Need Advice - Heart Disorders Message Board

Rebecc · 09-12-2004, 12:56 PM

Hi all. I was diagnosed with SVT at age 25 (I am now 27) and since that time my doc has tried everything possible to control this problem. I had an EP study last fall where he was unable to generate the arrythmia to find the specific area causing the misfire. I feel like I have been a guinea pig trying multiple different calcium channel blockers and beta blockers in an attempt to control the problem. I was unable to handle the side effects for the majority of them. I am currently taking 180 mg of verapamil once per day and I am still having bouts of SVT. I do not feel like it's working. I hate becoming short of breath after walking short distance/flights of stairs, etc. and I hate that my heart jumps into this rhythm for no apparent reason. I feel like I'm a 27 year old trapped in an 80 year old body because I used to be so active before this diagnosis. My question is: is it possible to have an EP study where the arrythmia is not induced but have a 2nd study where they "get lucky" and are able to induce the arrythmia to find the problem? I do not feel like my electrophysioloist has been agressive enough in finding a cure or at least slowing down the episodes. I have had the 24 holter, EKG's, an Electrocardigram, and wore an event monitor for 6 weeks. They were able to record the bouts of SVT (heart rate jumps up to 120-200 at rest) but they cannot pinpoint the precise area or find the right meds to control it. Should I start seeking another opinion. I do not want to continue fighting this for another 2 years. I would like to have my life back as I knew it. Any thoughts or opinions would be greatly appreciated.

Machaon · 09-12-2004, 05:23 PM

Quote:

Originally Posted by Rebecc

Hi all. I was diagnosed with SVT at age 25 (I am now 27) and since that time my doc has tried everything possible to control this problem.

I've had tachycardia for about 40 years. At present, mine is being controlled by Digoxin. When you were first diagnosed with SVT, how often did you get bouts of SVT and how long did they last? Did you get more than one per day?

Quote:

I had an EP study last fall where he was unable to generate the arrythmia to find the specific area causing the misfire.

That tells me that you don't have SVT continuously. It also means, to me, that something probably is triggering your bouts of SVT. To me, the main trigger for tachycardia is chemicals (hormones) released by the Endocrine system as a reaction to some irritant or allergen. Another trigger could be if a gland in the body is malfunctioning.

Quote:

I am currently taking 180 mg of verapamil once per day and I am still having bouts of SVT. I do not feel like it's working. I hate becoming short of breath after walking short distance/flights of stairs, etc. and I hate that my heart jumps into this rhythm for no apparent reason.

I was on Verapamil, three times per day, for many years. When I was on it, I could not eat or drink anything with calcium, within 2.5 hours of my Verapamil. I also could not take a vitamin-mineral pill. You are on the slow release form of Verapamil, so the 2.5 hour separation factor wouldn't help.

I also couldn't take any other med within 2.5 hours of my verapamil.

You might not react the same way, to calcium, that I did. But since Verapamil blocks calcium from getting to the heart, consuming too much calcium might work against the medicine.

I've had major heart disease, tachycardia, hypertension, asthma and other rhythm problems for many years. I've been able to significantly improve my health, and my heart problems by avoiding many allergens and irritants.

Both caffeine and cigarettes can trigger my tachycardia, even if the cigarette smoke is in the clothes of the smoker, hours after they have smoked.

I found that many things that touch my skin, that I breathe, or that I consume, can make my heart condition worse, and that staying away from these irritants or allergens, has greatly improved my condition and my quality of life.

One of the most significant changes was when I stopped using fabric softeners and detergents for my clothes, my bedding and my towels.

The next big improvement was when I started wearing a dust mask to bed.

Regards, and best of luck and health to you.

Rebecc · 09-13-2004, 04:14 PM

Thank you for the reply beerzoids. When I was first diagnosed with SVT I was having 3-5 episodes per day. Now I am currently having 1-2 episodes daily that can last anywhere from a few minutes to sometimes over 20 minutes. It seems as though I can now control them a little better after being on the verapamil, but like everyone else, I would like for the episodes to go away all together.

Quote: "That tells me that you don't have SVT continuously. It also means, to me, that something probably is triggering your bouts of SVT. To me, the main trigger for tachycardia is chemicals (hormones) released by the Endocrine system as a reaction to some irritant or allergen. Another trigger could be if a gland in the body is malfunctioning.

Before being diagnosed with SVT, I recieved tests to find out if my adrenal glands were causing the problem, but everything came back normal. Perhaps I sould speak with my doctor about specific allergens. I have never been allergic to anything and my doc. has never mentioned any other cause for the bouts of SVT other than an electrical pathway in the heart that is misfiring.

I noticed that you said that you took Verapamil for many years. Did you ever have chest pain associated with Verapamil? Is digoxin the only medication that you are currently taking? It sounds as though you have found the specific problems causing your bouts of tachycardia and have been able to get them under control without having to take a thousand different medications. Doctors are so quick to prescribe meds without understanding all of the side effects that are associated. Best regards and good health to you as well!

Machaon · 09-13-2004, 05:55 PM

Quote:

Originally Posted by Rebecc

Before being diagnosed with SVT, I recieved tests to find out if my adrenal glands were causing the problem, but everything came back normal. Perhaps I sould speak with my doctor about specific allergens. I have never been allergic to anything and my doc. has never mentioned any other cause for the bouts of SVT other than an electrical pathway in the heart that is misfiring.

So, then, why does it misfire sometimes, and not others? What is it, in your body that causes the SVT to start? There has to be a trigger, right?

Regarding being allergic........... the body can react to allergens or irritants without having the typical allergic reactions. For instance, the health problems with second hand smoke, or asbestos, etc. Have you ever reacted to dust?

I'll post a "little" about what happened to me and what I learned. Feel free to skip over it.

After having occasional bouts of tachacardia for decades, I had continuous, untreated tachycardia for seven months, which damaged my heart. I was then placed on a variety of meds and was told that I might need a new heart in a few years.

So then, for the next few years, I accepted the fact that my heart was never going to beat correctly again. I lived with the frequent thumps and the skips and the pauses and the fast strong beating, and the fast weak beating. At least my heart didn't beat fast all of the time. I changed my diet, and did mild exercise, and didn't get any worse.

But......... about six years ago my Blood Pressure started to get out of control. I had surges up around 185/122, where it would stay up there all day long, and I would be sick as a dog. So, even though my tachycardia was more or less controlled by meds, I had high blood pressure to go along with my damaged heart and my heart's misfiring.

To make a long story shorter, I started keeping a daily log of blood pressure, and have logged about 14,000 readings, with corresponding notes, over the past six years. I wasn't concerned about my heart not beating correctly, because I thought that it was due to the damage to my heart. I was only concerned with my high blood pressure.

I found out that, if I avoided certain allergens and irritants, whether or not I consumed them, or breathed them in, or that touched my skin, my blood pressure improved.

What I didn't expect is for my heart rhythm problems to also improve. That was a surprise. I still have to take Digoxin, or my tachycardia will come back all the time, and have to take blood pressure meds, but both my blood pressure and other heart rhythm problems have much improved, and with less medication, and I feel better. Less meds means less side effects.

Quote:

I noticed that you said that you took Verapamil for many years. Did you ever have chest pain associated with Verapamil?

I had chest pain and harsh thumping with Verapamil if I consumed something with calcium, if I consumed it 2.5 hours before or after taking my Verapamil. I also had chest pain, and a harsh thumping if I took a cholesterol med, so I stopped taking it. I also had chest pains and harsh thumping if I took a vitamin/mineral pill or a calcium pill, so I stopped taking them.

I would also get chest pain, and heart rhythm problems between 45 minutes to 90 minutes after I took my Verapamil pill, lasting about 20 minutes. I took Verapamil three times per day.

Quote:

Is digoxin the only medication that you are currently taking? It sounds as though you have found the specific problems causing your bouts of tachycardia and have been able to get them under control without having to take a thousand different medications.

It is the only heart rhythm med that I am on. Digoxin also effects the heart's use of calcium, so I still have to watch my calcium consumption. I am also on an ace inhibitor and a diuretic for my blood pressure.

Quote:

Doctors are so quick to prescribe meds without understanding all of the side effects that are associated. Best regards and good health to you as well!

Doctors have an almost impossible job. A medicine will effect everyone differently. How a medicine works is not only based on a person's own unique metabolism, but also a person's diet, their environment, their circadian rhythm, and how a person's endocrine system reacts to allergens and irritants, in my opinion. Also to be considered is that women have differences in their hormone systems as compared to men, which can also have an effect on their heart rhythm.

So doctors have to prescribe according to statistics rather than according to individual patient's unique requirements. But it works. People, with heart disease, are living longer because of the new meds.

I am not a doctor. I post what I have learned about my own heart disease. I realize fully that, what effects me a certain way, certainly will not effect someone else the same way.

But with millions of people having devices placed into their chests because meds won't keep their hearts beating correctly, I have to assume that there are many others who are also effected by irritants and allergens in their environment, similar but perhaps not the same as me.

Sorry about the long response.

Best of luck and health to you!

.