Hi everyone - my son, now aged 37 had 2 valves repaired at the age of 5, We were told then he would probably have to have plastic ones at a later date. Over the last 5 years he has been in and out of hospital because of going blue in lips and fingers and cheeks, Each time hospital put him onoxygen and he recovered quickly. He has been told he has epilepsy now. I dont think so. I think because his pulmonary valve is leaking, it is not sending oxygen from the blood to his brain, making his pass out for several minutes. He is now quite lethargic and his color leaves a lot to be desired. He saw another consultant last week who has now come up with the idea it is a Syncopy syndrome he has and not epilepsy. I have had my suspicions about this for some time. I have a pacemaker since 1986 and would not be without it. it is my friend and my guardian.
Any ideas about my son.
Fluzy Suzy



by bchis23 - 2008-10-08 09:10:08

Is he seeing a cardiologist? I was having several spells of syncopy the past six months and ended having a total heart block, low blood pressure, and now have a pacemaker. I still have dizzy spells... still trying to find out what's going on with that.
best of luck, go see a cardio

Weckenback Block Perhaps

by 60bpm - 2008-10-08 11:10:25

Hi Suzy,
Your son's symptoms sound alot like those my brother bad. He was treated for epilepsy for years only to discover he actually had a weckenback block (2nd degree heart block I believe). Just thought I'd pass that along.


by SMITTY - 2008-10-09 01:10:43

Hello Fluzy Suzy,

I'm glad your son is getting another opinion.

My experience has been that you can usually tell if a person is having an epileptic seizure or if they are simply fainting, passing out, blacking out, or whatever you call it.

With an epileptic seizure the person usually collapses suddenly and then goes through a period of uncontrollable muscle spasms after which they regain consciences and have no knowledge of what has happened. It is a terrifying thing to watch as there is nothing that can be done to help the person except move any objects on which they may injure themselves while they are flailing around. The episode is usually over in 1 to 2 minutes, although it will seem like an eternity if you are present when one occurs. In the vast majority of cases epilepsy can be treated with medicines. I understand there is a also surgical procedure that is effective treatment for some epilepsy patients.

With an episode of syncope the person usually collapses to the floor and remains in a comatose like state for a few seconds to a minute or so. In some cases the person does not completely pass out but just becomes too weak to stand. However, with syncope there will be no muscle spasms. Syncope can usually be treated with medicines and/or a pacemaker

If you can and will, tell us which of these descriptions best fits what your son experiences?

One other thing, you mention yours son's color leaving a lot to be desired. You also mention how quickly he improved when given oxygen therapy in the hospital. You might consider asking the doctor about an oxygen bottle or an oxygen concentrator for home use. I have both and believe they have kept my wife from making a fast trip to an ER with me a number of times.

As an afterthought, one of my favorite times to use my O2 concentrator is when I commenting to a posting on the PM Club as I'm doing right now. Sitting still with that cannula on is about the most boring thing I ever do even though it always makes me feel better and improves my color, according to my wife.

I wish your son the best.


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