PVCS & PACS

[andybonse]

How many of you guys get PVCs & PACS daily?

Told there normal & Benign?

Just curious as mine all started when my POTS got bad and diagnosed, I think its due to the heart and nervous system speeding up and down in less than a second and it like trips the heart up at whatever point it is during its electrical conduction. So as it's still probably benign it doesn't feel benign! LOL.

And for people who do, do you also smoke / vape? Does it make them worse?

Mine happens more when I go lower on my florinef, so its obvious to me its linked to the POTS stuff. Heart tests are always 100% normal.

Worst when it happens when your in a shop, or out with friends or a resteraunt etc, you go all funny and don't want people to know lol, and then the fear of it happening in these circumstances! Man, I'm lucky I got over been house bound and for florinef making me able to go about most normal daily things, but im never right, light headed, feel weird, heart stuff / pvcs lol. But I feel like im lucky to be able to do this stuff. Even drink alcohol when im higher on florinef, im lower on it at the moment and had some alcohol so think that caused my little spark tonight lol!

I gained 3 stone in weight since getting back to more normal stuff so am now on a healthy diet, I also drank ALOT the last year as it made me feel better. So i'm basically having 7-10 fruit & veges per day in a smoothie, multi vitamin, fish oil, vitamin d3. Exercise starts next week. So I'm on a health run, alcohol limited to once per week.

On the positive side, I have been making money online now for over a long time as I cant work, I hated replying on benefits and took action in that way!

Worried about my son, he goes extremely red on skin after touching holidng etc, hes pale. He has EDS. I KNOW it. I can see some veins. You just know as a parent. Im terrified he will get it but if hes like me he will deal with it but feel guilty I have created someone who has a high chance of this crappy condition :/ and what about me I cant take him holidays abroad and other stuff..

Mah, hows everyone else? The UK is sucky atm, was really hot and I coped as the florinef was up and got myself a tan dont look like a vampire now lol!

I guess this post is about PVCS and PACS and also other stuff haha Im not all with it right now!

 

Andy

 

[Katybug]

Hi Andy,

Don't have PVC/PAC. I just wanted to lend some support. You don't know how or even if this will effect your son. Try to take it as it comes. He may be totally healthy and not be significantly affected even if he does have EDS. And you never know what treatments will be available to us by the time he's old enough to appreciate a trip abroad with his dad. 

It's been hotter than blazes here in Maryland. Upper 90's with high humidity. Ick! Hiding out in the air conditioning! 

Take care,

Katie 

[Womble]

I have lots of ectopics, which I think are the same thing.  In fact I was talking to my cardiologist about them at my appointment this week.  All my heart checks came back as normal and he says they're nothing to worry about, but yes, they feel horrible, especially when I get a run of them all together.  I am learning to drive at the moment and had a proper flurry of them in the middle of my driving lesson this week, that was ... interesting.  Fortunately they don't seem to affect me cognitively, they're just uncomfortable and a bit distracting.  

I'm in the UK too and that hot, humid weather we had was awful, not to mention all the thunderstorms which always affect me really badly.  I'm definitely happier now things have cooled down a bit.  The problem in the UK is that we're just not geared up for proper hot weather, so there aren't enough places with air-conditioning to hide.  In the past, before my POTs got really bad I used to go and hang out in the fridge/freezer aisles of the supermarket.  I'd rather shiver than overheat any day.

I have three children and do understand what you're saying about the worry and guilt.  My eldest has ASD, with hypotonia and hypermobility, middle one was diagnosed Joint Hypermobility Syndrome at the age of 8 and that causes him a lot of problems, pain and exhaustion.  My youngest is very bendy, but super fit and <fingers crossed> as yet, not having any problems related to her hypermobile joints.  My Mum, who's almost 70 has just found out she has EDS (about to go through genetic counselling to confirm which type) and has both mitral valve prolapse and aortic dilation.  Both she and I worry and feel guilty about having passed on our problems to our children, but it is what it is and we try not to dwell on it, as it won't change anything.  Maybe if we'd been diagnosed younger and known more about our health issues sooner we'd have made different choices in life, but that wasn't the way things worked out.  

If your son does turn out to have EDS, there's a chance he may not be negatively affected by it at all (I have two sisters and neither are affected, despite both being hypermobile and my daughter is showing no signs of problems as yet, whereas her brothers both clearly had issues at her age).  As Katy said, by the time he's grown medicine/medical knowledge will have advanced and there may well me better, properly researched treatments available. 

[Alex D.]

Just starting out with my neuropathy journey, buy my PAC's are wacko crazy,. 12,000 a day from my halter monitor.  My cardiologist has me on flecinide, but bad side effects.  Meeting a new neurologist tomorrow that I hope can lead my doctors down a comprehensive management set of plans.  Not sleeping and living on Atavan daytime, and Lunesta to rest at night.  At a low point now, so any encouragement would be great.

[Alex D.]

Started on a new heart Med, propafenone.  Seems to have greatly reduce the ectopic beats, on the down side it interface with a lot of meds, Dr coordination is critical.

[SarahA33]

my.fiance takes this for a fib (atrial fibulation) its the only med that's worked for him after 2 ablations. He def. Cant miss a dose or he feels a flutter.