POTS??

Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, Aug 7, 2006.

  1. Kathleen12

    Kathleen12 New Member

    OK guys, here's another one I know has been posted on already but could not find much in detail about it by using the "search" option, so please forgive me for asking if it has already been dealt with here.

    I am back into another CFS flair and today I had a scheduled appt with my Endo for my Diabetes. When the nurse did the regular vitals, I asked her if she would mind checking my BP and pulse while I was standing. I knew there would be nothing really notable, but that is about the only thing that I have never had checked and could be the reason for this exhaustion and dizziness.

    She had no problem with my request and by the look in her eyes after she took the cuff off, I knew something was strange. She said that my BP didn't change significantly but it did drop, but my pulse went from 85 sitting to 120 when I stood. Is this a significant reading? I read a little about posturial tachycardia when I got home but could not find much info on how serious this is if that's something I have going on. I mentioned it to my Endo when he came in, but he said that was out of his specialty and that I need to mention this to my GP but he didn't seem too concerned. So should I?

    Thanks for any advice you can give me.
  2. HuffyMcT

    HuffyMcT New Member

    I was diagnosed with neurocardiogenic syncope after going through a tilt table test where my BP dropped to zero and my heart stopped for 12 seconds. NCS and POTS are dysautonomias ---I went to Vanderbilt University Medical Center in Tenn --- they specialize in dysautonomias----go to the ndrf website and get on to the discussion link and read the online book about POTS----it is very informative. If you do have this condition it will be diagnosed through a variety of tests including a TTT and sometimes medication can help.

    Dysautonomias sometimes always go along with CFS so says the new research.


    My best to you---it is a difficult situation.
  3. ABCDfamily

    ABCDfamily New Member

    It needs to be researched more. POTS is debilitating and you should get some treatment for it. I take beta blockers for mine.
  4. Kathleen12

    Kathleen12 New Member

    That info was just what I needed. I "googled" dysautonias and fortunatly learned that it doesn't appear to be life threatening, but I was discouraged in that there is really no "true" treatment for it except the old "trial and error". I may not even mention this to my gp because this is a small town in Mississippi and he'll probably just blow it off or,if I'm lucky, he'll send me for all kinds of tests and nothing will be found which is actually curable. I'll get another perscription for Altace which I've been on before for the Diabetes, but I'll still not be able to get off of this butt-sprung couch. Sorry for the pessimisom here, but I just lost all my earlier hope. Thank you two so much for the advice and support. I will get off my pity-pot now and will wake up tomorrow morning with a fresh outlook on all this.
  5. labrat

    labrat New Member

    You don't have to mention POTS, just say you get dizzy and exhausted when you stand often and ask to have pulse/BP tested when you stand up.

    Many, teens especially, with CFS have POTS and some are even misdiagnosed as having CFS when they really have POTS. There was a study at Johns Hopkins by a dr that used salt/water increase and various meds with some success.
  6. itreeit

    itreeit New Member

    I WAS DIAGNOSED WITH NEURALLY MEDIATED HYPOTENSION (POTS) IS VIRTUALLY THE SAME DISORDER. IT IS DIAGNOSED USING A TILT TABLE TEST. I WAS BOTH RELIEVED AND DISTRESSED WHEN HEARING THE DIAGNOSIS. IT HAS BEEN TWO YEARS SINCE THE DIAGNOSIS AND I AM STILL BATTLING SYMPTOMS BUT THRU TRIAL AND ERROR, THERE ARE A NUMBER OF GOOD MEDS THAT WILL HELP. IT MAY TAKE AWHILE TO FIND THE RIGHT COMBO OF MEDS, BUT DON'T GIVE UP HOPE. ONE THING THAT HAS HELPED CONSIDERABLE IS TO DRINK SOME SALT WATER RIGHT AFTER RISING IN THE A.M.
    THIS IS A RECOMMENDED PROTOCOL FROM SEVERAL NOTED NMH GURUS!!!!!
    DON'T GET DISCOURAGED!
  7. TeaBisqit

    TeaBisqit Member

    This has been one of my worst symptoms for years. I've had it so severe at times that I couldn't stand or sit up for more than a few seconds without it coming on. The last several months it's gotten better. I'm not sure if it's because I stopped taking Aciphex for my acid reflux, I switched to Pepcid AC. But I had also done a full month's treatment of taking Orange Oil capsules and that's what really seemed to somehow take away alot of the NMH/POTS. Ever since I took the Orange Oil, I don't get it as severe or as frequently. Orange Oil is a very powerful internal cleanser. And I'm still wondering if the NMH/POTS is actually caused by a parasite and the Orange Oil killed alot of it. That's my theory anyway. I still get lightheaded, just not as bad or as frequent.
  8. Kathleen12

    Kathleen12 New Member

    I'm just wondering.....if it IS pots and it gets treated and corrected, will the fatigue also be relieved? I mean, could this CFS be caused by POTS?

    I'm still forever searching for a fix for my exhaustion. I know that treatment will help with some of the dizziness and light headedness, but if I'm still exhausted, then what's the use in treating this?