Differentiating POTS from ME - Harder than it sounds.

[taniaaust1]

Would you know if that 30 bpm threshold definitely applies to the active standing test, as well as the tilt table test? I know for the tilt table test, it is definitely 30 bpm.

In the 2006 Dr Satish Raj paper I quoted above, it says that when you stand using your own muscle power (active standing), this acts to compress the blood vessels more than when you are passively placed in an upright position using the tilt table. The paper says that is due to the skeletal muscle pump, which is important in countering orthostatic intolerance when standing.

So via this skeletal muscle pump, active standing compensates a little bit for your POTS, whereas the tilt table does not compensate.

So that's why I believe in the 2006 paper, Dr Raj refers to the criteria used by Streeten et al, which is a 27 bpm threshold for POTS diagnosis on the active standing test, to account for the effects of the skeletal muscle pump.

But yes, this is back in 2006, so this criterion may well be out of date now. It would be nice to find an up-to-date paper detailing the criteria for both the tilt table test and the active standing test.

That's probably why it has been found by a study that standing test is the better of the two being more sensitive.

POTS is like ME/CFS.. people use different definitions and I dont think its like set into hard stone yet so all we can go by is what the general consensus out there currently in our medical communities on what POTS is.. and use that definition

Not that I trust wiki much but it states there "The hallmark sign of POTS is a measured increase in heart rate by at least 30 beats per minute within 10 minutes of assuming an upright position.[1] For people aged between 12 and 19, the minimum increase for diagnosis is 40 beats per minute.[2] "

and all the doctors Ive seen (all 4 who did standing test on me) went by the 30 beats per min on standing test (poor mans test)

 

[taniaaust1]

Thanks @TrixieStix for the link

I'm still wondering how the exercise treatment recommended for POTS sits with a diagnosis of M.E.
I've heard that exercising horizontal can be a less load so I guess some lying down exercises (if you can manage them) or even possibly something like hydrotherapy if you were well enough??

It should be calf strengthening exercise, so I dont know how well hydrotherapy would work as astronauts get POTS due to lack of gravity.. being in pool like takes away a lot of gravity

 

[taniaaust1]

Not in my case. I've been doing this for almost 2 years now and I've reached a plateau. As long as I have this illness, my body can't take more than what I've been doing. I can always do less, but not more.

Hi i think you miss took my post. I was refering to those who can progress needing to stay at certain level for weeks before trying more. Its a bad idea to think cause someone did something last week, that they can always be that level. Some dont know exactly where there limit lays and need to experiment to find this out to know really what they can and cant be doing.

best to find ones limit and then back off so to have some energy in reserve as life is full of unplanned things happening so someone shouldnt be trying to operate at their full limit.

 

[keenly]

I think they are caused by the same thing.

 

[gsclarke]

I am going to stop looking for a label for my problems. ME or POTS (and yes there are always more possibilities) I have symptoms to which there is no magic answer.

I am inclined to think there is an overlap as I believe mitochondrial failure to be part or all of the problem and it is not as simple as it's on or off.

After a year of messing around with tests for other things, I am going back to Dr Myhills advice with D-Ribose etc. I will also be taking magnesium Q10 etc plus sea salt. I pace with a Polar A300 and use Elite HRV.

For a year I have been recording several times a day to work out what happens to my Heart Rate, Variability, Calorie Burn v Step Count and so on. My challenge now is to micro manage results rather than says its ME or its POTS and from them try and draw conclusions as to what is helping and what is not.

For example, I have been taking a beta blocker for a year. It's been tough but I have finally worked out that 2.5 mg morning and again at night helps keeps my heart rate sensible. Higher doses, different timing, mixing with different BP meds are all bad news for me. I can maybe improve from there but it is very slow progress to be absolutely sure what is working and why. I spent hours monitoring and recording my HR, BP and other factors, all day every day for months to understand what helped and what didn't. I know when the meds kick in 1st pass, half life and when they eliminate, that's for me personally not what they are expected to do. For example they kick in quick and metabolize quick for me so 1 a day doesn't help with many meds.

Loads more to be done but without naming the problem exactly I am confident I will find some answers. Salt intake is dificult as testing has to be done away from all other changes, when things are stable. So many things to test lol.

 

[Barry53]

Only just dropped into this thread, so apologies if this is out of context with, or duplicates, previous posts.

Could it be that ME and POTS are really part of the same continuous spectrum of conditions, which vary - and are labelled differently - according to where you are on it?

 

[Gingergrrl]

I apologize that I was only able to skim this thread and hope I am not repeating anything already said! I initially believed with 100% certainty for about 2-3 years that ME/CFS was my diagnosis (as did multiple doctors) but now I believe that my diagnosis is severe POTS/dysautonomia, MCAS, and several rare autoantibodies thrown into the mix that cause muscle and breathing weakness.

I have had significant improvement from IVIG in every area except for the POTS. Now I can prepare and cook a meal by myself (while seated) which was literally impossible for me prior to IVIG. I could give a million examples of things that I can now do seated that I could not do before ten months of IVIG and my MCAS/allergic reactions remain in remission.

But the POTS is no better and if I did not take Atenolol and Midodrine daily, I would not be able to stand for even a few minutes per day. When I try to reduce Atenolol by even 1/4 pill, within days my HR is back in the 160's to 170's. Along with this, if I push myself to stand/walk, it leads to dyspnea and chest pain. I believe my best shot is Rituximab to knock out the beta-adrenergic and other autoantibodies at production level.

But I have no fatigue and I have the ability to create energy. I have no cognitive or brain fog issues, no flu-like symptoms, no fever or swollen lymph nodes and I do not feel "sick". After four years, I still cannot figure out what PEM or crashes are which is why I do not think they pertain to me (vs. a symptom like when I was having daily anaphylaxis from MCAS in 2015 was so blatantly clear, no explanation was needed).

My hypotension is better from IVIG (daily BP is no longer 80/50 and most days it is 100/70) and my muscle strength is vastly improved. I can now open my very heavy glass patio door by myself, and things that I never dreamed I would do again, and could give endless examples like this. Prior to IVIG, I could not climb one single stair and now I can (just one though and not two LOL).

But the POTS and dysautonomia seem to be intractable for me. There are days I can walk 20-25 steps on flat ground inside my apt (which is thrilling) but most days I cannot. I have no limitations to social activity provided I use wheelchair. So I can watch a movie, listen to music, socialize with friends, talk on the phone, read, do homework with my step-daughter or play with my niece, etc. But I have not walked or driven a car since end of 2014 which is maddening. And whether my final diagnosis is Autoimmune POTS, as I have recently been given, or something else, I just want to fix it!

 

[Gingergrrl]

I want to add an addendum to my above post in case anyone else relates to it or has feedback. Earlier this evening, I attempted standing up for about 30-60 seconds with my dog on her leash outside and immediately got tachycardia in the 100's (had been in the 60's while seated) and felt very uncomfortable/short of breath and had to sit back down.

So I took my 1/2 Atenolol two hours earlier than normal (which is 100% okay with my doctors) and now I was able to just get up from computer and walk to my closet and get a sweater, b/c cold in my apt, and walk back to computer and zero tachy (so I did my 20-25 steps today after all but only b/c of the Atenolol).

I have taken Atenolol since mid 2013, and have no problem to take it for the rest of my life, but it only helps to this small degree and does not bring about the level of improvement that I would like (but without it, I'd probably have to lie flat all day so I am grateful to have it).

I have tried other meds like a calcium channel blocker, Mestinon, IV saline, etc, for POTS and all were disasters. Beta Blockers and Midodrine work best for me (which I know is not the case for everyone).

Thanks to anyone still reading this!