Bigskyfam

I get ebbs and flows. I've had ebv, pregnancies and surgeries. Still searching for answers. Best I can come up with is eds3, mast cell and perfect storm...vaccine, surgery, stress, food reaction, hormones and virus in a short amount of time. 

Ive found winter months are worse and dead of summer of course.

if you've seen a cardiologist and are cleared, find a fam practice doc that has interest in you and your condition. I've found they think more outside the box. D.O docs I've had luck with.

all the best.

I had one episode caught on 30 day.. 11 beats long. Ep said no worries if self resolves and is occasional. I've cut out chocolate and Haven't Felt it since.

Crockpot, meal prep with hubby, hubby grocery shops, pub height chair with a back and a fan or open window

Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia  and provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. My sincerest apologies if I've missed anyone.

JH123
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Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia  and provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. My sincerest apologies if I've missed anyone.

BuffRockChick
Pots1990
Frenzzzie
Nan
Shw
ClaraM
Betdeb
EES25
Teresa
Ginny52
pixiegram
Shona
Jacque
Megants
Sunshine92
Ajay
kptosh

My episodes while driving got increasing worse. I haven't driven in almost two years. My hubby and kids drive me. For me... I knew it was time to stop. Hoping to drive again. We do not have mass transit or public transit or even uber... so it's hard.

Welcome new members! I found this community years ago. DINET helped me find a provider, gave updated information on dysautonomia and has provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns.

Yum Yum
GMDI
Retrogurl7
Butter cup
Karen B.
CWright
David
Bama Kim
KDUB
elfinko
Saw2112
Stephanie
Flight272
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Kam
BuddyLove
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Minkyboodle

I've stopped driving over almost 2 years ago. It's too risky I feel given the fine one minute not the next and inability to stop safely to recoup

Flip flops when I lay down quickly or turn over while laying happen to me. Worse with hormonal cycle. I've cut caffeine and most recently chocolate. Helped immensely. Also a quick visit to cardio to rule out anything out of my new potsy norm.

I don't have one but carry benedryl on me at all times. Wish I had one. I had the allergy rast testing as opposed to skin... I've seen a few folks spiral after the skin testing... Found an allergy to egg. So food avoidance and no flu shot. My last flu shot might have been the straw that broke the camels back. It was the year of my initial pots flare. Beta blocker made me worse.

I had extractions before pots and just recently... Both with iv sedation, no epi in the local anesthetic 

I met with oral surgeon before. We took things slow and made sure I was well hydrated. She gave me a half bag of normal saline during.

I did well. Bled a bit longer than usual. Liquid diet. 

I don't have asthma... But I do have allergic reactions. I reacted to the antibiotic, so it was discontinued. 

Hope all goes well, let us know how it went.

Mirena iud and hormones weren't good for this potsy. Here's hoping you find what's right for you!

Sorry to hear. My hormones are a mess as I'm nearly 40. lack of cycle x 3 mos is my latest phenomenon.I had gestational dm with my last pregnancy and have hypo and hyperglycemia episodes but no labs consistent for diagnosis. I am on a low carb high protein diet...that's helped a bit. I don't tolerate progesterone and ocp causes headaches and nausea. So I'm in limbo too. Keep us posted

Yay for still standing! I have not had experiences with ivig, but I can't wait to see what others have to say.

Yes! I feel cold constantly then blazing hot if I layer up. I have raynouds as well. It's cold here where I live... When I go out I put a light cotton scarf across my face to keep the cold out. My husband is a gem... He gets the car warm for me. Knitting and elec blanket have helped me this season.

Hang in there! Yes copies of your med tests and appointments is great... In the end hopefully you can reflect on how far you've come. Keep on top of things best you can. I find it's easier to send electronic msgs than phone messages through a nurse or office staff... If that is available. Stay hydrated, rest and be seen in the interim. Keep us posted. 

Welcome! I found this community years ago. DINET helped me find a provider, gave me  updated information on dysautonomia  and provided support beyond belief! Please do not hesitate to reach out to us for help, questions or concerns. We are glad you found us. 

Diane44
pamperedmom
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CathyR
c3363
pechius
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Mom K.
net
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SScott
Patty

My specialist which i found through dinet, said the arm bp cuff is her preferred. I also have a pulse ox sensor. Take a log of readings, activities and symptoms. This helped get me through to cardiology. At first, I was only aware about my heart rate til I realized at the cardio that my bp was low and even lower after trying a beta blocker. 

Hang in there

I normally have enough enough time to sit or lay before syncope

however I'd say I've had a dozen times that I've had sudden syncope.

what have the docs recommended for treatment?

Ah new Meds.... Who hasn't been there done that? Glad you are handling the speed bumps with the Midodrine. Keep us posted. 3 cheers for you!!!

Welcome!

1. Finding a good primary doc who thinks outside the box and can refer you to a specialist and is willing to communicate with specialist.

2. All speculation after 3 yrs, but I have eds. The year I had my initial pots flare, I had 3 surgeries and hormone trials and flu vaccine( found out I was allergic to eggs)

3. I did have success with cardiac rehab which got me back to work... Was unable to keep up both. Taking at least 2-3 l of h20 per day and cutting out allergy triggers. Salt increase when bp runs low and pacing myself. 

I got a Fitbit to measure steps and activity... I do like the hr feature accurate when laying/sleeping. I have a bp cuff and a pulse ox for flares as it is more accurate.

Welcome! What a breath of fresh air to hear about a positive experience with your cardiologist... This has you a step ahead of the game so to speak.

I've been dealing with severe dysautonomia now for over 3 years. My favorite quote at the moment.... Do the best you can, with what you have, where you are.

Welcome! This was the 1st info spot I came across for dysautonomia. 3 years strong...the folks here are here when I need them and hopefully the other way around.