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Can OI/POTS disappear then reappear?

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
I had OI/pots at the beginning of my illness for a long time. It then disappeared for about 6 months, and now it is back.
I am also more exhausted, and starting to have migrines. I know cfs is cyclical, but can pots/OI go away then come back? Thanks for any info.!
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
sure can! I've had OI come and go regularly over the years. Sometimes even from day
Wow! Thought I was going crazy. Trouble breathing, slight dizziness, heart pounding and sweating! The nurse noticed my pounding heart just from walking and being weighed.
It had gone away for quite some time.
Thanks! Will try to do the least invasive POTS testing.
 

Horizon

Senior Member
Messages
239
Trouble breathing? Never heard that as a symptom. I think weight fluctuation for me changes my blood pressure and affects my OI.
 
Messages
15,786
Trouble breathing? Never heard that as a symptom.
I think it would usually be described as air hunger. Air hunger can arise due to insufficient oxygen getting to the brain, which with OI is the result of insufficient blood getting pumped to the brain. Laying down resolves it after a bit.

I think weight fluctuation for me changes my blood pressure and affects my OI.
OI is primarily associated with low blood pressure or low pulse pressure, not high blood pressure. Weight fluctuations wouldn't be causing low blood pressure.

However autoimmunity is a probable culprit, based on some of the studies which have found certain auto-antibodies to be pretty common in ME patients. And fluctuations are very much normal in autoimmune conditions.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @Clerner,

Worth considering that there are multiple pathways to POTS too, so a previous trigger that resolved itself (e.g. post-viral) might be quite different to one now (e.g. neuropathy). Equally one trigger might've resolved for a time but since flared up again :(
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
one trigger might've resolved for a time but since flared up again :(
True. At one point I got sicker and found out the ebv igg had increased quite a bit since my first acute attack. Plus,ebv EA, and EA-diffuse are still high 1 year and 7 mo. later. Have not checked ebv level since end of Feb.
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
I had been feeling well enough to start considering going back to work part time. I really had forgotten about the cyclical nature and possible relapses!
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Guess it's pots, not OI . Pounding, fast pulse. Blood pressure was 138/70. It usually runs low like 129.
I think different autonomic specialists use different terms but OI (Orthostatic Intolerance) is often used as an umbrella term for any type of problem maintaining heart rate and/or blood pressure while in an upright position. And POTS is a subset.

For example, the Johns Hopkins patient handout uses OI as an umbrella term that covers POTS and NMH (aka, NMS):

http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

But there are other uses. Vanderbilt seems to use POTS and OI as synonyms on this page:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38847

This article on medscape used to use the term COI (Chronic Orthostatic Intolerance) instead of OI. But I think the article remove that usage (my memory is not clear and I did not re-read the whole article):
http://emedicine.medscape.com/article/902155-overview

And I think dinet.org uses the term OI in a somewhat different way:

http://dinet.org/index.php/information-resources/pots-place/pots-overview

Trouble breathing? Never heard that as a symptom.

Feeling short of breath is how I usually describe it. I don't know how that differs from air hunger.

It's not like asthma or that type of trouble breathing. For me it's like I've been running and can't catch my breath. I used to do a lot more taking deep breaths, almost instinctively, because that worked when I was healthy (imagine after running you are breathing hard but after a few minutes you feel normal again).

But with this illness the deep breaths don't make everything go back to normal. It takes a lot of resting for my heart rate & breathing to settle down. No anxiety at all. Just short of breath, dizziness, nausea, exhaustion, rapid heart rate, chest pains, etc.

List of POTS symptoms on dinet.org:

http://dinet.org/index.php/information-resources/pots-place/pots-symptoms

And Phoenix Rising has a page listing OI symptoms:

http://phoenixrising.me/symptoms-of-orthostatic-intolerance

Sorry to ramble on, hope this is helpful to someone out there...
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
You said it came back after six months, could it be something to do with the seasons changing. Longer light cycles, more IR / UV, temp diferences...

Also is the trouble breathing like it's really hard to breathe in or is it gasping for air?
 

actup

Senior Member
Messages
162
Location
Pacific NW
Does anyone know any POTs/OI drugs( midodrene, beta blockers or mestinon) that can be used intermittently for these episodes, ie. 1-2 weeks at a time or do they need tapering up and down. Episodes are intermittent for me but keep me in bed.TIA!
 
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PennyIA

Senior Member
Messages
728
Location
Iowa
I've had POTS come and go... it usually flares up badly right at the start of a crash for me.