Jump to content

Dysautonomia Vs. Pots


bebe127
 Share

Recommended Posts

Might be a dumb question, although I always tell my gems that there is no such thing, so here goes:

What is the difference between Dysautonomia and POTS. I'm sure I could look it up, but just wanted a take on it from those with experience. Of all the doctors I have seen, none of them have ever explained any of this to me. I have read that POTS is a form of Dysautonomia and that Dysautonomia is when our ANS is out of whack. Anything else I should know?

Hope everyone is having a happy, heathly, symptom (or at least as much as possible) free day!!

Bebe

Link to comment
Share on other sites

On my blog, I do have definitions via Dinet.org of POTS and Dysautonomia. Interestingly enough, I do not have OI, my blood pressure does not decrease upon standing, have never fainted, etc. In fact, my BP is all over the place (was at one time on meds for hypertension) and my heart rate fluctuates at any given time, sitting, standing or lying down. Basically, I feel as though I have the flu, a hangover, and menopause all at the same time. I have good days and bad days. It is seldom that heat bothers me as I love to sit in the hot tub and love even more to lay out by the pool. I live in a very hot, humid climate. Thus, my question. I'm so confused and have been for 3+ years now...

Link to comment
Share on other sites

I just had a consult at Vanderbilt, where the doctor explained that POTS is not really a diagnosis, as in a distinct condition with a clear treatment protocol. Rather, POTS is a symptom of autonomic dysfunction (I.e. dysautonomia) -- which can have many causes and take many forms. To treat the POTS symptoms, one ought to learn as much as possible about the underlying issue in the individual patient. My symptoms sound a lot like yours, and Vanderbilt's testing confirmed that my blood pressure goes UP when I'm upright. I have yet to hear back from them on what they think the underlying issue is, and the answer may well be that they do not know. Thus far, I seem to belong to the EDS/MCAS/hyperPOTS subtype that has had a lot of discussion on these boards.

Link to comment
Share on other sites

I think you will find as many definitions as the number of docs and patients you talk to. LOL But my understanding from my POTS doc at Mayo was that dysautonomia was a "big umbrella term" and POTS, NMH, etc were all more specific types of labels that fell under that big umbrella. In other words, dysautonomia indicates you have a dysfunctional autonomic nervous system. POTS, NMH, etc tells them more specifically in what manner that dysfunction is manifesting.

Link to comment
Share on other sites

Thanks for the responses. To both of you: Of all the dx's given to you, have you specifically asked for tests to determine these or did the dr. you were seeing suggest that you get tested? Of all the doctor's I've been to (which really aren't too many) none have ever suggested any other testing or that something else might be wrong. All the dx doctor told me is that I "probably" have POTS and that he didn't treat it. I am being treated, so to speak, by my GP that has a few other patients with POTS, but even he has never told me much about it, nor has he told me what kind I have or suggested any other testing. I'm just wondering if there is something else going on and maybe there would be a different protocol with meds (even though I don't like to take them). I guess I just want my "old" self back. I should be thankful that I am not as dabilitated as some and focus on the good things and my good days. Sigh...

Link to comment
Share on other sites

As far as getting diagnoses- I got my dysautonomia related ones from going to Cleveland Clinic and Mayo. I pursued the EDS thru my local doctor to see a geneticist because I had suspected it for years anyway. A lot of the other ones came from some test results that were found at CC and which they recommended be followed up locally which led to more tests et.

But with all the diagnoses....I'm still a long way from being my old self. Seem to be getting worse in many ways rather than better so not sure having the diagnoses help all that much. And I'm still feeling like there is something else going on that they're missing. :rolleyes:

Link to comment
Share on other sites

POTS is one of many issues that fall under Dysautonomia. In other words if you suffer from POTS you have a type of dysautonomia, however, you can have Dysautonomia and not suffer from POTS. (Inappropriate Sinus Tachycardia (and or Bradycardia), Orthrostaic Intolerance etc..)

Hope that helps ;)

http://justmildlymedicated.blogspot.com/

Link to comment
Share on other sites

I just had a consult at Vanderbilt, where the doctor explained that POTS is not really a diagnosis, as in a distinct condition with a clear treatment protocol. Rather, POTS is a symptom of autonomic dysfunction (I.e. dysautonomia) -- which can have many causes and take many forms. To treat the POTS symptoms, one ought to learn as much as possible about the underlying issue in the individual patient. My symptoms sound a lot like yours, and Vanderbilt's testing confirmed that my blood pressure goes UP when I'm upright. I have yet to hear back from them on what they think the underlying issue is, and the answer may well be that they do not know. Thus far, I seem to belong to the EDS/MCAS/hyperPOTS subtype that has had a lot of discussion on these boards.

the doctor explained that POTS is not really a diagnosis, as in a distinct condition with a clear treatment protocol. Rather, POTS is a symptom of autonomic dysfunction (I.e. dysautonomia) -- which can have many causes and take many forms.

That's about as well stated as any definition I've read...well said.

Link to comment
Share on other sites

My autonomic nervous system neurologist said that I have POTS, which explains many of the symptoms that I have; she said that my issues with my eyes and stomach might be a more general dysautonomia that's not POTS-specific.

My personal take is that dysautonomia means *anything* wacky with the ANS - this includes things like POTS, NCS, orthostatic hypotension, Shy-Drager, PAF, etc, and that POTS specifically refers to tachycardia associated with standing/sitting and resulting orthostatic intolerance; it seems to include many other things (hence syndrome) that don't seem to be due to tachycardia, etc (e.g. eye issues), but as to whether those are POTS-specific or more generalized dysautonomia is hard to say. POTS is heterogeneous enough that it's hard to make too many generalizations other than "standing tachycardia that is problematic and causes issues with standing upright for long" - not everyone is sensitive to heat, not everyone has nausea, not everyone has headaches, not everyone even has fatigue associated with it.

Link to comment
Share on other sites

What if its the opposite. If they are saying its not POTs. That I dont have enough of an increase in Heart rate, but I do have BP fluctuations and orthostatic 'symptoms' without passing out. I have some severe symptoms of Dysautonomia, but not POTs...then what its it? And how do I go about finding that out?

Link to comment
Share on other sites

Tracyf,

I was diagnosed with "it is probably" POTS. I have tachycardia daily and no triggers that I have noticed. It is not even necessarily when I stand, it happens randomly. My BP fluctuates as well usually to the hypertensive side, although I experience low BP as well. I do not have OI symptoms at all, and have not passed out, not even during my TTT. I often wonder if I even have POTS and if I don't, like you, I wonder what it is that I have. I too don't really know where to turn to find out. I am going to hopefully go see a new EP this spring that supposedly specialized in Dysautonomia. Maybe I'll get some answers there. Here's hoping that you find some answers too!! Wish I could give you some, but all I can do is tell you that you are not alone and to keep on keeping on. Feel better :)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...