POTS the basics...do I have it?

[ann09]

This is a newbie question.

My resting heart rate is 90 and immediately upon standing, 100. In the past, it has been 100 resting. I have taken mepropanol and liked that it kept me from feeling my heart pounding. I also think that eliminating foods I'm sensitive/allergic to has helped. I tend towards high blood pressure. Do I have POTS or not? One doc says yes, another no. Though the "no" doc was wrong about a few things.

Major symptom that I assume is POTS-- I can't sit up at an event (dinner out, a concert) for more than 20 minutes without fidgeting, then having to seriously concentrate on taking breaths to get enough oxygen. I concentrate on breathing, get very uncomfortable and spacey. I have to get up and move. I'm dizzy upon rising. Then moving around or standing helps. Oy. This IS POTS, yes?

How does one decide what med to take? And, what kind of medical professional is best for treating this, cardiologist? I live in the Pacific Northwest.

Thank you!

 

[mobyjoby]

Hi - I'm not an expert but I know some of the basics.

For POTS - you need to have a rise of either 30+ beats per min on standing or for it to go up to 120 or above.
You also need to have been resting quietly for at least 10 mins before standing and then stand still once you are upright. Your heart beat might rise further the longer you stand so it might be higher at 3 mins than on first standing.

If you have a heart rate monitor watch it is quite easy to follow what your heart rate does on standing.

There are other forms of orthostatsic intolerance as well which could lead to symptoms, such as orthostatic hypotension where your blood pressure drops. Others will be able to tell you more about these.

I also think that if a resting heart rate is possibly often 100 or more that could be considered sinus tachycardia but I don't know very much about that.

If you have only managed to demonstrate a rise of 10 bpm it would be hard for a doctor to confirm a diagnosis of POTS but given your symptoms I doubt it should be ruled out without proper testing.

The best test for POTS/ OI is a tilt table test

I haven't answered all your questions but hope that helps a little

Jo

 

[xchocoholic]

We have a thread here on how to do a DIY PMTTT ( Do it yourself, Poor Man's tilt table test) that may help you understand this. I started the thread but as with most threads, the idea got expanded on so you'll need to read the whole thing. I based this test on what 4 of my doctors had done on me for years. I never had a real tilt table test.

My hr jumps 30 pts and I get petite mals and sob after standing still for 10 minutes so I have POTS. At that point, I really have to lay down. Actually, I may not be doing this anymore since getting on allergy meds (Mast Cell protocal) but I haven't tested myself again yet. Or I may just doing it when my allergies aren't under control.

tc ... x

 

[Valentijn]

It sounds more like neurally mediated hypotension (NMH) than POTS. POTS would hit as soon as you stand up, and there would be a BIG increase in heart rate. NMH is typically delayed a while, which fits with your symptoms.

Instead of BP actually getting low (when STANDING for a long time - it'll be normal when laying down), the pulse pressure might get narrow. Usually the diastolic value rises, as it should, but the systolic stays the same or even drops a bit, when it should be rising too. A normal pulse pressure is 40, and 25 or under is extremely low.

The problem with GPs is that they'll measure it right after you get into their office when you're still feeling fine. By the time you've been upright long enough, the appointment is long over. The typical way to diagnose NMH (or POTS) is with a Tilt Table Test (TTT). But in the case of NMH, the TTT should last at least half an hour, and whoever is conducting it should be told ahead of time that they're looking for a delayed drop in blood pressure or pulse pressure.

Usually cardiologists run the TTT, but they won't know anything about NMH, so you'd probably do best to find an orthostatic specialist if you can.

 

[xchocoholic]

Here's an easy to understand explanation.

http://www.dinet.org/pots_an_overview.htm

FWIW. I'd look for an integrative / functional doctor that will look for root causes of your illness instead of trying to see someone who specializes in POTS. This helped me quite a bit. But, I just learned about the mast cell protocal and my orthostatic intolerance responded to it. I'm not sure how much yet. Most doctors don't know about the mc protocal. Info is on this site tho. tc ... x

 

[Sallysblooms]

I have had dysautonomia/POTS for 3 1/2 years now. After an antibiotic and surgery.

Doing the testing for your bp at home first would be good. Make sure someone is with you. I agree, an integrative MD is most helpful. I have not found other doctors that understand how to use supplements so I stay with integrative MD's.They have much more training.

I hope you can get tested and find out exactly what problems you have so you can get some treatment.

 

[SOC]

Try this article here at PR: http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing

There's good information and links to tests you can do to determine whether you might have different types of OI.

 

[Marg]

Go to www.OIRESOURCE.com there is a lot there..menu left side. I think Dr. David Bells says there are 5 or 6 different kinds. The different kinds are explained as well as the poor mans tilt table.

 

[taniaaust1]

As another here stated.. POTS is defined as being a rise of either 30+ beats per min on standing or for it to go up to 120 or above. (mine can do an increase of up to 67 beats when I stand up from my laying heart rate).

For POTS they usually look for this standing raise happening somewhere within the first 10 or 12 mins (so its easier to get diagnosed then most of the other OI issues one can have which can take longer to show up). From what you said.. it dont sound at all if you have POTS (if you were tested with standing for at least 10 mins).

It is normal for a persons heart to increase a little on standing like yours is.

It can happen but it is fairly uncommon for one to have high BP with POTS.

Major symptom that I assume is POTS-- I can't sit up at an event (dinner out, a concert) for more than 20 minutes without fidgeting, then having to seriously concentrate on taking breaths to get enough oxygen.

Ive never heard of focusing on breathing being helpful as far as POTS goes, that wouldnt help blood be getting to the brain better, nor would it stop blood from pooling in the abdomen or legs like it does with POTS. POTS people get helped by raising the legs up or laying down.

I'm dizzy upon rising. Then moving around or standing helps

Standing is never good for POTS people.. the fact that standing helps you, I think shows you wouldnt have POTS. Your symptoms dont fit this so I can fairly confidently say from that that you dont have POTS..

I do thou wonder if you BP is doing a quick sudden ditch thou on standing before it has a chance to adjust to the body posture change... check what your BP is doing then and if it is suddenly falling too much. You could well have another kind of OI issue.

How does one decide what med to take? And, what kind of medical professional is best for treating this, cardiologist?

I suggest to try to work out yourself by getting (or borrowing or hiring) a BP monitor.. to work out exactly what your BP is doing when you stand up (esp since you only get the issue when you first stand). If you post your BP shift, laying to standing and then while still standing after a little while and its doing when you stand.. someone here will be able to tell you if your readings are normal or not.

Its a lot of hassels finding a specialist for OI issues, so I suggest to try to work out whether you do or not first before you go to all that trouble of seeking one out.

And as far as meds go for OI issues.. they would depend on what kind of OI issue a person has.. even with POTS there are different kinds of it so what med is right for one, may not be right for another... eg hyper POTS if one only had that kind, is usually is treated differently to low blood volume kind of POTS. Im fairly sure thou from what you've said that you do not have POTS.
There is also certain meds which can treat BP swings if one has high BP but also gets sudden drops (Im currently on one of those meds). This may be what your issue is... or maybe you could have an issue with narrowing of the pulse pressure.

Anyway.. take some recordings on what your BP is doing and then try to find out more.

then having to seriously concentrate on taking breaths to get enough oxygen. I concentrate on breathing, get very uncomfortable and spacey. I have to get up and move. I'm dizzy upon rising.

Another thing it could be from what you said there.. is you could be hyperventilating (over breathing).. maybe you arent as low on oxygen as you feel.
If one was hyperventilating due to breathing concerns (or any anxiety?).. that could also contribute to making a person feel dizzy on standing.

 

[ann09]

thanks to everyone for their ultra-informed replies! i will check out the links. my doc didn't do the test right--she had me lying down for a couple minutes, then took bp as soon as i stood up (not 10 minutes later).

regardless, i may not have POTS.

i should clarify the breathing thing--it's maybe better expressed as "air hunger". i just don't breathe. unless i concentrate on it. maybe it is anxiety, but i'm not convinced. i will read about other types of OI, etc.

 

[taniaaust1]

thanks to everyone for their ultra-informed replies! i will check out the links. my doc didn't do the test right--she had me lying down for a couple minutes, then took bp as soon as i stood up (not 10 minutes later)..

Your BP needs to be at your stable laying down rate before standing.. many will get a person to lay for 10 mins before the standing. The heart rate shouldnt just be taken 10 mins later.. but at regular intevals during that 1 to 10-12 mins standing time example of this would be at 1,3, 5, 10 and 12 mins would pick up most POTS (some places have beat by beat continous heart beat testing during the time). Anyway..what Im trying to say is that it needs to be taken just more then the once during the time.

 

[nanonug]

I can't sit up at an event (dinner out, a concert) for more than 20 minutes without fidgeting, then having to seriously concentrate on taking breaths to get enough oxygen. I concentrate on breathing, get very uncomfortable and spacey. I have to get up and move. I'm dizzy upon rising. Then moving around or standing helps.

I have similar symptoms. Have a look at this post and see if you recognize yourself in some of the symptoms: ME/CFS is a mast cell disorder (hypothesis).

 

[xchocoholic]

My hr and bp won't stabolize for an hour if my hr is up so laying down for 10 minutes prior to the test
won't work for me.

Imho, Having your own bp cuff and playing with this
yourself is the best way to see what's happening.

I'm the one who caught my pots diagnosis. My docs all found my oh tho. My bp drops in 3 minutes easily.
But no one had asked me to stand there for longer than 3 minutes to test for pots.

Knowing this
changed how I reacted emotionally and physically to the petite mals and sob I get when I have pots.
I no longer felt upset about how I felt. I knew it was pots and laying down would help.

I was playing with my monitor one day, lol, and I noticed that if I had a pots episode ( hr jumped, petite mal and sob for me) it took me an hour to recover.
Meaning if I got up before 60 minutes was up even if I felt ok and my hr and bp were
normal, my hr jumped right back up to my pots rate of over 110. After laying for an hour, my hr will go back
to it's norm upon standing.

And then within x amount of time, I'd have another pots episode and have to lay back
down. I was in this vicious circle 24/7 until starting the mc protocal. I've yet to do a pmttt tho to see what my hr and
bp are doing now. I still have hypoperfusion and need to lay down but I'm upright more. Kow..

Blood glucose monitors are good for everyone to have too but trust me they're not as much fun. I discovered
that I feel like crap if my glucose is 80 or under tho. And that I'm not a candidate for the low carb diet. My
blood glucose got stuck at 67 and wouldn't budge.
And that what I thought was a blood glucose problem wasn't
always or can't be measured by this type of monitor.

Tc .. X

 

[Allyson]

Go to www.OIRESOURCE.com there is a lot there..menu left side. I think Dr. David Bells says there are 5 or 6 different kinds. The different kinds are explained as well as the poor mans tilt table.

when i went to a gynaecologist recently I told her I had OI and she snorted "you mean postural hypotension",
'I said no they call it OI
Just a fancy new name for the same thing - she said
was she right?
What is the difference can anyone tell me please?

 

[Valentijn]

when i went to a gynaecologist recently I told her I had OI and she snorted "you mean postural hypotension",
'I said no they call it OI
Just a fancy new name for the same thing - she said
was she right?
What is the difference can anyone tell me please?

I think she's almost right, but not quite. OI is a category which includes a lot of different specific problems causing the general symptom of intolerance to orthostatic changes. It could include POTS, NMH, etc.

Postural hypotension is a category which could also include different specific problems, but they'll all be hypotension. So maybe not POTS, since low blood pressure might not be present in POTS.

 

[Allyson]

Thanks Val, But would postural hypotension invovle a measurable drop in BP on standing? - after lying

 

[Valentijn]

Thanks Val, But would postural hypotension invovle a measurable drop in BP on standing? - after lying

Yes. No idea if it's required to be immediate though.

 

[Allyson]

Yes. No idea if it's required to be immediate though.

so that would be te difference maybe as we mask our drop so it is usually not measureable

at least until we are in our 80s [age wise ] according to my BP specialist

 

[Sea]

OI is the umbrella term. Postural Hypotension (also commonly called Orthostatic Hypotension - OH) fits under the umbrella along with POTS, NMH and others. The umbrella category basically covers conditions where symptoms are triggered or worsened with standing

 

[MishMash]

Low blood transit to the brain is the source of many illnesses, not just OI or POTS. And OI/POTS is just a symptom that you have more serious neuroimmune dynamic going on. Unfortunately, this science is just in its infancy. I think ME/CFS-related OI/ POTS will turn out to closely associated with other brain illnesses. Low blood circulation to the brain may turn out to be the etiology of our illness (as well as many others).

Cereb Cortex. 2012 Dec 12. [Epub ahead of print]
Cerebral Blood Flow is Diminished in Asymptomatic Middle-Aged Adults with Maternal History of Alzheimer's Disease.

Geriatric Research Education and Clinical Center, William S. Middleton Memorial Veterans Hospital, Madison, WI, USA.
Abstract

Cerebral blood flow (CBF) provides an indication of the metabolic status of the cortex and may have utility in elucidating preclinical brain changes in persons at risk for Alzheimer's disease (AD) and related diseases. In this study, we investigated CBF in 327 well-characterized adults including patients with AD (n = 28), patients with amnestic mild cognitive impairment (aMCI, n = 23), older cognitively normal (OCN, n = 24) adults, and asymptomatic middle-aged adults (n = 252) with and without a family history (FH) of AD. Compared with the asymptomatic cohort, AD patients displayed significant hypoperfusion in the precuneus, posterior cingulate, lateral parietal cortex, and the hippocampal region. Patients with aMCI exhibited a similar but less marked pattern of hypoperfusion. Perfusion deficits within the OCN adults were primarily localized to the inferior parietal lobules. Asymptomatic participants with a maternal FH of AD showed hypoperfusion in hippocampal and parietofrontal regions compared with those without a FH of AD or those with only a paternal FH of AD. These observations persisted when gray matter volume was included as a voxel-wise covariate. Our findings suggest that having a mother with AD might confer a particular risk for AD-related cerebral hypoperfusion in midlife. In addition, they provide further support for the potential utility of arterial spin labeling for the measurement of AD-related neurometabolic dysfunction, particularly in situations where [18F]fluorodeoxyglucose imaging is infeasible or clinically contraindicated.