What NOT to do if you have POTS!

[Sushi]

Which means I did it!

I thought it would be interesting to share some of the things that we have attempted to do with POTS and regretted. In this case it was washing my car with a bucket and a sponge. It sounded reasonable as we are in a drought and are very conscious of water use.

My thinking: My car is very dirty and a car wash wastes an awful lot of water--so why not do it myself?

The reality: After lifting the first bucket of water up to clean the top of the car I felt like I was going to pass out.

Sensible response: STOP!

Actual response: Damn it, I'm going to do this!

Result: near collapse and rest of the evening spent in rescue strategies.

So what have you tried that "didn't work out so well?"

 

[AdamS]

Can completely relate, i’ve had some awful POTS flare ups from trying to wash/clean my car, glad it’s not just me!

I hope you haven’t set yourself back too much and are feeling a bit better soon...stay horizontal for as long as possible now!!

 

[Sushi]

I hope you haven’t set yourself back too much and are feeling a bit better soon...stay horizontal for as long as possible now!!

It is a semi-crash day, but not too bad. Nice to hear that you did the same thing!

 

[Mel9]

It is a semi-crash day, but not too bad. Nice to hear that you did the same thing!

I’m glad your crash is not too bad. One of my many mistakes: ‘it’s a nice sunny day so I should hang up all my washing on the outside washline’

Holding my arms up in the air for ten minutes always results in some sort of crash.
Much more sensible to use the clothes horse or the clothes drier.

 

[Diwi9]

@Sushi - I'm so over this drought...the SF National Forest just closed too! Anyway, thanks for the post...I was just looking at my car yesterday and thinking it needs a good wash...will pass on that one as my POTS rocketed when I washed a horse the other day. I did pull a chair in close, so I could sit and take rests, which helped.

 

[ScottTriGuy]

Holding my arms up in the air for ten minutes always results in some sort of crash.

What is that about? It is one of my most disabling symptoms and the POTS clinic was useless.

I cannot find any research referencing this symptom...so if any body knows...

 

[Gingergrrl]

At present I am doing much better re: POTS but #1 trigger was bending down from standing to pick up something from floor and #2 was holding up my arms (especially above my head).

 

[Sushi]

Holding my arms up in the air for ten minutes always results in some sort of crash.

Exactly! It wasn't the washing of the car as such but lifting a bucket of water (actually used a watering can) above my head that got me.

my POTS rocketed when I washed a horse the other day.

A horse! I remember not to wash my horse (which is parked right next to my car)--don't I wish! Actually that would not be so strange in the part of the city I live in as, even though it is urban, it is New Mexico and horses, goats, sheep, peacocks--you name it--are in my neighborhood.

What is that about? It is one of my most disabling symptoms and the POTS clinic was useless.

I cannot find any research referencing this symptom...so if any body knows...

I've got an article that discusses it:
http://jnnp.bmj.com/content/74/suppl_3/iii31

Activation of arm muscles, especially when upright (when reaching upwards, washing dishes, ironing clothes, and pushing a lawnmower), may increase cerebral symptoms of orthostatic hypotension by a subclavian steal-like syndrome by further reducing vertebral and thus brain stem blood flow.

That is a bit opaque but it at least shows that some researcher has an explanation--even if we can't understand much of what he said.

 

[Mel9]

Exactly! It wasn't the washing of the car as such but lifting a bucket of water (actually used a watering can) above my head that got me.
A horse! I remember not to wash my horse (which is parked right next to my car)--don't I wish! Actually that would not be so strange in the part of the city I live in as, even though it is urban, it is New Mexico and horses, goats, sheep, peacocks--you name it--are in my neighborhood.
I've got an article that discusses it:
http://jnnp.bmj.com/content/74/suppl_3/iii31
That is a bit opaque but it at least shows that some researcher has an explanation--even if we can't understand much of what he said.

Subclavian steal-like(!!) good heavens!

 

[Revel]

my POTS rocketed when I washed a horse the other day.

I have secretly pondered the ethics of putting ours through the carwash . . .

 

[Iritu1021]

My greatest lesson would be to stay away from any specialists or online groups that claim they know what causes POTS or how to treat it. Chances are 10:1 you will leave much worse off than how you came in.

 

[Gingergrrl]

My greatest lesson would be to stay away from any specialists or online groups that claim they know what causes POTS or how to treat it. Chances are 10:1 you will leave much worse off than how you came in.

I agree with you @Iritu1021 and I found that many of the "standard" and "generic" treatments that are recommended by POTS specialists were dangerous for me. They are taught to tell patients to do "fluid loading" or even IV saline but these turned out to be contraindicated for me and led to third spacing, and even one episode of flash pulmonary edema, b/c I have MCAS in addition to POTS.

My MCAS doctor said that amongst all of his patients, I require the slowest infusion speed for IV infusions, and that I should NOT have any extra IV saline/fluid with the infusions, and that I should not do fluid loading. He said that drinking 6 to 8 cups of fluid per day is the best amount for me. I also did NOT do well with meds like Florinef or things that change your fluid ratio.

My main doctor ultimately figured out that I have "Autoimmune POTS" and the only treatments that fixed the underlying problem (in my case) were treatments for autoimmunity. For the first time since Jan 2013, I have no active symptoms of POTS (but I have no idea what happens when I stop both treatments)? I also still take Atenolol & Midodrine, which work well for me, but were not enough in and of themselves.