Small mental breakdown

[Gnusgal]

We all know that living with heart problems is hard. But for the most part we tend to do it fairly well. Every now and then, though, it really gets to me... Today was one of those times.

Sometimes I do too much. I know you all understand what I'm talking about. We understand our limits, but we don't feel like taking the time to ask someone for help because it would take too long and it's just easier to do things ourselves... Well, today I did too much. And as a result my heart went "wonky." By that I mean, I went into flutter (I assume that's what it is). My heart rate sped up any time I stood up, and it really went crazy if I moved around. Fortunately, this was after work was over and I was headed home. But it really started bothering me as I was helping DH make dinner. All I was doing was standing by the stove, stirring some noodles. This shouldn't be a difficult task! But my heart didn't seem to agree. It sped up, my chest hurt, and I had to sit down and "bear down" to finally get my heart to slow down. And any time I'd try to stand up again, it would speed back up. I simply lost it. I started crying and complaining about how unfair it was. I just wish I could be "normal." Is that really so much to ask? You'd think that I would be used to it by now, since I've NEVER been able to do as much as anyone else, but I never seem to learn. This isn't the first time I've done too much, and I'm sure it's not the last...

Anyway, I just felt like venting. Don't worry. I don't expect any answers. I'm not concerned about the "episode" as it was my own fault and I know exactly what caused it. I just wanted to whine to some people who "get it."

 

[Harrybaby666]

Hi Gnusgal....

Hi Gnusgal....

Hi There Gnusgal....

I know that I haven't had any surgeries done yet, or pacemakers put in, or my valves fixed or replaced yet, but I just read your post and wanted to let you know that your not alone when you feel like this...I am still waiting to find out what is going to happen to me, and meanwhile, I am still contending with chest pain (yes, I have consulted my cardio) and getting tired when I climb the stairs to my apartment (of which sometimes it seems like an eternity to do), and my heart rate, which my cardiologist's nurse has told me is running on the high side, jumps up to 150-200 beats per minute, I am feeling just as frustrated and worn out with dealing with heart/health issues as you are. I know it's not much consolation and offers very little help, but I just wanted you to know that I am right there with you...and it's times like these that I try to find a good laugh at someone else's expense. I think we will make it through...Don't lose faith...I will keep you in my thoughts and prayers....Take Care, Harrybaby666

 

[Glenda]

Oh I get it completely! Before my heart surgery in June I felt the same way. It just didn't seem fair. I still find myself also doing too much and then I pay for it the next day. God says He won't give us more than we can bear but sometimes I sure wonder. You are in my thoughts and prayers. Hang in there.

 

[Karlynn]

I think we all "feel your pain". I'll have my 13th anniversary next month and I still get those days from time to time. Yup, overdoing it consistantly will through me into a "down period". Stress rears it's ugly head and there goes my heart rhythm.

Do something to spoil yourself!!!!!!

 

[Abbanabba]

Hey Niki, sorry to hear your having a downer. I know how frustrating it can be trying to keep up with everyone else (..there's nothing worse than those pitying looks, or feeling like you're slowing everyone else down, etc..) and paying for it afterward. I read your post from the other day and it sounds like you've had a bit on your plate lately, none of which helps either.

Hang in there, and for what it's worth, you're "normal" in this neck of the woods..!

Wishing you all the best
Anna : )

 

[Guest]

I started crying and complaining about how unfair it was. I just wish I could be "normal." Is that really so much to ask? You'd think that I would be used to it by now, since I've NEVER been able to do as much as anyone else, but I never seem to learn. This isn't the first time I've done too much, and I'm sure it's not the last...

I, too, feel your pain, Niki. Always remember you are not alone...that you are not the only one feeling it isn't fair. I've felt that way all too much, and like you, I never seem to learn either...lol.

I could type all sorts of cliche-ish phrases to boost your spirits, but I get the distinct impression you don't need it. I've read your posts over the years and you seem to have a good grasp of your situation and life itself. What happened to you today...and the effects you felt...are just a blip on the screen of life for ya, I'd say.

Cort, "Mr MC"/"Mr Road Trip"/"The Uniter", 30swm/pig valve/pacemaker
'72/'76/'79/'81/'87 & train & models = http://www.chevyasylum.com/cort/
Spotting MCs = http://www.chevyasylum.com/mcspotter/main.html

 

[Susan BAV]

Niki -

Please pardon my vulgar language but this brings to mind a line from a cutesy little movie from some years ago called "Curly Sue."

The catch phrase I'm thinking about is, "It's a pisser."

Ain't that the truth?

It's a real p#$&!r not having our pump work correctly. My husband builds diesel engines and loves rebuilding fuel pumps. He understood, better than I, why I felt so lousy before I got my new valve. (Another valve is not working properly either but it's not too bad.) If the pump is shot, the engine does not work correctly. (Sometimes it won't work at all.)

I know that you know all of this. You've really been through it, haven't you. I don't even think I'm telling you something that you don't know. But it does feel better, doesn't it, to know that there are people out there who feel for you? Aren't you glad that Hank set up this site?!?! I'm wishing a terrific day for you tomorrow.

 

[ALCapshaw2]

Gnusgal wrote: "My heart rate sped up any time I stood up, and it really went crazy if I moved around."

Hello Niki,

I know EXACTLY what you are talking about. I'm a little over 2 years post op and began having similar symptoms last month. For the last few years, I've been taking a low dose Beta Blocker (Toprol XL 25 mg) to keep my arrhythmias under control and that worked very well, until last month when I noticed that Chocolate (caffeine) and exertion would trigger run-away heart rates.

My Cardiologist switched me to a Sotalol (generic for BetaPace) which is another Beta Blocker that is specifically targeted for suppressing Atrial Fibrilation (A-Fib). A-Fib is typically experienced as a very fast heart rate (150 to 200 bpm).

I suggest that you tell your Cardiologist about these episodes TODAY. Hopefully he will suggest some sort of monitor (24 hour Holter or 30 day 'event recorder' or some such device). The monitor will allow him to diagnose EXACTLY what type of arrhythmia you are experiencing. There are SEVERAL different medications which can help prevent these arrhythmias from occuring. Believe me, they will make your life MUCH more normal.

IF you Cardiologist suggests starting with Amiodarone, tell him you want to take a more conservative approach and exhaust ALL other options first. As many have said on VR.com, amiodarone is a "drug of LAST RESORT" because of several nasty side effects and a very long half life (6 months). Using Amiodarone to suppress intermittent A-Fib is like using a sledge hammer to crack an egg.

It's time to make that call. Go pick up the 'phone now. You will be a much happier 'heart patient' once you get those arrhythmias under control.

'AL'

 

[Marguerite53]

Hope today is better for you!

Hope today is better for you!

Niki,
Thank you for writing! We all stumble through life dodging our emotions and it is so important to be able to air our grievances and vent once in awhile to diffuse the affect. How lucky we are to have this place. It's like coming into a comfortable living room, plunking into a cushy chair, heaving a big sigh of relief, talking uninterrupted for as long as we want, and getting lots of listening, supportive, respectful, non-judgemental responses.

I hope you will check with a doctor to be sure it was just a bad day. Come on back and let us know how you're doingl.

Marguerite

 

[Gnusgal]

Al, I appreciate your input. Here's the thing, though. I've been dealing with this sort of thing for quite some time. I'm on beta blockers already. And I guess it was back in November of last year when I told my electrophysiologist about the episodes of it happening when I would get into the shower in the morning. At that same time I was also being treated for migraines by a neurologist. She wanted me to increase my betablocker to help prevent my migraines. The episodes stopped (or at least decreased) when I increased my beta blocker (toprol). I was SO much happier. But in early August I had a MUGGA scan come back with not so good results. It said that my RV function is down. The only thing my cardiologist and electrophysiologist could decide might have triggered this decrease would be the change in the betablocker. So they decreased my dosage. At the time that they decreased it I requested that it not be decreased all the way to what it had been a year ago, because of the arrythmias, but maybe my body has adapted to the amount it has been on? I don't know. At any rate, I'm afraid that I may be in a catch 22 type situation. Do I go on a med that will make me feel better, but decrease my RV function, or do I continue to feel bad and hopefully get longer life out of my RV???

At any rate, I guess I ought to call my card. Probably won't be able to talk to her until next week, though, since it's late. Thanks for all the words of understanding...

 

[gijanet]

Oh, Niki.............

Oh, Niki.............

your post just makes me want to cry right along with you. I was so hoping that things had smoothed out for you by now.

I know all too well how you feel, not for me, of course, but for Katie. I, too, had a major meltdown last May when we found out one month post-op that Katie's valve repair had failed and the valve was not holding up under pressure. It's just not fair that my precious little girl has to go through so many tortuous procedures and operations, and she can't just be a "normal" little girl worrying about potty training and monsters in the closet and other three year old worries. I still have to bite my tongue everytime another parent says he/she can relate 'cuz their kid had their tonsils out.............oh, yeah............that certainly compares to multiple open-heart surgeries! It's not fair for Katie, and it's not fair for you.

I hope that you get to feeling better soon - both physically and emotionally.
You remain our mentor and idol and I am sending super cyberhugs your way. P.S. You know I can only endorse the calling your doc suggestion. Much love and you will be in our prayers.

 

[ALCapshaw2]

I feel like I'm right behind you Niki!

Please do follow up with your Cardio and maybe even your EP. I've scheduled an appointment with an EP to discuss treatment options as I get closer to the dreaded Amiodarone recommendation.

Several VR.com members report good results in suppressing arrhythmias by taking 400 mg of Magnesium supplements. My cardio tells me that as long as my magnesium levels are OK he doesn't see how this would help, BUT what about those testimonials? Good question for the EP.

You may also want to correspond with RUNNER about her ablation treatment.

Bottom Line: Please get it checked out and please let us know what you learn. I, for one, am VERY interested in your outcome. I'd also like to know more about the arrhythmia vs. RV connection and treatment tradeoff.

'AL'

 

[Susan BAV]

Hi Al -

I developed a-fib after my valve replacement and the doctor put me back into the hospital to start me on Sotalol. He also gave me magnesium by IV a few or several times, over the parts of four days I was back in the hospital.

Happily, the a-fib went away. Might be worth a try? Best wishes.

 

[ALCapshaw2]

Interesting information Susan.

How long were you in the Hospital after starting Sotalol?
How long did you stay on Sotalol?

Did you have any side effects from Sotalol?

I had moderately intense headaches that moved around for a few weeks but they finally subsided. Felt similar to the kind of headache you get from a nitroglycerin patch. Not fun but tolerable.

My cardio did NOT hospitalize me when for Sotalol which left me with mixed feelings, knowing the risks. He did have me wear a Holter Monitor after 2 weeks and I kept close tabs on my BP and HR during the first couple of weeks.

I fully intend to address the Magnesium benefit when I meet with an EP next week. There is an obvious benefit in side effect / risk reduction to that approach!

'AL'

 

[Susan BAV]

Hi Al -

I went back into the hospital on a Tuesday, two weeks post-op, when the cardio began the Sotalol and they released me Friday of the same week. I was on a heart monitor the whole time and that was also when they gave me the IVs of magnesium. I was on the Sotalol for three months (Coumadin also) and he took me off of both at the end of the three months, cold turkey.

A little over a week after I began the Sotalol, I had a terrible pain in my leg/torso joint, not the hip but rather toward the front, which spread to both leg joints. It was an awful pain and I could literally barely walk for several days. We called the cardio, who's two hours away, but we only were able to get ahold of the "fill in" doctor who said he didn't think it had anything to do with the Sotalol. I think it did but I have nothing but circumstantial evidence, no proof. It was an horrific pain which gradually lessoned and only went completely away recently, about 10 months later.

Hope you find safe relief for your rhythm problems; best wishes!

 

[Gnusgal]

I had been put on Sotalol several years ago, before my valve surgery. I remember being in the hospital for a few days to be put on it. I don't remember how long, though. It was while I was in the hospital for my VR surgery that I was taken off all beta blockers. The EP at Texas Children's said I didn't need them anymore, now that I'd had surgery. I found that interesting, seeing as I would go into flutter sitting in my hospital bed, doing nothing, and nurses would come running to see what I was doing to cause my heart to jump up to 120+ bpm. Even with this evidence, the EP continued to say I didn't need a betablocker. There was even one time that a doc was in my room and I could feel my heart about to go into flutter (just this anticipatory type of feeling) and told him, so he put his stethescope up to my chest and HEARD it jump up to 140 bpm. STILL, the EP there would not put me on a betablocker (I don't think I ever mentioned that the EP at TCH is the ONLY thing that I really didn't like)! Said it was nothing dangerous and I could live with it. But I was miserable. It wasn't until I got back to Dallas and my own cardiologist and EP that I was able to convince someone to put me on something to stop them. That's when I went on toprol. I've been on it for two years now. I wonder if I need to go back to sotalol??? Perhaps it would help more with the flutter, but not cause the RV function to go down? I don't know... I'm not a doctor and certainly don't understand any of this... I just wish my heart would do what it was supposed to do in the first place.

 

[Gnusgal]

I thought I should let you all know the latest. Today I talked to my cardiologist and let her know what was going on with my arrythmias and whatnot. She wants me to try to come in this week and get an echo and event monitor so that we might be able to figure out what is going on. She's also going to talk with my EP doc as well to see if he wants to see me or has any suggestions. I started to get kind of teary telling her about everything and how frustrated I was getting with my heart interfering with my daily life the way it is starting to. She was completely understanding and I have every confidence that she will do everything she can to figure something out. I am so glad that I have her for my cardiologist.

Thanks again for being here to talk to!

 

[JimChicago]

Niki -
If you look up the side effects of beta blockers on the internet you'll see plenty of articles about the need to reduce the dosage very gradually if you're going to reduce the dosage. Reducing the beta blocker dosage abruptly can cause that rebound heart rate speed up.

I have a pill crusher I use to change dosages more gradually than to go from 50 to 25mg in one jump for example.

From:
http://www.chfpatients.com/coreg.htm
>>>
Side effects do sometimes require that a beta-blocker be stopped. When beta-blockers are suddenly stopped, a rebound effect occurs. Heart rate greatly speeds up and CHF gets worse. For this reason, we lowered the dose very slowly. Despite this precaution, heart rate in our patients shot up from 66 beats per minute to 92 beats per minute.
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