User friendly!

Hi guys! Support beyond belief!

So here we are.. 3 years deep into dysautonomia... Found some eds overlap, some mast cell overlap and vitamin deficiencies, anemia and volume correction. The original thought by my original pcp was that a viral illness started the pots flare, given the fact that I had GI issues. They said I'd recover after a few years, well here we are are 3 years later... October ...historically my worst month... Weather? Gravitational pull? Who knows? I just got over a really bad GI virus that swept thru my home and family. I'm feeling horrible.

This leads me to my question... 

Does our time start over? If we contract the flu, have a surgery or add new diagnosis ,should we expect to have dysautonomia longer with "recovery" pushed further out. 

I'm contemplating an EP study, so this is heavy on my mind. They believe there may be atrial flutter. I'm a concrete kind of gal... If you see it, let's see if we can fix it... But if it's only sinus tachy. Shouldn't we leave well enough alone since dysautonomia is still being researched.

anyway, I hope you are doing ok into the season change and as always I enjoy reading your comments, posts and dialogue on this crazy little thing called POTS.

all the best.

3 yrs for me diagnosed, never fully bounced back after third preg. 9 yrs ago. Very subtle pots symptoms my whole life.

I worked in med field always got mine... Day after my flu shot in 2013... I had my first pots crash. I never did well after the flu shot but never had the flu. Fast forward two years with new allergy type reactions( mast cell) allergy test revealed allergy to egg ... So no vaccine for this girl. I think this was addressed in a newsletter last year 

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

idk

Samantha S.

Tin Can

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herbsolutionsbynature

Emma

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Angelhelp

sammie223

MonkeyBug

Kelleyhome 

 Sbaldrica

TBJ

Becky82

Red246

Although I've only been here for two years, I've learned a lot, not only about my condition but of the determination, caring and knowledgable nature of this community. Support beyond belief!

This forum serves folks from around the world in different time zones. It's great knowing I'm not the only one awake when my family is sleeping and I can't. I'm sure by evening you will see quite a few comments under this post with people saying hello. 

In the meantime if you have any questions let us know. Visit our DINET page and Facebook page as well.

Bigskyfam 

Glad you found help. I ended up going to WA for care. A doc who wasn't a cardiologist was my best bet. Everyone is different.

Sorry for the delay!

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Dory2016

Sherri

Jessica

Rajiv

Brutesky1

Zebro

Decaf sugar free chai when my HR is sluggish. I do consume chocolate. Soda and coffee free since 2013

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

I have EDS pots mcas

my stepdaughter has lupus. First flare at age 16. She had subtle signs... Random facial rash, joint swelling, fatigue. She had adhd and was always on the go. I finally convinced her to go to doc and begged for an ana test. It was positive. That was step one.  She moved in with her mom for months with no follow up care.months later her kidneys shut down and she was lifeflighted to childrens hosp. She had chemo and many meds. She is stable at the moment. This is not to scare you but lupus is serious. I wish you guys all the best. Seattle childrens treated her and were fabulous!

Ditto to Katybug! 

I get this after pt and sometimes after eating or if my bladder gets too full. Which isn't fun when you are going on about your day then boom. I think any little thing can make our bodies overreact.  How are you feeling now?

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Agreed with K! Get it checked out.

here lately Mine has dropped fast and significant. Ive been doing pt for a few weeks and been moving more. Maybe body is trying to readjust. 

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone!

Exactly. I wish docs and folks could wrap their head around autonomic dysfunction. I saw cardio few months back. Practically perfect vitals. Then ended up in er in the evening. Even when my vitals are perfect I can be symptomatic. Remember the autonomic system doesn't just control BP and HR.

There are a few other docs who treat pots in your area. I live a few states over and travel there once-twice a year. I'm very sorry you had this episode. Hang in there. I've had pots for 3 years now and it looks like it's here to stay in my case. I didn't tolerate betablockers well. Currently on no meds. Iv fluids worked wonders at first... Now not so much :/

My resting hr changes. While not as accurate as chest strap I got mine for sleep and activity. HR was a bonus. I find it does catch a few highs and lows and is accurate when laying or sitting... When really active it "sticks" and isn't as accurate as a chest strap. But overall....I can easily gauge my HR based on symptoms now. I have caught tachy when sleeping. Send me a pm if you want to be Fitbit friends 

Guys and gals... I have to say how incredibly helpful this community has been to me. Today as I was reading the spring newsletter I read the question and answer section and was giddy like a game show contestant yelling good answer good answer to you guys' great questions. I love the commentaries and research links as well. This was so timely for me as I get ready ready for my annual specialist road trip. Where I can't think of anything on the way or at my appt but afterwards I feel disappointed as my mind flows with ideas and questions. I'm sure y'all know the feeling. So help me out with car travel tips! I remember my route and have mapped out bathroom breaks... Any other advise, tips, etc???

Hi thanks for checking in!

overall feeling the same. Saw geneticist who was fairly helpful. Starting pt and trying to get to specialist end of July. Heat is coming, so I'm doing more indoor activities and late nights outside. Haven't had a bad episode since moms day... With the exception of my daughters highschool grad party. One word? Staircase. Ugh. I used to take stairs all the time. Now I loathe them.