Bigskyfam

Yesterday I had my first ambulance ride. I did yoga for first time and one of the poses created chest discomfort, then tremors then presyncope... So after resting on side and hydrating I was going from sitting to standing and felt the most excruciating chest pain to date. Labs done, EKG and chest xray... All ok per doc... Gave me toradol and no saline. Getting that this morning on my own at infusion. Interesting tidbit... My heart rate was normal. Low for me. But BP was 150/100 and wouldn't budge. Anyone else experience this lovely experience? Thanks guys. Been a rough 2015 so far

Greetings to our newest DINET community members.

Percythetrain

Vermonter

Ronnie2016

Blsbaddays

Alike

Invisablejungle

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.

LCLC

Klk

LindaG

P8d

FaithAlways

BensWife

Massachusetts

Valerielillian

Finbonesgirl

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 morning. 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 had my bed down to regular height for 6 weeks now... Still prop my pillows

I have heart rate tracker and sodium counter

I get nauseated when I go to take the elevator and it's broken and I have to take the stairs at work. Old building. Ugh

Greetings to our newest DINET community members.

Grunak

Smarti54

Profmeow

Melliemoo

Gordon73

Ginger8888

Stronger

Mufasa

m@t

Vlaverg

Lex

Mariewl28

Kiwifruit

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 morning. 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.

Our dynamic duo...

Hopeful82

Kitkat33

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 morning. 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.

Bigskyfam

Further dilation on repeat 6 month echo :/

Rheumatology consult end of June

Greetings to our newest DINET community members.

We welcome the following trio!

TabithaD

new2net98

Plaster89

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.

Bigskyfam

Congrats, hydrate, rest well and eat well before, compression gear as tolerated if you use it.My doc says use countermanouvers to help you get by. One thing I benefit from at work is a small fan. Layer clothing for easy climate control and no heels I'm jealous I've always wanted to work in a library

Same. I also get shortness of breath when I raise them. When I dry my hair, prime example

It's hard to find the balance. I am back to work. 4days a week in a new sit down position. My day is a day of up and downs and evals. Eval my symptoms. What do I need? More fluids? Do I need to get up and stretch or empty my bladder? I'm hot take off my sweater. I'm cold throw on the heater. Then there are times like last week. Where I had to just say I need to go home and lay down and press my reset button. Hormones to blame for that day.I appear fine. My coworkers know me from before my dysautonomia days and it's hard for them to see me differently. I've gotten better with stating how I'm feeling without giving a playbyplay. I hope you find balance and understanding. Feel better

Greetings to our newest DINET community members.

Goldfish482

NikkiP467

Lady

Birdgirl42

Kay Lynn

Kagipson2013

Frozen

ALR68

Rockenmamaof5

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. Glad you found us.

Bigskyfam

Hi guys.soft place to land,regroup and heal.

I think our glucose levels rise and drop suddenly... High protein but balance with carbs... Breathe! I understand. I'm a little anxious today. Gotta drive to get kids from school. Hubby is out of town and so is papa. Augh!

There is a dx code now in the US

Progress!

I had no bloating at sea level a few weeks ago. I dropped literally 4 pounds of water weight. Ugh. It's back with a vengeance

Yes or a long lengthy list of our symptoms

ICD 10... Oct 1.. It's an I code cant remember rest. Coder at my work shared it with me

I just found out that POTS will have a diagnosis code end of year. I think this is huge. No more coding by symptoms. I think this is a huge step in recognizing our illness

Hi guys!!! Here for you

I elevated the head of my bed early on for over a year. What I noticed was that the headaches and heaviness in my head decreased. I traveled for a week and was without my tilted bed. I took the block away. Feel okay. Better in a way with decrease in swelling of my hands/feet. Still love my propped up pillows. What is everyone else doing or tried?

29!!! I remember when I felt like the only one. Great place to learn, grow and regroup. Thanks for being a part of something positive for pots folks

I came from az. Dry and about the same altitude. But warmer.no real symptoms there. Moved north to mt and my oh my. What a diff. I know look forward to my doc appts on the west coast and sea level