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Does anyone else have HyperAdrenergic POTS?
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Does anyone else have HyperAdrenergic POTS?

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.
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Avatar_n_tn
I just heard about this condition the other day on this site.  I do believe this is what I have because I have every symptom.  You think you are going to die.  My symptoms came on overnight after a surgery I had.  It has been a year.  I even had a heart cath.  Although my doctors have not called it pots because not many of them know about it they do agree that my adrenal system is in hyperactivity causing my autonomic nerveos systemto be off.  We are trying cymbalta it has been 4 days and I can breate much better all day.  I know someone else that had it severly and cymbalta helped her also hers came on suddenly after a car accident.  They really dont know much about it .  try these web sites.  the cymbalta supposedly calms down the hyperactivity in the adrenal feedbck mechanism.
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Avatar_n_tn
www.potsplace.org

I guess what you have is pots the underlying cause is the hyperadrenals,it makes sense.Your body went into fight or flight mode when you had the virus and it cant calm down.  I should have been a doctor.  I was so opposed to starting the cymbalta I cant believe how it has helped.  I will write you more sites if I find them.  What other symptoms do you have?
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492869_tn?1285022533
I'm sorry to hear about your POTS symptoms, are you currently taking any medication to help with treatment?  If your blood pressure is normally high, then you might want to ask your doctor about a Beta Blocker.
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Avatar_f_tn
Hi!
    
     Thanks for your replies.  You asked what other symptoms I had.  I have tingling in both arms, legs, feet, and hands.  My left-side is much worse then my right side.  When I am trying to do things, like fold clothes or cook supper or even hold a phone, my left limbs will go numb and sometimes my right ones will too.  When I am walking, I will have sweat dripping from my head and neck, but the rest of my body has goosebumps and I am shivering.  When the therapist felt my head and then by body, she said it was about a 20 degree difference.  I have severe tremors.  It started out just in my hands and now has traveled throughout my body.  I also get body twitches.  When I am trying to sleep or rest, different parts of my body will just twitch severely.  Sometimes, my arm will fly up into the air, other times it might be my whole body and I shake the bed.  I have ringing in the ears and sometimes have trouble hearing for 2-3 minutes.  It's like everyone is talking far, far away.  I many other symptoms, but I don't want to take all of your time.  The doctor has me on 60 mg. of Cymbalta, .04 mg. of Clonidine, and 1 mg of Xanex at bedtime to help me sleep.  I did not have high blood pressure until the POTS.  I used to have a blood pressure of 117/68.  I have tried 4 Beta-Blockers and all of them have put me in the hospital with heart attack symptoms, the last one by ambulance.  It took 3 nitro pills and a nitro drip to bring me out of the last one.  The ones I have used were:  Coreg, Propanolol, Tenormin, & Lopressor.  So, needless to say, I am a leery of Beta-Blockers at this point.  I appreciate all of your support and help in this matter.  Thanks.  Rhonda  
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Avatar_n_tn
Have you lost or gained alot of weight?
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Avatar_f_tn
Hi again,

    I have lost about 40 pounds since I have been sick.  I have trouble eating and am not hungry.  I make myself eat at least one meal a day.  I think it's the medication that makes me feel full all of the time.  I didn't feel like this until after I started taking the meds.  So, I guess I have lost a lot of weight since February, but prior to that, no.
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My weight is average.  My daughters weight varies drastically depending on medication.  She can weigh anywhere from 110 to 180.  Her doctors like her to stay at 130.
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Avatar_n_tn
Do the doctors say this is something to do with your adrenals?
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Avatar_f_tn
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.  
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492869_tn?1285022533
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.
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Avatar_f_tn
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.
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Avatar_f_tn
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..
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Avatar_f_tn
I was recently diagnosed with POTS (June 08) after an acute reaction to the Birth Control Pill YAZ.  There are many many women who are having the same reaction to YAZ as I did and DO NOT recommend that pill.  There are others that work much better.  My reaction almost shut down my adrenals and have left me with adrenal insufficiency and POTS.  I went through all of the tests (tilt table, stress, EKG, echo etc) and was told the only thing that was abnormal was the tilt table.  POTS is new and not alot of people understand it.  I do get the saline therapy and it helps TREMENDOUSLY.  I used to get one bag per week and now I can go about 4 to 5 weeks in between visits.  My general MD calls over to the outpatient surgery and they give me the IV.  I cannot tell you how much better i feel.  My MD explained to me that you get internally dehydrated from the adrenals sending the fight or flight to the heart and causes the heart racing/palpitations.  When my heart rate will not stay below 100/105 when I am up walking around, then I know it is time to go get a bag of saline.  After the bag, my heart rate stays between 70 and 90 when I am up and around.  The highest my heart typically gets not is 120/125 and that is on a bad day.  I am on 25mg of Toprol XL which is down from 50 mg.  I want off the beta blocker so I am trying other things.
Alot of you are talking about muscle twitching... my limited understanding is that  heart palps/racing and muscle twitching are both related to a magnesium and possible calcium deficiency.  Alot of people I have talked with that had muscle twitching and some literally would jump so bad they would fall out of bed, have had tremendous results from taking a magnesium and calcium supplement.  Liquids are best.  I have been referred to a site that helped these people.  I have ordered mine today.  We will see.  If you want to check it out the web address is:

http://www.best-magnesium-citrate.com  
No MLM and I have no compensation or anything related to this site.  I am just trying it myself to see if I can get off of the beta blocker and control the palps/racing.  I am also taking IV vitamin therapy through Dr. Pittman in Raleigh, NC.  His website is:  http://www.carolinacenter.com/index.php
POTS and adrenal insufficiency are not listed on his website, but he is very familiar with both and they have treated many pts. with POTS with SUCCESS!!!!!  If you can't get to Raleigh, maybe he knows of another MD like him in your area.  He is very, very thorough. He is an MD, but uses natural medicine and vitamin therapy as well.  AWESOME PLACE.  

Hope this helps someone!  -Windy

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Avatar_n_tn
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.
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Avatar_m_tn
Windy, I know this post was a long time ago but I have recently found 4 other girls besides myself that have been diagnosed with POTS.  All of us were previously using YAZ. Have you improved at all since 2008?
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Avatar_f_tn
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
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Avatar_m_tn
Dear everyone!  Wow!  What an awful time so many of you have been through!  I shall stop complaining about my own problems!  I did have a complete health collapse twenty years ago where it seemed like everything in my body that could go wrong went wrong.  I had a lot of incompetent doctors and several surgeries, but it turned out everything was being caused by chronic idiopathic angioedema, which none of my doctors knew about.  It was an awful several years, though, so I thoroughly sympathize with how you are feeling.  

I was diagnosed with hyperadrenergic (great, spell check put in the spelling because I had no clue!) dysautonomia two years ago.  Now that I know about it I recognize having had it forever.  I can't recommend the specialists at Vanderbilt too highly.  I see Dr. Emily Kurtz, a cardiologist.  She has me taking two 20 mg, of propranolol a day, one am and one pm.  I, too, tried to start taking loads of magnesium and tried to slowly get off the beta blockers.  It was disastrous!  My fatigue got so much worse and I had to get back on them.  She said that this gave us some good information because it showed that the fatigue from the tachycardia (which I experience with every movement)  is worse than the fatigue the beta blockers cause.  My functional medicine doctor,who sent me to Dr. Kurtz says that magnesium is always a good thing and most people need it.  He said to use it until I start to have "the runs" and then to back my dosage down.  I am also applying Ancient Minerals magnesium lotion to my feet and legs at night.  It stings so that's why I'm not putting it anywhere else.  

For all of you, I would suggest that you research to find the Autonomic Disorders specialist near you,  there is one at Vanderbilt that Dr. Kurtz consulted with for my diagnosis.  She is getting me into see him because I'm still having other symptoms.

As to the saline IVs, I had not heard of,that.  But I do know that for some reason, we cannot keep our blood volume at steady levels.  A drop in blood volume can cause our blood pressure to drop bringing on an episode that can knock me, anyway, out for several days.  I have to just eat lots of salt and drink lots of water.  Sometimes I can feel it coming on and try to eat a lot of salt and drink a lot of water, but by the time I feel it happening it's usually too late.  It's the episodes like that and the episodes of weakness that bother me the most.  

I found a good website by a woman with dysautonomia.  I can't think of the site at the moment, bit it believe the title is Dysautonomia:   Living with a Chronic a Disease.  Also, for all of,you I would recommend that you read an old book called Anatomy of an Illness by Norman Cousins.  It is fabulous for anyone with any sort of chronic illness.  His main point is that YOU have to become the expert in your illness.  That we can't expect doctors to be experts in every form of illness and every way it manifests.  So you have to become your own expert.  It is what got me out of the complete health collapse I had twenty years ago.  

Well ... that's all I got!  Except one last thing.  Apparently it's not a good idea to eat a lot of kettle chips and french fries to keep your blood volume high!  Ha! I realized that after I gained about five pounds!!
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