Narcolepsy
Its_me_jen
Thread Starter
Join Date: May 2004
Location: Salina, Ks
Posts: 8,547
Narcolepsy
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.
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.
Forum Leader
Join Date: Nov 2006
Location: Scottsdale, AZ, one big happy dysfunctional family!
Posts: 23,015
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.
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.
Member
Join Date: Dec 2003
Posts: 12,136
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.
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.
Administrator
Join Date: Mar 2002
Location: CA
Posts: 10,680
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?
Did you have a lab sleep study or the home test?
Member
Join Date: Feb 2008
Location: Kansas
Posts: 10,182
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.
Its_me_jen
Thread Starter
Join Date: May 2004
Location: Salina, Ks
Posts: 8,547
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?
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?
Member
Join Date: Oct 2008
Posts: 113
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
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
Member
Join Date: Apr 2016
Posts: 2
Glad I found this thread!
I have been reaching out and trying to find others in recovery with narcolepsy! My narcolepsy was misdiagnosed for 18 years! It literally took everything from me before I was diagnosed especially my sanity! I had been clean for 8 years when things got really bad for me! I could not stay awake at all. I have four children and was working at the time. Went to meetings, had a sponsor, sponsored people and worked a tight program. When i began to find myself an hour from home @cheer with my daughter's and I was unable to stay awake to safely drive home. I began to take more of the stimulants that had been prescribed to me for focus at the time. I was so recovery minded that I believed this was a relapse at the time. I thought what in the world is wrong with me. My support system just treated me like I was crazy. I dropped out of everything and slept for about a year and a half. Yes a year and a half. My brother would literally come to my house and get me up put me in the car and drive me to the doctors appts. To the outside world I looked like a using addict trying to get more drugs because I had been so open about my recovery. I was finally diagnosed this past December and quickly given the maximum dose of stimulants possible. Which was three times what I took when I believed I relapsed. My doctor started to work on ny paperwork for approval of xyrem. A medication only prescribed for severe narcolepsy. I am now so isolated and lonely. I announced it as a relapse and believed it was at the time. I now know after my diagnosis I was merely surviving!! I have never touched another drug or drink! However I don't even feel right saying I have only 18months clean when even my doc says I was doing what I had to do? Tough place to be! I used to shoot herein and cochise and wash it down with a case of beer! This sucks to feel like my narcolepsy took my recovery from me! I have found no body with a similar experience
Member
Join Date: Apr 2016
Posts: 2
Narcolepsy is serious
Narcolepsy sucks! It is misdiagnosed ALL the time! It is believed that 75% of people with narcolepsy are not diagnosed but suffering the symptoms and being treated for everything but the REAL problem! The core Symptoms of narcolepsy are unmistakable but can be passed off as caused by other problems. Look up sleep deprivation and you will see a list of thousands of symptoms caused by the lack of sleep. Very often there are so many emotional and behavioral health symptoms that the person will be treated as a mental case! It affects all of your emotions, focus and brain health. I looked like a crazy person but no medications ever worked for me because sleep deprivation was my problem!#notcrazy#sleepy#narcolepsyawareness#walki ngzombies
Member
Join Date: Dec 2017
Posts: 1
I too have narcolepsy.
I have just recently been diagnosed with narcolepsy. It only took 3 years of being tired and telling my doctor something wasn't right. I have just recently started a medicating and it is hindering more than helping. I am still sleeping at inappropriate times with no motivation and insomnia. It gives me nausea and head aches and its supposed to be better for me than traditional approaches. Frustrating is alive and well in this recovering addict. Sometimes we have extenuating circumstances that don't allow us to have total abstinence. I got around chronic pain without narcotics but it doesn't look like I'm going to with this one. Tired of being half alive. I tried to sleep for the first half of my life now I'm fighting to stay awake.
Member
Join Date: Jun 2018
Posts: 1
I too have narcolepsy. I've been in recovery for 8 years. My drug of choice was heroin but to be fair I did whatever was in front of me! I was diagnosed with narcolepsy seven years ago however my symptoms started when I was 15. I am 47 now. My narcolepsy is pretty severe even being on medication. I'm a single mom I have two girls but only one of them is in the home she's 11. My other daughter is 23 and on her own. I'm on disability because my narcolepsy makes it impossible for me to work. I cannot drive due to my narcolepsy and last year the doctor made it official by calling the DMV and revoking my driving privileges. Not sure why this bothers me so much since I hadn't driven for years I guess maybe it just felt permanent now! If you myself being more more isolated and I know is far as my recovery goes that is not good. When I go out and people see me fall asleep believe the last thing they are thinking is that this woman has narcolepsy! I don't even think narcolepsy makes the list of what they're thinking. I have been accosted on public transportation with my daughter being told that I should get off the drugs I'm a mother because they see me having a sleep attack and they think I'm nodding off from drugs. I have good days and I had bad days and that just kind of how it goes with narcolepsy. But it gets overwhelming. And I am recovering addict and I need support with my recovery! I've had a lot of difficulty just in general with going in Public and people thinking I'm on drugs and not just thinking it they get pretty vocal and forward with what they think. But in trying to attend recovery support groups I found people to be so judgmental and vocal about thinking I'm on drugs that I used up trying to find any recovery support groups because I just feel like it's not worth it anymore I seem to always feel worse then better after I've attended in the past. And wondering if there's others in recovery that have narcolepsy that have experienced some of these things or all of them?
Currently Active Users Viewing this Thread: 1 (0 members and 1 guests)
