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POTS - postural orthostatic tachycardia syndrome

Posted by julianned @julianned, Sep 6, 2019

Hi all, is anyone familiar with POTS and if so how has your experience been diagnosing and treating it?

I was diagnosed with neurocardiogenic syncope several years ago and treated with propranolol. This worked miraculously for me until about 8 months ago when I started having fatigue, dizziness, gastrointestinal issues, pain, and vision issues. I saw a neurologist today who specializes in autonomic conditions, and she said that it sounded like POTS. I had a tilt test recently which showed a few abnormalities, but the test was performed while I was still taking propranolol. I was told that this may have skewed the results.

Any comments are much appreciated!

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fibropositive14 | @fibropositive14 | 4 days ago
In reply to @teddi "I have been diagnosed with POTS for several years now. Took a while for doctors to..." + (show)
@teddi

I have been diagnosed with POTS for several years now. Took a while for doctors to agree that what I suspected was actually correct.
Everything I do is at aerobic exercise level, and if I really work hard the heart rate went dangerously high.
My cardiologist prescribed Propafenone. It helped bring down my heart rate. And increased dosage is helping more.
My gait stability is low. I use a cane. I have stools all over the house so I can sit as much as possible.
I wear yoga leggings to provide compression all the time.
I am not shy about using salt.
The only place I can walk normally is in the pool. That’s my preferred choice of exercise.
It’s frustrating that I can’t do all that I want to do but I have learned to pace myself.
Perhaps this is as good as it gets. I am not on any medication for the Crohns. The chemotherapy strength drugs aren’t tolerated. However the Crohns appears to be mostly in remission. Gas and irregular bowel movements come and go but are tolerated. I am fatigued easily.
Is anyone living with this combo? Have you found a way to increase your quality of life?
I find the discussion about vitamins interesting. I have deficient Vitamin D level. Am on prescribed Vitamin D. Perhaps that explains the inner tremors I am experiencing.

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Yes the vitamins are helping me quite a bit actually, I take vitamin b c and d and I also take magnesium which is so good 😊 I also have my electrolytes and they help me function and helps my energy levels

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fibropositive14 | @fibropositive14 | 4 days ago

I got diagnosed 2 years ago and at first I didn’t really know anything about it, I’d never even heard of it!
As time has gone by, my symptoms have got worse, the fatigue is really getting to me, the adrenaline dumps too…it’s fight or flight, the autonomic system…I’m always in pain especially when I’m stressed, I don’t like the feeling faint, my vision is blurry sometimes, I take electrolytes and they’re helping with my energy levels and I’m on flusrocortisone prescribed by my GP. I’m not sure if that’s helping, I went to the doctors 2 days ago and asked to be referred to rheumatologist as they’re the ones that diagnosed me but he said your better off seeing a cardiologist so I’m waiting for my appointment. I’ve found that eating healthily and staying well hydrated helps massively! I take vitamins b c and d too. Oh and magnesium really helps!! I try to keep moving as well as resting and listening to my body. Just try to pace myself and accept the fact that the ‘old’ me is gone and this is the ‘new’ me…I’m still trying to get to grips with it. It’s hard and life changing. I can’t do what everyone else does, can’t keep up to them. I just drink water all day, sipping it. Apparently it’s bad to down it. I also meditate 🧘‍♀️ and practice mindfulness. Your health must come first, make sure you prioritise xx

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fran45 | @fran45 | 4 days ago
In reply to @fibropositive14 "That sounds very much like pots syndrome…I have it and they’re the symptoms I get.." + (show)
@fibropositive14

That sounds very much like pots syndrome…I have it and they’re the symptoms I get..

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Thanks for your input. POTS is the only thing close to what I seem to have(according to my research), but none of the doctors wants to put a name on it and skirt around the issue when I mention it. Does anything help increase your stability when you stand?

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1 reply
fibropositive14 | @fibropositive14 | 4 days ago
In reply to @fran45 "Thanks for your input. POTS is the only thing close to what I seem to have(according..." + (show)
@fran45

Thanks for your input. POTS is the only thing close to what I seem to have(according to my research), but none of the doctors wants to put a name on it and skirt around the issue when I mention it. Does anything help increase your stability when you stand?

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Nothing really..🤔 not that I can think of. I just get hold on to things

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saganjames | @saganjames | 3 days ago

Update of a prior post of mine, hope this helps:
I know a lovely 16-year-old young lady who was diagnosed with POTS about 2 1/2 years ago. After many different treatments, she is now much better based on her treatment at CFNC, Carolina Functional Neurology Center. According to her mother, a healthcare professional, CFNC patients come from all over the US. I also understand from her mom that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com

I saw this young lady again last week and she is still doing great. Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.
Regards,
Sagan

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1 reply
fran45 | @fran45 | 3 days ago
In reply to @saganjames "Update of a prior post of mine, hope this helps: I know a lovely 16-year-old young..." + (show)
@saganjames

Update of a prior post of mine, hope this helps:
I know a lovely 16-year-old young lady who was diagnosed with POTS about 2 1/2 years ago. After many different treatments, she is now much better based on her treatment at CFNC, Carolina Functional Neurology Center. According to her mother, a healthcare professional, CFNC patients come from all over the US. I also understand from her mom that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com

I saw this young lady again last week and she is still doing great. Hope this helps anyone dealing with central and/or peripheral nervous system issues. Believe me, I have no interest in CFNC other than to help those with these miserable disorders.
Regards,
Sagan

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Thanks! I'll check that out

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