Epilepsy AND narcolepsy!

[Mellismom]

I finally have a full diagnosis.

It all took a sudden turn when my neurologist suspected I also had narcolepsy. I went through some tests and most of my issues are appearently not caused by epilepsy.

I have cataplexy, sleep paralysis, hypnagogic hallucinations and get overwhelmingly tired. Well, the tired part I thought was "just me" and the other things I thought had to do with epilepsy. So...

It turns out the epilepsy is only a small part of it. Small partial seizures. A bit surprised but happy to know what is going on in this weird brain of mine and now I get why the medicine didn't help on all of the symptoms.

Others who experienced the same?

 

[Nakamova]

Congrats on finally getting a full diagnosis! I was talking to someone with narcolepsy recently, and some of the symptoms she described sounded like partial seizures. So it seems that there may be some "family" overlap between the two disorders, similar to the one between partial seizures and migraines.

I hope the new diagnosis helps with treatment.

 

[masterjen]

I do not have the accompanying conditions you have, but I do have other conditions in addition to epileptic seizures. Until the sleep study these other conditions were difficult to determine if they were another type of seizure or some other kind of neurological/muscular episode. Turned out to be the latter, and this has allowed treatment to be more specific. Good luck to you, and I hope your symptoms improve!

 

[Mellismom]

I also get migraines. I wonder why I got all three. Like, what happened that could cause all of them at the same time? Is there a specific place in the brain that could be "the root"? I've heard of others who have two of them at the same time. Maybe it's just a coincidence.

 

[Mellismom]

Thanks Masterjen. Again, what you describe is something neurological. I'm really curious of how it's all connected.

 

[Nakamova]

It may be that there's a genetic component. The person I know with narcolepsy said that other members of her family had similar issues like migraines.

 

[Loopy Lou]

I've had tests done for narcolepsy, since i have excessive daytime sleepiness, but my polysomnogram and sleep latency came back as just outside the diagnostic criteria for narcolepsy. Official diagnosis seemed to be "Well, there's definitely something wrong there, but you're just outside the statistics" and a shrug of the shoulder.

Well, i laugh now, but i was very upset at the time, and the problem still hasn't been resolved >.<

It can be very difficult to diagnose fully, i'm glad you have your answers, you know what you're dealing with now

 

[masterjen]

It may be that there's a genetic component.

I agree with this, and that is what is being explored in my case.
Mellismom: I would encourage you to ask for a referral to a geneticist, and one who is familiar with neurological disorders (a lot are not). Research your family history (parents, siblings, grandparents, aunts/uncles, cousins) to find out about their health issues. Many people have the mistaken belief (and I was one of them) that a genetic disorder meant you would have had the condition or symptoms from childhood, but this is not the case for a lot of conditions. You never know when the "light-switch" will turn on to spark the symptoms to start appearing.

 

[seagull]

Have they started you on monfilla think that what it called also it the smart pill

 

[Mellismom]

Loopy Lou, I'm sorry you didn't get a better explanation.

Masterjen: I'll follow your advice. For now I only know that my sister suffers from migraines but I would like to know if there were others.

seagull: They haven't started me on anything yet. We're still talking about treatment.