The Chronic Fatigue Syndrome and Fibromyalgia Orthostatic Intolerance Poll

Regarding Orthostatic Intolerance (Increased symptoms upon standing)

  • I have been diagnosed with postural orthostatic tachycardia syndrome (POTS) (rapid heart beat )

    Votes: 34 34.3%
  • I have been diagnosed with orthostatic hypotension (low blood pressure on standing)

    Votes: 29 29.3%
  • I have been diagnosed with postural hypocapnic hyperventilation (rapid breathing upon standing)

    Votes: 5 5.1%
  • I have been diagnosed with low blood volume

    Votes: 13 13.1%
  • I have taken a tilt test and passed but my symptoms went up

    Votes: 13 13.1%
  • I have not taken a tilt test or a home orthostatic intolerance test

    Votes: 40 40.4%
  • My symptoms increase when I stand up or when I have to stand in place for too long

    Votes: 85 85.9%
  • I think better when lying or sitting down

    Votes: 77 77.8%
  • I don't do well with hot baths or showers

    Votes: 61 61.6%
  • None of the above

    Votes: 3 3.0%

  • Total voters
    99

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[bimg=fright|200|no-lightbox]http://www.cortjohnson.org/forums/attachments/dizziness-orthostatic-intol-jpg.687/[/bimg]Do you experience orthostatic intolerance (problems standing?).

Orthostatic intolerance is not well diagnosed and many doctors know little about it.

Check out Health Rising's Orthostatic Intolerance Resource Section for information on what orthostatic intolerance is and what you can do about it.
 

JennyJenny

Well-Known Member
I checked off Orthostatic Hypotension but I think my dx is Hypotension. I am on Fludrocortisone. Fainted on a Table Tilt. Only felt dizzy once after grocery shopping and leaning down to put something away. It was a sudden dizzyness but not out of control but had to hold on to the sink for a minute and staggered to bed and did lie down for about 45 minutes.

My doctor about 3 years ago when putting me on Fludrocortisone asked if I ever got dizzy standing and I said not really, more of being weak and sometimes just a little light headed but nothing major.
 

KweenPita

Active Member
I am going to have my blood volume checked. My BP is erratic from 180/90 to 70/40. There have also been times when my blood has been drawn that no matter where they "stuck" me my blood didn't want to want to flow into the tubes.
 

Sarah R.

Active Member
I'm so thankful to be reading Dr. Bell's posts on orthostatic intolerance. They are so clear and explain in such practical detail what goes on with me. It's refreshing to hear a doctor who really knows his stuff talk about the primary symptom that keeps me in bed most of the time. I'm able to sit up and even stand for a short while. But given my druthers, if lying down is an option, I'm there. I just feel less sick lying down. Florinef did nothing for me except give me a stomach ache, but I've had some lessening of OI symptoms recently after starting on a small amount of estradiol. Thanks, Cort, for giving Dr. Bell space here; and thanks, Dr. Bell, for sharing your expertise with us in this way. I feel a little saner after reading your explanations.
 

Snookum96

Active Member
I want to get tested for low blood volume as well. I was just dx POTS and all my symptoms are worse when standing. Sitting is better but still causes the same problems, it just takes longer.
 

AnneVA

Active Member
Cort, what does "taken tilt table test and passed" mean? You passed in that you are dx'ed with POTS, etc.? or you passed without dx of POTS but you had in increase in symptoms?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, what does "taken tilt table test and passed" mean? You passed in that you are dx'ed with POTS, etc.? or you passed without dx of POTS but you had in increase in symptoms?
Yes!

One of the things I like about this poll is that you can go back in and change your answers if you want :)
 
There's no option for having done the home tests with positive results but not getting an official diagnosis. My doctors noted my rapid heart beat and high blood pressure--threatening me with statins unless I began a cardio exercise program--but refused to acknowledge that it is a neurological condition. After a lot of time and expense in seeing a cardiologist and getting a stress test (that knocked me on my ass for months), I did get the diagnosis of hypertension downgraded to "white coat syndrome" so no more med threats but still no one tilt table or even an in office DIY version. I've done the home version and it's not pretty.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm so thankful to be reading Dr. Bell's posts on orthostatic intolerance. They are so clear and explain in such practical detail what goes on with me. It's refreshing to hear a doctor who really knows his stuff talk about the primary symptom that keeps me in bed most of the time. I'm able to sit up and even stand for a short while. But given my druthers, if lying down is an option, I'm there. I just feel less sick lying down. Florinef did nothing for me except give me a stomach ache, but I've had some lessening of OI symptoms recently after starting on a small amount of estradiol. Thanks, Cort, for giving Dr. Bell space here; and thanks, Dr. Bell, for sharing your expertise with us in this way. I feel a little saner after reading your explanations.
He is a remarkable communicator is he not?
 

Snookum96

Active Member
There's no option for having done the home tests with positive results but not getting an official diagnosis. My doctors noted my rapid heart beat and high blood pressure--threatening me with statins unless I began a cardio exercise program--but refused to acknowledge that it is a neurological condition. After a lot of time and expense in seeing a cardiologist and getting a stress test (that knocked me on my ass for months), I did get the diagnosis of hypertension downgraded to "white coat syndrome" so no more med threats but still no one tilt table or even an in office DIY version. I've done the home version and it's not pretty.
White coat syndrome that's a new one for me. That is horrible do they refuse to at least measure your stats while standing?
Where are you located? Maybe someone could recommend a doctor.
 

Mona-Alisa

Member
Cort, Now that M.E. has been newly coded in the US WHO, if you've been dx'd with M.E. is it ok to still take the surveys for CFS?
 

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