jjpots

I got the o.k. to add another 10 mg pill after lunch and I can even add another without checking in with them. After the 30 mg a day I think I have to check in again so hopefully I don't need to go past that. Jen

A question me and my husband keep wondering is what are the long term effects of a heart that is tachy much of the time? They say pots isn't life threatening and yet cardiomyopathies can be caused by prolonged tachycardia. Makes me wonder if mine was caused by that or by my pregnancies. Je

I've had the 24 hr holter and the event monitor in the past but that was after I was already diagnosed. JJH

Thanks for the info. I've never been told what kind of pots I have. Jen

My recent dr. visit report says during Valsalva there was an exaggerated phase 4 with a marked pulse pressure compression. I tried looking up stuff about valsalva but still have no idea what it means. Any idea???? Thanks, Jen

Thanks for the info guys! I guess I never thought of just waiting to send the recording until no one is around or until I get home. I've never heard of the other things. I'll have to bring them up when I go in next time. I'm going in for an MRI of my heart on Monday so my cardiologist can check the scar tissue I have from my previous cardiomyopathies. I wonder if that would be able to answer any questions about those weird rhythms??? Thanks again, Jen

I see Dr. Low at the Mayo. Jen

O.k., maybe I have a little brain fog but is that saying that people with autonomic dysfunction my not get a fever as easily??? Jen

I do get winded easily too, steps are tough and the worst is getting ready in the morning. Seems like mornings are always worse anyway and then to have my arms up for drying and curlig hair really gets my heart going. I've had to go and get a bar stool to sit on for getting ready in the morning when is really bad. Jen

I did think about that but I couldn't really do an event monitor while at work because it's too fast paced and I don't hink I could keep calling in the send them every 5 events. Plus, my work doesn't know about my "issues" as I call them and I would like to keep it that way. The problem with a 24 hr. holter is not every day is a bad one so how do you decide when to do one? Do they have holters that are more than 24 hrs? Thanks! Jen

I started taking it an hour before I get out of bed too and seems like that helps for the morning. I put a call into the neurologist that I saw at the Mayo because she wanted to know how I was after two weeks. I had to just leave a msg. but I asked if I could take another 10mg around noon since it seems like it's getting fast around lunch again. Does your body get used to the med and then stop working? It sounds like some of you have been able to stay on it for quite a while. The doc also said the med might cause nightmares. Have any of you had experience with this? I've had some weird dreams since on it but not nightmares. Jen

I had 3-4 days in a row when I had some really weird arrythmias. I was wondering if this is a POTS thing or if maybe my cardiomyopathy is acting up. I think everyone feels those weird skipped beats or occasional "heavy" beats but this was different. It lasted for much longer over 1/2 hour and they actually made me jump a few times because they were so "heavy" and irradic. I had my husband put his hand on my chest and he felt them too. Like I said, it was different because of the intensity and the duration. Anyone experience something like this? JJH

Thanks for your input. I haven't had any problems with my stomach with this one but the mestinon was a killer to begin with. After a year on that one I think I'm finally used to it. Good luck to you too! JJH

The Mayo neurologists just added propanolol to my mestinon rx. It seems like it works for part of the day but then the tachy comes back. I'm only on 10 mg now. Anyone else on this, what dose are you taking and does your body just get used to it after a while and then stop working? Thanks for any info. JJH

Is Polar the brand name of the watch? Where can you buy them? JJH