Orthostatic symptoms predict functional capacity in CFS: implications for management

[BEG]

I thought that if the dysautonomia were better than cognition would get better. But you are saying this is not the case. I thought there was a direct link.

Resting, I thought that the cognitive dysfunction would surely improve. Not so in my case. Perhaps it's due to aging? Cort has an excellent treatment section around here somewhere. Look for "Perils of Standing." I take a low dose beta-blocker, 1/4 tablet of Bystolic. See also my post # 16. Take care.

 

[toddm1960]

I do have dysautonomia but am in the orthosatic hypertensive group, my POTS is seconary to mitochondrial disease, defects in complex I and III. Most of the the treatments and drugs for OI negatively affect mitochondrial function and make my syptoms way worse. I've found nothing to help my brain fog and milky vision. Because OI is made up of two completly opposite groups, one with sympathetic and the other with parasympathic over stimulation one drug will help half the group and the other half worse.

 

[Resting]

Resting, I thought that the cognitive dysfunction would surely improve. Not so in my case. Perhaps it's due to aging? Cort has an excellent treatment section around here somewhere. Look for "Perils of Standing." I take a low dose beta-blocker, 1/4 tablet of Bystolic. See also my post # 16. Take care.

Thank you B-E Girl. I thought this thread was lost. I couldn't access it so sorry I am just now thanking you.
I am hoping to get more help with this aspect of the illness after my SPECT scan. Hopefully it will aid my doctor in helping these symptoms. I will have to keep that low-dose beta-blocker in mind when I next see my doc. Thanks again!

 

[xchocoholic]

thanks for posting this. IMHO, this needs a sticky ... I just spent an hour looking for this ... X

 

[ahimsa]

Sorry if this has been covered, but what is the core treatment for the orthostatic intolerance? Thanks, J.

I don't know if anyone answered this directly. Brown-eyed Girl posted a suggestion to look for an article called Perils of Standing. Here are some links to Phoenix Rising web site from that series:

Types of Orthostatic Intolerance: http://aboutmecfs.org/Rsrch/OITypes.aspx

Treatment options: http://aboutmecfs.org/Trt/TrtOIIntro.aspx

Other links in the series: http://aboutmecfs.org/Rsrch/OIBiomarkers.aspx and http://aboutmecfs.org/Rsrch/OITests.aspx

Sorry I didn't list them all in order (it was originally a series of articles and I may have missed some) but I hope this is helpful!

Treatment options need to be tailored to each person's type of OI and consider factors such as how they react to medications and so on. My personal treatment includes several prescription medications (midodrine, fludrocortisone, time released potassium) along with added salt (salt tablets) and 2.5 to 3 liters of water daily. I also avoid anything that triggers a drop in blood pressure. That means I avoid heat and standing. I sit down while showering. Actually, I pretty much sit down whenever possible. And I rest in a recliner with my feet up. I also try to walk a bit on good days.

 

[Elliot]

I'm asking my ME specialist next time I see him if I can have a tilt-table test or something to see whether I have Orthostatic Intolerance. It's great to see that if I do, it's treatable and would hopefully improve my general ME!

 

[Dolphin]

I'm asking my ME specialist next time I see him if I can have a tilt-table test or something to see whether I have Orthostatic Intolerance. It's great to see that if I do, it's treatable and would hopefully improve my general ME!

The NICE guidelines recommended against it so you might have a struggle.

 

[BEG]

The NICE guidelines recommended against it so you might have a struggle.

Dolphin, Why is this so?

 

[xchocoholic]

I'm asking my ME specialist next time I see him if I can have a tilt-table test or something to see whether I have Orthostatic Intolerance. It's great to see that if I do, it's treatable and would hopefully improve my general ME!

Not so fast Elliott, lol,

This would be great but ... If you go to the DINET (dysautonomia / OI / POTS) board and take a look around you'll find some who've improved but that's all. Their treatments vary from taking the meds recommended by their dysautonomia docs to salt loading to taking allergy meds to changing their diets to excercise to using compression garments.

You can do your own poor man's tilt table test. Better yet, have someone help you ... Just lay down for an hour and take your BP while laying still. Then stand up for 2 minutes and take it again. Don't talk or move ... If you don't notice a drop of 20 pts then take it again at 5 minutes ... I've heard too though that some people's BP doesn't drop until they've been upright for 15 ...

BTW. I have OI but I can handle hot showers and getting over heated now. I don't get dizzy anymore either. These all cleared up one year after getting the gluten out of my diet. We're all different ... X

 

[Dolphin]

Dolphin, Why is this so?

The NICE guidelines are rubbish. NICE works by giving lots of people access to some treatments that are supposed to be evidence-based and value for money. This is paid for by restricting access to other tests and treatments. So people in England have great access to CBT based on GET and GET; and restricted access to virtually everything else.

I never thought it was a good idea to look for NICE guidelines at this time but people like to demand things and can forget that you have to be careful what you wish for. Just as people in the US want evidence-based guidelines for CFS now which I think is a risky thing to call for as the only treatments where there are a few positive RCTs are CBT based on GET and GET.

 

[oceanblue]

So people in England have great access to CBT based on GET and GET; and restricted access to virtually everything else.

As opposed to people in Wales, who get restricted access to everything!