Upon standing, walking, bending, etc. my HR increases into the 150 -170s'. My B/P remains normal ( in low range for me). The 'fight or flight' response is triggered by the ANS upon my position change! All rx treatment has failed. Bottomed out my B/P even in the smallest of dosing. Excellent genius MD for years following me exhausted all measures and sent to Research Center to no avail. Last weekend of December 2013 ended my career as my body could go no longer. I have remained always POSITIVE as this is who I am. Knowing there is a REASON for EVERYTHING and do not question this. My MD has only 4 other pt's with this d/o all of which can tolerate rx therapy. So I am the 'RARITY IN THE RARE'! Go figure ... right! LOL Just hoping someone, perhaps may have some knowledge of this CONDITION! There is so little to NONE really to be found upon researching. I would greatly appreciate any assistance or information regarding this issue. Bless You All!
Sincerest Gratitude,
YaYaMermaid64
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YaYaMermaid64
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I would advise you to check out the correlation between Adrenal gland Fatigue and it causing PPS. Ive had it since 2006, and nothing has helped. I fight it with my faith in God.
What all have you tried? I have an excellent 'Genius' MD! He has only 4 other patients with this. Although it is extremely RARE.. I'm a "Rarity in the RARE" and am incapable of tolerating the meds (even in the lowest of dosing). However, the others have been helped! I am so sorry you are not having success the same as myself. I was just curious as to what 'treatments' have been tried for you and not worked. Thank you so much for your response!! I have felt as though I was the ONLY ONE in the World with this and unable to withstand any treatment... Bless You!
I will certainly check this out. However I do believe it has come up several times. I am aware of this being a Dysfunction of the ANS ( Autonomic Nervous System) so it does not surprise me that PPS would fall under Dysautonomia. Thanks so much for your replies. I sure hope you respond back with what all treatments you've tried. I sure would like to compare them with ALL the ones I've tried!! No telling.. we may be able to help one another out of all this!! Remain Blessed
My sister and I where diagnosed about 4 years ago. No one knows anything about it. Very little online research. And more extremely rare for it to run in families. It did explain a lot of each of us. Put on amatriptaline for a while. No real help. Just living with it. My mother has neropothy in her legs. My sister also has greater transposition of the greater vessels. A heart condition. She is 38 I am 33.
I've tried the amitryptaline as well.. however it Bottomed Out my Blood Pressure as with all Rx available for treatment. (My body for some reason is SUPER SENSITIVE to the medicines even in the smallest of doses) My Blood Pressure usually runs low anyway low 90's over low 60's and my Heart Rate USE to run LOW in the high 50's to mid 60's .. I was very athletic the majority of my life which hold true for these values! However... NOW .. anytime I'm NOT SITTING my HEART RATE STARTS CLIMBING!! Just throwing the bed covers up (not making the bed mind you.. and Brushing my Teeth ONLY .. not even washing my face = HEART RATE OF 150's) I have to schedule appointments and really watch my calendar...!! I only shampoo/condition my hair every 10 days!! If I have an event.. Funeral, Wedding etc.. and have to do the WHOLE DEAL (shampoo/condition nails make-up dress nice) I usually start the day before with the SHOWER.. may try doing Nails before Bedtime?? However... It takes approximately 4-5 hours if I do it all (except nails) the Day Of... having to sit so much and get my Heart Rate Back Down!! By the time I leave (actually get into the car) My body has been through a MARATHON!! I have to use a 'shower chair' when I do shower to keep from fainting from standing so long (Heart Rate goes to the 165-170's) .. Use a Walker with a seat (has brakes on it) due to lack of ability to walk any distance with the Longer I'm standing/walking the Higher my Heart Rate Gets = Shortness of Breath. My MD is a GENIUS truly (reminds me of 'Dr. House') .. This has been a progressive issue which now has left me unable to work and CERTAINLY A MAJOR CHANGE IN QUALITY OF LIFE!! Decrease in ADL's etc.. However I remain Positive in Knowing there are much far worse than myself. Pace myself closely while remaining Grateful and Blessed for Each and Every Day Given. *Midodrine is an Rx that actually was the ONLY RX that ever helped over all these years... It worked for a little over 1 and 1/2 years and then just suddenly STOPPED! Wow.. right? We don't know why! Max Dosing even as well as reintroduced it two years later just to try it again... and NO GO! However.. Out of ALL and I do mean ALL THE MEDICINES attempted... this is the ONLY ONE THAT HELPED ME! So I thought I would share! Again remember I have no HIGH BLOOD PRESSURE ISSUES which allowed me to be a canidate for the medicine. Please do let me know if and what Medicines you have tried? I would like to compare to my LIST...
I've tried the amitryptaline as well.. however it Bottomed Out my Blood Pressure as with all Rx available for treatment. (My body for some reason is SUPER SENSITIVE to the medicines even in the smallest of doses) My Blood Pressure usually runs low anyway low 90's over low 60's and my Heart Rate USE to run LOW in the high 50's to mid 60's .. I was very athletic the majority of my life which hold true for these values! However... NOW .. anytime I'm NOT SITTING my HEART RATE STARTS CLIMBING!! Just throwing the bed covers up (not making the bed mind you.. and Brushing my Teeth ONLY .. not even washing my face = HEART RATE OF 150's) I have to schedule appointments and really watch my calendar...!! I only shampoo/condition my hair every 10 days!! If I have an event.. Funeral, Wedding etc.. and have to do the WHOLE DEAL (shampoo/condition nails make-up dress nice) I usually start the day before with the SHOWER.. may try doing Nails before Bedtime?? However... It takes approximately 4-5 hours if I do it all (except nails) the Day Of... having to sit so much and get my Heart Rate Back Down!! By the time I leave (actually get into the car) My body has been through a MARATHON!! I have to use a 'shower chair' when I do shower to keep from fainting from standing so long (Heart Rate goes to the 165-170's) .. Use a Walker with a seat (has brakes on it) due to lack of ability to walk any distance with the Longer I'm standing/walking the Higher my Heart Rate Gets = Shortness of Breath. My MD is a GENIUS truly (reminds me of 'Dr. House') .. This has been a progressive issue which now has left me unable to work and CERTAINLY A MAJOR CHANGE IN QUALITY OF LIFE!! Decrease in ADL's etc.. However I remain Positive in Knowing there are much far worse than myself. Pace myself closely while remaining Grateful and Blessed for Each and Every Day Given. *Midodrine is an Rx that actually was the ONLY RX that ever helped over all these years... It worked for a little over 1 and 1/2 years and then just suddenly STOPPED! Wow.. right? We don't know why! Max Dosing even as well as reintroduced it two years later just to try it again... and NO GO! However.. Out of ALL and I do mean ALL THE MEDICINES attempted... this is the ONLY ONE THAT HELPED ME! So I thought I would share! Again remember I have no HIGH BLOOD PRESSURE ISSUES which allowed me to be a canidate for the medicine. Please do let me know if and what Medicines you have tried? I would like to compare to my LIST...
Hi. Hopefully you will get this. Contact Dr. Nemechek in Arizona. He specializes in your condition and other autonomic nervous system disorders. There is also a Facebook page for his protocols: facebook.com/groups/TheAdul...
Hey there! I have PPS as well and it is frustrating to have something so rare. I feel like no one has heard of it. But thankfully I am so much better now! I used to be like you, unable to do anything because of an increase in blood pressure and pulse, among other things. What I find out is that usually PPS is caused by an underlying condition. For me, I got treated for my Endometriosis and quit work to reduce stress and after a while my symptoms reduced dramatically. You wouldn't even know today that I have anything wrong. I am finally able to live my life! It's worth checking out to see if an underlying disease could be causing you ANS to have problems, because with PPS especially, treatment is very difficult because of your two sides of the ANS always competing and fighting each other. Also, management by change in lifestyle isn't always possible, but it helped me to reduce stress. Hope this helps!
Hey, My Dr is … Dr Gary Murray (Cardiology) You should be able to look him up (google perhaps) He’s beyond Intelligent and is known and recognized Internationally.
I referred a PT w to a cardiologist who in 1996 discovered a treatment to control the BP + HR from being too high to too low. PT had surgery to correct this order. Its done in US, not sure if its done in CN or not. Probably is by now. Pt told me about 3 years ago, she was glad I referred her to that doctor as her heart rate and BP have been under control ever since.
You can message me for information on here if you like.
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