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Hey everyone! Just registered and saying hi
Hey everyone! My name is Damon. I'm 21 and had SCD in February of this year. I now have an ICD. I've been shocked on 3 occasions now, twice I only received 1 shock, but last Saturday I was shocked 5 or 6 times in a row. They also did a NIPS test on me last Tuesday where I was shocked 3 times while under anesthetic. Each time I was shocked it was because I got my heart rate too high while being active, and my ICD thought I needed to be shocked. I feel like getting shocked unnecessarily is messing up my heart. I had a few short vtach episodes while I was in the hospital following the shocks on Saturday...never had this before. Now they have me taking 10mg of bisoprolol, 325mg of asprin, magnesium and potassium.
How long did it take you all to get adjusted to your beta blockers? I originally stopped taking mine about a month after my implant, but then started taking them again after getting shocked. They changed me to 2.5mg of bisoprolol once a day after the second shock and that made me sick. The 10mg a day makes me feel so slow.
I used to be very active and now I am afraid to push myself at workouts. I ran Tough Mudder last December and set a goal to run it again this year, but now I am terrified to try. I'm afraid to run or train at all. I was shocked doing the insanity workout while training already. I have had a dream I was running then got shocked.
Reading people stories on here makes me feel better because I know other people are going through the same things. The stories of people that were shocked a ridiculous amount of times at once...you must be strong people. I find myself checking my pulse all the time and feel every pvc already. I can't imagine getting shocked like 30-75 times in a row.
Also: this forum is organized very weird to me. I frequent many internet forums but still have trouble navigating here.
7 Comments
Welcome
by ElectricFrank - 2012-10-17 02:10:31
Welcome to the forum. My suggestion is to ask them what they think is happening. Is there some reason that they can't change the threshold at which a shock is delivered.
There are two possibilities:
1. They simply have things set too sensitive. Some cardiologists just haven't had much experience with a person your age that has been active. The device has to be adjusted to differentiate vtach from the natural high rate of activity. They are more experienced with an 82 yr old duffer like me, and even then it took me a while for them to recognize that I am active.
2. You actually have something serious going on in your heart and they don't want to increase the threshold for vtack. Add to it that they don't want to scare you with the news. This is where your style of dealing with things is important. If you are the kind that wants to know what they are thinking, make it known to them in very clear terms.
I'm not trying to scare you. I'm just saying that it can be productive to check it out. At your age you have a long time to be living with this situation so it's important to get it squared away now.
best wishes,
frank
Hi
by Moner - 2012-10-17 04:10:29
Hi D6kj,
I am so sorry to hear your struggles, I can see by your profile how athletic you are, participating in the "Tough Mudder" events is no walk in the park.
I'm also pleased to see that Electric Frank and TraceyE have responded to you. They are some of the resident experts here.
Hang in there, I hope you get this resolved quickly.
Moner
>^..^<
what Frank said
by Tracey_E - 2012-10-17 08:10:54
Frank said exactly what I was thinking. A-tach is ok, even normal during exertion. A high rate that's dangerous in an 80 yr old is perfectly normal in a 20 yr old so your settings need to be adjusted accordingly. So many drs don't have active patients, they don't always know what to do with us. First thing to do is figure out what's going on, if there is a good reason they have the threshold where it is.
It took me 4-6 weeks on beta blockers to feel human again, to stop napping every day and for my mind to come out of the fog. I had to make a change after a month, the first one I was on was unbearable. The second was still pretty bad at first but got better after a few weeks. It took closer to a year to feel totally normal. I still feel a little sluggish and would love to be off them, but without them I can't exercise so it's the lesser of two evils.
thanks
by 06kj - 2012-10-17 10:10:52
My ICD has been adjusted multiple times. At first 180bpm for 5 minutes, then 185 for 5 minutes, then 185 for 15 minutes, now I think they set it to 210 for 15 minutes. Each time they have told me I could exercise like normal only to get shocked. After the last adjustment I have lost my confidence in their tuning and now I'm still afraid to exercise.
From what they have told me, they do not know why this is happening. I just had another set of blood tests done yesterday to try to make some determinations.
Right now I am wayy behind on school work because of all this and the beta blockers make it feel impossible to catch up. I'm currently a senior in college with a massive amount of work. 4-6 weeks from now the semester will be over...
treadmill
by Tracey_E - 2012-10-17 12:10:21
Have they put you on a treadmill and watched what your heart does under exertion? That might be easier than testing out this and that only for you to end up shocked.
Have you tried working out with a heartrate monitor? I havent been able to get one to work since I've been paced, but other members have had better luck and it sounds like you're not paced anyway so it might work for you. With a hrm, you could keep an eye on it and know to ease up when you get close to the limit.
I don't guess they'll let you come off the meds and try again over the semester break? What lousy timing. Best of luck to you getting it all done. Stay in touch with your professors. Some will always be jerks but most know the difference between lame excuses and real problems and will work with you.
Overshoot
by ElectricFrank - 2012-10-18 01:10:04
I've noticed that I have an overshoot when I back off or stop heavy exercise. If I work up to 130 and then stop my HR will continue to climb at least another 5 BPM before starting down. So if you use the HR monitor to stay under 185 for instance you should try to level off at 175-180.
I can see where the problem happens though. The 185 for 5 minutes is fine in detecting vtach in a non athletic person. That simply says we don't want you in vtach for more than 5 minutes. In your case all it is doing is limiting your workout to 5 minutes. When they turn it up to 185 for 15 minutes all it does is let you work out for 15 minutes before being jolted .If they turn it up to 210 for 15 minutes it will just let you up your workout level and then fire in 15 minutes.
Here's the issue. For you when is 185 a clinical vtach that would actually create a risky situation? If there is such a situation then you need to have the ICD set to fire on it, and then you need to accept that you can't work out at that level any more. Or are you willing to be be one of those young athletes that drops dead during heavy activity.
But the other more likely issue is that you are healthy and don't have a risky vtach issue. You may not even need an ICD.
You may need to find sports cardiologist (if there is such a thing) who understands your problem. Or make a life project out of understanding the hearts electrical system so you can frustrate the hell out of the docs like I do. At 82 a HR of 140 is on the edge of disaster according to them, but I've pushed up there just fine a few times. Like I've told the cardio, I'd rather die of cardiac arrest while being chased by a bear in the campground than be eaten. LOL
And you are just getting started in life!
frank
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monitor
by 06kj - 2012-10-17 02:10:03
I did a "stress test" that was immediately ended when I reached 185bpm. I had been walking on the treadmill for about 12 minutes and had not even started sweating yet. They said the results were good. I have no idea what the point of it was.
I wear a polar monitor with chest strap. I was shocked while wearing it because it was reading slightly low. Usually slightly low is no big deal but the difference in 5bpm for a sustained period is the difference between shock and no shock. Now I just add 5 to whatever it says, better safe than sorry.
I wish I could stop taking the meds! I have been horrible about taking them until recently when I was shocked multiple times. Now I take them religiously even though the side effects suck. I also had to drop my scuba diving class half way through, 1 day before our first dive. Originally they said I could dive, but now they say no.