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My Life with POTS

Nov 17, 2010 - 2 comments





postural orthostatic




my life





If you have POTS you probably know what it feels like to have every doctor roll their eyes at you until they see your symptoms first hand, and if you don't then you can see how rare it really is.  (POTS) Postural Orthostatic Tachycardia Syndrome is still a mystery and has no cure.  There are treatments and I have heard stories of people growing out of it.  I was on Fludrocortisone (a steroid commonly used with POTS patients) for about a year and a half but the side effects I experienced were too much to bear.  I experienced severe pain all over.  No one could hug my without me crying, even the clothes I was wearing hurt touching my skin.  I couldn't take it anymore and decided the symptoms of POTS were worth the risk.  I slowly got off the medicine and then I was back to passing out on a regular basis.  

By increasing my intake of water and salt I was able to get back to a more normal life.  I still pass out but usually I can sit down or lay down before it happens.  I cannot participate in sports let alone walk up the steps without having my heart racing but I have been able to maintain my POTS with more success as time goes on, however pregnancy is a whole new adventure.

Passing out is the biggest problem I have had with POTS but my blood pressure comes in close second.  I experience what my family calls POTS episodes.  My doctors don't know what to make of it and I have not heard of anyone else having these experiences.  These episodes cause chest pain, palpitations, weakness, lightheadedness, trouble breathing (sometimes no breathing), occasionally blue lips and feet, cold to the touch, and ultimately very low blood pressure.  The only way to help in these situations is to sit down with feet propped up, a blanket over top of me, fuzzy socks on my feet to help retain body heat, and start really concentrating on breathing until the episode is over.

The cause of POTS is still unknown however there are theories.  Two of these theories could have contributed to my POTS.  One; I have had too much radiation.  Ever since I was very young I was in Dance, Gymnastics, and Cheerleading.  With these came a lot of injuries which resulted in many x-rays.  I have had more than 30 serious injuries that each had several x-rays performed.  Two; something snapped in my neck that shouldn't have.  I went to the chiropractor 2-3 times a week to relieve pain from old injuries.  There was a day that my neck pain just wouldn't let up no matter what I did so when I went to the chiropractor he tried something new.  It felt rather painful when he did it, numb afterwards, and then back to the sharp pain I had prior.  20 min after I had gotten home I passed out on the sidewalk in my back yard.  Ever since then I have had this problem.  Of course the chiropractor assured me he did nothing to cause me to pass out and other doctors think there must be a different underlying condition or they say I don't have it at all and then look stupid when they realize I wasn't referring to Pott’s disease -a presentation of extra pulmonary tuberculosis that affects the spine-.  Only one doctor was able to find out what I had using a tilt table test, he was also the only one who actually seemed he wanted to help me.  The cause of my POTS may never be known but surviving it is my main concern, especially with my baby on the way.

If you have POTS, similar experiences, or any questions feel free to chat with me.

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Avatar universal
by r9c, Dec 05, 2010
hi sorry to hear abt those pots symptoms,i do think i have POTS too,i have daily lightheadeness usually its worse when i stand or walk for a long period,unable to do sports again as i am sure my dizziness will worsen.Have done a full cardiac work up which came back clean expect for some sinus tachycardia which then cardiologist said its anxiety,done tilt table test where at a point i felt so dizzy like about to pass out but it slowly went away,and when the cardiologist review the test,ecg,bp monitoring and told me that the tilt table test is normal and i probably have anxiety but which i dont think so,because i dont feel much stress and anxious and yet i still have those daily lightheadness and palpitations,sigh so many doctors have like roll their eyes when i told them my symptoms,because all my complete blood work count,cardiac testing are normal,and they said i have anxiety ? cant believed is it really all in my head,sigh i really think i do have this POTs,

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by MyBabyLove2274, Dec 16, 2010

It took a long time to have my pots diagnosed.  You do have some symptoms of POTS.  I had a doctor tell me it was all in my head and that I just had anxiety problems.  I knew that couldn't be it so I had many visits with different cardiologists, neurologists, and other doctors in similar fields before I found a doctor hours from my home who did a tilt table test and said my numbers where a perfect match to POT Syndrome.  He had studied POTS and had patients throughout the state he had diagnosed.  He was a very good doctor; sadly I haven't been able to find him again to help me with pregnancy complications.  I have done a lot of research, gone to classes, have a great support team, and a good team of doctors as well so I hope my delivery will go well.  

The truth about POTS though, is it is "all in your head".  Just maybe not in the way other doctors mean.  In some cases of POTS, like mine, the brain doesn't send messages to the nerves to pinch your blood vessels and send the blood back up to your heart.  This results in passing out.  Your body does this as a way to reboot itself.  The aorta valve collapses working sort of like a vacuum to help the blood come from the legs to the heart, when you are passed out (lying down) it is easier for the heart to do this.  Also passing out gives you the time to sleep through the pain of the aorta valve collapsing.  I have had it collapse without passing out before and it hurts pretty bad but lucky it doesn't last long.  My type of POTS is very rare, but there are a few people I have found that have some of the same problems.

Everyone who has POTS has different forms, different severities, and even different symptoms.  This is one of the reasons it is so hard to diagnose.  My advice, don't give up trying to find a doctor who really wants to help you.  In the meantime, increase your water intake (I find Propel works better).  Before you get up from lying down or sitting, flex your leg muscles for a minute to help get your blood flowing.  If you feel dizzy, by all means sit down until it passes, it's healthier for your body if you prevent it rather than pushing through the feeling.  If you have low blood pressure, increase your salt intake and carry a small salty snack where ever you go along with that bottle of water.  You never know when you may need it.

Hope this was helpful for you.

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