Potsfighter374

On 6/11/2020 at 11:26 PM, autonomicreg said:

I've just gotten compression stockings for the first time after being diagnosed a year ago. Haven't noticed much of a difference yet, but I know I need to stay consistent and give them time to work. However, I am curious, wouldn't compression stockings hamper the possibility of recovering from dysautonomia?

Logically, I would think you'd need to force your body to naturally deal with and get used to orthostatic stress again on its own to heal. But compression stockings are an artificial aid that seems like a band aid for the problem. Wouldn't compression stockings prevent your body from making the necessary changes over time on its own? And wouldn't they make symptoms worse in the long run when you take them off as your body begins to depend on them?

Not sure if I'm even remotely on the right train of thought. But I'd like to know if anyone can shed some light on my concerns.

I have been wearing thigh high compression stockings for 8 months now and I love them.  The pressure was hard to get used to at first but now they make me feel better and I don't have the heavy leg feeling anymore.  They push the blood up toward my heart.  The only problem is I live in the south and they are hot in the summer lol.  Mine are 30-40mmHg.

23 hours ago, KaciCrochets said:

@Potsfighter374 I take 25 mg of hydroxyzine before bed if I start having adrenaline rushes while trying to sleep. Otherwise I don't take meds at all. I do have supplements that I take, and if anything messes with those I get really out of balance. 

Thank you for sharing!  Interestingly enough, my doctor wants me to try Hydroxyzine next.  

On 4/27/2020 at 4:49 PM, ReginaH said:

Okay, so the sore throat probably wasn't caused by the Mestinon. I have no idea what that was!

 

Mestinon seems to help me in quite a few ways, albeit subtly but it also seems to potentially cause issues with my breathing. Is this common? I wonder if it's worth continuing if it increases a feeling of pressure in my lungs, makes me cough, etc?

Hi sorry you had those issues with Mestinon.  I had the same issue with Mestinon and my doctor told me to stop it.  I felt pressure and like I couldn’t breathe well.  I was on a small dose too.  It helped me with brain fog and blood pressure though.  I’m continuing to look for something that works.  Hope you find something else!  😃

12 hours ago, KaciCrochets said:

I was told by UW Health that there are no neurologists who will treat POTS patients. However, my primary in Sun Prairie seems to have a decent understanding of hyper POTS. I am usually pretty functional, though, so I don't know how much help she'd be if things hit the fan, but she's willing to help and that's more than I've gotten from neurology.

Hi do you mind sharing what meds work for you?  I know everyone is different but I have hyper POTS and I’m still looking for meds that work.  I’m on Metoprolol and it’s just ok.  

On 5/6/2020 at 10:39 PM, bkweavers said:

My husband was let go of his job in October. He had been there for over 29 years and we had been on the same insurance that entire time. Thankfully, he got a new job but we had to move to the Madison area. With new insurance, I now have to give up my neurologist for Botox treatment for migraines and my cardiologist. (She actually left the area I had been living in so I would've been searching for a new doctor anyways.)

I have Inappropriate Sinus Tachycardia and Chronic fatigue syndrome. I'm looking for a neurologist as well as a doctor who can treat me for my autonomic illness. I also had a doctor who treated my CFS but not sure yet if I can continue to see him or not.

Anyone in the Madison, Wisconsin area with any recommendations? 

Thanks and it's been a long time since I've been on here so it's nice to be back!

Brenda

Hi, have you contacted Dr. Rose Dotson at Aurora?  I was going to go to her before I found my Neuro in Cleveland.  She has great reviews.

I’ve had this feeling too.  It just happened on the airplane.  I think it’s related to vertigo.  I had a bad case of vertigo after the flight.