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susie54

Heart Palpitations, Pvc's

13 posts in this topic

Well, Long story short, I ended up in the ER after two episodes that day of feeling like I was going to pass out. Blood just leaving me. Very cold hands and feet.

They put a monitor on me for 24 hours which showed palpitations so now I have to wear a holter for a month. I am leaving for Colorado day after tomorrow. The doctor called them PVC's. These episodes really scared me. Has anyone here been diagnosed with arrythmia or heart trouble? What did they feel like. I have been so short of breath with these and light headed. Seems worse in late afternoon. Weird isn't it! By the way, Happy Holidays, everyone. Susie54

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Hi Susie,

 

Wow! That sounds really scary....Did the doctor say whether there was a treatment for it?

 

I hope you have a wonderful trip to Colorado and feel well the whole time you are there. Happy Holidays to you too!

 

Warm wishes,

Heidi

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Hi Susie,

I am so sorry that you are experiencing this now. I was having palpatations and was diagnosed with long QT syndrome and ventricular tachycardia a while back... about 3 years a go or so. Well it got to the point where I was passing out atleast once a week and and at other times I would have a "brown out"--- this is where I wouldn't be able to see but I could hear what was going on around me. I had the monitors, tried a prescription and that didn't work. So my dr admitted me to the hospital to try yet another drug but it could have some adverse effects so they needed to monitor me. Well, I had the adverse effects, I was throwing up and my heart rate went over 180. They decided to do a cardiac ablation. There were 15 spots in my heart that was causing the pvc's. So far so good. I do experience some pvc's now as well as being lightheaded but I think that is a great trade off to where I was before. Make sure you see an arrythmia specialist not just a cardiologist.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Susie,

Sorry to hear about the PVC's. Hopefully the holter will give the doctor the information need to help eliminate them. I don't have PVC's but about 1.5 years ago I start having atrial fibrillations. I'm on a anti arrhythmia medication that has helped to control them. I also have a pacemaker due to complete heart block in January 2004. From the literature, only about 15% of sclero patients develop heart problems. I guess Lisa and I are the lucky ones! Hopefully you want join the club. I'll keep my fingers crossed for you.

 

Have an absolute marvelous time in Colorado!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi

 

In 2003 I had been experiencing an irregular heartbeat and palpitations for a while. I had also noticed that my heart rate was higher than normal. When I went to the doctor they found that my pulse was 160 and an EKG showed that I was in atrial fibrillation. I was sent by ambulance to the emergency room, and ended up staying in the hospital for 5 days.

 

I was lucky because they were able to restore normal heart rhythm with medication. I am still on medication to prevent the irregular heartbeat.

 

I am a little worried right now because lately I have again been feeling palpitations and my rate seems to be going above 100 again. I have one of those automatic blood pressure machines at home and I take my blood pressure and pulse twice a day. I am due to see my cardiologist in the next month or so.

 

Janey, I guess I'm also one of the lucky ones :)

 

Best wishes,


Ron

 

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

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Hi Susie,

Sorry about your problems. I had something very similar happen to me- the same symptoms word for word! -in April or May this year, and ended up in the emergency room. Chest tightness, hard to catch my breath, lightheadedness etc. My heart was pounding like it would jump out of my chest. They admitted me and because my enzymes were elevated they did a full cardio work up, but not one of the doctors I saw really knew anything about scleroderma. I felt like a science experiment, they all kept coming in and examining me. Long story short, I had a stress test, echo etc and all was normal. They basically shrugged their collective shoulders, said I was having PVC's which were no big deal, and sent me home.

So, when I told my rheumatologist about it, he asked me if I had been having severe Raynaud's at the time, and I said yes, how did you know that? Turns out, as he explained, Raynaud's can affect the heart, spasming the blood vessels and causing these PVC's. He also told me that it's IMPORTANT to stay warm with your whole body, not just hands and feet. And now I take and over the counter pain reliever daily as a blood thinner, and haven't had so many of them. As long as the doctors are aware, and we take care of ourselves like we should, he said they wouldn't be more than just a nuisance, for me anyhow.

I pretty much sit under a heated blanket all the time, and sleep with an electric blanket to keep warm. I have warmed gloves and dress like Nanook of the North as soon as it turns 60. Everyone laughs at me but you know what, the first time they see my fingers turn blue they freak out, and I remind them that the blood vessels in my heart are also affected. They stop laughing after that!

Good luck sweetie and STAY WARM- especially in Colorado and especially now!! Love, Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Hi Mary,

 

Hear, hear! See my reply today to Andy on "Holiday Shopping in the Arctic".

 

BTW, how did you get on with your front tooth with the fractured root?

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Hi Sherrill and gang,

 

Just read the arctic post, you know we have our own version of gaydar, maybe scleradar, where we recognize others like us by the many layers of mittens, scarves etc.... lol. If you guys don't have a heated throw blanket, by all means look into getting one. It's the best. My cats both know when mommy gets out the blankie, it's happy time and they launch themselves at me to sit on it. Keep that core body temp UP!

 

Thanks for asking about my tooth... it's still flapping away. I spend two days a week working in a dental office (like the cobbler's children?) and haven't done anything about it yet, but I have to soon. It needs to come out and a bone graft done, but I'm leaving on vacation in two weeks and they didn't have an appointment at the periodontist (neither did I have the $1600 I need) so I think I'll have it splinted to my other teeth so it doesn't come flying out when I eat my sourdough in San Francisco.

 

Have a great day everybody, Love, Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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My daughter in law is having the same kind of surgery it sounds with her front tooth. She injured it - actually lost it, in an accident years ago and has gone through many replacements etc, but she continues to have problems. So 2 days ago, they pulled it, gave her a "flapper" she calls it and they will actually do surgery and screw in a tooth that will be connected to her bone in her jaw or something like that. Poor thing.

 

We'll be thinking of you!!! Oh and I will definitely be thinking of you in SF. I love that city!!!! Eat some sourdough for me too. Yummy!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks everyone for your replies and caring. I am better and am now wearing a month halter. Mary I think it really relates to raynauds because it was acting up. Got to leave for colorado now. Thanks againg. Susie54

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Hi Everybody,

Whoa! Susie, I hope that in spite of having to wear the Holter monitor, you left for Colorado to have FUN. I also hope that they are able to help you with the easiest possible solution.

 

Mary in Philly,

You really gave some good information, as I wasn't aware of that which your dr told you... about Raynaud's. Hmmm...Lots to ponder, isn't it?

 

The rest of you who have experience with this... take care of yourselves!

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Everyone,

 

Sorry I left in such a hurry. I had our holiday celebration in Colorado with my whole family at my brother's in Durango. THanks to the Denver snow storm mess, we had to get in the van and drive straightt through, 18 hours. Great road trip with six drivers. I did take my holster with me . It is an month event monitor and you call it in. I did now have any events like I had the week they found the PVC's. Also, my raynauds was acting better while I was gone. I did have a spell of hard heart beats alot. I recorded a couple of them because I couldn't go to sleep because of it. Took two hours to calm down. YES< I had a wonderful time in the snow and Rocky mountains and even went snow skiing for one hour until my knees couldn't take the pain anymore.

Thanks for all your responses. They all are interesting and the raynaud's event would make alot of sense to me because at the time I came in to the ER, my fingers were blue. I had ice cold feet and hands all week even in 80 degree weather. I was not circulating well. When the heart go into spasms , does if feel like the blood is just leaving your head and you are going down?

I also have lost teeth and have two metal prongs that they screw teeth on. My bottom teeth now look great, but only two are mine.This all happened to me suddenly in one year a couple of years ago. Hope it goes well for you. I am home now. Will have the monitor another 3 weeks and see doctor a couple of weeks from now.

Happy Holidays everyone, Susie54

Mixed COnnective tissue disease and possibe MS

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Susie,

WOW - I'm glad you made it back before the next snow storm hit. It's snowing again in Denver now. 18 hours is a very long drive! Glad you had 6 drivers. I'm amazed your Raynaud's didn't give you fits in the cold. Somethings right must be going on.

 

Sorry that you're still getting those heavy heart beats. Hopefully the monitor will provide enough information to figure out what's going on and more importantly, what can be done about it. I know how scary it is to be lying in bed feeling your heart race a marathon without you. That's where those calming exercises come in, but they still take time.

 

Please let us know any feedback you get from the monitor.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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