Does anyone else have HyperAdrenergic POTS?

[rhonda1017]

Hi,

    I apreciate any insight or help with this question.  I am a 45 yr. old F that worked full-time as a kindergarten teacher, was active in my community, my church, and raising 2 teenagers as of February 08.  Then I got a virus and was in the hospital.  After the virus, my heart constantly raced.  At rest it was 100 beats per min.  If I moved or walked it went as high as 197 beats per min.  I was out of breath and had tremors extremely bad.  My blood pressure also goes up with any kind of movement.  I was in and out of hospitals for 7 weeks.  I wore a heart monitor for 24 hrs., had an echiocariagram, EKG, Stress Test, and then a Tilt Table Test.  I have now been diagnosed with HyperAdrenergic POTS(postural orthostatic tachycardia syndrome).  Everything I have read about it, says that this kind of POTS is genetically based and comes on gradual.  Mine did not.  It was overnight.  I am still having difficulties even with the medications.  Today after 5 minutes of walking & resting at therapy my blood pressure was 187/126 and my heart rate was 160.  Then I develop complete body tremors and if I don't sit down, I fall down.  I would greatly appreciate any assistance.  Thank you so much.

[team77]

Hey!  Yes I have!  The only thing I still have trouble with is shortness of breath when I exercise.  Other than that, I have recovered for now.  Do not know what the future holds though and that is the scary part.   It was a long hard road of taking lots of supplements and detoxing my body but it worked!  Would love to talk to you about it!  text me 2525327736

[stacey555]

How do you know you have adrenal insufficiency?  Why do you think it was the bc pills?  Im asking because I was on them for a year then had this horrible time with my adrenals/pots symptoms ever since, well that and a surgery but my adrenals should have been able to handle gallbladder surgery and they couldnt.

[francie0109]

Hi,  I was diagnosed a year ago with this type of POTS developing on a background of hypertension.  My BP's were similar to yours, with my highest being  when I was lying
down.  I first sought treatment for many of my symptoms, which included hypoglycemia and low BP's, six years ago. During this time I also began to develop significant swelling of my face, hands and legs.  At one point, the swelling of my  left leg was so severe that the ankle and toes were bruised and I was sent by my internist to the ER for a doppler. To make a long story short...after the symptoms worsened/changed/disappeared/came back differently etc...I was diagnosed with MV and Tricuspid Valve regurgitation.   I wore a holter monitor and was diagnosed with severe tachycardia and went on 100mgs. of Toporol XL.  I was put on diurretics (I was holding 6-8 pounds by evening every day) and 50mgs of hyzar.  I continued to worsen and my strength was on some days almost non-existent.  I was sent to a cardiologist who told me my tachycardia was not heart related, and every 50 year old has some regurgitation, but  my heart was in text-book good condition".   There were days I did nothing more than was absolutely necessary, and only by dint of sheer will!  At some point I was again sent to another cardiologist who assured me my heart was fine (although my father had died at age 48 of a massive coronary and my mother had had a pacemaker for uncontrollable arrythmias--I believe she is my genetic link to this condition)
but it sounded to him more of an endocrine issue.  The endocrinologist told me based on my medical history that I was having hyperadrenal episodes and prescribed a different beta blocker.  He called me two days later and told me he had researched my records, tests, etc and believed I had this type of POTS.  My husband e-mailed a doctor at Vanderbilt who told him I needed a specialist, but the specialty  could be either neurology, cardiology , etc. as long as it was someone who deals with POTS.  I was told I could be seen at Vanderbilt but I was looking for something closer to home.  I was referred to someone who agreed to see  me only after I filled out an eighteen page questionaire--to make certain I was infact dealing with this issue.  He diagnosed me with POTS and chronic fatigue and referred me to a doctor who continues to research autonomic dysfunctions and is therefore acutely aware of testing and treatments.  I had been on four different  beta blockers but it turns out that I break down a certain class of blockers, so he switched me to ZEBETA, 5 mgs. daily--and I was slowly back to normal for six months.  At the beginning of April I began to experience a recurrence of my symptoms and went back to see him.  He ordered a new series of tests.  Suprisingly (his word)  the medicine that worked so well was now causing a decrease in my cardiac output.  When I took half a pill daily, for about three weeks I began to feel better, when suddenly my BP was shooting up and the tachycardia, chest pains and shortness of breath started again.  I am now taking half the  beta blocker along with 50mgs of Cozar(Hyzar w/o the diuretic).  I just went to NYU(yesterday) and had a blood volume test yesterday because sometimes people with low plasma volumes display hyperadrenergic POTS.  If it turns out that volume levels are low, infusions of saline can help considerably.  My suggestion would be to find someone who knows the very specific tests to be applied to this specific kind of POTS.  I am currently on an upswing with more energy than the past few months.  My doctor spoke to someone at the Mayo clinic and they said they would be willing to see me--as I'm certain they would you.  I'm hoping that I'll remain stable for a few months again --but if not,I will definitly to go where they see a few like us a week instead of one of us every few years..

[rhonda1017]

Hi,

     I looked up Addison's Disease and I don't think that's what I have.  I don't have many of the symptoms related to it.  I have high blood pressure and constipation.  I also had an adrenal gland function test done in March and it came back normal.  Thanks for the info. though.  It gave me a place to look.

[halbashes]

I've noticed a couple of you talking about adrenal function, and so I wonder if you've ever heard of Addison's Disease.  This can cause symptoms like: dysautonomia, weight loss, salt cravings, etc.

[rhonda1017]

My family doctor thinks it's something to do with my adrenal glands, but I had a 24 hour urine test to check my adrenal function in March at Grand Rapids Hospital.  It came back normal.  That was when I was first diagnosed.  I have an appointment scheduled at the Cleveland Clinic on July 21st and an appointment at the MAYO Clinic in October.  My cardiologist set them up, because they both have Dysautonomia Research Labs and you see a team of doctors.  I'm hoping they can come up with something.  My tremors are making me so weak that I am having trouble opening doors and I couldn't even cut up a watermelon.  I had to have my son do it.  Thanks for your interest and comments.