POTS or CNS

[tonyad]

Hello to all of you :)  I have not posted on this board in
quite some time because the doctors were stearing (sp) me into another direction of dx.
Anyhow I am just wondering if anyone here has a dx of POTS or CNS?
They say that the two could be closely related to CFS?? I do not know. I am just trying to learn as much as I can.

I just had the Tilt Table Test done last week and they said it would probably take about 20 - 30 min to be able to see what was needed......Well, it only took me about 5 - 6 minutes before they stopped the test because of the findings.

Please tell me all that you can and what your experiences are....what to expect.....and so on..

Thank you in advance
Take Care,
~Tonya

[lvfrogs]

Hi Tonya,
Sorry it took so long for me to answer this. Been incredibly busy and extremely tired.
I have not had the tilt test. I will talk to my cardiologist about this and see what he says. I have good faith in him.  and have you talked to your doctor about your blurry vision? Let me know!

PlateletGal,
Thanks for the advice as always :)
Colleen

[PlateletGal]

For all of those people who have POTS... my advice is to consider seeing a neuro-chiropractor.

[tonyad]

HI there :)
I actually started out at my cardiologist then after 3 bouts of syncope landing me in the hospital, she referred me to an EP who then did the tilt test and dx.

You do not have to go to a EP for dx your cardiologist can dx. Is your cardio able to order a tilt test for you? or have you already done one?

I too was dx with Mitral Valve Prolapse w/ regurgitation (sp?) several years ago.
And now this. I pray that your doctor will either get you to someone  or will order the tilt test for you.

Good Luck and Keep me posted......Oh ya, What are your sx? Are they different from what you usually feel from the MVP?

Take Care,
~Tonya
ps,
please excuse any spelling and grammer errors as I am having a blurry vision day :)
I do not know why that comes and goes like it does...oh well....

[lvfrogs]

I am wondering which doctor you go to for this diagnosis? Your heart doctor? I have CFS and was recently diagnosed with Cardiac Spasms and Mitral Valve Prolapse. I believe that that when I was infected with the EBV 4 years ago, it has caused these problems. Anyway, just wondered. I am reading up on POTS and believe I have that also. What kind of treatment is there for that? Does anyone know, thanks!

[tonyad]

please forgive me as I wrote the lettering backwards...I do mean NCS (neurocardiogenic syncope) not CNS (central nervous system) DUH! Sorry for the confusion....

I have actually been hospitalized (3) times in the last (5) months for syncope which finally prompted the tilt test.

Now, from the rading that I have done, with POTS .....Yes, the heart rate increases upon standing or standing in one place for to long But, it can be either w/ or w/out orthostatic hypotension and the percentage is usually more prevalant the the b/p does not change a whole lot but it is basically the heart rate that the numbers start climbing (as mine does)

The doctor is staing that my dx is IST....I do not know how he has come up with this though because w/ that dx/ your heart rate (including resting) is always at least a 100 or over. Mine is not. And clearly my tilt test does not support this finding either.

I am new to all of this and just trying to learn as much as I can so thank you for any and all info that you give me as well as the others on this forum.

Have a great night,
~Tonya

[patsy10]

I am familiar with both but I know it as neurocardiogenic syncope.  To me CNS is central nervous system so I did not know what you are asking.

I have had POTS for years.  Whenever I get up from a sitting, squatting position my blood pressure drops a lot (60/40).  My heart rate speeds up and I see stars and feel faint.  I have gotten used to it so I expect it when I stand up.  I have never lost consciousness.

With neurocardiogenic syncope there is loss of consciousness.  Anyway there is treatment for this.  If you are diagnosed with this your doctor will recommend whatever treatment he or she feels is best.

My understanding is that whatever causes CFS such as bacteria or viruses damages the autonomic nervous system and this is why we get these conditions.  I can say that for me this is permanent.

[tonyad]

Hi patsy :)
Thanks for taking the time to look at my post.
CNS = cardioNeurogenic Syncope
POTS = Postural Orthostatic tachycardia Syndrome....  this is frequently associated with Chronic Fatigue syndrome.

They are both a of a type of Dysautonomia.  (autonomic dysfuntion)
~Tonya

[patsy10]

What do you mean by CNS?  

[tonyad]

Bumping this up in hopes someone will respond  :)
~Tonya