Narcolepsy

[PaperDolls]

I have two of the four symptoms. My EDS is out of control right now. I'm having to take several short naps a day. It's really effecting my work. I had a sleep study done once and was told I had symptoms of it but wasn't diagnosed. I wasn't having the trouble I'm having now. It's crazy! Anyone have experience with it?


What Are the Symptoms of Narcolepsy?

Symptoms of narcolepsy include:

* Excessive daytime sleepiness (EDS): In general, EDS interferes with normal activities on a daily basis, whether or not a person with narcolepsy has sufficient sleep at night. People with EDS report mental cloudiness, a lack of energy and concentration, memory lapses, a depressed mood, and/or extreme exhaustion.
* Cataplexy: This symptom consists of a sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control. It can cause symptoms ranging from slurred speech to total body collapse depending on the muscles involved and is often triggered by intense emotion, for example surprise, laughter, or anger.
* Hallucinations: Usually, these delusional experiences are vivid and frequently they are frightening. The content is primarily visual, but any of the other senses can be involved. These are called hypnagogic hallucinations when accompanying sleep onset and hypnopompic hallucinations when occurring during awakening.
* Sleep paralysis: This symptom involves the temporary inability to move or speak while falling asleep or waking up. These episodes are generally brief lasting a few seconds to several minutes. After episodes end, people rapidly recover their full capacity to move and speak.

[Astro]

No experience with it Jen, other than maybe the EDS, but the longer I'm in recovery and practicing the principles, the better I seem to sleep. Being so active and involved in recovery gives me loads of energy during the day and I sleep restfully at night.

Just wanted to say hello to you and I'm sure that someone will post soon with their experience. It sounds scary to me and I know it's a very real issue, I hope you find the answers you're looking for.

[Rowan]

I'm always tired. Thought it was side effect of my a/d's, but I dunno.

Always falling asleep on my commute in to work, and often could fall asleep upon getting home at night. Sometimes I go straight to bed.

I'm tired now, just talking about it.

[Bamboozle]

I don't have Narcolepsy, but I have had bouts of sleep paralysis. Those can be scary. I haven't had one for awhile so I'm due.

I hope someone can come by who can relate.

[PaperDolls]

I've been having problems when driving into work. Talk about scary! I also get sleep paralysis sometimes. I might be due again soon too.

[Morning Glory]

Make sure you get your thyroid checked too. Mine is really low right now and I can't wake up at all. How is your focus and memory? Any muscle pains? Dry hair or loss of hair? Dry skin?

Did you have a lab sleep study or the home test?

[Freedom1990]

I have a friend who is on disability now who has a sleep disorder that isn't considered true narcolepsy, but she has a lot of trouble staying awake at all without her meds. It was getting to the point she was having trouble with the commute to work and home.

[PaperDolls]

Originally Posted by Morning Glory

Make sure you get your thyroid checked too. Mine is really low right now and I can't wake up at all. How is your focus and memory? Any muscle pains? Dry hair or loss of hair? Dry skin?

Did you have a lab sleep study or the home test?

I've had my thyroid checked several times in the past for similar reasons. Never found anything.

Focus and memory -- not good at all
Muscle pains -- spent 3 hours at the chiropractor today due to a muscle spasm.
Dry skin -- nah, nothing abnormal

Now what?

[Astro]

I'm glad you persevere Jen, you just keep on keepin' on. Can ya spare any of that mojo?

[PaperDolls]

little mojo jojo

[Rebecca4]

I have a bit of experience with it, maybe it could help you.

Narcolepsy is often misdiagnosed or diagnosed late on in life - due to it being missed or diagnosed as something else.

Often the sufferer will have difficulty staying awake but will then find it hard to maintain sleep at night.
Narcolepsy can be due to a number of things - disease (Parkinsons and MS patients often suffer from it), drugs (some parkinsons drugs are thought to cause it) or brain injury - such as a stroke, road traffic accident etc.

It is ususally diagnosed through tests in sleep labs at hospitals, but this can be sporadic.
The excessive daytime sleepiness has a huge impact on the sufferers quality of life. It can be dangerous for example when a sufferer is cooking with a sharp knife or driving and may fall asleep.

The mainstay of treatment used to be amphetamines. However there are new drugs which allow the patient to stay awake during the day but sleep at night and they do not get a buzz from them and are non addictive.

Hope that helps a bit
xx