Ventricular tachycardia

I have an ICD for 10 years now. When I was 17 I was diagnosed with ARVD. Over the years it has stayed the same and my right ventricle hasn't changed. Although I still have VT. My last ablation was back in 2003 in Philadelphia. Things were great after that. I had no runs or shocks. Back in August 2007 I decided to give myself a test and I stopped taking my meds for 5 days. I went to the park for a birthday party for my nephew and we played volleyball and during this I went ito VT and got shocked. The doctor was pretty upset that I decided to do my own experiment. At that point I knew I still had the problem. Mow this leads me into my question because recently I have been hospitalized twice because of runs of VT. My last stay he put me on new meds and they seem to be working fine so far. My doctor suggested that the problem may be coming from the outside of the heart and that a prcedure can be done to find out. My question is has anyone had this done or know of it? Should I try to stick it out with the new meds? Ever since I have been on them I have devoloped a dry cough and am always tired. I kind of go through things at a slow pace because before I used to to get VT just in exercise or excitement and now it's happening when i'm just sitting. Please tell me what you think

By fireryan
Posted March 28, 2008 at 10:37 am
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I think I've read something about that in one of my many searches on Google about VT. I have a type of cardiomyopothy which deals with my septum and it seems to be coming from the right ventricle. I just had an ablation a few days ago and I don't feel any different. I get these nasty extra beats (Basically the feeling you get right before the VT starts) and feel a "nervous wash" come over me (anxiety) just from EATING. This leaves me to believe that the ablation was "fake." The doctor couldn't find the "spot" due to the rate my heart goes into. Now I need to wait, try new meds, and get another ablation set up. I believe you may need to find a new med combination until you give the docs a try at that procedure. If you are not confident in his methods I recommend you to go outside the state to Cleveland Clinic in Ohio. I am getting to that point myself.
I can't believe you choose to stop your med. Guess you forgot what it was like to get shocked. I was shocked 28 times in 14 min a few weeks back from my doctor experimenting by taking me off my meds. My heart rate reached over 300bpm the whole time and I had two seizures. Wish I wasn't conscious. I really look forward to taking my meds now.
I am on Propranolol 80mg twice a day, and flecainide 150mg twice a day. The combination is better for me than a beta blocker alone.
I wish you well on your treatment. If I run into any info I'll post it back.

Ryan
30 y/o

By msplace
Posted March 15, 2009 at 11:23 pm
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Hi Ryayn, I know what its like to have the old ticker stoped, with meds 4 times. I have yet to have it stoped with the paddels yet , thank you God! 28 times in that short of time man!!!!!! I wonder why they didnt us adenesen? maybe it was all going to fast for the meds?I have been through ablation once and now my right legs valve is shut down for good from it! I too was just sitting the other say and wham tickkkkkkkk, there it was! I think eating makes it worse sometimes too. The Dr. would like to do the ablation again but Im not sure if I want it done gain yet. I figuer one day but I hopefuly not today! I am 56 yrs old and have to walk with a cain now. Then back on Aug/08 I fell in wal-mart and pulled all the tendons and legaments out and now my good leg is just as bad as the right. So if I have the ablation done and they mess it up worse, then what?Mean while they keep upping my meds.! I have gone from 25 to 50 to now 75 twice aday of mtoprol. I am still passing out and I still have the SVT and some AF at times too! I just pray alot and keep praying for the help God gives me and I take the meds like it means my life and it dose. Now for sure!
Do you think the ablation helped at all. I can walk faster and I havent had to have my heart stoped
sense I had it done yet!!!!!!!!!! It was on 4/22.05 I had it done. Dose your heart speed up when you get upset or think everyone is looking at you ???? Mine dose and then it drops to the the bottum and it hurts so bad in my wast I can hardly stand it! If a car runs out in front of you or if I get real stressed my BP goes up real fast too! Do you do these kinds of things??? I have never talked to any one about theirs! I have just read about them on here and Medhelp.com. Please
tell more about how yours dose and some helpful hint if you have any! I am on SSI now because of it and my leg. Thanks for the info and I will let you know about mine too and any others if they would like!

thanks again,

By frogcollector
Posted March 16, 2009 at 10:06 am
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oabraham123,

I 'had' AVNRT since I was a kid. Took until age 43 for 'true' diagnosis 44 I had an ablationto 'zap' two re-entrants. Before that they said SVT...arythmia...

I do not have an ICD, but have had the adenosene at the ER's, not nice feeling at all.

My ablation worked for years. Now I have ST, which is Sinus Tachy (I call it the 'we do not know' Dx). I just started the night of Nov 8, 2008 at 11PM, woke me and lasted for five hours. Not being on RX's anymore I tried to convert it with no luck, even did the bucket with ice water to the delight of my 11 yr old...since it was 'only' 130 I rode it out on the coach with my family trying to figure out what to do, and me thinking what is this???

Since that night the ER, a new cardio - 3visits, 30 day monitor.....

Outside your heart...this interests me since they are saying I am not textbook and have been checking other possible causes of the ST. The Cardio had me do a Pulse Oximetry Test overnight at home...they just drop it off show you what to do and they pick it back up...easy.

(I go to the New York Heart Clinic north of you in Oswego. They are all over this area.)

Well low and behold my Oxygen saturation was 84% at night and it showed I had sleep apnea...now I have since gone to Auburn for a sleep study and will see my cardio on Wed (two days from today).

Having dealt with AVNRT, where I had a 130 rate and a 180+ rate (after 220 noone could count it) I got a kick out of your self test. Since I never had anyone figure out my racing heart problem until I was 34 and passed out driving...I used to feel like I was playing basketball for days sometime. Being high energy I just kept up with the go go feeling, not realizing passing out, falling and other clear symptoms were directly related.

The first time I was asked what it felt like I explained it was like a ripple thru my sternum or bubbles in water and I would feel this just before my rate went up.

So the Rx's were started when I could no longer convert it myself. They kept adding more of them. When they stopped working at 42 and the fatigue had become a lifestyle, my only option was more RX's or an Ablation.

So after seeing myself as an ablation succes story, I am back on these lousy betablockers again (they tire me out during the day.)

Thanks for listening...would like to hear the name of that procedure!

Oxygen Annie
That I forgot to explain...since 2/5/09 I have been on Oxygen at night, and it has a water attachment, took care of my drymouth at night anyway!

By sunnydeeelite
Posted March 30, 2009 at 11:29 am
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Hi guys, I've noticed mention of having problems after eating. I won't go into my long history of my heart rhythm irregularities, but I'm 39 and have just been diagnosed with SVT. Of course, the cardiologist did one EKG and based on my trip to the ER the night before with my heart rate at 180 (I refused the medication they use to stop your heart in the ambulance and it came down on it's own once I burped- I'll get to that). It only happens during the day when I have reflux or have just woken from a nap- I no longer take naps!), and at night while sleeping (the tach wakes me up, I feel hot, anxious and usually have just awoken from a bad dream). I noticed that after a meal, if I've eaten TOO much, my heart rate increases until I've burped (A LOT!) or the food starts to digest. They've called this anxiety, depression, panic attacks, MVP, now SVT (because it was over 180). I've been on Paxil, Ativan, Beta Blockers and NOTHING helps. I think the Paxil made my blood pressure lower and naturally when your BP is low your HR goes up, the Ativan made my anxiety worse (rebound symptoms), Beta Blockers made me depressed and suicidal, and the doc said it wasn't the med making me feel that way, to see a shrink. He did say my BP was TOO low and that I could come off the BB. I found out certain drugs interact with the BBs and can cause harmful side effects, Paxil was one of them, and I was suppose to be monitored closely and wasn't. When I went off the BB, BAM the suicidal thoughts were gone and I could move again! The fatigue was AWFUL! I had started tapering and went off the Ativan. Ativan does NOT affect heart rate AT ALL. It never helped mine. It simply helped anxiety and became a crutch. I am now tapering Paxil and feel so much better. I have some suggestions for you, I hope it helps.

One day I came home from work to eat lunch. I did a BAD thing, I crammed a peanut butter sandwich and TWO Twinkies down! 2 hours later I was in the ER with racing heart and dizziness. I noticed that if I ate late at night and went to sleep, I could count on waking up with a racing heart (always near 200). When I started eating SMALL meals and found out I have GERD, I have noticed fewer episodes.
Someone told me that these are symptoms of "dumping" and that many gastric bypass patients have it (I haven't had that surgery though). IF you get racing heart when eating, eat small doses and get your gut checked out. One medication did help me, Aciphex, and I think I might try that and that alone again. Also, when I exercise, I do NOT get racing heart the following night. I've started taking multi-vitamins and so far so good. It sounds like some of you have conditions that warrant medication, 300 beats a minute and seizures is very scary! My doc told me this condition won't "kill" me, that I have a better chance of being hit by a car, but it IS scary.
One thing that has made me feel much better is the cortoid massage. When I wake up and it's racing, I massage the nerve in my neck and it's like turning the volume down on a stereo. It goes right down. Straining and cold water never helped me, but this makes it stop right away. I think sometimes feeling like we have no control might make it worse. I really do empathize with you all. I wish there was a magic pill but there isn't one, yet!

By frogcollector
Posted April 4, 2009 at 8:48 pm
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Yes, how do you do the carotid massage? I have been asked if I had tried that already, when arriving at the ER or answering EMT questions.

I know the bear down (I count 15 to 30), cold splash of water to the face, face in ice water, and head in ice water (is there one more?)

Is this some medical 'secret' the 'carotid message'...very curious about the answer!

Thanks
Oxygen Annie

By sunnydeeelite
Posted May 14, 2009 at 9:50 am
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This is what I have learned about some tachycardias. Sometimes they are caused by things other than an abnormality in the electrical system of the heart. Sometimes the heart does what it's told by certain chemicals, like adrenaline. Sometimes if the heart needs to beat fast, like with low blood pressure, the cartoid massage might not work. It could be dangerous. I've had two doctors tell me the massage is safe, and then a paramedic told me it could dislodge plaque (if there is any in the artery) and cause a stroke. You simply push your fingers into your neck between the jaw and the collar bone and find your pulse. Massage for just a second and then stop. It HAS worked for me, but i would talk to your doctor before you do this, and research it online. It can cause a dangerous lowering of the heart rate as well. I have stopped doing it since I was told about the plaque, and started drinking ice water VERY FAST. This helps too, just as fast. everyone is going to be different, so be careful. Oxygen Annie, is your sleep apnea causing your episodes at night? I have wondered if I have that, especially waking up feeling out of it and wide awake with my heart racing.

By Albert15371
Posted May 20, 2009 at 10:54 am
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I have received the diagnosis of SPVC, which means not one doctor knows whats wrong with me. I went to a cardiologist last year and he said "many people have skipped beats" gave me a stress test and labs and sent me on my way. Fast forward, a year later, I have had several trips to the ER and can't function due to the skipped beats, feeling like I am one step away from death and now fear. My internist placed me on Cardizem and my blood pressure ( which runs low) had a sudden drop and I passed out. Today after taking my second dose, I still feel the flutter, but it is not as bad. I truly feel this is due to hormonal changes and inflammation which most woman have more inflammation than men because of the fat tissue. I feel angry, that no one doctor seems to have a definitive answer, when so many have this problem. My family won't truly believe anything is wrong until there is slow singing and flower bringing. Too late for me! This is my first support, being able to tell someone, anyone.

By sunnydeeelite
Posted May 20, 2009 at 11:10 am
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I am not a doctor but I do know these PVCs are normal. I used to have them, sometimes 3 or 4 in a row. I still do, and it is absolutely related to my hormonal changes during the month. Not ever heart will beat the same. Sometimes we have extra beats, sometimes it will beat very fast, as in my case. My daughter, at 18, just wore a heart monitor because she was having them sometimes 20 a minute. It did not affect her at all. She still went to school, on a field trip out of town, and remained active! She said to me, "I am not going to allow this to debilitate me with fear like it has you." and she didn't! And you know what? She didn't die. She didn't faint. She just ignored it. I was freaking out more than she was (I told her to tell me how often she had them).
I remember when I ONLY had the skipped beats. Oh how I miss those days. If I could only go back with what I know now. NOW my heart races up into the 200s. Just a few nights ago I awoke to it racing and couldn't even count the beats it was going so fast. I am sure it was over 200. The doc put me on beta blockers and I felt dizzy with low blood pressure and he told me to stop taking it. Then he said I would have to see an electrocardiologist if it didn't stop. I figure, if this were going to kill me, it would have already. Your anxiety with this might make it worse. And there are many reasons for skipped beats. But I know this for sure. They wont kill you. I would bet my house on that. And, I need my house.... :-)

By Albert15371
Posted May 20, 2009 at 9:12 pm
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This can't be normal or we would not be having a group discussion about it. If due to no known reason my heart rate behaves like a BMW going from 60 to 180 in 30 seconds, there at least should be a name asscociated for the "disease" that causes it. There is just not enough study and awareness because the majority of cases are related to hormonal changes
( even if the cardiologist doesn't understand it) and no celebrity has died of it yet. We must get the word out before the next generation of sufferes hit the same brick wall of medical ingnorance as we are.

By nomorelongqt
Posted May 21, 2009 at 4:16 pm
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I'm just trying to learn here.

Why do the doctors choose to give you one of the "old" less selectively cardiogenic Beta Blockers?

Inderal in my understanding is also more likely to cause lung issues. Do you know what their reasoning is for picking that particular Beta Blocker?

Like I said, I'm not suggesting they are doing it wrong, just trying to learn.

By fireryan
Posted May 21, 2009 at 5:55 pm
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Beta Blockers are chosen due to specific desired effects. There are different "tiers" they use to classify them i.e. Tier 1, Tier 2, and Tier 3. Some effect the BP more than the rate and vice versa. Doctors chose based upon their experience with the drug and patients with similar symptoms and conditions.

I have been off this thing a while and have missed out on some great comments. As an update I'm on Mexiletine (anti-arrhythmic) and Inderal (beta blocker)
I had a cough from a cold for months, got an inhaler and it knocked it out. I feel "normal" 95% of the time Praise God.

God Bless you all and give you the strength that you need to make it through your difficult times.

Ryan

By Albert15371
Posted May 21, 2009 at 8:29 pm
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It is more important that we try to learn, than to blindly follow the doctors who may know less than we do. That is why this sharing of information is vital. Did you know there are still many doctors who don't believe we are really having these symptoms because the tests do reveal them.

By nomorelongqt
Posted May 21, 2009 at 11:13 pm
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PVCs if frequent and numerous enough can advance into ventricular fibrillation. That doesn't mean that everyone who has frequent PVCs is going to do that.

My daughter was a textbook picture of Long QT Syndrome, and is now dead because it wasn't diagnosed properly by two different cardiologists in about 8th & 9th grades.

She was even found to be "blue" and be having "seizure-like" episodes on her 2nd day of life. Yes, you heard it. And they did a "complete neurological work-up" but not a cardiac work-up at all. That was way back in 1975 when they didn't know much about Long QT Syndrome.

But then in grade school she fainted on several occasions, with emotion, pain, fear, and once in high school fell out of her desk for "no reason" in a faint.

Once it happened right in front of the dermatolgist, when the fear of getting something frozen off with liquid nitrogen was gone--she fainted right in the inner office, and the dermatologist, when I ask him, "doctor, isn't she having a seizure"? said it was simply a "vaso-vagal attack", and was not anything to worry about.

Then when she got into more strenuous exercise with the basketball team, she said, "Mom, my heart feels like it's going crazy."

At that point two different "adult" cardiologists told us that nothing was wrong. They did a 12 lead ECG, ECHO, Holter monitor, and finally a "stress test" (no dye). Everything was read as "normal" and the cardiologist said that her chest wall was just thin, and that she was probably just feeling irregular heartbeats that we all have, and just don't feel. She was pretty thin at the time, as she had gone through a growth spurt and was very tall (she ended up to be 6'2") by the time of her death.

Anyway, when she was 22 years old, she went to bed at about 6:45P.M. after a very emotional situation with a "not so good for her" boyfriend, (I might add that she died in her own bed, in our home, alone) and was dead too long in the morning to resuscitate--your worst nightmare as a parent. She apparently had died in her sleep, no visible signs of any stuggle, etc. Just died.

The same Holter Monitor test read as "normal" during life, was read as "abnormal" after her death, by an expert at the U. of AZ. Unfortunately by then, it was too late.

I had to tell my story in defense of someone saying--"I'll bet my house it's not going to kill you."

I'm not trying to scare anyone, that's just the reality of the situation that happened to our family.

Children and Young adults are still being misdiagnosed with "seizures" & "exercise-induced asthma", when the real cause of their "seizures" can be anoxic seizures from a cardiac condition, as my daughter's apparently was. We have had genetic testing, and my husband & I each have a gene for LQTS, as do my two living children.

Also anywhere from 10--50% of all SIDS deaths are now thought to be LQTS deaths, thus other family members need to have thorough cardiac work-ups by an expert.

The proverbial "fork in the road" where we went wrong. When she saw a cardiologist in 8th grade, it should have been a pediatric cardiologist.

It should be a doctor who knows how to hand measure the QTc (QT interval as corrected for heart rate), has experience taking care of families with familial electrical conduction defect problems in their families, like WPW, Short QT Syndrome, Long QT Syndrome, Brugada's Syndrome, etc.

A doctor should not be merely going by the reading by the software of the ECG machine. Many LQTS and other diagnoses can be missed this way.

It's too late to save my daughter, but I hope I can save the life of many adults and children now that I'm informed about all this electrical conduction issues, etc.

Just trying to help, and not hinder anyone. We're all in this to learn as much as we possibly can about all these cardiac issues.

If we save one life, it is as if we have saved the world!

By nomorelongqt
Posted May 22, 2009 at 1:03 am
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Are you going to a Board Certified Electrophysiologist? That's a subspecialty of cardiology. I found a really good one in the Phoenix area. Maybe someone out there knows a good one in your area. Maybe you could get another opinion from someone recommended by someone in the medical profession in the area where you live.

I can understand your situation would be very scary. Sometimes when my "spells" have gotten really bad I feel like that TV character from (can't think of his real name--Red Foxx--looked it up)-- "Sanford & Son" when he would grab his chest and say, "Elizabeth, I'm coming to see you" (referring to his late wife).

I hope you can get some answers. I think you deserve to be much better than you are, and shouldn't have to live in fear that something is going to happen to you.

Good luck with that! God Bless You!

Welcome to Inspire!

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