A little confused about POTS

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Ive been seeing a lot of people post about POTS here on PR and I am honestly a little confused about it. From my understanding it has something to do with blood volume in your body?? And how it changes/lacks change when standing??? Every time I google it I just get confused and find that everyone on here is much better at explaining things so they actually make sense, no wonder nobody understand this disease :meh:. Like is it something you test for or is just diagnosed based on symptoms?

Anyways, I am considering going to see an me/cfs specialist. I have read about a lot of people who have "POTS" and after seeing docs like Dr Kaufman (idk if he even sees new patients anymore), he actually addressed their POTS and people where actually able to get some relief.

Zero of the doctors that I have seen have ever spoken the phrase POTS, but I have a lot of symptoms that seem to be related to it (only compared to what I have found here on dr google). Like low blood pressure, dizzyness when standing (sometimes fainting), where I often need to grab onto the wall or any other object to not fall over, and my body also feels like its full of water? blown up like a little water balloon (honestly the worst symptom for me in this whole ordeal).

It would be a dream come true if I actually went to see a doc who would address AND! potentially treat this. Wouldn't solve all my problems but it would be a fabulous start.
 

i-lava-u

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POTS is one form of Dysautonomia common in ME/CFS, but there are others too. This may be helpful :)
https://me-pedia.org/wiki/Dysautonomia

Here is the link specific to POTS https://www.me-pedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
A little ways down the page, under the heading "testing, there is a link for the "NASA lean test" aka "poor man's tilt table test". This is something you can try at home.

The lean test is just for POTS and OH (orthostatic hypotension), other types of Dysautonomia would need to be tested by a cardiologist (tilt table test)
 
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@i-lava-u I ended up being able to watch the NASA lean test video at the bottom of the wiki page! But thanks anyways :) If you don't mind me asking, how do you like Dr. Bateman in terms of treatment and just overall care etc? If I am correct they are not taking new patients? But just curious of your experience, as I am over in Idaho and Bateman is the closet place to me, if it ever became a realistic option for me.
 

i-lava-u

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I have only wonderful things to say about Dr. Bateman, and the entire staff for that matter. The clinic hired 2 new physicians not too long ago, so I am not sure what the waiting list is now. You would need to call to find out....
http://batemanhornecenter.org/

Also, there is Dr. Nathan Holladay in Murray Utah (Bateman is in Salt Lake)
He is also really good. He worked with Dr. Bateman for a bit, then opened his own practice a few years ago.
https://www.holladaymd.com/
 
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i-lava-u

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On a side note, I just read your introductory post. So sorry you have newly joined this club :(

One piece of advice that I would offer, that I wish I knew when I first became ill:
Learn as much as you can about PACING

Out of all the things I have read, researched, tried..that is the ONE thing that I wish I knew about and implemented from the beginning :hug:
 
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@i-lava-u , ugh ya i am a newbie. I am very glad to have found PR as a resource though. Everyone in this community is really wonderful and supportive (and knowledgeable! im just trying to take it all in right now).

But sounds good. And when you say pacing you are referring to activities etc, so as not to overdo it?

I definitely fall into that trap of overdoing it when I feel "good" and then I get a flu like flare up that typically takes a couple months or so for me to recover from :// So definitely not great at pacing if that thats what you mean. Its SOO hard to not want to do lots of things when you feel good, especially exercise. I am (was?) a runner before I got sick so my first inclination is to get out and move (which results in an attempted 5 min jog), probably not the greatest idea, but it just makes me so darn happy. So definitely a lot of room for improvement with me in that department.
 

i-lava-u

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when you say pacing you are referring to activities etc, so as not to overdo it?
Yes

I am (was?) a runner before I got sick
Me too! I was training for my first triathlon, shared a soda with a friend one day, couple of weeks later got a bad case of mono...bada boom, bada bing...here I am....that was in 1995 (at age 17) :(

Pacing is hard for sure, but knowing what I know now and how much worse this illness can become, it is well worth it....
https://ammes.org/pacing/
 
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I definitely fall into that trap of overdoing it when I feel "good" and then I get a flu like flare up that typically takes a couple months or so for me to recover from :// So definitely not great at pacing if that thats what you mean. Its SOO hard to not want to do lots of things when you feel good, especially exercise.
I simply urge you: take pacing seriously: as you work thru what you are dealing with. I flunked pacing. And i am now paying a big price. Maybe age matters, pre-conditioning matters, we don't know much about: the disease Trajectory isn't being studied, either. But I thought during a window of two years, that I could just push, then recover later by: doing the big rest called: retired. So I"ve done almost nothing for months now.

And then the last six months is worse than ever.

PACING.

Last week, it happened, just brielfy. I went out, for two hours, did three errands. I hadn't been out in: 2 weeks or so. I became almost quasi-elated. I had not felt this good in: months. I'm blown away. I"m onna roll.

this is good. And I will be just fine tomorrow.

Crash. But it was not too bad, and not too long, so I am improving some. by PACING BETTER. (and 20 other things)
 

ryan31337

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Hi @maggie3,

Ive been seeing a lot of people post about POTS here on PR and I am honestly a little confused about it. From my understanding it has something to do with blood volume in your body?? And how it changes/lacks change when standing??? Every time I google it I just get confused and find that everyone on here is much better at explaining things so they actually make sense, no wonder nobody understand this disease :meh:. Like is it something you test for or is just diagnosed based on symptoms?
POTS is defined by an increase in heart rate by more than 30bpm with no immediate decrease in blood pressure upon standing.

Essentially, when anyone stands there is a shift of blood downwards due to gravity, when you have POTS not enough blood returns back to the heart, so heart rate increases to try and compensate. There are a number of reasons why this might happen and a low blood volume is just one possible cause. The other major drivers thought to be involved are neuropathic causes, where nerves are not functioning properly to force the blood back to the heart; adrenergic causes, where excessive production/sensitivity of hormones can cause the heart to beat too quickly; and deconditioning, where the muscles have become weak and don't help out as they should. Most docs tend to think it is a mixture of all of the above, in varying degrees.

Zero of the doctors that I have seen have ever spoken the phrase POTS, but I have a lot of symptoms that seem to be related to it (only compared to what I have found here on dr google). Like low blood pressure, dizzyness when standing (sometimes fainting), where I often need to grab onto the wall or any other object to not fall over, and my body also feels like its full of water? blown up like a little water balloon (honestly the worst symptom for me in this whole ordeal).
What you describe may be a better fit for a similar and better understood condition: Orthostatic Hypotension (OH). With OH your body also doesn't compensate very well for standing up, with the sudden drop in blood pressure. This is what makes you feel immediately dizzy and faint. It is different to POTS by definition (POTS should not have a sudden drop in BP), but there are some overlapping symptoms. Generally POTS patients get progressively more dizzy/breathless/faint/tachycardic as standing time increases, fainting is not that common outside of tilt table tests.

You can get an idea of your problems from lean tests at home but ultimately you need a test in hospital, with special beat-to-beat blood pressure monitoring to know for sure. Treatment can make a difference, a lot of it is behavioural but there are also some meds that help. It can also raise suspicion for other conditions that often feature POTS and get you help in ways you might not expect.

Hope that helps,
Ryan
 
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Yes


Me too! I was training for my first triathlon, shared a soda with a friend one day, couple of weeks later got a bad case of mono...bada boom, bada bing...here I am....that was in 1995 (at age 17) :(

Pacing is hard for sure, but knowing what I know now and how much worse this illness can become, it is well worth it....
https://ammes.org/pacing/
Well I am hoping that one day we will both be able to run again! You never know.
 
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Well I am hoping that one day we will both be able to run again! You never know.
And you may! :) And yes this does happen!

Regarding PACING: its important to slow and take breaks and or stop: BEFORE your body sends a message that you should stop now. So thats part of the trick. When you can pin down that spot better, you can better: know when to take a break or rest or: not do that any longer now.:)
 
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And thanks @Rufous McKinney for the advice, I am really new to all of this so just now learning all of the best ways to manage it all.
I remain a bit underinformed on this aspect...but am interested as I share some of these symptoms.

Is there also a spinal/cervical issue with POTS? @ryan31337 ?

Perhaps I have merged various aspects of Jennifer Brea's story...which you should definately check out...here is a recent Thread from Jennifer:

https://forums.phoenixrising.me/thr...us-might-be-mis-diagnosed-eds-patients.75684/

I have suddenly developed a bizarre: neck vertebrae problem...they are popping, popping, wind pouring out, its weird, and new and: well NOW what is going on there? Is that: influencing my little mess? (drinking bone broth and reducing wind here, via diet, to try to help this).
 

ryan31337

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Hi @Rufous McKinney,

Is there also a spinal/cervical issue with POTS? @ryan31337 ?
Short answer is yes.

There are specific cases where things like Chiari malformation & cranialcervico instability (CCI) appears to very significantly impact autonomic function and cause POTS (usually alongside other neurological issues you don't see in 'regular' POTS/CFS). This can be 'fixed' by correcting those structural issues and there are a few patients out there that have had very dramatic improvements from surgical procedures to lift their head back up.

There is also the acceptance that POTS is a common comorbidity in hypermobility disorder (EDS/HSD etc.). Hypermobile patients are likely to have issues with deconditioning and poor muscle strength as per the previous list of POTS causes, but hypermobility might add another hypothesis to the causes of POTS list: joint and blood vessel laxity, not helping return blood flow as they should. This is still speculation as far as I know, but not unreasonable.

A solid POTS diagnosis from an expert in the field should invariably lead to suspicion of hypermobility and assessment for it - especially if there's a history of 'CFS', because there's a good chance CFS was a misdiagnosis and hypermobility was always a better fit. This is a bit contentious scientifically as we don't understand hypermobility very well either, but from a patient perspective the support for HSD/EDS is far, far better than with CFS.

It might be worth you considering a workup by an informed rheumatologist because an accepted (if not well understood) symptom of hypermobility syndromes are spells of increased crepitus (joint popping and crackling).

Ryan
 
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especially if there's a history of 'CFS', because there's a good chance CFS was a misdiagnosis and hypermobility was always a better fit.
Thank you, @ryan31337 . I need to now cycle back on the collagen thing. It makes sense to me that much could be going wrong if processes that involve collagen are damaged or impaired/ our scaffolding, so to speak, is weak, things that must flow.

A Chinese study I glanced at: claimed to have located the Primary Vascular System (the qi channels). And that system they claimed was held together with collagen. I don't know if that study is in fact: proof of that, but there is collagen, again.