Having Trouble Getting A Diagnosis.

[loot]

I having trouble understanding how there can be confusion as to whether you have POTS or not. To be honest, you don't really need a doctor to diagnose it, he is only needed to officially confirm it. Just buy a portable finger pulse reader and to test, lay on the floor for about 10 minutes and then get up and stand up straight. Take note if your pulse rises 30 beats more than it was in the supine permission within 5 minutes of standing. Normally you won't have to wait long before it rises. If it only goes up 10-15 beats more then its probably not POTS.

[thegron]

Loot,

That's actually a good idea. How accurate do you think those devices are though?

As far as the confusion is concerned... whether I have some dysautonomic symptoms or not is not in debate. It is more trying to find out if it is primary or secondary (caused by some other disease). And I'm actually most interested in seeing if I can pinpoint the cause of the bad brain fog that I have. I can put up with the other symptoms because they're relatively mild. It is just this **** brain fog...

[kayjay]

I having trouble understanding how there can be confusion as to whether you have POTS or not. To be honest, you don't really need a doctor to diagnose it, he is only needed to officially confirm it. Just buy a portable finger pulse reader and to test, lay on the floor for about 10 minutes and then get up and stand up straight. Take note if your pulse rises 30 beats more than it was in the supine permission within 5 minutes of standing. Normally you won't have to wait long before it rises. If it only goes up 10-15 beats more then its probably not POTS.

loot- the issue really is that other problems can cause the same exact symptoms. Most of us have also had lots of other testing to rule out cause of postural tach.

Thegron- have you had a plasma potassium check? I had my worst migraine and pots flare after a Bp pill that raises potassium. I would have definitely used the term "thunderclap".

[Guest Alex]

I having trouble understanding how there can be confusion as to whether you have POTS or not. To be honest, you don't really need a doctor to diagnose it, he is only needed to officially confirm it. Just buy a portable finger pulse reader and to test, lay on the floor for about 10 minutes and then get up and stand up straight. Take note if your pulse rises 30 beats more than it was in the supine permission within 5 minutes of standing. Normally you won't have to wait long before it rises. If it only goes up 10-15 beats more then its probably not POTS.

In my opinion,just because someone has an increase of 30 + bpm it doesn't mean that person has POTS ...or I should better say just POTS.

Also, I believe that the role of the doctor is much more complex than that. A doctor can determine the underlying cause of your POTS, can help you find out the type of POTS you're dealing with as the treatment for hyper POTS is different than the one for neuropathic POTS or than the one for the hypovolemic POTS and so on.

The test you have suggested, loot, the poor man's tilt table is indeed a good indication of one's vitals, but it has to be done for more than 5 minutes and it only gives partial info about how the BP and HR numbers change. During a real and rigorous tilt table test your HR and BP are monitored continuously, not every couple of minutes - something you can't do at home unless you have a beat-by-beat BP machine. Those kind of readings associated with the readings obtained when they test your body's reaction to different substances that artificially increase or decrease your HR or your BP give the specialists a more complete and complex picture of what is going on.

For what it's worth, sometimes the TTT may be negative for someone with POTS as in some patients the symptoms wax and wane. If you were to check my vitals today, you'd never think I have POTS, yesterday was a different story though.

Best,

Alex

[loot]

Loot,

That's actually a good idea. How accurate do you think those devices are though?

As far as the confusion is concerned... whether I have some dysautonomic symptoms or not is not in debate. It is more trying to find out if it is primary or secondary (caused by some other disease). And I'm actually most interested in seeing if I can pinpoint the cause of the bad brain fog that I have. I can put up with the other symptoms because they're relatively mild. It is just this **** brain fog...

Yes I'm not saying you don't have symptoms but you have to have P.O.T.S...for it to be POTS because that's it key characteristic. Its tachycardia upon changing your posture. Those devices are fine enough to get a good idea whether you have POTS or not.

loot- the issue really is that other problems can cause the same exact symptoms. Most of us have also had lots of other testing to rule out cause of postural tach.

Thegron- have you had a plasma potassium check? I had my worst migraine and pots flare after a Bp pill that raises potassium. I would have definitely used the term "thunderclap".

There are many different conditions that have similar symptoms to POTS but if you don't have actual postural orthostatic tachycardia...then it obviously can't be POTS at the root of it all. Its like having cancer like symptoms but with no cancerous cells....in that case, no matter how much it seems like cancer - it isn't.

[loot]

In my opinion,just because someone has an increase of 30 + bpm it doesn't mean that person has POTS ...or I should better say just POTS.

Also, I believe that the role of the doctor is much more complex than that. A doctor can determine the underlying cause of your POTS, can help you find out the type of POTS you're dealing with as the treatment for hyper POTS is different than the one for neuropathic POTS or than the one for the hypovolemic POTS and so on.

The test you have suggested, loot, the poor man's tilt table is indeed a good indication of one's vitals, but it has to be done for more than 5 minutes and it only gives partial info about how the BP and HR numbers change. During a real and rigorous tilt table test your HR and BP are monitored continuously, not every couple of minutes - something you can't do at home unless you have a beat-by-beat BP machine. Those kind of readings associated with the readings obtained when they test your body's reaction to different substances that artificially increase or decrease your HR or your BP give the specialists a more complete and complex picture of what is going on.

For what it's worth, sometimes the TTT may be negative for someone with POTS as in some patients the symptoms wax and wane. If you were to check my vitals today, you'd never think I have POTS, yesterday was a different story though.

Best,

Alex

Yes I agree, that's why I said you need a doctor to verify everything and do more in depth testing. But, if you test it yourself and there's no actual postural tachycardia issues then why would you go to the doctor saying you think you have POTS in the first place? If you're feeling tired all the time and have other symptoms then fine, have yourself checked out but if there's no tachycardia upon standing then why in the world would you think it might be POTS?

Obviously a one off test may be negative, but if you're testing yourself with my method then try it for several days to get a good idea. If its always negative then almost certainly the problem lies elsewhere.

[thegron]

You all have made good points. I think you're all in agreement but don't realize it.

POTS itself is a syndrome, not a disease. So by definition it cannot technically have a "primary" cause. It is just a collection of symptoms that can be caused by various diseases/disorders. We have the terms "primary" and "secondary" POTS for one reason. We have found that a number of KNOWN diseases can cause POTS (like EDS and CFS) and therefore we call that "secondary" POTS. "Primary" POTS is just caused by some disease or diseases (probably autoimmune in nature) that we don't know much about. It is sort of like how we use the term "idiopathic" when we don't know what the heck the cause is. Idiopathic means "without cause" but really there is a cause, we just don't know it yet. So there ya go.

[kayjay]

POTS itself is a syndrome, not a disease. So by definition is cannot technically have a "primary" cause. It is just a collection of symptoms that can be caused by various diseases/disorders. We have the terms "primary" and "secondary" POTS for one reason. We have found that a number of KNOWN diseases can cause POTS (like EDS and CFS) and therefore we call that "secondary" POTS. "Primary" POTS is just caused by some disease or diseases (probably autoimmune in nature) that we don't know much about. It is sort of like how we use the term "idiopathic" when we don't know what the heck the cause is. Idiopathic means "without cause" but really there is a cause, we just don't know it yet. So there ya go.

Yes... This

[Guest Alex]

loot, 100% with you.

thegron, we're probably in agreement like you said, but both EDS and CFS are syndromes not diseases - collection of symptoms due to one cause or another. Also primary POTS actually means there is no other disease causing it, and while some drs call it primary, others call it idiopathic but they are one and the same. Oh and let's not forget the iatrogenic type of POTS.

Alex

[kayjay]

At this point- for me- the cause is not important. I'm interested in managing symptoms. It is interesting that some members have not been diagnosed with dysautonomia/pots.

It has been mentioned before, but many other conditions present with the same symptoms. I am comfortable with my pots diagnosis somewhat because extensive testing has ruled out other diagnosis. Drug use, dehydration, adrenal tumors, Multiple Scelrosis, Parkinson's, heart conditions, and kidney problems are just a few conditions that are excluded for a pots diagnosis.

Edit because I'm having connection problems- my point is for me a pots diagnosis was a process. I have a lot of confidence in my diagnosis at this point because of that process.

[loot]

Yes that's true, many things can be the cause of POTS. It was just my intention to point that out because the OP seemed to have confusion as to whether it was POTS or not causing the symptoms. There should never really be much confusion as to whether you have POTS or not. Maybe there can be confusion over whether your tiredness is caused by hashimoto's or CFS....but you can't confused POTS.

No matter how similar your symptoms may be to those with POTS, if you don't have the stand-up-and-your-heart-rate-goes-into-overdrive symptom....then POTS it is not.

[Guest Alex]

Right you are loot

Indeed there can be many causes for the brain fog, and POTS can be easily ruled out with by conducting a bunch of poor man ttt's.

Sorry for the edit, my tablet has been playing games with me today.

Alex

Edited October 8, 2013 by Alex