My son has been having seizures for approximately 20-years which in the past have been treated as epilepsy. He recently attempted to quit smoking and immediately his seizures became out of control and increased dramatically in frequency, intensity and length. He had a recent Dr. Office Visit and the doctor had him taken by ambulance to the hospital; they could not get the seizures to stop. They had him connected to a heart monitor and his wife noticed that his heart rate would drop dramatically to 38 - 40 beats per minute and a seizure would take hold immediately. She brought this to the doctors attention and he told her he didn't know what that was all about and left the room basicly ignoring this development. I found an article on the internet about "When are Seizures Not Epilepsy" and it stated that seizures can take place when there is a "Cardiac Arrhythmia" condition present. Previously he had been prescribed Topamax which did work but when he lost his medical insurance he couldn't afford the drug and had to come off of it abruptly with almost catastrophic results. He has been somewhat successful in holding off seizures by taking valium and because of this doctors are looking at him as a drug addict and wanted to put him in drug rehab. He doesn't want to take valium but he doesn't know what to do. Am I on the right track with this as a possible cause and if so how do I get a doctor to take him seriously before he dies from this? His situation is critical and I am afraid he can't hold on much longer. Additionally, in the beginning his doctor tried Dilantin but my son had a very bad reaction and the hospital was told this by my son and his wife but the also ignored this warning and did it anyway with again almost catastrophic results. How can I help him?????????????????????????????
You might want to get an opinion from an Electrophysiologist (heart rhythm specialist) about this. The heart condition that I have is called Long QT Syndrome and is commonly misdiagnosed as Epilepsy.
Usually when seizures happen with cardiac arrhythmias the heart beats very fast and chaotic and the heart isn't pumping enough blood to the brain and hypoxia occurs and the person will have seizure-like activity. Arrhythmias often start when the heart rate gets low, his arrhythmias could have been misread as movement artifact from the seizure. Try to get a copy of his rhythm strip from the ambulance to take to the heart doctor.
One of the differences in epileptic seizures and cardiac-related seizures is how quickly the onset and offset of the seizure is. For instance, in epilepsy seizures can come on slowly sometimes with an aura - in cardiac they come on very quickly with no aura or warning. When the seizure is over in epilepsy the person is very tired, confused and takes a while to become fully alert - in cardiac once the seizure is over the person becomes quite alert and doesn't have the same tired and confused feeling.
It sounds like it can't hurt to get another opinion on whether this is actually epilepsy. I would skip the cardiologist and go straight to an electrophysiologist. The reason I say that is cardiologists aren't the greatest at diagnosing arrhythmias, they tend to deal more with structural heart problems and coronary artery diseases. Trust me on this one I struggled long and hard to find a doctor who could diagnose my family.
I would agree to see a cardiologist. The only thing that doesn't make sense to me is the length of time your son has had seizures; if he had these seizures caused by heart disease, I would have thought that you would have found that out years ago.
I know medical diagnoses is not that easy. Many being mis-diagnosed. And many are the medical professionals without the knowledge how to diagnose. Some even don't know what to do. They used simple and easy form of words..... "live with it"! "You'll be alright". "Many people have it".
I don't agree to Stevie mentioned the above symptoms for epileptic seizures. I had all those symptoms before and after the fall but mine was purely cardiac arrhythmias (wpw).
Could you suggest to the EP or Cardiologist to let your son wear a holter monitor? Or may be an event monitor or implant a loop recorder? Catch the whole or fully event of his heart activity before and after the seizures. This might help to diagnose of either Cardiac Arrhythmia cause the seizure or other causes involve. I think just by telling the heart rate wasn't accurate enough. Before I went to black out, I'm sure having a panic attack at the same time. Also, if he didn't catch any episole, the EP or cardiologist still can read his rhythm and find out any abnormalities or suspecious event which could cause seizures. If they think it is the cardiac arrhythmia, they can induce it in the lab by doing an EP studies.
Sometime, a word from the specialist or diagnosed from a specialist no one able to change. They're only to follow and respect the highest. You might be need to restart and pretent never being diagnosed before.
I hope he'll meet a kind, compassion, good hearted doctor soon.
Cardiac arrhythmias from the above mentioned ion channelopathy Long QT Syndrome cannot be brought on by an EP study. There are also other cardiac arrhythmias that cannot be brought on by an EP study. EP studies come with certain risk and should only be given if it is highly suspected that ventricular arrhymias are happening.
While some people with certain cardiac arrhythmias may have slight dizziness before and after fainting, it is not the same as an epileptic seizure. The main clinical difference between the two is as I mentioned above, the onset and offset is what sets them apart.
WPW is different from the ion channelopathies and their associated ventricular arrhythmias. People often remain conscious when having an arrhythmia with WPW, on the other hand, people with Long QT Syndrome are never conscious while having an arrhythmia because it is a torsades de pointe VT. The atria is involved with WPW and this could be why some people have symptoms before they faint or remain conscious during the arrhythmia.
One other thing, WPW is not commonly associated with seizures, Long QT, HCM, Brugada Syndrome, CPVT are. I was referring to ventricular arrhythmias causing seizures. I just don't want the person inquiring about her son to think that I gave her misinformation. I try to be careful with the information I give out.
Please check the SADS (sudden arrhythmia death syndrome) website for more info on symptoms of SADS.
www.sads.ca in Canada
www.sads.org in the US
Stevie, I don't know where you are getting your information from. HCM is NOT commonly associated with seizures.In the 25+ years I have studied HCM and the Cardiomyopathies, with the many people I know who have this disease including my own daughter who had one of the worse cases ever seen in this country, I've never even heard of a person who has had any seizure activity. Even my own daughter who had several electrical problems with the heart (SSS,W-P-W, RBBB, LBBB, Maheim Fiber, A-Fib and NS V-Tach) never had a seizure problem. She had TIAs, but never had seizures. As a person who has run an EKG department, in all the years I have been running EKGs, under all kinds of situations, including arrests, I have never seen ONE person who was having a seizure; not one. The only reason that an EP Study cannot induce an arrhythmia is because the pathway is not electrically 'active' on the day of the study; it isn't because some types of arrhythmias can't be brought on in the EP Lab This can be extremely frustrating for the person trying to prove that something is wrong. Been there, done that several times with my daughter. Can HCM cause sudden death? Yes, but it is extremely rare, about 2% of the HCM population dies suddenly. Can arrhythmias start due to a slow heart rate, yes. That rate has to be extremely low, say in the low 30's. That's the reason pacemakers are implanted if the heart rate starts dipping down into the 30s range. All of the cells of the heart are capable of firing off electrical impulses, that's the whole reason for premature beats. I don't think anyone on here is trying to say anyone else is giving false information; a lot of the information on here is from a person's own experience; sometimes, it is more than the doctors even know. Everyone's imput on these threads is important for one reason or another, it's either for support or for educating. There are a lot of knowledgable people on these sites, including you, so try not to take offense.
Oh yes....I forgot to say something to the origional poster: Try and understand that it may look bad to you that everyone walked out of the room when your son's heart rate was dropping and he had the seizure. He was obviously being monitored. Those monitors are also located at the nurse's station in the ER so that nothing happens to the patients while they are being monitored. If your son's heart rate dropped to the degree you have been told, the monitor would have been sounding an alarm and a strip of EKG would have automatically been printed out for the doctor to look at. A heart rate of 40 is low, however it is not life threatening and MANY people are walking around with a heart rate of 40. If a rate of 40 causes people to go into seizures, then there should be a lot of people who are having seizures on the street.
Have you ever heard of Jiri Fischer who played for the Detroit Red Wings? Well he has HCM and had a seizure on national TV for the whole of North America to see. He was later diagnosed with HCM. There have been other hockey players who have died of HCM and had seizures as well just not as well known.
I get most of my information from my doctor and from reading medical journals online. I don't routinely insult people on message forums who are just trying to help others get some facts to take to their doctors.
I don't give people info that I am not 100% percent confident is true. I also have never had a seizure with LQTS but many in my famil doesn't mean that it is not true.
I'm just trying to spread the word of SADS. Ask any doctor with any knowledge (not just somebody online) and they will tell you what I told you.
My son had a seizure related to LQTS right in front of a doctor and several nurses. Not one of them caught the arrhythmia that was happening right in front of them. I am not making the **** up just to get attention. I am trying to help others so that their family members don't need to die unnecessarily. I would never downplay the seriousness of SADS conditions - they kill when nobody is expecting - age doesn't matter.
And you are totally wrong about EP studies. They are only good for some things - NOT for Long QT Syndrome. It is believed that up to 30% of people with LQTS DIE with their first symptom. This is my reason for being so passionate about spreading the word.
Maybe next time before you attack someone by saying they are wrong, you check your info first. Now this original poster will have no idea who to believe.
I stand by my original post and hope she checks her son for Long QT Syndrome which happens to be one of the most common reasons of misdiagnosis in Epilepsy.
Stevie, with all due respect, I am not writing about Long Q-T Syndrome; I'm talking about HCM. There are many reason people have seizures, the players who died may have died from dehydration issues which is a real problem with HCM patients. They may have had a history of seizure problems and never told anyone for fear of not being able to drive or play pro sports. People tend to do those things. You are writing to me about Long Q-T; my question to you is: How much do you really know about HCM? And about seizures with HCM? The origional poster on here did not say her son had Long Q-T Syndrome. An EKG will show that if it's the problem; he's been having seizures for over 20 years at this point. Are you saying that her son's seizure activity is caused by (possibly) Long Q-T Syndrome and no one was able to figure that out after 20 years? I'm not trying to be 'funny' here, I am actually asking you if you believe that. You brought up where you get your information from; you would not want to know where I have gotten mine from. I have spent a considerable amount of my time writing on these forums to try and educated patients who have the cardiomyopathies, to help these patients to understand what their disease is all about and how to communicate with the doctors they are so afraid to question because they don't know what to ask. I am doing nothing different than you are. Going back through this thread I didn't see where I insulted you, I actually said that there were a lot of knowledgable people on this site, including you. As you did, I also stand by my origional postings about HCM.
I am confident with what I have said. The original poster said nothing about HCM either. I only gave some info from MY experience with seizures. My son was diagnosed with a seizure disorder originally also. I know a lady who took medication for epilepsy for 20 YEARS before being diagnosed with Long QT Syndrome after suffering a cardiac arrest. I had several cardiologists overlook my severely prolonged QT (600 ms) interval before seeing an Electrophysiologist. This is why I'm arguing over this. Not only does the general population have little info about SADS (HCM also falls into the SADS family), sadly the medical community does too.
ANYONE having a arrhythmia which causes a problem in the output of the heart can have seizure-like activity which can and has been misdiagnosed as epilepsy. It is caused from hypoxia.
Yes I believe that her son or any other person with epilepsy that doesn't respond to treatment could possibly have Long QT Syndrome and have it go unnoticed for several years. I am not making this up. Have you looked on the SADS website or googled "seizures and cardiac arrhythmias"? We wouldn't be having this difference of opinion if you had.
Just to show you "where I get my information from" I will attach some links with some info to back what I've said.
This is straight from Familion which does the genetic testing for HCM.
I hope that people read this and realize that not all that seizes is Epilepsy. I'm only trying to help people by spreading the word of SADS (sudden arrhythmia death syndrome)
I respect your right to disagree with me but I also have the right to disagree with you and I do.
Just please check out the links and the SADS website.
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