Narcolepsy-Cataplexy & WLS

[Zzzombrie 86]

Yup, I'm a narco-cat and suffered from obesity, as is common among people with narcolepsy (PWN). I opted for WLS because I couldn't take it anymore. I was fat, depressed, and bordering other co-morbidities so I just had to get this taken care of.

HW 247

SW 230

CW 156

Anesthesia was scary. After I got out of surgery I had a hard time staying conscience

[James Marusek 5,244]

I was just wondering if the effects of weight loss had any detectable effect on your conditions of Narcolepsy or Cataplexy?

[UalreadyKnow 843]

Following!!!!! my husband has severe sleep apnea and I believe it has turned into a form of narcolepsy. He falls asleep while walking and has me scared out of my mind

[James Marusek 5,244]

Following!!!!! my husband has severe sleep apnea and I believe it has turned into a form of narcolepsy. He falls asleep while walking and has me scared out of my mind

I had sleep apnea prior to RNY surgery. My snoring kept my wife awake night after night. Within a couple weeks after surgery, my snoring stopped. I would sometimes find my wife hovering over me in the middle of the night. She was trying to detect if I was still alive because I was sleeping so soundly.

[UalreadyKnow 843]

I know the feeling! I'm used to his snoring, it's when he stops snoring that I wake up,because I know he is not breathing. So scary!!!

[Zzzombrie 86]

I was just wondering if the effects of weight loss had any detectable effect on your conditions of Narcolepsy or Cataplexy?

Nope. Shit is neurological so weight has nothing to do with it. I was diagnosed mild OSA but that's from being heavy and it's gone. Obesity is a comorbidity though because the hypothalamus also controls cravings (that's where narcolepsy originates).

My meds didn't affect me differently either. That's one area I thought losing weight would, was hoping. Body burns through sodium oxybate at an accelerated pace as before. Cuts through my doses in 1-2 hours.

[Zzzombrie 86]

Following!!!!! my husband has severe sleep apnea and I believe it has turned into a form of narcolepsy. He falls asleep while walking and has me scared out of my mind

Unlikely narcolepsy. He's majorly sleep deprived and should seek treatment if he hasn't already. His sleep deprivation is causing Excessive Daytime Sleepiness. Narcolepsy is part genetic, part auto immune, part environmental.

But a sleep disorder is a sleep disorder so feel free to stick around. Might help pinpoint my issues under anesthesia. I was setting off alarms out of surgery because my heart rate was too low. Floated in and out of consciousness and had problems with sitting or standing. Forget walking. I'd go into shock.

I now wish I named this forum Sleep Disorders & WLS

[UalreadyKnow 843]

Following!!!!! my husband has severe sleep apnea and I believe it has turned into a form of narcolepsy. He falls asleep while walking and has me scared out of my mind

Unlikely narcolepsy. He's majorly sleep deprived and should seek treatment if he hasn't already. His sleep deprivation is causing Excessive Daytime Sleepiness. Narcolepsy is part genetic, part auto immune, part environmental.

But a sleep disorder is a sleep disorder so feel free to stick around. Might help pinpoint my issues under anesthesia. I was setting off alarms out of surgery because my heart rate was too low. Floated in and out of consciousness and had problems with sitting or standing. Forget walking. I'd go into shock.

I now wish I named this forum Sleep Disorders & WLS

the only treatment given was the cpap machine and he hates that thing! He says it gives him nightmares of being suffocated or choked? As his sleep apnea/sleep walking had worsened... His weight has skyrocketed. He's gone from being about 215lbs (6"1) to 350lbs in less than year. No diet change except no more beer (it worsens the apnea) that totally sucks that you had a hard time with anesthesia.... Must of been some scary shit!!

[Zzzombrie 86]

It was scary for sure. Is your husband considering surgery? It would help him greatly to get rid of that extra weight. I'll give you an idea of what lead up to my narcolepsy diagnosis so you can talk with him and compare.

Nightmares most nights, sometimes a few times a night including hallucinations or the feeling of dreaming while waking up, happened to me often.

Aside from nightmare wakings, woke up during the night every 2/3 hours without cause and had trouble falling back asleep. I'm a seriously light sleeper.

Frequent sleepiness during the day while doing normal activities started while I was 8/9 and got progressively worse through life. I had trouble staying awake if I had to sit in meetings, classes, training, movies, and always fell asleep while riding in a car and after meals. Mid-20s I was having sleep attacks while standing up and walking.

I also have cataplexy which started during puberty and laughing made me collapse.

I have a history of performing actions while sleeping (talking, fighting, and sex) called somnambulism but not much to connect that to narcolepsy. But my narcolepsy meds have stopped that.

Did your husband have a sleep study done to get diagnosed with OSA? If the overnight test was followed up with a day of nap testing and they did not see cause for a narcolepsy diagnosis, then not possibly narcolepsy. MSLT measures REM onset once asleep and is essential to narcolepsy diagnosis.

If your husband is refusing his treatment plan based on nightmares, tell him to ask his Dr. about starting Prozac to inhibit REM states. Or medical marijuana would also help with that but is reliant on his situation and state. Prozac was my first line of defense until my diagnosis was secured. My state (NV) has horrible and greedy docs and after 2 years I had to go out of state to get a proper diagnosis.

[Zzzombrie 86]

Just want to add the primary symptoms of narcolepsy are:

Excessive Daytime Sleepiness

Disrupted Nocturnal sleep

Intrusive REM sleep

OSA only shares in Sleepiness because their frequent Nocturnal wakings are due to a lack of oxygen to the brain.

[WL WARRIOR 690]

I've been experiencing excessive daytime sleepiness. I thought anemia was the culprit, but my Iron isn't so terribly low that it would cause such problems. I do wake up every 2-3 hours at night as far back as I can remember. It's just become a habit, I guess.

I'm unsure of what to do about my constant tiredness. Caffeine doesn't even help all that much. My thyroid is underactive, but I've been on meds for that for quite some time. I'd like to find something natural because meds like Provigil are too much like amphetamines. They give me nausea and don't really fix the cause of the problem.

Oddly, losing 150 pounds hasn't helped my sleepiness problem as much as I hoped it would. There are times that I feel a little more energetic, but it's not as often as I'd like.

[UalreadyKnow 843]

It was scary for sure. Is your husband considering surgery? It would help him greatly to get rid of that extra weight. I'll give you an idea of what lead up to my narcolepsy diagnosis so you can talk with him and compare.

Nightmares most nights, sometimes a few times a night including hallucinations or the feeling of dreaming while waking up, happened to me often.

Aside from nightmare wakings, woke up during the night every 2/3 hours without cause and had trouble falling back asleep. I'm a seriously light sleeper.

Frequent sleepiness during the day while doing normal activities started while I was 8/9 and got progressively worse through life. I had trouble staying awake if I had to sit in meetings, classes, training, movies, and always fell asleep while riding in a car and after meals. Mid-20s I was having sleep attacks while standing up and walking.

I also have cataplexy which started during puberty and laughing made me collapse.

I have a history of performing actions while sleeping (talking, fighting, and sex) called somnambulism but not much to connect that to narcolepsy. But my narcolepsy meds have stopped that.

Did your husband have a sleep study done to get diagnosed with OSA? If the overnight test was followed up with a day of nap testing and they did not see cause for a narcolepsy diagnosis, then not possibly narcolepsy. MSLT measures REM onset once asleep and is essential to narcolepsy diagnosis.

If your husband is refusing his treatment plan based on nightmares, tell him to ask his Dr. about starting Prozac to inhibit REM states. Or medical marijuana would also help with that but is reliant on his situation and state. Prozac was my first line of defense until my diagnosis was secured. My state (NV) has horrible and greedy docs and after 2 years I had to go out of state to get a proper diagnosis.

thanks for all the info!! We have a friend of the family that is a RT and gave him a cpap machine because he assumed apnea, my husband hasn't had medical insurance EVER in his adult life, needless to say, no healthcare at all. He's at a new company in which I enrolled him in the insurance, it's crappy but it's something... Problem is getting him to see a doc now. (Baby steps) he has everything you mentioned above, the actions in his sleep, excessive daytime sleepiness and he's lucky to sleep a full hour EVER!!! He's up 9-10 times a night. His waking up is torture do he goes to smoke a cig every time, I know nicotine is a stimulant and I've told him but he's hardheaded

[Zzzombrie 86]

Yeah I dunno. I spent years trying to find ways to cope. Though I'd never choose to consume stimulants while I was trying to sleep. That's just bad sleep hygiene. Hard to say he's not perpetuating his own issues to an extent.

I tried natural remedies for a year, cut caffeine, took melatonin, etc. I don't smoke, but now I occasionally vape cannabis. I used to drink massive amounts of caffeine, took actual Sudafed, benadryl at night to knock me out. It wasn't a great feeling being like that. Then I was looking for stronger solutions. Phentermine, trazadone, and prozac. I was seriously considering resorting to street drugs before diagnosis because I had nowhere else to turn.

I'm so thankful for my insurance. I also went without for so long (hence considering street drugs) that it's tough thinking I need a doctor in my corner but I do. My meds cost more every month than a year's salary flipping burgers. Insurance takes care of it and keeps me sane. Narcolepsy gets really bad around mid 20s and then slowly deteriorates from there without meds. I wouldn't be able to function at all without mine.

[Zzzombrie 86]

I've been experiencing excessive daytime sleepiness. I thought anemia was the culprit, but my Iron isn't so terribly low that it would cause such problems. I do wake up every 2-3 hours at night as far back as I can remember. It's just become a habit, I guess.

I'm unsure of what to do about my constant tiredness. Caffeine doesn't even help all that much. My thyroid is underactive, but I've been on meds for that for quite some time. I'd like to find something natural because meds like Provigil are too much like amphetamines. They give me nausea and don't really fix the cause of the problem.

Oddly, losing 150 pounds hasn't helped my sleepiness problem as much as I hoped it would. There are times that I feel a little more energetic, but it's not as often as I'd like.

I take Nuvigil. One pill lasts me all day and I only take half my dosage during weekdays. I also take Xyrem for my Cataplexy and to get some deep sleep. Between the 2 my sleepiness is mostly subsided but I do feel worn out usually. Nuvigil is about as clean of a stimulant you can take and has the least likelihood of addiction.

The problems you are describing sound foreboding. I think you should talk to a sleep doctor because a general doctor usually misdiagnoses narcolepsy for something else. I've had my thyroid checked, Iron, blood sugar, then when he saw no abnormalities he said I had hypertension. I lost faith right then because I went in complaining of daily fatigue bad enough to cause me to nod off while standing up or walking. Tension did not equal fatigue in my mind. I also forgot to tell him about falling down when I laughed but I don't think he would have caught it. I will only see specialists now because I don't feel GPs cut it.

It is possible to have narcolepsy without cataplexy so go see someone.