Orthostatic Intolerance

[Deb]

Being relatively new to the POTS family (diagnosed about 5 mths ago), I'm still trying to figure out my own symptoms and what works, etc. After I was diagnosed, I was given a pair of 30-40 gradual support hose, and told to put them on before I get out of bed, wear them all day, everyday, and not take them off until I get into bed. I was also told to exercise my leg muscles, primarily the calfs so that the muscles could help constrict my veins better. These things are to help return the blood from my legs to my heart quicker so that my brain can get a little of it. That makes perfect sense. What I'm confused about is that I have never had the blood pooling in my legs, not even a little bit of swelling, ever.

Before I was diagnosed with POTS, I was told that I had orthostatic intolerance and standing tachycardia. The increased heart rate when I stood was making my heart send out messages that eventually made my blood pressure drop and I collapsed. (That is a very general explanation because I really don't remember the details; I was pretty sick when it was explained.) Within five weeks I went from an occasional spell to daily multiple spells.

So when I was diagnosed with POTS and told about vasoconstriction and blood pooling, etc, I just accepted it all and did what they told me to do. But now I'm thinking that I must have had the orthostatic intolerance because of low blood volume. Everytime I was seen by the ER or admitted to the hospital I was told I was dehydrated.

So, all of this is leading up to my questions, 1) has anyone else had orthostatic intolerence that was NOT do to blood pooling, and 2) has anyone else corrected their orthostatic intolerence by volume loading with extra electrolytes, especially sodium and the use of Florinef?

[Aprilmarie52]

Deb, I was diagnosed with POTS, too but I do not have any swelling in my legs or ankles. Also like you everytime that I go to the er they say that I am dehydrated and give me IV fluids. I eat a high salt diet, take .1mg of florinef a day (along with a potassium supplement) and drink at least a bottle of gatorade a day along with what ever else I drink. I steer pretty clear of caffine (I only have it a few times a month). Most of the time I feel pretty good. I am able to work full time and go to school full time, along with taking care of the house (no kids yet). The only time that I really feel bad is when I have really over done it. Like when I get to hot or to tired. Also stress is a trigger for me. When I have an episode I get really sick, make a couple of trips to the er for fluids and in ~2 months I am back to my old self again. I know that two months seems like a lot, but I have only had 3 episodes in 4 years. I dont feel great everyday,but I feel good enough to live my life. Somedays I even forget that I have POTS. I hope that this helped.

[denabob]

O.k I'm going to guess that you may have gotten that backwards about the tachycardia causing the low bp it's usually the other way around. When you're blood volume isn't high enough or you have blood pooling ( that doesn't always cause swelling- I swell sometimes but not always)Your heart thinks it needs to work harder to compensate for the blood loss. Please dont take that as an offense I'm not trying to correct you that's just how it was explained to me.We are all different though so I can't say for sure which way it is for you.

Dehydration is a common "side-effect" or symptom which ever you prefer to call it of POTS I consider it a trigger of other more disabling symptoms but I guess we dehydrate easier than most. High salt and water intake is VERY helpful!

I'm not sure the cause of my intolerance but I do load with electrolytes(mainly sodium) but florinef made me worse and caused weight gain.

Good Luck,

Deanna

[Sak]

OI caused by dysautonomia is incurable; even the root causes are shadowy.

I've experienced significant improvement with water, salt and diet changes; but I'm not cured, and can't be. I deal with dysautonomia on a daily basis still. I wake up dehydrated and dizzy, and take water and espresso to help. My ANS is a volatile animal; on different days, it demands a different level of control. There's a quote from someone's website--I don't remember whose--that says "You can't replace a dynamic system with a static one"; I know that's so true. When the ANS goes haywire, you can't simply take a medication to right it; the regulation of the body done by the ANS is constantly-changing, and you have to be aware of your own reactons to things and adjust your strategies hour by hour sometimes.