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!

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

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..

REPLY
@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?

Jump to this post

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

REPLY

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.

REPLY
@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..

Jump to this post

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.

REPLY

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.

REPLY

Metoptrolol and the itch: I started on this medication about 10 days ago, and
at bedtime, the itch is keeping me from falling asleep. I take 1 tablet in the morning, along with Eliquis. At night I cannot fall asleep due to the itching. I’ve tried all the OTC sleep aids, with limited success. What I’ve been doing the last few days is taking 5mg Ambien around 1AM (out of desperation). This allows me to sleep comfortably until about 5 or 6am. I am scheduled for a sleep study in 2 weeks where I hope to get some answers. What are others doing to deal with this side effect?

REPLY

hello @tct. I have had a facial itch for about 14 years now. I have seen 7 different dermatologists, and tried all kinds of OTC and prescription meds. I was prescribed Gabapentin on 3-22-21. She said to start with 300, if that didn't ease it go to 600, then 900. I settled on 600 but really still have the itch. When I started having AFIB I was prescribed Metropolol and Eliquis on 10-30-21. So, I've had the itch for many years prior. I can't say it got worse since on these two new meds, but it is still ongoing. I don't know if this helps you at all, but when I saw ITCH, I thought I'd just give you my experience. I may go back up to 900 mg just to see if it relieves it any more. Is your itch body wide? As you, mine gets worse when I try to fall asleep. They told me it is probably neurological – then I started to think if it is related to the electrical impulses precipitated by the afib – except that I've had the itch much longer. It's certainly a conundrum. Good luck. Again, this probably doesn't really apply to you, but I wish you good luck.

REPLY
@faithshouse

hello @tct. I have had a facial itch for about 14 years now. I have seen 7 different dermatologists, and tried all kinds of OTC and prescription meds. I was prescribed Gabapentin on 3-22-21. She said to start with 300, if that didn't ease it go to 600, then 900. I settled on 600 but really still have the itch. When I started having AFIB I was prescribed Metropolol and Eliquis on 10-30-21. So, I've had the itch for many years prior. I can't say it got worse since on these two new meds, but it is still ongoing. I don't know if this helps you at all, but when I saw ITCH, I thought I'd just give you my experience. I may go back up to 900 mg just to see if it relieves it any more. Is your itch body wide? As you, mine gets worse when I try to fall asleep. They told me it is probably neurological – then I started to think if it is related to the electrical impulses precipitated by the afib – except that I've had the itch much longer. It's certainly a conundrum. Good luck. Again, this probably doesn't really apply to you, but I wish you good luck.

Jump to this post

Thanks for the wish! My itch is not body wide, but rather specific instead. I can almost always count on my ears to itch, but also my legs get itchy in different spots (or maybe I have RLS in addition to AFIB and PVCs). Anyway, it’s entirely possible that its neurological — last night I tried a meditation app on my phone and it worked to a certain degree. It didn’t completely eliminate the itching, but enough so that I could fall asleep and for the first night in a week, I didn’t have to take ambien. Yay! I look forward to tuning the parameters on the app and see what works best.

REPLY

That's good that you didn't have to take an ambien, and that you slept well.
Can you share the meditation app?

REPLY
@faithshouse

That's good that you didn't have to take an ambien, and that you slept well.
Can you share the meditation app?

Jump to this post

It’s called “Calm” on the apple app store

REPLY
Please sign in or register to post a reply.