POTS - postural orthostatic tachycardia syndrome

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..

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

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.

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.

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.

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?

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.

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.

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

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