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Causes of sudden onset POTS

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@Kerry Sue - when you have your cardiology appointment ask to have orthostatic vital signs done. They check your HR and BP sitting and standing after 1 minute and if your HR goes up more than 30 BPM without a drop in BP it may be POTS. If that is the case your cardiologist might order a Tilt table test to find out if you have dysautonomia. 

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3 hours ago, Pistol said:

@Kerry Sue - when you have your cardiology appointment ask to have orthostatic vital signs done. They check your HR and BP sitting and standing after 1 minute and if your HR goes up more than 30 BPM without a drop in BP it may be POTS. If that is the case your cardiologist might order a Tilt table test to find out if you have dysautonomia. 

Thank you.  I am getting a list of questions and concerns ready for my appointment so I don't miss anything.  I appreciate the tips. 

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On 7/28/2019 at 5:24 PM, RichGotsPots said:

In order to understand why Dysautonomia is always caused by something you need to understand how the Autonomic nervous system works. 1st there are several parts in several locations. From the Brain stem, down the spine, to unprotected wires (nerves) that branch off to all the organs of the body. These branches are held in place and woven through connective tissue.  Virtually anything that can damage connective tissue can damage Autonomic nerves. Unfortunately technology still does not have an adequate way to view these nerves. Many years ago I tried to solicit a medical tech university to work on it and I did not get very far. They do not see the urgency of such a device because so few people are diagnosed or rather so many are undiagnosed. Anyway that damage probably accounts for most Dysautonomia but not all maybe 70%. The other parts are chemical, spine and brain and they affect neurotransmitter dysfunction, structural abnormalities or injuries, ect...  So with Autoimmune Disease they are a type of Connective Tissue Disease. Ehlers-Danlos Syndrome or EDS is a Genetic Connective Tissue Disease. Infections like Lyme disease can damage, you guessed it, connective tissue. Same deal with toxins, parasites, and so on. Surgery can damage it too. Then there are people have hormonal disease like Diabetes type 2, Addison’s disease, thyroid disease and this interferes with Autonomic chemicals. Then there are people who get injured, surgeries, pregnancies, chairi malformation, ect.. and they may have had some damage to their spine, Brain stem or the autonomic structures. Then there is Mitochondrial Disease altogether different from the above. It is a genetic disorder that affect energy in the body. Not just physical energy but electrical signals and power. 

So you see there is not just one group of things that causes Dysautonomia. Dysautonomias are major symptoms of other illnesses. But since those other illnesses have all different specialist they usually overlook the Autonomic symptoms or worse blow them off. It’s slowly starting to gain some attention, but not enough.

It all starts with a good Dysautonomia work up and unfortunately doctors have no guidelines about that yet.  And then it should be followed by too university hospital specialist in virtually every field doing biopsies and very thorough testing for other illnesses.. 

This is why I'm looking for the root cause and not seeing an autonomic specialist yet at this time. An autonomic specialist will treat the pots symptoms, and if he can tell me exactly what's going on that would be fine. If you gave me a medicine to take and it got rid of most of my pots symptoms and was able to mask them that would be great, but then when my white blood cells go back up, that medication is no longer going to work. And switching medications to try something else might work for a while, but then if the medical condition acts up again that medication will no longer work. . I still have a medical condition going on. My white blood cell count has been at 12 and 13 for 2 years. My body has been showing an inflammation that has been going on that probably triggered my pots. All these times I've been in the hospital when they give me antibiotics and my white blood cell count comes down to 8 or 9, my blood pressure stays at 120 over 70, and I could stand and walk and my heart rate is only about 100 105. When I'm off on antibiotics and my white blood cell count goes up showing an inflammation in my body, my blood pressure drops too 80 / 60, and my heart rate goes to 140. I don't believe I will be able to control my pots until the medical condition that's causing my body to change the chemistry and give false signals to the nerves is found.

20190801_090546.jpg

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@dannyg - it sounds like you have a lot of health problems, so determining what exactly is going on with you may - or may not - help your POTS. But I would like to emphasize on the first sentence of your quote: AUTONOMIC NERVOUS SYSTEM DISORDERS CAN OCCUR ALONE OR AS A RESULT OF ANOTHER DISEASE. Keep in mind that for many of us our bodies are perfectly healthy, it is simply our ANS that is malfunctioning. I hope they will be able to determine what is causing your many health problems, treat them and hopefully your POTS symptoms will improve as well. Best wishes!!!!

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@Pistol and @Outaker  My appointment yesterday went well I guess.  I did show my cardiologist the blood pressure and heart rate readings I have been keeping while lying and standing.  He agreed that my heart rate readings showed a big increase upon standing.  He recommended that for 2 months I ride a stationary bike 30 min a day to strengthen my leg muscles.  I was also given a prescription for compression stockings.  The cardiologist told me back in May that he thinks my increased heart rate is due to deconditioning.  That seemed to be what he still thinks now.  However, he told me that if doing this physical activity for 2 months brings no improvement to any of my symptoms he will refer me to an EP doctor for further testing for POTS. I am going to comply the best I can and hope for some improvement.  I just wanted to give an update.  I hope y'all are having a good day.  

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@Kerry Sue - thank you for keeping us posted! I think it could be helpful for you to follow your doctors advice. It is a known fact that inactivity can worsen - or even cause - POTS symptoms. Literature also recommends aerobic exercise 3 times a week to improve symptoms and compression garments are a tried and true treatment. So - good luck, try the best you can to exercise regularly and notify your cardiologist if this does not help you!!!!!

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2 hours ago, Pistol said:

@Kerry Sue - thank you for keeping us posted! I think it could be helpful for you to follow your doctors advice. It is a known fact that inactivity can worsen - or even cause - POTS symptoms. Literature also recommends aerobic exercise 3 times a week to improve symptoms and compression garments are a tried and true treatment. So - good luck, try the best you can to exercise regularly and notify your cardiologist if this does not help you!!!!!

Absolutely!  Thank you, I am willing to do anything to feel better.  I found this exercise program online tailored specifically to POTS patients.  I don't know if it is well known or not but here is a link to see it.  If it helps someone to improve their health then I am happy.  This is the link for anyone who might be interested. http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

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On 8/2/2019 at 1:36 PM, Pistol said:

@Kerry Sue It is a known fact that inactivity can worsen or even cause - POTS symptoms

Are you suggesting that deconditioning can cause pots? As in, no other issue found and its only due to deconditioning? A little bit like what astronauts have when they come back from space?

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@whoami - yes, deconditioning is a "normal" cause of POTS and can be rectified by slow recondtioning. Ruling out deconditioning is a must in diagnosing POTS. 

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1 hour ago, Pistol said:

@whoami - yes, deconditioning is a "normal" cause of POTS and can be rectified by slow recondtioning. Ruling out deconditioning is a must in diagnosing POTS. 

Interesting. Thank you

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The difference is though that people who have been in space or bedrest but are otherwise healthy quickly get back to normal once they resume activity. Those whose symptoms are due to an underlying illness do not. Also complicating things is the fact that anyone who can't stand for passing out quickly becomes deconditioned, & that has usually happened by the time they get diagnosed with POTS or dys. 

It is then often wrongly assumed that the deconditioning is the cause rather than the result.

B xxx

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4 hours ago, bombsh3ll said:

The difference is though that people who have been in space or bedrest but are otherwise healthy quickly get back to normal once they resume activity. Those whose symptoms are due to an underlying illness do not. Also complicating things is the fact that anyone who can't stand for passing out quickly becomes deconditioned, & that has usually happened by the time they get diagnosed with POTS or dys. 

It is then often wrongly assumed that the deconditioning is the cause rather than the result.

B xxx

In my case, i am still able to go hiking / taking long walks. Its just some days my symptoms seems worst.

In any case, im still undergoing tests so.. Yeah. I too feel like something bigger is at play, but it would be such a great thing if it was only deconditioning.


The only thing that makes me think deconditioning is a possibility is the fact that I've been sitting for pretty much every day (12+ hours) for the last 7 years due to my job / hobbies.

Time will tell

 

 

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8 hours ago, whoami said:

The only thing that makes me think deconditioning is a possibility is the fact that I've been sitting for pretty much every day (12+ hours) for the last 7 years due to my job / hobbies.

So has most of the population in developed countries, so following that theme everyone should have it!

There are also many other people (myself included) who were very active pre-illness & had a sudden onset. I really do not buy the deconditioning theory, nevertheless exercise can be beneficial.

B xxx

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8 hours ago, whoami said:

The only thing that makes me think deconditioning is a possibility is the fact that I've been sitting for pretty much every day (12+ hours) for the last 7 years due to my job / hobbies.

@whoami - there is a difference between deconditioning and being out of shape. Deconditioniing would be happening if you are bedridden for a long time, as in recovering from illness or surgery. Simply being inactive would not mean you are deconditioned. However -  anyone with a sedentary life style should exercise frequently, at least 3 times a week, in order to be healthy, exercise helps with the cardio-vascular system and circulation as well as BP. 

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31 minutes ago, Pistol said:

@whoami - there is a difference between deconditioning and being out of shape. Deconditioniing would be happening if you are bedridden for a long time, as in recovering from illness or surgery. Simply being inactive would not mean you are deconditioned. However -  anyone with a sedentary life style should exercise frequently, at least 3 times a week, in order to be healthy, exercise helps with the cardio-vascular system and circulation as well as BP. 

Right. I guess i had my hopes up for a second.

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20 hours ago, Kerry Sue said:

That is very easy to do when we are so desparate to find an answer and get back to living a normal happy life!  I hope you can figure out whats going on and fix it.  🙂

Thanks i appreciate it. I hope it improves for you too.

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