SUDEP question

[darkmarkshark]

I've been thinking about this since I read someone talking about the correlation between sleep apnea and Sudden Unexplained Death in Epilepsy.

Sudden Unexplained Death in Epilepsy results from stopping breathing while sleeping right?

And a c-pap for sleep apnea forces air into your lungs until you start breathing again right?

So why isn't a cpap prescribed for people who are at greater risk for Sudden Unexplained Death in Epilepsy but don't have a serious case of sleep apnea?

[wowthissuxass]

After my diagnosis I learned that my wife and her friend had been hiding something from me. Her friends boyfriend died last year in his sleep from Sudden Unexplained Death in Epilepsy. Needless to say I was quite freaked out.

I am finely getting to the point where I can stop obsessing about it and just live life.

I know this doesn't answer your question, but I am sure someone on here will.

John

[tinasmom]

Here are the Risk Factors of Sudden Unexplained Death in Epilepsy

* People with refractory (uncontrolled or poorly controlled) epilepsy
* People with severe epilepsy and learning difficulties
* Young patients with a long history of generalized tonic-clonic seizures
* Having at least a 2-year history of epilepsy
* People who take 2 or more anti-epileptic drugs (especially if combined with psychiatric agents)
* Poor compliance with anti-epileptic medications (Autopsies reveal that, at the time of death, 50% of affected patients had blood concentrations either below therapeutic levels or in completely undetectable amounts.)
* Alcohol abuse (definite links found)
* Alone during seizure

Here are Precautionary Measures to help Prevent Sudden Unexplained Death in Epilepsy

* Controlling seizures seems to be the most important thing, however, a very few people have not survived their very FIRST seizure so PREVENTION is important.
* Keep appointments so your doctor can monitor any changes, and adjust your medications accordingly.
* Take medications for seizures regularly
* Avoid sudden drug withdrawal, or dosage changes
* Adopt a healthy lifestyle:
o Maintain regular and adequate sleep patterns
o Exercise regularly
o Eat regular, nutritious meals
o Learn to cope with stress
* Avoid alcohol and street drugs
* Always stay with company so that someone can help during seizure
* Nocturnal Seizures - Seizures occuring during sleep have a higher incidence of Sudden Unexplained Death in Epilepsy. Preventive measures might include having the bed near the floor, changing from a feather to a solid foam pillow (which may reduce the possibility of suffocation), and having a monitor to alert others in the home when a seizure occurs.

I hope this helps to ease your fears.

[brain]

What Tina's Mom posted is absolutely correct in
all angles.

I am a very high-risk for Sudden Unexplained Death in Epilepsy and have already
had too many close brushes with Sudden Unexplained Death in Epilepsy including
one recently. And as it's posted:

* People with refractory (uncontrolled or poorly controlled) epilepsy
* People with severe epilepsy and learning difficulties
* Young patients with a long history of generalized tonic-clonic seizures
* Having at least a 2-year history of epilepsy
* People who take 2 or more anti-epileptic drugs (especially if combined with psychiatric agents)
* Poor compliance with anti-epileptic medications (Autopsies reveal that, at the time of death, 50% of affected patients had blood concentrations either below therapeutic levels or in completely undetectable amounts.)
* Alone during seizure

(You will notice I removed one out of the quote
because it doesn't apply to my case,)

I am Intractable / Refractory, have been for
decades, and have been on as many as 5
anti-epileptic drugs at one time just
to control seizures! While now back down to
2 anti-epileptic drugs plus Folic Acid, still very
poorly controlled. Not a candidate for surgery,
or anything else - however technologies in
Neuroscience is progressing and advancing and
making accomplishments of what was deemed
"impossible" becoming possible in some complicated
and complex cases, giving some hope to those
who fall into these categories.

[darkmarkshark]

No offense but I don't think that anyone has responded to what I asked about. I didn't post that I was worried about Sudden Unexplained Death in Epilepsy or ask about the risk signs - I posted asking why C-paps aren't prescribed for those who are at risk for it, being as that the purpose of a C-PAP is to provide air to the lungs when a person stops breathing in the sleep and Sudden Unexplained Death in Epilepsy is caused by stopping breathing while sleeping

It seems to be that given what c-paps are for, those with high likelihoods should be prescribed one, regardless of whether or not they have sleep apnea. It seems like using one could prevent a decent number of Sudden Unexplained Death in Epilepsy cases

[tinasmom]

darkmarkshark -

Here is some other information that might clear things up:

A sudden dysfunction of the heart or lungs seems to be responsible, but we do not know what causes the dysfunction. The most important characteristics of Sudden Unexplained Death in Epilepsy are summarized in Table 1.

TABLE 1. WHAT WE KNOW ABOUT Sudden Unexplained Death in Epilepsy (SUDDEN UNEXPECTED DEATH IN EPILEPSY)
Generally uncommon.
More common between ages 20–40 years.
More common in people with uncontrolled seizures.
More common in people with many years of seizures.
Best prevented by good seizure control.

There is no proven method to prevent Sudden Unexplained Death in Epilepsy. My daughter actually died from Sudden Unexpected Death in Epilepsy and I have done as much research as possible on this subject. I have also attended a educational dinner with a doctor speaking on this subject.

A C-pap is not going to stop someone from having a seizure. I think it would be more dangerous to have someone using a c-pap if they have nocturnal seizures as my daughter did. I think a C-pap could actually cause someone to aspirate and die while seizing.

I think your question is a good one and can see how you would think a C-pap could help prevent Sudden Unexplained Death in Epilepsy. Does this seem to answer your question better?