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Eraena

Fludrocortisone

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I've been taking fludrocortisone for 4 months. I got my tachycardia almost fully under control. I only get tachy when I get too hot, or eat a large meal. But, other symptoms still persists. (e.g. constant lightheadedness, low BP, blood pooling.) Even though I'm not tachy when standing, I still feel like "waves" are crashing upon me. It's hard to explain the lightheadedness. It's like standing up too fast and feel lightheaded, but that feeling is always there unless I'm lying down.

I'm glad the med is controlling the HR, but I was hoping for other symptoms to have some alleviation.

I know I keep talking about the lightheadedness, but it's literally there every single second. It's hard to ignore.

Has anyone else experienced this?

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Hi Eraena,

I too have constant lightheadedness which is only alleviated by lying down. It is by far my worst symptom & I HATE it. I have just been diagnosed with a CSF leak & am waiting for treatment, but have had it for over 5 years now. This is rare & probably not relevant to you (unless you also have other features such as severe orthostatic headaches, sudden onset possibly following a minor trauma of some kind, connective tissue disorder etc) but I just wanted to let you know that you are certainly not alone in dealing with this symptom. 

My HR and BP are normal without medication; my diastolic BP rises excessively on standing however remains in the normal range. I don't have any evidence of blood pooling.

I agree it is thoroughly miserable, & I would much rather have any amount of pain or other disability than living permanently presyncopal as it is so limiting and uncomfortable, & unlike pretty much any other symptom there is no effective medication for it. 

Do you do any form of recumbent exercise? Pedalling does seem to help me just a tiny bit. Also spraying my face with cool water from a little spray bottle. 

Stay strong, & know you are not alone.

B xxx

 

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@bombsh3ll I’m sorry for what you’re going through. I agree with living with anything else besides this. I wish it was a quick and easy fix. 

My diastolic does that very similarly, but probably not too excessive. (e.g. Sitting BP 94/51 - Standing BP 97/79.) Your heart fills up with blood during diastole. Maybe it’s raising higher to try to get blood flowing to places, more specifically, the heart and brain. I’m not a specialist by all means, but that’s what I think what’s happening.

I got exercise pedals this year in March. Exercise overall hasn’t been helping, but I know overall, exercise is good. 

Thank you for your kind words. I’m glad I’m not alone in all of this, and have people I can talk to.

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3 hours ago, Eraena said:

Sitting BP 94/51 - Standing BP 97/79

Your blood pressure is low - it is possible that addressing that may make a difference for you. 

Mine is more difficult to address as my vitals are normal, & manipulating them pharmacologically is neither helpful nor indicated.

Have you ever tried medication to raise your BP? Do you have a good doctor?

B xxx

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@bombsh3ll I'm on fludrocortisone. It's suppose to help me retain water and salt to increase blood volume. My BP now is 108/62. I feel a lot better. I generally feel worse when it's between 80/40's and 90/50's. It's been chronically low since last year, and that's when all the symptoms started. Thankfully, I rarely see my systolic below 80.

I've going to the dysautonomia clinic in Birmingham, AL. Dr. Paula Moore is very nice, and only focusing on the symptoms for supportive treatment.

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Pulse pressure matters.

It's what makes our blood actually circulate.

Pulse pressure is the  difference between the pumping (systolic) blood pressure and the resting (diastolic) blood pressure. 

sBP-dBP=PP

For 97/79, that's 97-79=18

Normal resting pulse pressure is about 30 to 50.  Under 30 is considered narrow*, and under 25, extremely narrow.  A PP of 18 is extremely narrow even for a PoTSie. 

I'm supposed to get a lift to hospital if mine stays below 20 despite electrolytes, water, lying down in a cool room. Usually, that will do it for me.

Because I get really stupid when my blood is all trying to go to my toes, I've tried to program myself to rest early and often (really boosts my productivity), and to sit or lie down before I fall: Better down than out. 

 

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13 hours ago, GinnyIckle said:

Because I get really stupid when my blood is all trying to go to my toes, I've tried to program myself to rest early and often (really boosts my productivity), and to sit or lie down before I fall: Better down than out. 

Diddo. I too get very giddy and stupid when my PP is low, my husband always tells me to lie down when this happens b/c he can tell by looking at me and by the blank stare I get on my face. Resting does help but often it gets so bad that it puts me in bed for the rest of the day. IV fluids ( I have a port ) rectify it immediately. 

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