Cardiac Arrythmia

[Tia Koul]

So, I have had this question for a long time. And I am just starting to meet people who have similar experiences. Did anyone see Mystery Diagnosis the other night? It was a repeat from Season 1, with a man who would have seizures about once a year. The seizure meds did not help him, finally he was referred to Dr. Orrin Devinsky at NYU Med Ctr. Amazingly, he ordered a tilt test! I was shocked! I have been looking for anyone to make a conneciton between seizures and pots. This guy did not have pots, (??) but he seized on the tilt because his heart stopped beating. They just called his dx 'Cardiac Arrythmia'. He needed a pacemaker. So, has anyone seen this guy in NY? I live in NYC and am thinking about going. But I don't pass out or seize during a tilt. But I do stop breathing when I have a seizure.

Anyhow, just curious what you guys think, and also if you know of him. I was very excited to see something about seizures and tilts together.... and have been looking for a connection for a long time.

It's odd though that his heart stopped while upright. So, I'm not sure if I missed somehting on the show, but they did not say he had pots. Hmmm

Thanks!

Tia

[Noreen]

Tilt testing dx's POTs and NCS (neurocardiogenic syncope). Severe cases of NCS necessitate the implantation of a pacemaker.NCS is a dysautonomia.

from americanheart.org -

"Neurally mediated syncope (NMS) is called also neurocardiogenic, vasovagal, vasodepressor or reflex mediated syncope. It's a benign (and the most frequent) cause of fainting. However, life-threatening conditions may also manifest as syncope. NMS is more common in children and young adults, although it can occur at any age. NMS happens because blood pressure drops, reducing circulation to the brain and causing loss of consciousness. Typical NMS occurs while standing and is often preceded by a sensation of warmth, nausea, lightheadedness and visual "grayout." If the syncope is prolonged, it can trigger a seizure. Placing the person in a reclining position will restore blood flow and consciousness and end the seizure.

If EKG and cardiac tests are normal, the person will undergo a tilt test. The blood pressure and heart rate will be measured while lying down on a board and after the board is tilted up. Someone who has NMS will usually faint during the tilt, due to the rapid drop in blood pressure and heart rate. As soon as the person is placed on his or her back again, blood flow and consciousness are restored.

To help prevent syncope, people with NMS should be on a high-salt diet and drink plenty of fluids to avoid dehydration and maintain blood volume. They should watch for the warning signs of fainting ? dizziness, nausea and sweaty palms ? and sit or lie down if they feel the warning signs. Some people also may need medication."

I wouldn't put money on the "more common in children and young adults", though. I wasn't dx'd until 40+. Prior to dx, I had been doing 'accomodating behaviors' such as squatting while shopping, etc.

[Tia Koul]

So, I guess he had NMS? And on the show they called it cardiac arrythmia? Well, anyhow, in my case, it happens when lying down. So, not sure for me. They didn't elaborate on the diagnosis on the show, but I could have missed it. The fact that they didn't mention autonomic issues had me puzzled, since it was the obvious cause I thought. Still not sure what my case is, but may call that doctor and see. I don't need another tilt. And I don't pass out on the tilt either.

Good info and thanks for passing it along. My behaviors are opposite, squatting is awful for me, I barely even bend over if I don't have to!!

Thanks...

Anyone know about Dr. Devinsky?

[Sarah4444]

Hi Tia - If you don't mind, can you tell me more about the seizures you have lying down? I have very strange episodes at night, when I am asleep and sometimes when awake too, and I have been wondering if they might be partial seizures (maybe brought on by reduced blood flow to my brain caused by abdominal pooling at night after lying still for a few hours?). I haven't mentioned them to the neurologist yet because I thought the theory was too strange and I just started seeing her. Thanks in advance.

[Tia Koul]

Hi Sarah!

At this point, I don't think any theory is too strange!! lol. But my occurences are different. I have a sleep disorder, and definitely wonder about some nighttime episodes, I have awoken many times to bracing myself. But my seizures I believe are a type of reflex seizure prompted by fear or pain. So, during blood draws, biopsies, I will have a seizure. I am usually lying down. But I lose consciousness for up to 2 minutes, stop breathing, lose bladder control, convulse or go rigid, and need many hours to recover. It's pretty awful and no one has yet to tell me why. So, I think they fit in the reflex category. But I'm guessing. If they are cardiac in nature, then I want an explanation of course. The neurologist prescribed me keppra. But he knows not of autonomic issues. And I doubt I need to take an anti-seziure med. I have had issues when I lay down, like extreme chest pain, and again those episodes when i wake up grabbing the bed. But I don't really have any theories Sorry I can't help I would ask yor neurologist, the worst she can say is that she does not know. And positional oddities are worth mentioning I think. ) Good luck!!

[Noreen]

My behaviors are opposite, squatting is awful for me, I barely even bend over if I don't have to!!

Squatting while keeping the back straight acts against blood pooling in the legs. Bending over is avoided at all costs.

[Tia Koul]

Squatting while keeping the back straight acts against blood pooling in the legs. Bending over is avoided at all costs.

I think it's the getting back up part I struggle with. That's when I'm dizzy and seeing stars. So, I avoid squatting too. But usually I am bending over while squatting to clean something, ie that cat litter...

[sugartwin]

There is definitely a kind of seizure that is associated with dysautonomia. I think maybe the man on MD had a problem with his heart that interrupted blood flow to his brain, causing the 'seizure.' Due to damage to nerves or an otherwise dysfunction autonomic nervous system the same interruption of blood flow is possible, only this time due to dysfunctional blood vessels rather than an electrical problem in the heart.

Last year I was hospitalized many times for 'seizures.' Since they weren't epileptic, I had more psych consults than I could count. I kept trying to explain that it was clear that it was a neurogenic problem, and they kept sending me social workers and doctors who asked if my parents had beaten me. And they refused to do anything about the seizures; I'd be having one and there'd be some guy sitting next to me stroking my hair (or trying to) and telling me it was okay, the bad things was over now and couldn't hurt me anymore. I was conscious during these episodes and if I would have had control of my body I would have slapped him.

To get to the point of the issue, I finally had a doctor who ordered a Tilt-EEG. They tilted me and wired me for an EEG at the same time. Around the 40 minute mark I had one of my 'seizures.' That's when it was ruled a version of convulsive syncope and no one doubted me again.

[Tia Koul]

There is definitely a kind of seizure that is associated with dysautonomia. I think maybe the man on MD had a problem with his heart that interrupted blood flow to his brain, causing the 'seizure.' Due to damage to nerves or an otherwise dysfunction autonomic nervous system the same interruption of blood flow is possible, only this time due to dysfunctional blood vessels rather than an electrical problem in the heart.

Last year I was hospitalized many times for 'seizures.' Since they weren't epileptic, I had more psych consults than I could count. I kept trying to explain that it was clear that it was a neurogenic problem, and they kept sending me social workers and doctors who asked if my parents had beaten me. And they refused to do anything about the seizures; I'd be having one and there'd be some guy sitting next to me stroking my hair (or trying to) and telling me it was okay, the bad things was over now and couldn't hurt me anymore. I was conscious during these episodes and if I would have had control of my body I would have slapped him.

To get to the point of the issue, I finally had a doctor who ordered a Tilt-EEG. They tilted me and wired me for an EEG at the same time. Around the 40 minute mark I had one of my 'seizures.' That's when it was ruled a version of convulsive syncope and no one doubted me again.

Wow.. that's ridiculous what you went through. I would have flipped. Convulsive syncope should have been the first thing they thought of! Well, I was told initially (15 yrs ago) that was what I was having. Only mine aren't positional in nature so it would not happen on the tilt. There are so many types of episodes that we encounter I'm sure it's hard to narrow it down. My neuro said they were seizures due to my earlier description of the events, I won't torture you again! lol. So, I really don't know. He ruled out convulsive syncope. But I am curious about the guy whose heart stopped beating on the show. And I wonder if mine are actually cardiac in nature. I may call that doc, we'll see. Did yours stop?

[Heiferly]

Non-epileptic "seizures" such as convulsive syncope (i.e. the convulsions that are due to hypoxia from cardiac causes) will not show up on an EEG. Tia, have your seizures been documented on an EEG? Did they ever do video EEG monitoring on an EMU? Have the seizures responded to anti-epileptic medications? If they respond to epileptic medications, it's rather unlikely they are caused by cardiac events because those type of convulsions are non-epileptic (i.e. anoxic).

Your description of your seizures sounds very much like tonic-clonic seizures. The rigidity vs. convulsions pattern of tonic-clonic seizures is not generally seen in the non-epileptic convulsions you see with things like convulsive syncope. Loss of bladder control is also consistent with a tonic-clonic seizure, as is the long postictal recovery period. Especially considering you have known triggers, I would think it wouldn't be terribly hard for your docs to just admit you to an EMU and elicit one of your seizures under video EEG to confirm the nature of it. Has this been attempted?

As far as cardiac monitoring goes, if an epileptic cause cannot be found, short term event monitoring might be helpful. If that is insufficient, there are always implantable loop recorders that could offer longer term monitoring if you were willing to undergo the minor surgery (and possible scarring) to seek out an answer.

[Tia Koul]

Non-epileptic "seizures" such as convulsive syncope (i.e. the convulsions that are due to hypoxia from cardiac causes) will not show up on an EEG. Tia, have your seizures been documented on an EEG? Did they ever do video EEG monitoring on an EMU? Have the seizures responded to anti-epileptic medications? If they respond to epileptic medications, it's rather unlikely they are caused by cardiac events because those type of convulsions are non-epileptic (i.e. anoxic).

Your description of your seizures sounds very much like tonic-clonic seizures. The rigidity vs. convulsions pattern of tonic-clonic seizures is not generally seen in the non-epileptic convulsions you see with things like convulsive syncope. Loss of bladder control is also consistent with a tonic-clonic seizure, as is the long postictal recovery period. Especially considering you have known triggers, I would think it wouldn't be terribly hard for your docs to just admit you to an EMU and elicit one of your seizures under video EEG to confirm the nature of it. Has this been attempted?

As far as cardiac monitoring goes, if an epileptic cause cannot be found, short term event monitoring might be helpful. If that is insufficient, there are always implantable loop recorders that could offer longer term monitoring if you were willing to undergo the minor surgery (and possible scarring) to seek out an answer.

Thank you so much for the response and information. It is very confusing to me, especially since no one has thought to find the cause. I stopped taking the anti-seizure med Keppra since my events are very sporadic. I know how to reproduce an event and I would feel much relief having it caught on tape so to speak. It has not been recommended to me. Nor has a loop recorder been suggested by my cardiologist. Although long term monitoring makes more sense to me. After I saw the show, I revisited my quesiton about the cardiac cause and also wondered about the loop recorder. But I may check in with a new neurologist. He is a neuropathy specialist but has rave reviews and tries to problem solve. His group knows about nerve damage and autonomic issues, so maybe he could help. Just having an answer would put my mind at ease.

I wrote to a seizure specialist at NYU and she even said it could still be convulsive syncope. I was confused because of the things you and I describe as being 'seizure' symptoms. She still pressed the fact that it could be syncope. I wish there was one right answer. Which of course there is, but finding it is always another issue. I think convulsions lasts seconds, versus minutes in seizures. But again, I guess that's up for debate too. There must be an easier way. And also I read the nausea associated with the event relates to convulsions. So, who's right?? My brain tells me its a seizure, but the question still nags at me. Probably since i stopped breathing, I thought maybe my heart had stopped as well like the man on the show. But that's just a guess, and leads me back to the same question. And I shouldn't be the one answering this question! lol.

I also may have to move to Greece, and I'm very scared to lose my health care. I want to get things sorted before I go, if I go. And to have a definitive dx set, so i know what to tell the Greek md's. The health care on the islands is frightening. At best. My GP here is new, and starting to think I'm a little crazy. But she seems to give me the referrals I ask for so far. As with everyone, sometimes I want to give up. After all these years, a lot of years, I just would like some answers.... that goes for all of us

Thanks again for your reply!

[houswoea]

Last year I was hospitalized many times for 'seizures.' Since they weren't epileptic, I had more psych consults than I could count. I kept trying to explain that it was clear that it was a neurogenic problem, and they kept sending me social workers and doctors who asked if my parents had beaten me. And they refused to do anything about the seizures; I'd be having one and there'd be some guy sitting next to me stroking my hair (or trying to) and telling me it was okay, the bad things was over now and couldn't hurt me anymore. I was conscious during these episodes and if I would have had control of my body I would have slapped him.

What the crap! That had to be frustrating. And you can't really do much about it because getting angry proves you have issues and not talking about it proves denial! (okay, that's just my experience) But wow, I would be so angry!