Bigskyfam

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. WintersBreeze bethelle24 ASR21 pennypiper DottiFox Ex Lion Tamer Ashsmom Robstahlobstah Gonza ArtsyStacey cjm domestictech sali VazKerges Shoyceanyis21 Knitter65 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

Same symptoms here...

Caught on 30 day monitor. I've heard same thing. EP here says he doesn't know much about pots but knows ablation will fix 95% of folks with svt. He recommends EP study then go from there. I'm discussing this with my new pots specialist. Then I'll decide. He insists it's not life threatening. But the flipflops and presyncope episodes aren't quite fun. Yes I wonder the same thing... Any relation between svt and pots?

I've been experience if the same for past two months. A lot of head scratching going on.ive had pots diagnosis for two years. No meds. I have these roller coasters. Either high BPand hr Low BP and high hr or my new not so fun high BP low hr. Makes it difficult to salt/ fluid/ etc. new specialist mid month I'll let ya know their thoughts. Is it due to dysautonmia or something new a brewing? The world may never know. Hang in there. Er says thumbs up and urgent care said same thing because by the time I go in... Vitals are fine... And I'm exhausted

Two weeks worth. My greeting was late but hopefully just as warm. Welcome again.

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. intothemystic lellis Elscarl Hilary Bev66 PuploverKV L3NA jazmintl PaminPA astearns potsmomfmy Gingergrrl TheKnowing LaurenC29 stillhoping Although I've only been here for about 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

Dr satish raj is now in Calgary. He's the best of the best. I'm only 5 hours away. In the u.s, so I can't see him. Keep journaling researching and plugging along.

8 seconds of 195 bpm... I've read ablation as a no go for pots. Glad to know my monitor is catching something... I've been awoken to 150 bpm and had an episode sitting at work 80 to 150... 150 for 15 min. Brought down by blowing through a straw and ice packs. Got iv fluids afterwards too. I'm glad to hear of your success thusfar minus the bb

Started having episode two months ago of tachy and syncope every few days not following my normal pots symptoms... 30 day holter monitor caught svt. Recommends EP study. Anyone who can weigh in on svt, ablation etc????

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. ChristinaS sue.zee.q pokute tessal8 lungaloo mitoscottie riverspirit emma261 Ailbhe mom1618 folkert Llp Kimmy89 johanna77 JackieC KATSMOM chapmama Roxy zinnia Clash brett3380 MaryAnn askwyman lbessen SaraMC ScramblerGuy Although I've only been here for about 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

I remember reading a dr b slide on sexuality and pots... Seemed lots of no brainers... Make sure you are hydrated, have meds if needed, no shower before/ after don't overdue but overall a good thing for our bodies. That being said it has been rough to make adjustments. Horizontal. It does throw my system into a frenzy however gyn is thinking it may be due to a retroverted uterus which could aggrevate my nervous system.

Great thoughts guys! Thank you. I have a new EP in town visit next week and a neuro specialist in oct if I can make it. Hoping to keep cardio local. Just wish they'd all communicate with each other.

I found an article a while back that talked about October slide... I love in a colder climate so it'd make sense to start my decline in sept. I originally flared 2 yrs ago October and last oct took a few steps back

It's fall y'all. I always seem to backpedal.

Trying to get my dream team together... Switching it up a bit... I've only seen Fam prac, cardio on a regular basis and one time consults with neuro and rheum. Maybe GI one of these days. One can dream....I do like D.O docs!!! Getting pretty fond of NPs and PAs

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. MamaBear18 kellygirl Celerybandit Jason_X nns123456 krystalsmmns Although I've only been here for about 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

I do. Sleep feels so good one way and not the other.i typically do best on a schedule

Thanks guys... I've often wondered if we have stretchy veins blood pooling does it put us in a higher category for clots. One of the many reasons I'm hesitant about birth control pills for gyn purpose I'm over 35. I had an us once when I had leg pain in the shower that was normal but none that correlate with these episodes. But yes ice cold extremity. The np I saw yesterday asked me about injury surgery etc which made me think of rsd...no breaks or trauma per se but gyn surgery with a retroverted uterus close to all those nerves.hmmmmm

Nope it's never the same foot or hand or side of body flares for a few hours

Anyone experience 1 visably normal but cold hand or foot and the other swollen hit and painful I have this every few days. Part of dysautonomia, any insight or differential diagnosis for it? Cardio visit today... They were quite intrigued

I've been flaring every few days. No rhyme nor reason. Iv fluids. No meds just rest and salt Keeping a journal... With mine here lately it's huge HR/BP swings. One minute fine next minute to the floor with my feet up. I have a 30 day holter on again.

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. 25going on 80 0224 cal12 MariaT gmarch1723 sherrence Anonrhiannon fitnesskelly ledouxplus2 ERose11 DCPOTSMom Jeed Lgoss1026 iceskater Monicaray nessaangels34 justkeepswimming scotsgirl mysticnight bsbell jolanda lhost1008 countrypauls Helenb katecolfax Although I've only been here for 18 months, 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

I tanked day two of bb Loss of vision right eye for few hours slurred speech No meds at moment

I started with pots dx, pots doeciskist suggested eds went to Fam practice and they ran panel all negative however no test for type 3, so off to rheum,hypermobile. Not interested in seeing me for anything but my raynouds. I feel it's important because it gives a cause for my pots and I'd like pt, surgeons, dentists and the like to know because it could effect my health in other ways. Small town so I may venture to see a geneticist

Anyone see the dinet doc in everett? Feedback?