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Hyperadrenergic POTS
My daughter has Hyperadrenergic Postural Orthostatic Tachycardia Syndrome and I am just wondering if anyone else has this form of POTS. I would like any input as to what helps you with symptoms as she is having a rough time lately.
We are just so frustrated because she was doing better after starting Cymbalta and birth control pills as the combination seemed to be helping. She recently had her wisdom teeth removed and also got the flu and that may be in part the reason her symptoms got worse.
ANY suggestions would be most appreciated!
thank you,
Lynn:)
We are just so frustrated because she was doing better after starting Cymbalta and birth control pills as the combination seemed to be helping. She recently had her wisdom teeth removed and also got the flu and that may be in part the reason her symptoms got worse.
ANY suggestions would be most appreciated!
thank you,
Lynn:)
Thank you for you response. I didn't realize you could have both IST and POTS.. The EP I saw is supposed to be a specialsted in POTS so I thought It odd that he didn't do or suggest anything in the way of testing other than taking my BP laying down and standing up.
As far as work go my major issue is that I am an occupational therapy Assistant at a rehab nursing facility which is a very physical job. I find myself exhausted before the day is half through, pushing a patient down the hall feels more like running up stair half the time. I frequently am flushing and am short of breath.
I also happen to be the one who provides health insurance between my husband and I. I took a medical leave of absence this past summer due to fibro symptom flare ups and stress and am now going to take another for this and fibro.
I plan to try to use the time to de- stress as much as possible and focus on building an exercise program.
Thanks for listening.
As far as work go my major issue is that I am an occupational therapy Assistant at a rehab nursing facility which is a very physical job. I find myself exhausted before the day is half through, pushing a patient down the hall feels more like running up stair half the time. I frequently am flushing and am short of breath.
I also happen to be the one who provides health insurance between my husband and I. I took a medical leave of absence this past summer due to fibro symptom flare ups and stress and am now going to take another for this and fibro.
I plan to try to use the time to de- stress as much as possible and focus on building an exercise program.
Thanks for listening.
Welcome Kelly!
I've run across a physical therapist who seemed eager for me to be on the treadmill, though I told them of my orthostatic intolernce and wound up light headed after coming off of it. I got my heart rate up to her goal while she had someone watching me to make sure I was okay. I was not so eager and didn't go back. I had another person some years back (who was doing a stress test on a treadmill) say to me "I wouldn't go out and joing a gym tomorrow.) I have walked at a fairly easy pace on a treadmill here at home, but more recently, for right now, when I walk for exercise, typically walk around the house.
Basically, I think the main idea is not to get so deconditioned that your orthostatic intolerance (if that is what you indeed have, seeing as how the EP isn't sure) gets even more pronounced and worse.
I'm no doctor, but personally, since my heart rate has gotten up even higher than 152 just by standing up from sleeping without sitting on the edge first, I wouldn't think you need to get overly concerned about trying to get your heart rate to 152, unless the EP feels your heart is deconditioned? Walking the half hour three times a week, even if you feel it necessary to do it at a leisurely pace if you are getting winded and perhaps sweating can be a good thing.
My heart is considered in fine shape and reacts quickly to, what I assume from abnormal levels here and there, catecholamine stimulus. My body actually can overcompensate with the orthostatic problem with spiking my blood pressure with standing.
And, if he is not sure IST or POTS, an electrophysiolgist specializing in POTS should know how to differentiate the two, if anybody does. Of course, I think it is possible to have both.
I was diagnosed first with IST and secondly with POTS. IST, inappropriate sinus tachycardia, can happen whether you are resting or in an upright or standing position. It is not dependent on your position.
My POTS diagnosis was made by an EP by conducting a tilt table test, which demonstrated my heart rate climbing to a level that indicated I had that form of orthostatic intolerance.
An article by a POTS researcher Dr. at Vanderbilt University in Nashville states that another test (which I have never had, but believe I do have hyperadrenergic form of POTS) in diagnosing POTS is a standing plasma norepinephrine test. That norepinephrine level has to rise above a certain level in addition to heartrate climbing over 30 beats a minute with standing for the diagnosis.
If you don't have a more severe case than mine, while there are still difficulties with my situation, you learn to make little adjustments in habit that help you to function better, but I think it depends on severity of symptoms and your job as to how to function with your condition.
If you are passing out, as some do with POTS, or have a job where you have to get up quickly to perform assigned tasks rather than rising slowly from a sitting position, or have a job where you have to reach above your head a lot and your vision starts to leave, you might consider trying to file for disability (if you are fainting) or looking for a different kind of job.
What are your current difficulties on the job?
I've run across a physical therapist who seemed eager for me to be on the treadmill, though I told them of my orthostatic intolernce and wound up light headed after coming off of it. I got my heart rate up to her goal while she had someone watching me to make sure I was okay. I was not so eager and didn't go back. I had another person some years back (who was doing a stress test on a treadmill) say to me "I wouldn't go out and joing a gym tomorrow.) I have walked at a fairly easy pace on a treadmill here at home, but more recently, for right now, when I walk for exercise, typically walk around the house.
Basically, I think the main idea is not to get so deconditioned that your orthostatic intolerance (if that is what you indeed have, seeing as how the EP isn't sure) gets even more pronounced and worse.
I'm no doctor, but personally, since my heart rate has gotten up even higher than 152 just by standing up from sleeping without sitting on the edge first, I wouldn't think you need to get overly concerned about trying to get your heart rate to 152, unless the EP feels your heart is deconditioned? Walking the half hour three times a week, even if you feel it necessary to do it at a leisurely pace if you are getting winded and perhaps sweating can be a good thing.
My heart is considered in fine shape and reacts quickly to, what I assume from abnormal levels here and there, catecholamine stimulus. My body actually can overcompensate with the orthostatic problem with spiking my blood pressure with standing.
And, if he is not sure IST or POTS, an electrophysiolgist specializing in POTS should know how to differentiate the two, if anybody does. Of course, I think it is possible to have both.
I was diagnosed first with IST and secondly with POTS. IST, inappropriate sinus tachycardia, can happen whether you are resting or in an upright or standing position. It is not dependent on your position.
My POTS diagnosis was made by an EP by conducting a tilt table test, which demonstrated my heart rate climbing to a level that indicated I had that form of orthostatic intolerance.
An article by a POTS researcher Dr. at Vanderbilt University in Nashville states that another test (which I have never had, but believe I do have hyperadrenergic form of POTS) in diagnosing POTS is a standing plasma norepinephrine test. That norepinephrine level has to rise above a certain level in addition to heartrate climbing over 30 beats a minute with standing for the diagnosis.
If you don't have a more severe case than mine, while there are still difficulties with my situation, you learn to make little adjustments in habit that help you to function better, but I think it depends on severity of symptoms and your job as to how to function with your condition.
If you are passing out, as some do with POTS, or have a job where you have to get up quickly to perform assigned tasks rather than rising slowly from a sitting position, or have a job where you have to reach above your head a lot and your vision starts to leave, you might consider trying to file for disability (if you are fainting) or looking for a different kind of job.
What are your current difficulties on the job?
Hello,
I guess I can say I was blessed in that after having a 48 hr holter test the cardiologist referred me to his EP partner who specializes in POTS. I was actually surprised that the cardiologist suspected POTS as with the short research I had done I was sure I had IST. The EP however gave me an inconclusive diagnosis of either IST or POTS but is leaning towards H POTS. The more I have read about it the more I can see myself in the symptoms.
So after all that rambling here is my question; the EP wants to start off conservatively with an exercise program based on research of 30 min 3 x a week getting heart up to 152. Is this all that helpful for H POTS? And while I am trying this experiment how am I supposed to handle my ever increasing difficulties with working?
Sorry about my rambling..
Kelly
I guess I can say I was blessed in that after having a 48 hr holter test the cardiologist referred me to his EP partner who specializes in POTS. I was actually surprised that the cardiologist suspected POTS as with the short research I had done I was sure I had IST. The EP however gave me an inconclusive diagnosis of either IST or POTS but is leaning towards H POTS. The more I have read about it the more I can see myself in the symptoms.
So after all that rambling here is my question; the EP wants to start off conservatively with an exercise program based on research of 30 min 3 x a week getting heart up to 152. Is this all that helpful for H POTS? And while I am trying this experiment how am I supposed to handle my ever increasing difficulties with working?
Sorry about my rambling..
Kelly
You might want to try sending team 77 a private message, since this is such an old thread and they may not see your post.
MY WIFE DEVELOPED THIS AND I WOULD LIKE TO FIND OUT MORE ABOUT THIS TYPE OF TREATMENT -----RICHZ357
What helped me in the beginning was getting saline IV's as an outpt at our local hospital. Allowed me to somewhat function. I progressed to an integrative medicine MD who successfully treats and controls POTS using Vitamin C IV's. Don't ask me what all is in it but a bunch of vitamins/minerals. WORKS LIKE A CHARM!!!!!! He also added Monavie to my supplements and in 3 months my symptoms are GONE! I kept a journal with all of the things I tried if you want more information. I will be glad to help in any way! POTS is devastating and even my disability dropped me just b/c they didn't know anything about it!!!!! But, thank GOD I am back to normal and working again.
Let me know if I can help anyone in anyway get through the POTS journey!
Windy
Let me know if I can help anyone in anyway get through the POTS journey!
Windy
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