Blood Pooling in Legs

[Deb]

I don't understand why, but some days the pooling in my legs is MUCH worse than usual. Like today, a few minutes after I stand up I can feel the blood pooling and then my legs ache and I have pains all up and down them, and I quiver slightly. Then I get this headache behind my right eye. I understand the pooling and the pains, but I also have trouble breathing. It's like tiny spasms in my diaphram, and I feel like I can't quite catch my breath. It was worse today then it's been since I was dx with POTS. My blood pressure and heart rate are remaining pretty constant. I wear compression hose because if I didn't, I wouldn't be able to walk. I'm not on any medications right now except my allergy/asthma medications and Zoloft. I had been on midodrine and florinef but had to stop because of side effects.

I saw my cardiologist and my neurologist on Monday, and they didn't know what the cause of the breathing problem could be other than it is probably related to my asthma. But the inhaler doesn't relieve it so I'm a little skeptical about that. Plus, I've lost almost all of the hair on my arms, and the hair in my underarms and on my legs is very sparse and is growing very slowly. I only shave once a week now. Plus, my periods are weird. I start spotting days before the actually flow starts, and then I spot some a day or two after I've stopped.

Any ideas? Anyone else have any of these symptoms?

[purplefocus]

Deb,

I have the same problems also. Not only do I have the pooling when I am standing but when I am sitting also if my legs are not propped up. I have also noticed that I have to shave less often and I have areas on my legs that I have no hair. I also have the shortness of breath. I don't know why this is happening. I had a nerve test done on my legs but if I remember correctly my doctor said it didn't show anything, it may been because I couldn't tolerate it very long. Some days just simply talking too long on the phone I start to get short of breath. I just chalk it up to another POTS symptom.

Paige

[Deb]

Thanks Paige,

It scares me sometimes because it comes from out of the blue. I am VERY fortunate in that my good days far out-number my bad days. But when I have a bad day, or two or three in a row, it is SO bad that it just doesn't make sense.

[purplefocus]

Deb,

You are right, it doesn't make sense. I can feel great for about 3 days then wham it hits me and I am useless for about 2 to 3 days. I don't do anything different or take different medicine but my body certain behaves differently on about a every 3 day rate. I have noticed that when it is time for my period my symptoms do get worse. Have you experienced that?

Paige

[calypso]

I have the exact same breathing issue, plus I have an inability to take a deep breath even when I sit down ever since I started having POTS. Frankly, it *****. None of my doctors can put their finger on it either. One even suggested I was hyperventilating in response to the racing heartbeat, but the shortness of breath was actually my first POTS symptom. It was only when I took my pulse did I realize that is was like 130 just getting out of bed!

The only thing that helps me breathe better is exercise. After I exercise and stretch my chest muscles, I get a tiny bit better, but not much.

It's easy to take breathing for granted until it becomes challenging! Hang in there .

Amy

[ethansmom]

Shortness of breath was my first symptom too, and continues to bother me on occasion, usually in the mornings. Florinef has really helped with that- I recently tried to wean completely from it and the rapid heart rate and difficulty breathing were awful!! So I had to continue on a teeny tiny dose. Deb- I don't know what to say about the pooling, etc...since you have tried Midodrine AND Florinef- that helps a LOT!! But strangely enough, the people I've talked to who have the worst pooling seem to be the ones who don't react well to those particular medications. Are your legs well toned? My doctor is always on me about toning all of my leg muscles, which is supposed to be quite effective in preventing blood pooling. Even if you can't exercise, you can tone your legs doing floor exercises. I do that and 30 minutes of yoga every morning (in sickness or in health!!) and it has made me feel much better.

[Deb]

Sadly, I do exercise my legs ever since I was dx six mths ago. It just doesn't always help. I'm sure it does some of the time. The compression hose help A LOT. I couldn't live without them. As for being worse during my periods, that doesn't seem to be a problem.

I did very well on the midodrine and florinef for the six mths I was on them, but my BP, which is usually low, has been way up for me. I had to stop the midodrine completely, and then I went down to half of a florinef (I think it's .05) but the chest pressure and BP didn't go away. My BP is still around 158/95. The chest pain is gone. Hooray! My heart rate is great, so I'm not getting lightheaded, either. Another Hooray!

I still wonder if some of these symptoms we POTSers have are connected to hormones that haven't been linked to this yet. Like the hair loss. My Mom, told me she lost most of her leg and arm hair after she went through menopause. I'm not going through that, yet, but it does give me something to think about.

Besides Paige, is anyone else losing hair? Just call me Hairless in VA!

[Roy]

I get similar breathing symptoms.

I have had breathing problems since my pots first started. When I stand up it feels like I can't take a full deep breath. It feels like the lower part of my lungs are being squeezed and it goes right away as soon as I sit.

This symptom was one of my very first with mild tach. when standing. I thought that it was my asthma acting up in the beggining. I was placed on steroids, had my asthma meds changed several times, went to two pulmonologists, had 2 PFT's done(both showed excellent lung function), I even went to the ER twice because it was so bad. I was asked if I had OCD or any history of mental problems and even told that I was just having panic attacks.

I have asked several doctors since my dx why this happens and I was never given an answer. I was eventually told by a neurologist/dysautonimia specialist at UCLA that she believes that blood pooling around the diaphragm causing it to spasm and tighten up. This seems like the most logical explanation that I have been able to uncover.

I also get generalized shortness of breath somedays. Where I feel like I'm just out of breath even just sitting up.

I check my O2 saturation and lung function every day and it is normal. Which gives me some peace of mind, but it is still scary when it gets really bad.

[Deb]

Thanks for the info Roy. I have the breathing problem at differnet times, too, with the exception of when I am lying down. My asthma is usually worse when I am lying down, so the pooling really does make sense. I have an appt. with an asthma specialist next week, and I'm going to ask about the possibility of blood pooling around my diaphram. Like Paige wrote earlier, I also get out of breath just talking. I start to stutter.