POTS is

Just a place to process daily challenges living with POTS

[POTS is @POTS_is]

Anyone have any recommendations for MCAS treatment? I’m currently using oral cromolyn sodium and it does help with seasonal and food allergies. But I’ve developed a reaction to heat and excessive talking and I would like to be able to work and go outside.

[POTS is @POTS_is]

I see commercials for wellness centers claiming to treat brain fog and fatigue. Makes me wonder if all these years the clinics have been trying to treat chronic illnesses the patients didn’t know they had.

[POTS is @POTS_is]

@ThePOTSPostman PEM hits the day after for me. It’s unable to get out of bed, lift arms, think, make decisions, muscle aches. It can last 1-3 days for me.

[POTS is @POTS_is]

@DiaryofaSickGrl These are yummy in coffee! I sincerely apologize if there is an ingredient you can’t have. I know the frustration of food/beverage suggestions when it’s something you can’t have.

[POTS is @POTS_is]

@DiaryofaSickGrl Me trying to dress for summer and POTS

[POTS is @POTS_is]

@DiaryofaSickGrl I had been at the hospital 30 min when I had a MCAS reaction to the linens. This was the beginning of labor and delivery. It was a long week in the hospital

[POTS is @POTS_is]

What toothpaste does everyone use? Specifically if you have EDS

[MastCellAction @MastCellAction]

Fragrance can be a big challenge for people with MCAS. Particles from scented products can transfer from one person’s clothes to another and be taken back to the homes of people with MCAS and they can continue to react from them.

[POTS is @POTS_is]

For those who find IVs painful and end up with blown veins, I recommend requesting a pic line instead.

[POTS is @POTS_is]

@gospacecraft I have a HeartMath. I find it helpful to decrease my heart rate but then my heartbeat becomes more prominent and uncomfortable. The way it trains you is helpful in stressful situations

[POTS is @POTS_is]

@NeleHelena @DiaryofaSickGrl As a psychotherapist, my go to advice is distraction, distraction, distraction. Screw meditating through the pain. Do whatever it takes to get your mind off of it. You can activate the calm nervous system by using your vocal cords or listening to music with words.

[POTS is @POTS_is]

@PatsKam Not in my experience. I’m also from a very hospitable area of the US so I’m uncomfortable in most European countries. I need smiles and pleasantries.

[POTS is @POTS_is]

@ThePOTSPostman People in Oklahoma think we have the worst roads. They’ve never been to Illinois or New York

[POTS is @POTS_is]

@ThePOTSPostman I feel this

[POTS is @POTS_is]

@DiaryofaSickGrl For me…I know I have POTS when putting on compression socks is practically orgasmic

[POTS is @POTS_is]

@punkassafrass It is 😭

[POTS is @POTS_is]

Having MCAS is like playing Russian roulette with everything you eat and drink.

[POTS is @POTS_is]

@DiaryofaSickGrl I’m real

[POTS is @POTS_is]

@BaileyzZZs I’m glad there is someone in your life to help maintain balance but sometimes it’s nice to do a task and feel capable.

[POTS is @POTS_is]

Today, I told a colleague and friend that my physical health goal was to be able to grocery shop in the store without nearly passing out, having to lie down in the floor or having a panic attack when I go home. She said that was sad and the definition of disability. I agree.