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!

Liked by Leonard

I would recommend to retake the test without meds. It will be hard but results are more accurate. That's what I was told when doing my TTT

Liked by Lisa Lucier

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Thank you for sharing your information. I believe Metoprolol was causing my Tachycardia. I slowly discontinued the Metoprolol, the less Metoprolol I took the less Tachycardia I experienced. I haven't had Tachycardia since stopping the Metoprolol. I currently take a low dose of Micardis.

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@c130

Thank you for sharing your information. I believe Metoprolol was causing my Tachycardia. I slowly discontinued the Metoprolol, the less Metoprolol I took the less Tachycardia I experienced. I haven't had Tachycardia since stopping the Metoprolol. I currently take a low dose of Micardis.

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I stopped slowly 2 weeks ago.no more tight chest or out of breath. Stated taking 500mg of Hawthorne Berry twice a day and my afib is already 80% better after only 1 1/2 weeks. Haven't felt this good in 2 years when I 1st got on the Metropolol. And 1 lost about 10 lbs of fluid caused by the pill too!!

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@kanaazpereira

Hi @julianned,

I hope you’re doing well; I wanted to follow up, and was wondering if you are able to share whether you were diagnosed with POTS?

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Hi Kanaaz, My appologies for the very long delay. I actually ended up repeating the tilt test and in fact got abnormal results. Ultimately I was diagnosed with POTS. I have also had a 24 hour blood pressure monitor, which did detect some abnormal peaks and valleys — which they said could possibly cause syncope episodes. However i am still waiting to have my appointment with a local specialist. I just finally got on the books today for 2 weeks from now. I am taking amitriptaline and propranolol, which I feel has helped me, however I am starting to experience tremmors in my hands and mouth again. My pcp suggested possibly raising the dose of propranolol but I am very lethargic and worry that this will cause more lethargy. I am not even 30 and I do worry that things will get worse as I age.

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Curious if anyone has been diagnosed with POTS, symptom background, and how the doctor came to the diagnosis.

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@lpate

Curious if anyone has been diagnosed with POTS, symptom background, and how the doctor came to the diagnosis.

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@lpate, I moved your question about POTS and how people were diagnosed to this existing discussion where @julianned asked similar questions and was diagnosed with POTS. Click VIEW & REPLY to learn more from her and fellow members @kfletch @kariulrich @flick027 @jessicadawn @c130 @sassifb @suzanne2019 and others.

Lpate, keep us posted on what you find out after your consult with the cardiologist.

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@colleenyoung

@lpate, I moved your question about POTS and how people were diagnosed to this existing discussion where @julianned asked similar questions and was diagnosed with POTS. Click VIEW & REPLY to learn more from her and fellow members @kfletch @kariulrich @flick027 @jessicadawn @c130 @sassifb @suzanne2019 and others.

Lpate, keep us posted on what you find out after your consult with the cardiologist.

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My granddaughter was diagnosed with POTS by a cardiologist and a team at Nemours Children's Hospital in Orlando. As she moved to adulthood, she spent two weeks up at Mayo Rochester and they put her on a life path for her future. She will be entering college this year. It was a team approach, but the Cardiologist and a battery of testing (tilt table/etc.) helped with the diagnosis.

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My GI recently prescribed propranolol for "butterfly" sensations in my stomach, along with clenching and tightening. He feels it's due to anxiety, I think it has more to do with omeprazole which I've been on for 3 years. Has anyone taken it and does it help with any strange feelings in the digestive tract? Thanks so much.

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@jenn54

My GI recently prescribed propranolol for "butterfly" sensations in my stomach, along with clenching and tightening. He feels it's due to anxiety, I think it has more to do with omeprazole which I've been on for 3 years. Has anyone taken it and does it help with any strange feelings in the digestive tract? Thanks so much.

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Hi @jenn54 and welcome. As you will see, I have added your discussion to an ongoing discussion with similar symptoms and medications taken. While I am not suggesting that POTS is your diagnosis, there are many members in this discussion that can speak to the effectiveness of the medication propranolol. When did you start having the "butterfly" sensations in your stomach, along with clenching and tightening?

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@amandaburnett

Hi @jenn54 and welcome. As you will see, I have added your discussion to an ongoing discussion with similar symptoms and medications taken. While I am not suggesting that POTS is your diagnosis, there are many members in this discussion that can speak to the effectiveness of the medication propranolol. When did you start having the "butterfly" sensations in your stomach, along with clenching and tightening?

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Hello and thank you for the welcome. I started experiencing the sensations about 7 years ago, and at the time chalked it up to menopause. It continued, and my GI recommended an endoscopy that was clear, but she put me on omeprazole for three months which helped immediately; sensations gone. Fast forward two years later I started experiencing chest pain, heart was ruled out so I had another endo which revealed 1cm Barrett's esophagus. I've been taking the omeprazole since. I had a repeat endo January 2019 and the biopsy results were negative for BE, though my GI said he could visualize it. I have an appt. scheduled with an EP the end of August as when I feel these belly sensations, I also feel a pause in my pulse. Thanks for replying.

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@kanaazpereira

Welcome to Connect, @flick027, @kfletch,

What a great question, and insightful suggestions too. You may be interested in connecting with @neeci, @mojoearle, @bearylynn, @applegeek, @morgandickson, @jenniferjjjj, @widman, and others in these discussions:

Diagnosed with dysautonomia. Looking for treatment options http://mayocl.in/2bKzAwa
Awkward/rapid/skipping heartbeat http://mayocl.in/2nwaKK0
Postural Orthostatic Tachycardia Syndrome (POTS) http://mayocl.in/2nkZe3y

@dogmamat, @brie87144, do you have any suggestions or tips about living with POTS?

I would also encourage you to read this story on Connect:
Learning to Live Well with POTS Brightens Daily Life for Christine Esposito: https://sharing.mayoclinic.org/2016/12/15/learning-to-live-well-with-pots-brightens-daily-life-for-christine-esposito/

@flick027, @kfletch, could you share a bit more about yourselves? What lifestyle changes did you have to make; what helped?

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I was diagnosed with paroxysmal atrial fibrillation 2 1/2 years ago. I only take metoprolol on an as-needed basis. Recently I have been experiencing dizziness, strong pressure behind my eyes, and some blurred vision; not sustained; very short episodes. It could be sinus related. I could have sworn that someone on this site stated they were having unusual pressure behind their eyes, that their wife thought it was sinus-related, but that it was something related to afib. Can you assist me as to where I should go to locate this information? I know there are so many posts regarding various issues that you may be unable to help me. Thank you for whatever assistance you are able to give.

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@gailanne

I was diagnosed with paroxysmal atrial fibrillation 2 1/2 years ago. I only take metoprolol on an as-needed basis. Recently I have been experiencing dizziness, strong pressure behind my eyes, and some blurred vision; not sustained; very short episodes. It could be sinus related. I could have sworn that someone on this site stated they were having unusual pressure behind their eyes, that their wife thought it was sinus-related, but that it was something related to afib. Can you assist me as to where I should go to locate this information? I know there are so many posts regarding various issues that you may be unable to help me. Thank you for whatever assistance you are able to give.

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Hi,
The best advice you can get is to visit your doctor.there are a million symptoms, and each one could have a different meaning.
Hope you get reliable and accurate answers.
Funcountess

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@jenn54

My GI recently prescribed propranolol for "butterfly" sensations in my stomach, along with clenching and tightening. He feels it's due to anxiety, I think it has more to do with omeprazole which I've been on for 3 years. Has anyone taken it and does it help with any strange feelings in the digestive tract? Thanks so much.

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I have been told so many times that my symptoms are stress related, but I think there is more to it. In my case I have "spells" where I get tightening and distress in my stomach area, lower gastro distress and at the same time get dizzy and my BP gets very high. I was told by a Gastro Doc that the Gastro issues and dizziness and BP cannot be related…but they are related. I can go for months without this happening, and for no reason it will start again. It can last a few days or a few months. This has been going on for about 10 years. I will investigate propranolol and talk to my Doctor about it. thanks for all the good info.

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@c130

I have been told so many times that my symptoms are stress related, but I think there is more to it. In my case I have "spells" where I get tightening and distress in my stomach area, lower gastro distress and at the same time get dizzy and my BP gets very high. I was told by a Gastro Doc that the Gastro issues and dizziness and BP cannot be related…but they are related. I can go for months without this happening, and for no reason it will start again. It can last a few days or a few months. This has been going on for about 10 years. I will investigate propranolol and talk to my Doctor about it. thanks for all the good info.

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Hello @c130 After your next doctor's visit could you post and let us know what the doctor's response was? I hope that you are able to get some helpful information about the dizziness and BP issues.

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@c130

Do you have EDS?

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I just got diagnosed with a connective tissue disorder…told it was in the Ehlers Danlos family but we need to determine the gene it is linked to.

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