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Hi,

Though I have had this illness for a long time, I am new to the diagnosis and still learning about it. I guess my question is- what is the prognosis for dysautonomia? Do most people get worse? Has anyone ever died from this? I was told it is not a "life threatening disease" but rather a "life altering disease". I guess what really scares me is when my heart is racing and I have palp after palp, I'm dizzy, nauseated etc etc - This is not taxing to the body? I try to tell myself when it is happening that it is normal for us and my heart is not just going to stop beating. But I can't help but wonder how the heart takes all of this on. Can anyone offer any insights on this? Does anyone else think about this?

Thank you so much.

Susan

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Hi, Susan. I think at some point nearly all of us have had fears regarding whether or not the disease is terminal and what type of damage is being done to our heart. Generally speaking, POTS is not life threatening and does not have long-term effect (meaning structural damage) to the heart. Some discussion has been done on the forum so you might want to search that particular topic.

Other types of dysautonomia can cause damage or be terminal. These are the rarer types which fall under the MSA category and it also is dependent on any other coexisting problems. For instance, I have various structural and heart rhythm problems in addition to my dysautonomia (which is NOT POTS) so my prognosis is different than the average forum member.

If what you are looking at is "regular old POTS" (WHATEVER that is!!!), generally, there is not heart damage and it is not life threatening but life altering as you stated. Good luck and I hope this makes sense!

Carmen

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hi susan,

i think carmen is right and that we've all been there. i think it's because we all fear to die and so much is unknown about dysautonomia. i remember that every time i went to see my neuro and talked to him about a new problem he answered: oh yes, that's the pots. so finally i thought that when i would die because of this, he would tell my husband: oh by the way that's the pots too.

people don't die of pots but can have a pretty rough life. but there are people living an almost normal life as well. so i hope for the best and always try to look at the bright side!

about the damage that could or couldn't be done to the heart. my cardio did a heartcat and told me that my heart is very strong and healthy, that made me smile as i felt proud about my heart!!! i take metoprolol to keep the heartrate stable. that way there aren't arythmia's (sp???) so there can't be any damage done.

hope this helps you (i'm very brainfogged today so i hope i make sense),

corina :)

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I've only had one doctor tell me POTS could be terminal. He was the first one I went to see when I got sick, an electrophysiologyist in Hawaii (when I was still living there). He said that if a person were to have severe POTS symptoms like mine for 20-30 years or more, eventually he assumed they would develop cardiomyopathy (heart failure), and if it wasn't corrected, could lead to death.

When I've asked POTS experts about this they shrug it off, saying "you won't be sick that long". So I'm not sure what to think. Most people you'll talk to will say that POTS is not life-treatening. :)

For now, I try not to worry about the future and live one day at a time. It seems to help.

Cheers,

Lauren

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Usually POTS itself is not terminal, but the complications can be. Just be careful and stay on top of ALL your health problems, because POTS can cause sort of "off-shoot" problems that can be terminal if you don't take care of them. I think it also depends on the type of POTS - I have hyperadrenergic POTS, and a lot of my friends with this have had much more serious health complications than people with other forms of POTS.

If you're careful you should be fine, though!! And don't forget to enjoy what you have! Good luck! :)

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