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moyan
01-01-2010, 06:00 AM
It happened again: When I got up, despite stamping my feet and going up slowly,when I got to tha kitchen I had to grab a doorhandle and wait till head cleared and legs stopped shaking. Maybe 30 secs. Blood-pressure is OK. Is this another wg ploy? Anybody else have this? Then again, last time I had to call firedepartment and the 4 of them that helped me up were so handsome!

Sangye
01-01-2010, 06:44 AM
Do you mean that you feel faint and shaky right after you stand up, but then it goes away? If so, that's usually an adrenal issue. The adrenals help regulate blood pressure during postural changes. If you're on pred (or have been), your adrenals don't function properly. Your blood pressure might be normal when sitting or after standing for a couple minutes, but your bp will drop when you stand up. It will stabilize in about 1 minute. There isn't much you can do about it, other than to stand up slowly, always have something to grab onto and sit back down if necessary.

You should definitely have your doctor check this, though. Postural hypotension is the most likely culprit, but not the only one.

If it is postural hypotension, you might try adding some sea salt into your diet as well. Celtic sea salt is the best if you can find it (health food store). You don't need tons, just a bit in your food each day. It strengthens the adrenals.

moyan
01-01-2010, 07:04 AM
Thank you, thank you, thank you. I am on pred, only 15 mg now, and also the med they give after transplants. You are the first to know what I am talking about, no doc has been able to answer. And I am learning to avoid it, not fainting, know what is happening!

moyan
01-01-2010, 07:04 AM
oh, salt is out, kidneys!

Jack
01-01-2010, 07:47 AM
Not quite as simple as that moyan. I have had a renal transplant and now have much reduced kidney function, but I found myself getting cramps due to lack of salt. I now just use the odd pinch instead of none at all and they stopped.

moyan
01-01-2010, 08:20 AM
Thank you Jack, and have a good year

Sangye
01-01-2010, 10:02 AM
Yes, don't go crazy with the stuff.... Salt is a necessary nutrient and ironically is necessary for strong kidneys. Excess salt (ie, Western diet) is definitely trouble.

I'm just horrified that no doctor has suggested that. It's a no-brainer, for Pete's sake! If you have a bp kit you can check for it yourself (NOTE : This is not a substitution for getting it properly checked).
1) After sitting for at least 10 minutes, check your bp; keep the cuff on
2) Stand up and immediately check it again

If the systolic (top number) has dropped with standing, you have adrenal involvement causing postural hypotension. Normally, the systolic should rise by about 10 when you stand. This increase in bp is necessary to bring blood to the feet and prevent lightheadedness, etc...

elephant
01-01-2010, 10:31 AM
Moyan, I used to pass out, actually ended going in a ambulance and they kept me over night at the hospital on a cardiac unit. They did a whole bunch of cardiac work up and I had no postural hypotension. They have no clue why this happened to me. The only time I pass out is when I am sick or having a huge WG flare. So don't know if it's the wegeners ( vasculitis) or something else. The last time I passed out was March 2009. I know being very anemic can cause it and low blood pressure. Like Sangye stated need to get it checked out. Hope it's just the postural hypotension. Do you have a blood pressure machine?

moyan
01-01-2010, 01:01 PM
Yes I do and will try what you recommend tomorrow, too tired today. :) MY internist didn't tell me to take calcium and iron either. Had 4 bloodtransfusions which he said was because bone marrow got lazy with the procytox. (Lazy is my word) Well with 50 mg instead of 200

moyan
01-02-2010, 12:26 AM
Good morning in the new year
Twice have I been to the hospital by ambulance after falling. Not because of fear, but to learn why and how to prevent it. It's not comfortable not being able to get up! Longest on the floor was 2 hours, but my neighbour was buying milk for me so.......Had I known about this site, it would have saved me those 2 trips! In no time did I learn why and how, not a word in the hospital to answer my questions.

elephant
01-02-2010, 12:47 AM
Happy New year to you all! Moyan, have you taken your blood pressure yet?

moyan
01-02-2010, 12:55 AM
No, first I have to wake up and then find that meter. Hesitate though, stopped using it when it showed 200/something, LOL. I will!! Always around 150 at the doc's despite my "white coat syndrome"

elephant
01-02-2010, 03:09 AM
Moyan, I know it's scarey when you see that number 200. Been there many time's. You need to make sure your blood pressure is controlled. You can develop a stroke, heart attack and kidney failure. It's not good for our WG disease. Don't be afraid. I will be standing right there. :)

moyan
01-02-2010, 03:30 AM
You are so sweet! (Can't find any smiley)

elephant
01-02-2010, 04:44 AM
Thanks, I had to make my own smiley face. That's why I love this forum, we are here to support and help each other. I have learned so much from this forum. Hope today is a good day for you.

pberggren1
01-02-2010, 10:07 AM
I know that pred increases blood pressure. My GP put me on Ramipril for a while to lower it.