Thought I was doing so well...

[Gnusgal]

I had thought I was doing well, heart-wise. Sure, I've had the issues with coumadin and the headaches and all of that, but my heart seemed to be doing great since the valve replacement two years ago. I guess I got too comfortable...

I had a MUGGA scan yesterday, to evaluate my heart function more thoroughly than an echo can. I stopped by my cardiologist's office this afternoon, after a neurologist appt. down the hall, just to say hi. I didn't expect to actually see my cardiologist, though, as Fridays are usually her day to be in the hospital. However, she happened to be in and heard me talking to her staff so she came out to see me. Apparently she'd received a phone call from the doctor who interpreted the scan and it looks like my RV function has decreased since last year. It was around 60-something % last year, and now it's around 40-something % (she hasn't gotten the full report yet and can't remember the exact numbers). She said it's not in the danger zone yet, but she doesn't like the trend at all. She's going to talk to my electrophysiologist and we'll probably be switching around some meds. Hopefully that will be all it will take, but we shall see... It makes me nervous, though. She says not to worry, but it sure is difficult. I'm a worrier by nature (and genes) and can't help thinking "what if".

Anyway, I just felt like venting to people who understand. Thanks for listening.

 

[Ross]

I've been told by a little bird that you will be fine. Not to worry, so don't.

 

[Nancy]

Niki-

I'll be positive for you. I'm betting that tweeking a few of your meds around will help. You have a wonderful cardiologist and a terrific relationship to her. She'll keep you on the right path, I just know it.

Take care,

 

[hensylee]

Ross' birdie stopped by my ear, too. You will keep us posted, tho. Prayers and blessins.

 

[Gnusgal]

Thanks, guys. It's good to have birdies on my side .

 

[Karlynn]

Niki, don't you just hate those disturbing little surprises when you just think you're going along fine. I got that at my last echo with the news of my aortic valve leaking.

And that little birdie must like to travel distances because it stopped by here to give me your good news.

 

[Gnusgal]

Thanks, everyone, for your words of encouragement and support. I heard from my cardiologist a little while ago and she told me she'd talked to my electrophysiologist. He agreed that we should change one of my meds (lower the dosage) and that it probably was the culprit. My cardiologist and he both agreed that there was nothing to worry about and "prescribed" for me to go out and have fun this weekend. I will be reducing my dosage starting tonight and we will probably be doing a repeat MUGGA in about three months to see if anything has changed. Hopefully it will do the trick.

 

[Yaps]

wow that bird

wow that bird

made it to the the gulf...yep , you will be ok, that is a relief. love yaps

 

[Mary]

And here he is!

And here he is!

Our little friend stopped by and left a message that said everything would be fine!

 

[gijanet]

Geez.......don't scare me like that!

Geez.......don't scare me like that!

Just checking back in (vacation and started back to work.......already!!!).......

I was scrolling through the threads and ran across yours. My heart leapt into my throat. I ought to fly you a little birdie of my own for scaring me like that!

I am so relieved that your cardiologist and electrophysiologist are in concurrence about the med being the culprit. I hope and pray that this does the trick. You know that you are such an inspiration to me and that you are Katie's role model, hero, mentor, trendsetter, torch bearer.........heehee! you get the idea. It just won't do for you to go and let your ventricular function to decline............we won't be havin' that now!

Seriously, you will be in our prayers and please let us know how you are doing, even though the school year grind is kicking back up..........sigh!

Much love and many hugs.

 

[ALCapshaw2]

What is a MUGGA scan???

'AL'

 

[Ross]

Multiple Gated Acquisition - MUGA for short - measures how well your heart is functioning as a pump, much like an echo does, but more accurately. The MUGA measures how much blood your heart pumps, or "ejects" with each contraction (EF) and how quickly that blood is ejected. EF is actually figured with a mathematical formula : EF = (end diastolic volume - end systolic volume) divided by (end diastolic volume - background). The nuclear camera (gamma camera) can separate left heart function from right heart function by using a certain view, called left anterior oblique.

Because this test is very accurate for measuring EF, it is preferred by some doctors. However, MUGA equipment is both more scarce and more expensive than echo equipment. It requires an injection of a radioactive material and is also more uncomfortable for the patient. MUGA does not "see" valve disease as well as an echo. If you have lung disease, this is the test of choice to measure EF because echo does not work well for people with lung disease.
Remember that with this test, images that are taken during irregular beats are rejected. That's why patients with multiple odd ventricular beats like PVCs require longer scan times to gather enough "good data." MUGA is not suited for patients with a really irregular heart rhythm. Echo has the same problem but not as badly.

http://www.chfpatients.com/tests/muga.htm

 

[Gnusgal]

I've had three MUGA scans in the past three years. My card seems to like them better for looking at my EF. Apparently she's right. Since the echo didn't show the decline in EF that the MUGA did. The MUGA isn't so bad, really. Well, the scan itself isn't. What they do is put in a heploc IV, remove some blood, tag it with radiation, put it back in through the heploc, then watch it travel through the heart on the machine. Not a big deal, really. But the first time I had it done, the doctor said that the IV had to be in my jugular vein which was a bit of a shock, and nowhere near comfortable. The second time I told my cardiologist I would only do it if they didn't make me have the IV in my neck, which she was shocked to find out about too, and she promised it wouldn't be. Well, it wasn't. But the technitian was having such a hard time finding a vein (more than once I've been asked if I'm on chemo because of my awful veins) and finally ended up sticking me in the one vein he found... in my KNUCKLE!!! That one was worse than the neck.

This time I took my husband along as insurance. I figured with him there nothing bad would happen. Well, they didn't stick me anywhere strange. Just my hand. But they did make me get a pregnancy test, wait an hour, THEN finally start the test. Which meant I was stuck twice. Oh, well. Being stuck twice was still better than either of the other times!

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Now for a bit of an update... I'm not sure what to think. Friday night was the first night I reduced my betablocker, and started taking Topomax for my headaches/migraines. Well, I've been trying to be really good and exercise every day. When I went to exercise yesterday I couldn't do my usual speed on the stationary bike. Usually I go about 95-100 RPM, but I could barely bo 85 RPM because my heart was going crazy. I tried taking my pulse and there were only about 74 actual beats in that minute, but it felt like it was skipping every third beat. I somehow made it through all of my exercise routine, but I was much more exhausted than usual. After cooling down a bit, I went and got into the shower (I had somewhere I need to be, or I would have waited longer). In the shower, my heart started racing. Probably around 140-160 bpm. My heart used to do this when I would get directly into the shower after waking up before increasing my betablocker, but not when I'd been up for awhile. Anyway, I would get it under control by holding my breath and "bearing down" but the minute I'd start moving again, it would start speeding up again. I felt like absolute crap. I considered not going out, but my doctor HAD ordered me to have fun over the weekend so I went. Once I was in the car I did okay. Of course, I was sitting still. But when I arrived at my destination and had to walk to the door, again my heart began to race. Fortunately, I was able to sit again for dinner. While at dinner I took my medicine. I did not have another incident of racing heart beats that night.

However, only about 20 minutes after I took my meds I started feeling VERY tired. So tired I was falling asleep standing up! I ended up having to leave the party (it was a bachelorette party) early because there was no way I was going to stay awake another minute. And it was only 11:00. And I'd even taken a nap to be sure I'd have enough energy for the party! I felt like such a pooper.

I think the tiredness was due to the topomax. But I'm thinking my heart going crazy was due to decreasing my betablocker. I hope it's just a matter of adjusting to the changes and not that I will be like this forevermore. I don't think I could stand that...

Thanks for "listening". (oh, and Janet, I didn't mean to scare anyone, but I was pretty scared myself... Thanks for the kind words.)

 

[gijanet]

Please call your cardiologist.......

Please call your cardiologist.......

or pharmacist even. This doesn't sound much better to me. Hopefully, your body just needs time to adjust, but I hope you make some calls in the meantime. I hate to ask a dumb question, but has anyone checked to make sure your betablocker and the topomax are compatible? This might be a question for the pharmacist. Whatever his response, I would definitely call my cardiologist in the morning and see if this is an expected reaction upon first reducing your beta blocker. Please make those calls and I hope and pray that you are feeling better soon. Please keep us posted. Much love. Janet

 

[ALCapshaw2]

Niki -

I've been on a low dose Beta Blocker (Toprol XL 25 mg) for several years. This summer I started having more arrhythmias (PAC, PVC, and then A-fib). My cardio upped my dose to 50 mg which worked for a while (after eliminating ALL sources of caffeine) but then I started going into A-Fib with any exertion that exceeded walking the dog. He switched me to a low dose of BetaPace (generic form is Sotalol) twice a day which targets A-Fib and it seems to be working quite well although I do seem to get intermittent headaches that mildly resemble those from a Nitroglycerin patch. I can now work in the yard for several hours a day without any arrhythmias.

I am curious about your headaches. Can you describe them (location, intensity, sensations, etc.)? To what do you ascribe them?

Ross and Niki - Thanks for the explanation of MUGA.

'AL'

 

[Gnusgal]

Janet, I plan on seeing how I do today and tomorrow, and then talking to my card tomorrow about it. I know that my neurologist checked the topomax with all of my meds and the only thing it looked like it messed with a little bit was my lanoxin. But don't worry, I plan to talk to both my card and my neuro tomorrow.

Al, I took Sotalol before my valve surgery. After my valve surgery I was told I didn't need any beta blockers. Even though while I was in the hospital my heart kept racing, they said it wasn't dangerous. It wasn't until I was back home and with my own electropysiologist that I was able to get back onto betablockers. Toprol 25 mg. It prevented random arrythmias, but I still had problems if I got into the shower right after waking up. Instead I had to be sure to get up at least a half hour before showering. In November I started seeing a neurologist because I was having more and more frequent migraines. She decided to attempt to prevent them by increasing my toprol instead of adding any new meds. So I went up to 50 mg. It stopped the problems I was having with the shower. It did not stop the migraines. So we tried increasing to 75 mg. I'm still having the migraines. So now I've been put on the topomax. And my cardiologist thinks that the decrease in my RV function might be due to the increase in the toprol. So we decreased it, but I told her that I liked the effect that the 50 mg. had, so we only decreased it to 50mg. I'm wondering if my body just got too used to the 75 mg and that's why I'm having problems with the drop.

I've been having terrible headaches for quite awhile now. They aren't all the same. Some are at the base of my skull, some are like a tight headband from temple to temple, still others are right behind the eyes. I have headaches just about every day. And inner mixed are migraines at least three or four times a month. I think the most I've gone is three days in a row without a headache of some sort. We haven't been able to pin point a reason. It's very frustrating. And I'm not sure that the topomax is the answer either. I've had horrible headaches the last two days. Maybe it just needs time to start working, but it's not working yet...

Guess I can never make things easy. Sure wish I could, though.

 

[Harpoon]

It's possible that the response you got when changing your dosage was just part of an adjustment period and that your body will get acustomed to the new levels soon, but definitely talk to your card about it as as soon as possible and you should probably stick to the old dosage until you have an answer from her. It might also be worth investigating other medications that can do the same function as the one you're cutting back on, wihtout the same side-effect, and see how that works.


Most folks on a LTO of meds seem to require "fine tuning" every once in a while to keep the "balance of their universe" in check.

I do it too, usually around my lisinopril and digoxin and usually though bloodwork after I start complaining of muscle cramps...


Of all the things that COULD go wrong, what seems to be happening in your case is probably fairly minor and just requires a little tinkering in the medicine cabinet to fix. =)

 

[gijanet]

Atta girl!

Atta girl!

Janet, I plan on seeing how I do today and tomorrow, and then talking to my card tomorrow about it. I know that my neurologist checked the topomax with all of my meds and the only thing it looked like it messed with a little bit was my lanoxin. But don't worry, I plan to talk to both my card and my neuro tomorrow.
.

Good for you...........ya know I'll be checking up on you! Yes, Big Brother is watching...........big sister in this case, I guess! Still in my prayers that this gets resolved soon. Much love. J.

 

[Gnusgal]

I thought I probably ought to update you all on the change in my meds situation. I didn't have any more "yucky" days like that first one with the crazy heart beats, thank goodness. However, I have noticed that my endurance/excercise tolerance level is a bit lower than it was prior to dropping the beta blocker. I am seeing some improvements each day, though, so that's good.

I've been back to school for the last three days (no students yet, they come back Monday) and I'm EXHAUSTED. I'm sure that has more to do with getting back into the routine than anything else, though. Oh, and this morning we had to do a fire drill where we actually went out beyond the parking lot and past the football field so we would know where we would take the kids if there really was a fire. Getting there wasn't a problem, it was getting back to the school. It was uphill on the way back. I had to stop about halfway and catch my breath. The problem was, I tried to go at the same pace as everyone else and it was too much. I wonder when I'll learn...

 

[gijanet]

Glad to hear you are feeling better......

Glad to hear you are feeling better......

Still glad to hear that you are feeling better and you can ignore my question now about when do you start back to work! Yep, you're gonna have to learn to stop and smell those roses on the way in from fire drills - or, in our case here in Texas - brown, dead grass and ragweed! I'll pray that you continue to feel better and better and good luck on Monday.........when I really want to add "and God help us all on Monday!" heehee!

Take care and God bless..........