Embarrassed by Pots

[LadyBug45]

Is anyone embarrassed/worried when going out in public alone. When I used to go to the grocery and I start having palpitations I had to leave right away or I’ll start to panic. I sometimes worry about passing out.

[MikeO]

23 minutes ago, LadyBug45 said:

Is anyone embarrassed/worried when going out in public alone. When I used to go to the grocery and I start having palpitations I had to leave right away or I’ll start to panic. I sometimes worry about passing out.

My answer is yes. While i do refrain from explaining myself if someone asks. I know longer care what other folks think for the most part. First thing is to take care of yourself and not feel bad about it.

[Pistol]

15 hours ago, MikeO said:

My answer is yes. While i do refrain from explaining myself if someone asks. I know longer care what other folks think for the most part. First thing is to take care of yourself and not feel bad about it.

Well said, Mike! @LadyBug45 I used to pass out all the time, everywhere. I avoided going out in public for a while, once I became disabled. But with time, exercise and many medication trials I became more stable and also braver. Today I can take short walks, and with my seated walker I can go to stores and doctors offices. Now I no longer become panicked, since I haven't passed out in a long time. If people ask why I sit down in the middle of an aisle I just say that I have a bad heart and need to catch my breath. It's much easier than trying to explain the autonomic nervous system ......

[MomtoGiuliana]

I think one phenomena with POTS can be sensitivity to certain environments and or a change in environment.  Over the years I have seen many patients on this forum comment on worsening symptoms in stores--maybe it's the lighting or the crowds that is over stimulating?  

Do you bring water with you on these trips?  For me I find if I am keeping myself very well hydrated I am less likely to develop a sudden worsening of symptoms.  Coconut water typically works well for me, with a pinch of salt added.

I know when I am in a flare and symptoms more severe having to walk across a parking lot (especially if it's hot) can worsen my symptoms by the time I have entered a store.  Maybe trying to shop in the evenings and or less crowded times can be a solution too.

[RubywPOTS]

I have a service dog and she really helps! I tend not to faint but I dose in and out of consciousness and it is very jarring to wake up disoriented with brain fog. She is medical alert to avoid sudden fainting sessions, but mostly she is super grounding when I wake up and the same fur, smile, and pressure on my legs is there every time. 

It can definitely be embarrassing though. I get that and it is really hard sometimes. It helps to find friends who understand. My friends jokingly know me as the "girl who always has salt" and when I grab the wall or say I need to sit down or need water, they are supportive and my close friends know what to do.

When I am alone and in an episode, I tend not to worry about what people think though. It's hard, but you have to do what your body needs. 

[edriscoll]

@LadyBug45 I understand your feelings.  When I was newly ill, I was afraid to go places alone because I had terrible pre-syncope that would drop me on the ground, and I would lose all control of my body, unable to speak, sweating, etc., and if I had a full bladder when it happened - look out!  Nothing more embarrassing than that!  But I noticed that it was always worse when I was in public, and I believe now that if I started to feel my HR rise, instead of stopping and catching my breath and my bearings, I would start to panic in anticipation of what might happen.  So that increased my HR even more and made my situation worse.   

All great suggestions from everybody here.  In addition to carrying water, I also keep a cooling towel or cold cloth with me, especially in hot weather.  If I can catch it early, the cloth around the back of my neck (colder the better) can sometimes ease me back to balance.  It's like auto-correct for my ANS.  I've even poured some of my water on the back of my neck in a pinch.  

Asking for help may also help.  If you can have someone go with you on days when you don't feel well, that would be better than avoiding going out in public.  Also, most shops have scooters you can use there.  That may help you avoid episodes when you shop.  

My telling you not to be embarrassed won't help.  But I will tell you you're not alone.  I hope that helps a little.