Bigskyfam

Tmi for employers/ coworkers I really felt if I shared info there would be more understanding. Instead it's getting old. Some Fam and friends feel the same way

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Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. fieldie Toomanyproblems 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 feel like I'm on the gameshow family feud... Good answer, good answer (clapping)

Intriguing. I was dx out of the blue. Stepdaughter has lupus and shows similar sx and my daughter shows similar symptoms. I really think this is the tip of the iceberg. I hope with research we will get more answers instead of head scratching. I too do better with fluids salt and mild exercise small amt of iv fluids as well. Meds mess me up.

Greetings to our newest DINET community members. My sincerest apologies if I've missed anyone. Brain fog is high today. essieluv hotsiepotsie sylvie33 Navyblue Msdeeza ATherese Jeng5158 Holly B Emilyrocks101 Dlmk Nita Snowballdali geden apitman9 hf1185 LAustin22 Lynda73 Virginia Cleomaru rjgebers ALECIA moonlightlady Emilymd Jan123 melbasset pond Ruth tampafd Dawn62 Oceana Jcdlmom louren Morphinicus StephanieF Michaels mom Dr. Rob. George 1949 Elena333. 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've been having surge like flares in afternoons for two months... No matter if I've had my fluids salt etc

Tilt table tests bring out the worst in us don't they? I've had symptoms now for at least 2 years Just recently I've developed a pattern. I cut my salt first thing in am when I was nauseated. 16 oz of water first then add the sodium from v8 or powerade zero. And toast. Feel better!!!

What a summer it's been. Typically I feel better in summer and this ones been different. I've been home all week from work and going to er and docs. Iv been flaring. Typically for an hour or two in the afternoons. Whether at home, work or out and about. I get nauseated, sweaty then tachy to about 150..then tremors... Of course the brain fog etc..do you guys see patterns with your flares?

I had an inconclusive test then a test I failed that was done correctly. My cardiologist did the test she had never done one nor the tech. 2 weeks later the experienced EP and his regular tech did mine. I failed within 5 min or so.thr didn't use meds. Monitored testing flat for 45 min, upright tilt... Can't remember degree. 5 min upright. Returned to supine and my heart rate plummeted from 160 to 60. Make sure the doc and tech are trained. My second one was done at no cost due to the first.

Greetings to our newest DINET community members. ekimap TravelSizedGirl mandilou2006 wish samip28 shurrun Theredhead michealdul 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.Right now where I am,it's Sunday afternoon. 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

Oct 5, 2013.. I was on a date with my hubby and developed lightheadedness, tachy,nausea, chest pain and fatigue. This was my initial pots crash. Since I've been dx with vit d deficiency, hypermobility. But have hx of anemia, epsteinbarr and surgeries. I was reading the above posts and couldn't help but shed a tear... Blink of an eye guys. What a journey to be on

Every person sees a rise in hr when changing position...ours happens to go higher fluctuate or stick for lack of better words

I don't attend dinner parties... But when out in a crowd or at work... I sip water, use something to cool myself, frequent trips to bathroom and normally iv fluids prior to. Countermanouvers like crossing legs while standing and moving my fingers and toes. I layer my clothes to help temp control.im not on meds. I agree... Before all these pots symptoms started I led a very social life. All I can think of at the moment. Hope you are able to go. Keep us posted.

Greetings to our newest DINET community members. SRDavis and mommy614 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.Right now where I am,it's Sunday afternoon. 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

Long time no post I started experiencing runs of svt at rest for past ten days. Dx in nov 2013 with pots. Tried bb no luck as it made my BP tank and had a horrible reaction. Anyone else with svt? Care to post your experiences or thoughts? Horizontally yours, bigskyfam

Greetings to our newest DINET community members. Nikki03 Brandy prov31mom zippy-watkins rst L.Kat Rebadawn jinny Kerry RunswithRats cmm2522 davenpik morobinson83 Addisons nikelz fultzta vonant LindaRose Angela M ChuckZ simonlomelie bloodangel82 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.Right now where I am,it's Sunday afternoon. 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

Any issues after eye exams? My first since being diagnosed. Didn't have my eyes dilated but he did the pressure test and looking at my optic nerve. Rough go since :/

Greetings to our newest DINET community members. jwc123 morrelld97 Dragon ****onearth oceaninmyshoes 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.Right now where I am,it's Sunday afternoon. 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

Sigh of relief and a direction

Greetings to our newest DINET community members. littlegem ktennantrn Mikey69 LaceyW Lehi33 svthomps Saluki JennyTipsforMe bettydcraig Mystery faithsangel1 JJennie mondio DolphinDreamer3 Nova kwiggins1158 Crystal34 Banannika Gettingcloser09 lj340 bigtrouble LynsayA85 cctalk Filosifur POTSGirlInOklahoma MsKraus coastlandscape Jenn123 michal2009b Phillippe37 PhillyPa Anwesyd Kfiremn 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.Right now where I am,it's Sunday afternoon. 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

Greetings to our newest DINET community members. GallantStrides Flynnigin Thewlms Icandyquilts Crown.jules 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.Right now where I am,it's Sunday afternoon. 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

Greetings to our newest DINET community members. Bartleah Jingles1987 Mlb827 Ambrosiap Gatorlily Thor26 Anastaisa99 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.Right now where I am,it's Sunday afternoon. 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

Thanks guys! Got fluids, chest discomfort subsided. Of course my body is trying to adjust to normal... So a little woozy and nauseated. Summer is here... So I guess upping the salt and fluids again and infusions weekly. For us summer lasts 8-10 weeks. Before you know it... Back to cold and raynouds. Vicious cycle

Add eds type 3 per rheum.