I'm scared

[danelle]

Hi, I am having lots of irreg beats-PVC's, PAC's, runs, flutters, etc over the past day or so. enough to where it is scaring me. I did see the dr today(not specifically for that) but didn't seem concerned. Just wondering if I could get a little reassurance from someone. I have been through this thousands of times but each time it feels a little different and somehow "worse" than before. I just don't want to die and leave my kids behind.

I know I haven't posted much lately but have been down and haven't had much energy at all but I sure would appreciate any responses.

Sorry I haven't been there for you all lately

thanks a bunch

[RunnerGirl]

<<Hi, I am having lots of irreg beats-PVC's, PAC's, runs, flutters, etc over the past day or so. enough to where it is scaring me... I have been through this thousands of times but each time it feels a little different and somehow "worse" than before.>>

Wow, Danelle! I could have written this exact post SO MANY TIMES! I, too, get weird spells when my HR is just so irregular - lots of ectopic beats, lots of rate variation (when I inhale it will speed WAY up and when I exhale it will low WAY down). I've been the the ER several times, and each time I always say, "Look, I know I have benign rhythm problems, but this one just feels different." And every time, I get told the same thing: You're fine. PACs, PVCs, sinus tach and sinus arrhythmia - but nothing sinister. Go home and stop stressing yourself out.

Try to stay calm when you have these episodes - easier said than done, I know. And rest in the reassurances you've no doubt been given many times. If you have a structurally normal heart (and I'm sure you've had a echo to determine this is the case, right?), these rhythm problems are harmless. Uncomfortable, yes, but completely harmless.

If you haven't tried it already, maybe a low dose of beta blocker or magnesium supplementation might help? I take 250 mg of MG daily (which is actually a very low dose) on the advice of my cardiologist, who says MG can reduce the frequency of PACS and PVCs. I have noticed a slight improvement in mine since starting the MG.

Good luck and know that you're not alone!

And, if it makes you feel any better - I've run two full marathons since I started having my heart rhythm problems. So I wouldn't worry about leaving your kids behind! :-)

[morgan617]

danelle, i am on a monitor right now for the same reasons. it is really scary. it's like you finally get used to what's going on and then something new starts to throw you completely off. arrythmias are really common. if you are not symptomatic with them and they are just annoying, i wouldn't worry too much. i just asked my doc to put me on one to see what's going on. i think it's reasonable to ask for things if somethings changed or gotten more frequent etc. he or she should be willing to accomadate you. if for nothing else, than just reassurance. it's easy to not take things seriously when you're not the one going through it. hang in there and just know we all go through periods like this. it's just another little mountain to get over. i've always hated the fact i can feel my arrythmias. you know most people can't. lucky ducks. morgan

[danelle]

Thank you! I am on atenolol every day, have been for 15 yrs. But I will try the Magnesium too. I don't know why this gets to me. I guess it's when they get so irregular that you can't breath good and you feel like your gonna pass out. The last time this happened and I had to call the ambulance, he told me I was in AFib-I stayed that way all the way to the hospital. Then when I got there it broke. I find that coughing will SOMETIMES get me back into a more reg rythm but not always. THis is so frustrating. I am tired of letting this fear control me. It's just a vicious cycle i guess. your quick response means the world to me

[morgan617]

danelle, what you said is good. if you are in a really fast heart rate, sometimes coughing, baring down like you are having a bm, or squatting and coughing will help stop it. however this is not a good thing to do if your rate is slow! we used to teach these things to people who kept having psvt. valsalva maneuvers. morgan

[futurehope]

Danelle, Dumb question, but have you seen a cardiologist about your problems, and discussed the fact that you have had atrial fibrillation? Just wondering. My elderly Mom (79 yo) had atrial fib (felt really bad when it was happening) and the medical personnel took it quite seriously. I'm just wondering why this is treated differently in young folks than it is in elderly people? I do not know much about heart problems so I do not understand?!

[EarthMother]

It IS scarry danelle and probably of all the symptoms I get the PVCs are the worst. For me, I've built such a strong neural network between PVC and "I'm going to die NOW" that it is really very hard to break the rut.

But after years of this, the docs must be right. This isn't going to kill me. (I say that now of course, the next time it happens I'll have total amnesia :-)

For me the magnesium supplements have worked wonders. I take a 200 MG tablet, sometimes three times a day, but at least one every day. I think you can take up to 800MG. Lots of people with PVC and/or panic disorder swear by the magneisum. It may take a few months to really stabalize but as long as you are taking only 200 mg at a time, there shouldn't be any side effects. If you take like 800 all at once, I think it causes abdominal cramps. I've never had a problem on 200 mg, even three times a day.

My cardiologist explained it all to me very well, even with a little picture on the white paper covering the exam table. I had noticed that I would occasionally get these really HARD ectopic beats and what felt like an electric shock running down my arm. He drew a picture of the heart, with some volume measurements -- say 500 ML (I can't recall the exact amount.) And explained that most of the time, the heart takes in 500 ML and pushes all of it through in one beat. But sometimes, if my heart skips one beat, it may take in 800 or more ML, so then when the heart beats next this is the big volume BEAT that I feel in my chest. Because I can feel it pulse down my arms, simply means my heart is very strong. And that is a good thing. He ended with something like ... "You are perfectly fine. I know this is hard when you feel it. But I am going to urge you to try really hard to live with it. Because the fact is I can give you a strong medication to help it, but the chances are 1 in 500 that the medicine I give you could kill you. On the other hand I am 100% sure that the skipped beats won't. So try really hard to accept them. You are really fine. I don't want you to think of me as your cardiologist. Because you don't need one."

That was several years ago. And I still struggle with the "mental" piece of it more than anything else. I've learned to recongize when it is more likely that they will occur .... like if I've been standing for a while and then quickly bend down. For POTS people I think this is not unusual. In my case at least the problem was so many years of not understanding this is POTS and my body/mind writing these hard codes for "I'm dieing", "This is really bad, so I must be in danger" and ofcourse the good old "I'm crazy."

Good news is, we aren't crazy, this does feel really bad, but this isn't going to kill us.

Here's my inspiration card I pulled today to contemplate:

Forget about your life situation and pay attention to your life.

Your life situation exists in time.

Your life is now.

Your life situation is mind-stuff.

Your ife is real.

For me, the drama of the PVCs is my life situation, it's all based in the mind and a mind-made future that is simply impossible to cope with. I'm working very hard to stay in the NOW.

Good luck to you on your healing journey.

EM

[JLB]

I'm one who can feel the irregular h/b, too. The rest of the symptoms I could live well with, but ihb is the one that makes me want to curl up in bed and never get up again sometimes.

Danelle, have you read The MVPS/Dysautonomia Survival Guide? It has a lot of info on self-care, and addresses this particular aspect very well. I found especially interesting the theory that when the body is dehydrated, the heart can actually shrink a bit in size, but the Mitral Valve does not, and it "flops" around - then creating the ihb.

I start fluids as soon as I get up in the morning, use relaxation techniques, and even if the ihb is so intense (night before last, it was almost enough to shake my entire body) that I can't get to sleep, I rest. I'm also having some success with following a diet like a diabetic would - does a small, healthy snack ever take the edge off the PVCs for you? And it may sound weird, but when they start, I talk out loud about whatever I'm really thinking - takes the edge off the adrenaline output. And of course, prayer is always a great comfort.

I know what you're going through. Try to fight back, if you know what I mean - don't let this beat you. I'm havng some trouble again with tons of PVCs when I eat, but I'm learning to ignore them and enjoy a meal just because I'm NOT going to let this disorder ruin my life. As scary as it is, every time you decide to live well no matter what your body is doing, it's like a victory - builds hope and confidence, and attitude can go a long way towards healing.

[Guest Julia59]

I have an ODD question-------------------

Do you guy's feel those irregular Heart Beats---kind of on the right side right around your abdomin aorta area? It feels just like an irregular beat only like a vaccuum feeling in that area-------thats where I feel my PVCs. I know I have had them documanted-----but only as single one's. I haven't had full runs that I know of.

The most scarey event was just before my POTS diagnosis. I was still very weak after a really bad crashing with my still unknown POTS. But I was doing better then I had in 3 months. I went to the mall to pick up my necklace that I had repaired. After picking it up I felt pretty good so I put a little skip in my walk. With no warning at all I had a horrible heat rush very suddenly, then my heart was beating so fast it felt like it was just quivering----then thumping----then back to a more normal range. It almost felt like a rushing of blood right below my heart. All this in a few seconds that seemed like an eternity. I had a grey out and tunnel vision and didn't know if I should sit---stand--go to the bathroom---or what.

I got over it but was so shook up by the episode that I drove myself to the emergency room. When I got there my HR was only around 85---BP was in the normal range---maybe a little high---130 over something. This is how I ended up finally getting the tilt table test and a POTS diagnosis.

To this day I have often wondered what that was. Was it my hearts way of telling my there was not enought blood up there? I just wish I knew. These things happen----like a peek-a-boo game. They only happen when no one is looking or when there not being recorded on a monitor.

Messes with my head. I don't get them too often, but then again I don't push myself much.

Sorry to ramble----but glad to get that off my chest-----no pun intended---LOL

Julie :0)

[MomtoGiuliana]

Julia59 I have had the same experience you have--the awful fluttering/quivering feeling (during or following exertion--e.g., climbing several flights of stairs). I have described it to my electrophysiologist/POTS specialist and he has been unconcerned b/c it is so short-lived when it happens. He said it was probably a brief episode of atrial fibrillation and said it is almost always a benign condition quite common in young women. Perhaps this means it gets better after menopause?!

The PVCs are the scariest part of this condition, no question. I get a lot more of them since I decided to try going off the beta blocker.

Drinking plenty of fluids seems to help--also eating lots of fresh veggies and fruits--which I think must keep my potassium up?

It is comforting to know that others are living (well!) with this problem too.

Take care everyone!

Katherine

[blackwolf]

I have to agree with alot of the others, the irregular hb is one of the most uncomfortable things I've had to deal with in all of this. Next to the near fainting/fainting that is. Like one of my friends with MS says, "it's not the fall, it's the stop at the end that gets you." I can say, however, that mine last from anywhere from 15 secs to 5 minutes(down right sickening). And, sorry Katherine, for me they didn't end with menopause, but they have gotten to be not as often thou still lasting when they do hit.

I hope you can learn to handle them with or without meds and that you get over them. They still scare the *!*!*! out of me.

Blackwolf

[MomtoGiuliana]

blackwolf--when my doctor made that comment about PVCs and brief atrial fibrillation being common in young women, my strongest thought was, ok, but I am probably always going to experience this! I am curious though if there are cases where it eases off with menopause--otherwise, where does this understanding that this condition is one of young women come from, I wonder??

BTW, overall I feel better now off the beta blocker, it's just these irregular beats are much more frequent and forceful. I really have to pay more attention to keeping plenty of fluids in me now.

Katherine

[futurehope]

Forget about the idea that the heart problems resolve at menopause. Where do the doctors get their ideas from?! They didn't ask me!

[Guest GayleP]

They didn't ask me either. I think everything has gotten a lot worse with Menopuase.

If you are young they tell you all your symtoms (low BP, PVc's etc) are because you're young.

Now that I'm in Menopause I'm told it's because I'm in menopause.

It doesn't make sense.

GayleP

[EarthMother]

Terrific advice JLB. That book on MVPS/Dysautonomia, do you think it is helpful for any case of PVCs and ectopic beats, or only those officially classified as coming from MVP? I found it on amazon and it looks like a good read.

EM

[morgan617]

i've had arrythmias forever, but they are much worse since my ablation. the stupid thing is, i was always exhausted because my heart rate was rarely below 100 and now it doesn't go above 80. the cardio says, oh good, now you feel okay. WRONG. i have zillions of arrythmias and my body doesn't tolerate rates that drop to 50 when it's been over 100. that's a 50% rate drop and i'm supposed to feel good.... i really wouldn't wish this stuff on anyone, but once in awhile i think if docs could just have these symptoms for a couple of months and then talk to us..... morgan

[JLB]

EarthMother asked:

That book on MVPS/Dysautonomia, do you think it is helpful for any case of PVCs and ectopic beats, or only those officially classified as coming from MVP? I found it on amazon and it looks like a good read.

It's actually great for anyone suffering from any of the symptoms we discuss here, because it deals with the entire body experience and the reasons they occur, plus a wealth of information on how to deal with them - both with and without meds. The goal of the book is that MVPS/D people will at the very least live well, if not completely reverse their symptoms.

The authors state outright that MVPS and Dysautonomia are the same thing. There is a difference between MVP and MVPS - tons of people have MVP with no symptoms, and it's a benign condition, but there's a syndrome that develops in others that is Dysautonomia. Or to look at it another way, the misfiring of the ANS is what's causing the symptoms.

I've read Frederickson's Confronting Mitral Valve Prolapse Syndrome - it's a good reference, but it was written years ago and is a bit lacking in some areas; I'm in the middle of Kristine Bludau Scordo's Taking Control, and so far I'm not as impressed with it as I am with The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide - I really think the Survival Guide is the best book on the topic. Between this place and that book, I'm learning what to do to really address the source of the problem, which is in my ANS and NOT my mind, if you know what I mean.

Geez, I could go on about this book for hours... I really wish I could get a copy into the hands of everyone here.

[danelle]

Thanks to everyone for their responses and wonderful ideas, I am going to get the book!! Yeah, I have seen a cardiologist for 18+ yrs now, more than one and in more than one state. i won't get into the details of our conversations other than to say that I have been told(prior to my POTS dx) that I am a healthy young female. I have been treated differently since my dx but basically the same reaction to my arrythmias. When my husband had the same problems with arrythmias, he was worked up for a MI, kept in the hospital, given a nitro and heparin drip and had tons of tests, including a heart cath-which I also have had but it was a different story. I don't think that we will ever get out of the stigma of the difference in how men and women are treated-at the same age, condition etc. not during our lifetime anyway.

ANyway, your posts have been very helpful and reassuring to me. Unfortunately, this post may come up from me again when things get bad again(worse than they are) and I start doubting things again but I will try and look back at this one first.

Thanks to you all, many hugs sent to all of you

Danelle

[morgan617]

danelle, i told my doctor that if i walked into an emergency room with a man exactly the same age and with exactly the same symptoms, i would be given an ativan and told to go home and he would have every test known to man and be admitted for several days. he got so mad and said that wasn't true, or at least he hoped it wasn't. a week later there was an article in the paper that said more women than men die of heart disease because their symptoms are ignored! so he said i was right. duh... it is just getting to a point where women are not being ignored, because they can't ignore the statistics anymore. it's a sad state of affairs isn't it. that was not said to scare anyone. but it actually happened to me. even tho my ekg was abnormal, they wanted to give me ativan and told me i could go to work! they never would have done that to a man. ok off the band wagon. i must say that in my 12 years of cardiac nursing, it wasn't until the last 2 or 3 we started seeing more womwn being admitted. morgan

[futurehope]

EM, Can you paste the link to Amazon for the book MVPS/Dysautonomia Survival Guide? I can't find it on Amazon or on Barnes and Noble. Thanks.

[EarthMother]

Hope~

See if this works...

http://www.amazon.com/exec/obidos/tg/detai...id=7THLK6V3CX0U

The book spells out the words mitrovalve etc. that may be why you didn't catch it. Try a search on just dysautonomia ... there are a few interesting hits on amazon. I saw one on autoimmune disease and dysautonomia that caught my eye as well, I may pick up both.

HTH

EM

[JLB]

EM - what's the title for the one on dysautonomia and autoimmunity? I'd like to read that one.

Are d/a and a/i related at all? That's one thing I've really been wondering about.

[EarthMother]

Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know

It's by Mary Shomon, who is big on the thyroid boards at about.com. The amazon blurb about the book mentioned dysautonomia, but I suspect it is a small section. I remember Mary from the boards years ago when trying to get a handle on my hashimoto disease. Anyway I picked up the book along with the one you recommended and a 5$ book for my youngest -- mainly to get the free shipping! :-)

Will let you know if it seems worthwhile.

EM

[RunnerGirl]

I'm going to save this entire thread and read it the next time I go through a rough patch with my ectopic beats! There's some wonderful advice here! It's easy to be brave and offer great words of courage to others when my own heart rate is beating slow and steady! I know I'm going to need to read my own (and others!) remarks here in the future!

I'm very interested in the connection between autoimmune disease and dysautonomia, too, and appreciate the references provided here. I have Hashimoto's (autoimmune thyroid disease) and it seems there are a LOT of other people here who have this an other autoimmune diseases in addition to POTS. Does anyone know if any research institution has undertaken a serious study of the mechanisms connecting the two?

Thanks - and steady heart beats and PVC-free days to all!

RunnerGirl

[EarthMother]

I am SO glad there is a SEARCH command on the forum so that we can look up threads and topics we have seen before.

This time it was my turn to go into the trauma vortex again with heart palps last week. All the zen in the world didn't get me past the "I can't go through this again ... I am going to die this time" saga.

I'd been fortunate not to have any "odd" skipping for months -- maybe years now. And then "out-of-the-blue" my heart skipped a few times the shower, then as I was getting dressed, then again as I tried to go to work then etc. etc. And I was lost in full blown survival mode. I kept thinking of going to the ER but I've been there done that and my cariologist says IT'S FINE. So instead I went to my chiropractor -- sat down and said "Doc, I just don't want to loose it everytime this happens." He looked at me and said "Your heart beats 100,000 times a day .... you know what I mean. One hundred thousand times a day it beats just fine. It serves you really well and has for all of these years ..... so if it wants to dance, once in a while ... LET IT DANCE." It brought a smile to my face. (Did I remember this and instantly calm down when it skipped at lunch ... NO --- but it is my goal and I am not giving up.)

In retrospect I think my electrolytes were off that day -- I had tried to go off of my DDAVP (bad move) several days prior and I had been peeing lots of fluid for a few days prior. Once I realized this ... I pumped up my magnesium, added salt and potasium to the brew and eventually it went away as mysteriously as it came. Ofcourse I spent the next two days in a cave -- worrying it would happen again. But I am gradually gaining my confidence back.

My new favorite product is something called Natural Calm -- it is a magnesium supplement that has better absorbtion than the vitamins I had been taking.

Any other tips on how we handle this would be greatly appreciated.

Good thoughts.

EM