Is POTS fatal?

[cbhowell]

I think i may have POTS and I was wondering if it is terminal? Also, are beta blockers dangerous? It seems that with POTS the body, needs the heart to beat fast to make up for the loss in blood pressure.

[MightyMouse]

No, POTS is not terminal, and in most people it is not degenerative. There are several disorders related to POTS that can be terminal, including MSA (multisystem atrophy), PAF (pure autonomic failure), FD (familial dysautonomia).

No, beta blockers are not inherently dangerous to those with POTS. Many on this forum are currently taking beta blockers. The only concern with beta blocker and POTS would be to drop the blood pressure too low and inadvertantly make the symptoms worse.

You may find a great deal of useful information in the primary sections of the DINET site. Please see:

POTS overview:

http://www.dinet.org/pots_an_overview.htm

Treatments (what helps alleviate symptoms):

http://www.dinet.org/what_helps.htm

And, what to avoid:

http://www.dinet.org/what_to_avoid.htm

Nina

[Sak]

No, POTS is not terminal, and in most people it is not degenerative. There are several disorders related to POTS that can be terminal, including MSA (multisystem atrophy), PAF (pure autonomic failure), FD (familial dysautonomia).

No, beta blockers are not inherently dangerous to those with POTS. Many on this forum are currently taking beta blockers. The only concern with beta blocker and POTS would be to drop the blood pressure too low and inadvertantly make the symptoms worse.

You may find a great deal of useful information in the primary sections of the DINET site. Please see:

POTS overview:

http://www.dinet.org/pots_an_overview.htm

Treatments (what helps alleviate symptoms):

http://www.dinet.org/what_helps.htm

And, what to avoid:

http://www.dinet.org/what_to_avoid.htm

Nina

I suspect the suicide rate among POTS people is similar to that of CFS and other dysautonomias, so in that sense it can be fatal. It can destroy lifestyle, and if your work is highly physical or intensely mental, it can take everything from you. For a long time it did me; for most of my twenties, I've been a fraction of what I could have been. I had to take time from college (due to it, and also to bipolar disorder). I feel like some of my best years have been stolen. I'm 27 now, with symptoms receding for a while, and I intend in the near future to make good on plans that have been delayed for years.

But, on the brighter side, it's given me perspective I otherwise wouldn't have had.

[denabob]

POTS is not terminal but like you that was a fear of mine ...I thought it would weaken my heart and cause cardiac problems later on but my doc says no and I have to believe him!

It is however disabling and very disruptive in all senses of the word!

As Sak stated the depression is very strong and "when" you experience it ( it seems to be inevitable) speak to your DR immediately!

Beta blockers aren't necessarily dangerous but they dont always help everyone ...this is a trial and error illness what works for some makes others worse.

Good Luck! And I hope you dont have POTS but if you think you do then find a Dr who knows about POTS and other dysautonomias.

Have you had other illnesses ruled out yet? That needs done first our symptoms are similar to alot of other illnesses!

[Guest tearose]

It's been a rough spell but this is from my heart, from my perspective in this moment...

Yes, POTS ended my "previous life". It was fatal. My body was never the same. The moment I realized my former life was gone, was when my true emotional healing began. My kind of POTS/dysautonomia has progressed and continues to give me health challenges. Because I let go of the expectations of my previous body and created new hopes and goals in this "challelnged vessel" I believe I have become stronger emotionally and as active as I can be in pursuit of maintaining "good" health.

I think your path to healing will need to be tailored to you...your personal treatment plan may include any of the following: various medicines, several doctors, compression garments, meditation/prayer, tears/laughter, reading, resting, small attainable goals and above all else, hope.

I hope that after seeing your doctor, you are told you are okay! However, if you do find you have a dysautonomia, this is a wonderful place to figure things out.

Remember, life never "gives us" something bad or good, things are always happening and we have to learn how to navigate through these uncharted waters. So, hop in the boat, don your livejacket and pick up an oar...you are in good company.

tearose

[briarrose]

I worried about it being fatal in the beginning too, but was reassured that POTS is not.

Beta-blockers, most of us find it to be a necessity to take beta-blockers to keep our heart rate down. I know that I can’t tolerate standing without it. You usually have to experiment to find the right one. Many of us are chemically sensitive and need just minimal dosage.

The last part of your question/statement – I don’t think that’s quite the way it works. POTS is not necessarily a heart problem do to a blood pressure problem. In fact there are many people that don’t experience the swings in blood pressure. The blood can tend to pool in the extremities, usually the lower extremities.

Here let me provide you with a weblink that explains it better than I can:

http://home.att.net/~potsweb/POTS.html

http://www.ndrf.org/

http://www.potsplace.com/

steph