I've joined the PVC club...

[Marguerite53]

Hello all. I understand that PVC's are not generally a big deal, but everytime you get a new label it feels like, well, some sort of progression. Anyway, felt punk for 3 weeks, very tired, sometimes abit dizzy, heart pounding and flippy flopping at odd times but then never really going away. Couldn't attribute it to anything, not to hormones in flux, no flu or virus bug, no bad food..... Finally went to my General Practitioner today,whom I adore, and sure enough, she heard an arrythmia. She even described it, like a drummer would a drumbeat (ka thump diddi thump uh thump) or whatever. I don't know how they remember and hear all this stuff! We took an EKG and there it was.

We're doing fasting bloodwork tomorrow to check Potassium, calcium, thyroid levels, etc. If something is amiss there, then we'll address the specific need. If they come back normal she recommends beta blockers and pushing my scheduled mid-June echo up to now. (last was in August) Right now all I'm on is 80 mg Diovan for moderately high blood pressure.

In case it's just nerves/anxiety she gave me an Rx for low dose valium to try if it gets really pronounced. If that helps, maybe it's anxiety driven.....

All comments and advice welcome! Thanks for being my best friends in all this!!

:) Marguerite

[ALCapshaw2]

How much CAFFEINE do you consume?

I became VERY sensitive to caffeine this summer and even a small bit of chocolate would trigger PAC's. I was put on a low dose of Sotalol (generic form of BetaPace) and that got it under control and of course stayed away from ALL sources of caffeine.

Now, I'm able to tolerate chocolate again and don't have symptoms even if I miss a dose of my meds. I have no idea what that means...

'AL Capshaw'

[char2mar]

I also get PVC's and basically feel the same way as you do, have since November of last year. So far the Doctors have not given me any meds for this. Last week I ended up in the ER because I was having a bout of tachycardia along with neck pain and chest pain. My heart rate would not drop below 120 and I was throwing off PVC's at an alarming rate...about every 5th or 6th beat. The heart monitor alarm was going off all the time. They gave me adivant (not sure if that is spelled right)to try and calm me down....(I wasn't anxious and felt calm) but that did not work...so they gave me some pain killers for the chest and neck pain and sent me on my way....the tachycardia eventually went away...probably 12 hours later....heart rate dropped to 90 bpm but since then I have been throwing off PAC's, Bigiminy rhythm with frequent PVC's so my heart rate varies all the time. It goes from 45 bpm to 90 bpm and any given time. I can feel every PVC. It feels like my heart drops into my belly or like it has just done a flip. I went to an internist two days later. He got all my recent echos and angiogram report. He said my heart rhythm was totally benine and not to worry about it.
He also said that I would not need surgery for awhile but has decided to check me for lupus and do a cat scan to try and figure out the chest pain and sob that I have daily. Apparently having a dialated ascending aorta and root, bicuspid aortic valve with mild to moderate stenosis and moderately severe regurgitation should not cause chest pain...so here I go for another round of tests. At the end of this month I have a thallium stress test and then I wear a holter monitor for 48 hours and in the mean time I feel like crap and don't seem to be getting any better. Work is a stuggle and so is coping and taking care of my 3 children....by the end of the day I want to shoot myself. Sorry to rant on but I feel that I should be on beta blockers or some kind on anti arrythmia meds to ease my symptoms. This whole experience is wearing me out. Plus it is taking way too long to cure my symptoms. Maybe all I need is some valium...good luck to you....hope your medical problems get solved and treated a lot faster than mine.

Char

[ALCapshaw2]

Char-

Your story sets off my alarm bells!

Yes, PAC's and PVC's are considered benign BUT, there are medications which can control them and make you MUCH more comfortable. I was able to get by with only a low dose of Toprol XL (25mg) for several years to control my PAC/PVC's. Shortly after I became more sensitive to caffeine, I also would develop Atrial Fibrilation upon any exertion more strenuous than walking the dog. SOTALOL (generic form of BetaPace) got that under control.

You mentioned an ER Doc and an Internist. Have you discussed your symptoms with a CARDIOLOGIST? Hopefully they would be more willing to medicate your symptoms. Also, are you on Coumadin? IF you are going into A-FIB, then you need to be on Coumadin to prevent clot formation and reduce your risk of STROKE. Has anyone put you on a 24 hour heart monitor to see how often you heart goes out of rhythm?

Bottom Line: I would do whatever it takes to be evaluated by a CARDIOLOGIST as soon as possible. It sounds like your doc's are 'blowing you off'.

'AL Capshaw'

[char2mar]

Hi Al:

Yes I have seen a cardiologist and he has blown me off. He refered me to an internist who has in turn told me to talk to the cardiologist. I do have a 48 hr holter monitor test coming up on the 30th of March and I have a cat scan scheduled on Monday the 14th of March. I am also scheduled for a thallium stress test at the end of March. Seems which ever way I turn I am always being passed from one doctor to the next. Not that I am hoping for a bad cat scan but I kind of hope that soming comes out of it so I get treatment as soon as possible. I can't stand how I have been feeling these days. I even cut out the caffine and I still have the PAC's. Another symptom I have been experiencing is hot flashes that last for about 2 hours or more at a time. I get really flushed and spike a fever. The fever and flushing subside after 2 hours with or without taking tylenol or asprin. I really have no idea as to what is going on with me. Hopefully the cat scan can shed some light on what is going on. I have had an angiogram, 3 echos and a TEE done within the last 3 months and every test came back different. I have been rated from mild to moderately severe regurgitation of the aortic valve. The stenosis of the aortic valve has been mentioned in the angiogram and one echo but I have yet to find out what the actual size of the valve is. My biggest concern at the moment is the swelling of my carotid artery and the burning, ripping pain that surges through it from time to time. Also the shortness of breath is bothersome. Hopefully by the end of March I will get all the answers they need to start treatment. Thanks for your interest and the advise, I surely need it at the moment.

Take care.
Char.

[ALCapshaw2]

One more suggestion Char -

Since you say you do NOT know the size of your valve, you can get that information by obtaining copies of your Echo and TEE reports. It would also be good to get a copy of your cath report. A decent medical dictionary helps with the technical terminology. Also, there is a link to a reference that explains those tests in the Reference Forum.

It might be a good idea to take copies of those reports with you when you have your stress test, especially if your valve area is approaching severe (<1.0 sq cm). Surgery is usually recommended when the aortic valve area drops below 0.8 sq cm.

Does your PCP have copies of all of those reports? If so, would he/she be willing to be your advocate with the cardiologist(s)?

'AL Capshaw'

[char2mar]

Hi Al;

I have all 3 reports of my echos and none of them report the size of my valve?????Whats up with that? I also seen the preliminary TEE report and it also didn't mention the valve size only that I have mild AS and dilated aorta. The angiogram report said I have AS, dilated ascending aortic and root. It mostly mentioned the size of each of my conorny arteries as I suspect they wanted to rule out CAD as the cause of my chest pain. I think in all 5 cases the tech or doctor reading the test only assessed what was ordered. First echo was to rule out MVP. 2nd echo to evaluate AR and chest pain. 3 was because the cardiologist didn't believe the first two echo reports and wanted me to have one done in his own faucility. He didn't even read it, some tech did and it reported that I have mild AS, moderate AR, Mild Mitral Regurg, and trace plumonary and tricuspid regurg. Also that I have a bicuspid valve, and dilated ascending aorta. Good news is that on Monday I have a cat scan ordered and I am hoping that it is helpful in my getting some type of treatment. I do not like the cardiologist that I was assigned to and I am currently looking for a new PCP so I can get refered to a cardiologist I think will help me. Because of this site I have learned so much and I am following a lot of your advise and others. Keep your fingers crossed for me and I will keep you posted.

Char.

[ALCapshaw2]

Good for you Char. Keep pushing for answers until someone determines the root cause of your problems.

Since you truly admire you PCP, how about having a 'heart to heart' talk with him/her about your frustration with the Cardio and ask if there is someone else you could be referred to.

As Nancy says, " Never give in and Never give up" (or vice versa).

'AL Capshaw'

[Marguerite53]

Well, after reading Char's personal situation, I feel MUCH better!! Char, you are going through a very stressful time!! I have 3 children, but they are grown, 22,20,17. I know that I could not have done this limbo time when they were younger. I don't know the ages of your children, but oh my....I just know you are exhausted!!

Al's advice has been good all around. The only other thing that I would suggest to you, being a mother, is this. You are the most important thing in their lives right now. Treat yourself as you would your children. Would you be satisfied with ANY of these answers, put-offs, etc. if they concerned your children? Probably not, "mother bear" would be going crazy insisting on complete answers and caring attention. Please. Treat yourself as if you were your own child. Perservere.

As for me, I had dinner with a double cancer survivor last night (new neighbor) and it's amazing how we all survive these traumas! Anyway, for a time she said she went on beta-blockers due to some A-fib possibly a result of chemo. She loved them! She said they gave her the most relaxing, worry-free relief. Now I'm curious about beta-blockers (I'll peruse the site). Any experiences there? All in all I hate drugs since I'm allergic and sensitive to so many, so I feel like I have to need things really badly before I'll actually swallow them.

Thanks again.

Marguerite

[KimC]

OY! I would definitely ask your cardio for a trial of an ACE-inhibitor or beta-blocker. One of the greatest risks with aortic valve disease is sudden cardiac death. HELLO!

Most PVC/PAC's are benign FOR PEOPLE WITHOUT structural defects. I rarely experience irregular beats now that I'm taking medication.

Abstaining from alcohol, caffeine and stress helps, too but if you're ending up in the ER with the beats, then you might want to push your doc for meds.

My .02.

Best,

[char2mar]

Well I had my CAT scan today....results in 3 days or so. As for my PCP, I am still looking for a new one, so for now I have to rely on the internist. I still don't really understand how useful at CAT scan is for valve disease??? Anyone out there know???? They did a scan of my chest (heart and lungs). Will it give a more accurate result of my aortic stenosis and regurgitaion? I realize that it should give a more exact size of my ascending aorta but what about the valves themselves. Apparently all four leak. Hopefully it will show something....some concrete reason as to why I have the chest and neck pain...and all the other symptoms I have been experiencing. As for the ages of my children they are, 8, 9 and 13. (love them but somethimes they can drive me crazy!)

Well have a good day!

Char

[Abbanabba]

Char - reading your post was almost like reading the things I'VE been posting about recently. I'm also having ridiculous amounts of PAC's & PVC's and have been told there's nothing to worry about (..even though my last Holter indicated I'm having upto 10,000+ a day!!! ..) and they don't think beta-blockers, or something else to control these are a consideration :confused: (..and I don't eat or drink anything caffienated..). I've also got regurgitation through all of my valves, with severe regurg through the pulmonary, an enlarging aortic root, but again, all the doctors and cardios are telling me that "your right ventrical is coping, so we don't need to do anything yet".

This was determined from an MRI (which I guess is the same as a CAT scan), but prior to the scan they had wanted to replace the valve. Now it seems they're waiting until the aortic root is "bad" enough to replace that and the valve at the same time. I have to wonder why they want to wait until everything else is falling apart when earlier intervention might prevent things from becoming worse in the first place.

I really understand your frustration and I hope your results give you some answers.... there's nothing worse than not knowing when you can start to feel well again.

Sending positive thoughts your way.....
Anna : )

[char2mar]

Anna:

Seems you and I have much of the same problems. I think the MRI is a more accurate test then the CT scan. It gives a 3D image of you heart where as the ct scan is a more detailed x-ray but like any test the results are only as reliable as the expertise of the person who reads it.
On another note....I too feel like ...what the f...are they waiting for, congestive heart failure, aortic dissection....autopsy report....? All I want and I am sure you do too is to start feeling better and to be able to work and take care of family without feeling like shit every day....I know....I am such a baby...boohooo, but it sucks to be me at the moment...considering I have been healthy most of my life. These past 4 months have been hell. I really feel for anyone with a chronic health problems. Lets hope we both get the proper treatment before too much damage occurs.

Right now I have sharp pains in my neck and my heart is doing flip flops.

Take care....
Char

[Marguerite53]

So, Char. Is this week any better for you? I hope so.

I had my echo 3/15. I called the cardio the next day as the echo tech said the PVC's were quite obvious and constant while he was doing the echo. I was very tired of the hyped up flippy floppy burning feelings and asked for some suggestion from her. She did in fact start me on Atenolol. Low dose. This beta blocker took them away almost immediately. They do come back, though. For some reason, especially after hot meals. I've been watching the caffeine intake (haven't drunk anything but decaf for years, but still, I know there's a little caffeine in decaf). What appears to affect me is salt. They started back up with a vengeance after a yummy Spanakopita (very salty). My bloodwork showed a higher than average salt (minor) and I'm not sure why -- I will ask her about that on April 5th, my next appointment.

If I hadn't gotten the beta blocker I would be impossible to live with. My heart pounding was really driving me nuts. I don't know what it is that allows or prevents doctors from using these, but other than making me abit dizzy and sleepy initially (I'm stabilizing now) I'm very grateful to have them.

I'm also still on Diovan 80 mg. for blood pressure. She never said to stop taking it, so I havent. My blood pressure has dropped to 110/65 (from about 120/70+) so I figure that's a good thing.

Let us know you are doing, Anna and Char.

Marguerite

[char2mar]

Marguerite

Glad to hear your PVC's are now under control. As for myself it is still an ongoing saga. I got my CT scan results back and they did not evaluate my aorta....but my lungs, spleen, and pancreas is normal. My liver has a tiny hepatic cyst (5mm in size). Nothing to worry about at the moment they say. The internist said that he will personally go over my cat scan with the radiologist to determine the exact state of the aorta. He doesn't seem to worried about the PVCs and PAC that I have been experiencing. He also said that he doesn't feel that my chest pain is heart related. He put me on effexor xr (antidepressant) to help me sleep at night. He feels that I have chest basket pain due to stress.(????) As for my heart troubles he wants me to go into a clinical trial for drugs that can stop the progression of AS and will help in slowing the progression on aortic dialation. (not sure if I will qualify and not sure if I want to go that route either.) He also ordered some thyroid tests because of the swelling in my neck. I have to get an ultrasound on my neck next week. In the meantime my thyroid antbodies came back sky high but my TSH and FT4 were within normal ranges, so it appears I also have a autoimmune disease. Probably Hashimotos....But don't know for sure. Another issue I have to deal with....more tests and more doctors...grrrrr. Perhaps one day I will get all of this worked out and will finally get some treatment....but hey.....at least I won't be depressed...LOL...

Keeping the faith in man kind
Char.....

[Abbanabba]

Marguerite -
I'm glad the BB's have helped with your PVC's. That must be quite a relief! It's also great that you've been able to identify dietry changes that aggrevate the problem, which will make it easier to keep in check. Just be sure to keep a check on you BP if you're now taking BB's in addition to your BP meds. I'm sure if your cardio never mentioned to stop taking the Diovan you should be OK, but it wouldn't hurt to keep an eye on it.


Char -
Sounds like you've had a bit of mixed news.... I'm glad the CT scan showed most things were normal. A bummer about the autoimmune though :( Still, at least if it's been diagnosed, hopefully they will be able to start you on a treatment progam to help you feel better - even a little bit better (..fingers XXXX'd..).

I hope the Effexor works for you. I was put on this to help with my alleged depression (..which was apparently causing all my symptoms - NOT!!..) and I was one of those people who had a less than pleasant experience with it. It completely messed up my sleep (I was lucky to get 2-3hrs a night) and made me feel absolutely HORRENDOUS!!! I told my doctor after a week and she insisted that I finish the current prescription (1 month). I persisted for another fortnight, but was so wrecked - physically and emotionally - that I told her I was not going to take them anymore. A few months after that I read an article about Effexor which showed that in some people it exacerbated problems to the point where some had suicided (..of course when they complained to their doctors that they were still feeling dreadful their doctors upped the medication - which just made the problem worse!..). Not that I'm suggesting this will happen to you. For some people it has been very effective - but just be aware!



In the meantime I'm still playing the waiting game and struggling with this oppressing fatigue. I see the cardio in May to discuss my current status and hopefully they can give me some idea about when there might be some light at the end of the tunnel.

Had a thryroid test last week and this seems to be OK, although the TSH had dropped from 3.8 (Jun 04) to 1.59 - but then it was only 1.91 in Nov 02, so I don't know if that's "significant" or not. Otherwise all seemed to be within "normal" parameters, so I don't know if that's really an issue (..the doctor still hasn't bothered to call me back..).


Best wishes to you both,
Anna : )

[Nan]

Char, Anna and Marguerite, just wanted to send you all some support about the pvc's. I know how you are feeling, I am lucky that Betapace has helped my a-fib and pvc's, but when I wasn't on it...oh boy!

I hope that all of you get the relief and medical care that you deserve!

Hang in there with being pro-active about your care.

[Marguerite53]

I appreciate the feedback. Now a week into it and it's definitely like a see saw. Some hours it's gone, some hours it's back, but nothing like it was. A serious improvement. I actually feel sharper, somehow, like it's having an effect on, well, maybe getting more oxygen to my brain!! Definitely been having much more vivid dreams at night. Actually saw that mentioned on a list of possible side effects!! Maybe my memory is improving!! Hey, any fun these drugs can introduce is fine with me!! I'm curious to see the cardio but no appointment until April 5th. She's reviewing my echo now and I should have a copy of that soon.

Nan, :) thank you for the support!! :)

Char, I'm a little concerned about the AS study you have been invited to partake in. If you do start entertaining it, would you please start another thread about it and get some feedback from the community here? Keeping in mind that you could be chosen to get the placebo. Please keep us posted on that.

Anna, I know what you mean about being tired all the time. I'm really tired of being tired. It is definitely increasing. I don't hop up out of bed in the morning all refreshed and ready to go. I'm dragging every morning. I really have to make an effort to get things accomplished. I take rests, for heaven's sake!! NOT LIKE ME AT ALL!!! So, any time you need some empathy, you've got it. I'm not incapacitated by any means. I just don't have my same energy level anymore.

Let us know about the MRI, Char. Take care, ladies!!

Marguerite

[char2mar]

Hi, its me again....

I had my thallium stress test today...it went okay I guess. I lasted 6 minutes before they shut it down. My BP went as high at 168/98 which I am sure is not good for my dilated ascending aorta. My problem now is that I have this weird sensation in my neck and chin...actually my chin and under my neck feels numb...Has anyone ever experience this after a thallium stress test. I had some chest pain about an hour after the second round of xrays. It is gone now...only the neck and chin are bothing me....debating on whether I should go and get it checked out. I think I will call the health link and see what they say. Have an ultrasound on my neck and thyroid on Wednesday and have to wear the holter monitor for 48 hrs on Wednesday too. Gawd I hope that is it for tests and then they will decide to treat me. Keep your fingers crossed.

Margurite I am glad you got the meds to contorl your PVCs. My doc doesn't seem to concerned about them...perhaps after this lastest round of tests something will get done. As for the study for AS...I do not think I will participate in it....Yes, knowing my luck I will get the placebo. LOL.....Least I still have a bit of humor left. Take care.

Char

[Marguerite53]

Char, you are just on my mind! how are you NOW? are you better? Would you post on the Stress Test thread, or ask some more experienced members about your symptoms. Or, let us know what a doctor said if you have called.

Hope you are feeling better.

Marguerite

[char2mar]

Hi again:

Well I never called about the numbing in my chin and neck but I am still around so I guess I will be okay. Had my ultrasound this am and they said that my thyroid is course, pitted and enlarged. The tech said that my Doctor should get the results soon. I really don't know what all this means and how it is effecting my heart situation...guess I will just have to sit back and wait. I am also wearing the holter monitor at the moment...until Friday am. Thats about it. As for how I feel lately, still the same. The antidepressants haven't improved my chest pain but I am getting more rest....Take care and I will keep you posted on things as I learn more. I think they should just take me out back to the barn and shoot me. 6 months ago I had no medical problems that I knew of and now I have a doctor for this and a doctor for that and I am finding out I have all these medical problems...hopefully one day soon everything will be sorted out and I can get on with my life...

Char.