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!

@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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Does anyone else have an Ehlers Danlos or connective tissue disorder? Apparently I have hyper-flexibility…no one has noticed this until now (including myself!!!!) I guess I always thought it was normal and in fairness to the doctors it is sort of hard to spot unless youre looking for it..

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@colleenyoung

Hi @julianned, I moved your message to the Heart Rhythm Conditions group where other member like @kariulrich, @neeci, @mojoearle, @bearylynn, @dogmamat, @brie87144, @jenniferjjjj, @widman, and others are talking about POTS (postural orthostatic tachycardia syndrome).

You may be interested in reading these past discussions on Connect too:
– Managing POTS (Postural Orthostatic Tachycardia Syndrome) https://connect.mayoclinic.org/discussion/managing-pots-postural-orthostatic-tachycardia-syndrome
– 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

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/

Julian, what are the next steps for you? Will you have to discontinue propranolol and repeat the tests?

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Hello
My daughter was diagnosed with POTS at 21. I would like to reach out and ask if anyone has experience with the work of Dr. Deborah Zelinsky at the Mind Eye Institute outside of Chicago? They have used neruo-retinal imagining/glasses with success in eliminating the dysautonomia.
Thank you and all the best,
Marina

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I assume you have already tried cardiac rehab to try and combat symptoms. It sounds like the doctor does have a good track record. However, it sounds very expensive. If you do go see her, please report back to our community with what she recommended, cost, and any results. Thanks.

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@julianned

Does anyone else have an Ehlers Danlos or connective tissue disorder? Apparently I have hyper-flexibility…no one has noticed this until now (including myself!!!!) I guess I always thought it was normal and in fairness to the doctors it is sort of hard to spot unless youre looking for it..

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I have very good flexibility, but never bothered to get Ehlers Danlos diagnosis as I don't think it would help me very much with the POTS diagnosis being the main problem. I do have a lot of nerve entrapments, but not sure if it is related to being too flexible or not. In theory, the body might compensate for the increased flexibility by tightening muscles. However, I have no way of knowing if this is causing my spasticity issues.

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Yes, that sounds like POTS to me. At least, that is what my doctor called it. Sometimes, they will just call it Orthostatic Hypotension if you don't have tachycardia.

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