8 replies to this topic

[Mmueller]

For the last two months my sleepiness has reached a point that I could not function. I went to the Doctor and he told me it was caused by my sleep apnea that I was diagnosed with 8 yrs ago. I don't use my cpap. I hate it. He prescribed me 200 mg provigil. The first day and first week I was so shocked. I was feeling like my eyes were fully open for the first time in a long time. I have been battling this so long its hard to say when it started. It has gotten noticably worse the last 2 months. I have been taking provigil for a little over a month. After the first week the sleepiness creeped back in. I have attacks of sleepiness that last about 30 minutes. It comes in waves about six times a day. I will be in the middle of talking to someone and then realize that I am dreaming. Or I will be talking to my daughter and then all the sudden she is shaking me saying, Mom you are snoring!.. And I had no idea I was asleep. My eyes get so heavy. On weekends now I take 4 or so naps a day. When I'm at work I have to fight it off. I have low thyroid and pcos so I have mostly blamed it on hormones. Everytime I've been pregnant it gets really really worse. I have always thought that maybe I was just a really lazy person. When I was little I would fall asleep while playing. I would fall asleep in strange places, like on the swing set or I would just lay down in the grass or on the kitchen floor. I was a lot of trouble to wake in the mornings for school. And I also did a lot of sleep walking. This was always just a source of funny stories witth my sisters but I never thoughjt much about. I skipped my provigil one day a week ago and it was so horrible. Instead of a 30 minutes sleep attack it was an 8 hour sleep attack and it was exhausting trying to fight it all day. I really think my problem is deeper than just sleep apnea but I am not sure what to next. Maybe I should ask for that daytime sleep study?
I little background info... I'm 35 female 3 kids, married, work full time, commute to work so drive about 800 miles a week. Other health problem: sleep apnea, snoring, pcos, low thyroid, pre diabetes, over weight. Any advice is welcome.

[sleepywriter]

For the last two months my sleepiness has reached a point that I could not function. I went to the Doctor and he told me it was caused by my sleep apnea that I was diagnosed with 8 yrs ago. I don't use my cpap. I hate it. He prescribed me 200 mg provigil. The first day and first week I was so shocked. I was feeling like my eyes were fully open for the first time in a long time. I have been battling this so long its hard to say when it started. It has gotten noticably worse the last 2 months. I have been taking provigil for a little over a month. After the first week the sleepiness creeped back in. I have attacks of sleepiness that last about 30 minutes. It comes in waves about six times a day. I will be in the middle of talking to someone and then realize that I am dreaming. Or I will be talking to my daughter and then all the sudden she is shaking me saying, Mom you are snoring!.. And I had no idea I was asleep. My eyes get so heavy. On weekends now I take 4 or so naps a day. When I'm at work I have to fight it off. I have low thyroid and pcos so I have mostly blamed it on hormones. Everytime I've been pregnant it gets really really worse. I have always thought that maybe I was just a really lazy person. When I was little I would fall asleep while playing. I would fall asleep in strange places, like on the swing set or I would just lay down in the grass or on the kitchen floor. I was a lot of trouble to wake in the mornings for school. And I also did a lot of sleep walking. This was always just a source of funny stories witth my sisters but I never thoughjt much about. I skipped my provigil one day a week ago and it was so horrible. Instead of a 30 minutes sleep attack it was an 8 hour sleep attack and it was exhausting trying to fight it all day. I really think my problem is deeper than just sleep apnea but I am not sure what to next. Maybe I should ask for that daytime sleep study?
I little background info... I'm 35 female 3 kids, married, work full time, commute to work so drive about 800 miles a week. Other health problem: sleep apnea, snoring, pcos, low thyroid, pre diabetes, over weight. Any advice is welcome.

Welcome to the boards! Are you still not using the CPAP? Many doctors will be unwilling to do an MSLT to look for narcolepsy until they can see that the sleep apnea is under control. My husband has sleep apnea. Before he started using his CPAP, he used to take multiple naps a day, even falling asleep at his desk at work! Excessive daytime sleepiness is a hallmark symptom of narcolepsy for sure, but it is also a major symptom of sleep apnea. I hope that you do not have both sleep apnea and narcolepsy...that would be awful.

How long has it been since you have seen a doctor? I would suggest going. I'm sure they will order a split PSG to see if the CPAP helps with the apnea. As much as you hate it (I wouldn't want to wear one either) I'm afraid you're going to be hard pressed to find a doctor who will let you get away with not wearing it.

[Mmueller]

Yes I know what you mean about the cpap, i know I am supposed to wear it. I really wish I could wear it, I usually follow the rules. If the dr says to do something I do it, plus I would do anything to feel better. But It is such an anxiety thing for me. I guess it makes me chlostrophobic is the only way I can describe it but it is like that thing from Aliens on my face and I can't stand it. I have deviated septum so I have to wear the full face mask. It feels like I am submersed in water suffocating I can't breathe when I am wearing it. My doctor seemed pretty understanding the first time I talked to him about it. He said it was very common for people to have issues with the cpap. He started me on the provigil but now it's not enough. He had mentined at the time that i may need more later and that I may need to add a sleep aid if it gives me insomnia, which it does on weekends if I sleep in and then take it after 9am. On weekdays i take at 5 am. I see him again in two days I am going to tell him how I have gotten worse and still sleeping all the time even on the provigil. Lately I have been sleeping while doing stuff. Like I am typing and I fall asleep and then I realize I typed a bunch of gibberish. Or im at my desk and i wake up in a meeting in another room and i don't remember walking to the other room but everyone around me is acting normal like they didnt know i was asleep, so i guess I was acting normal. Sometimes i will have as long as thirty minutes that i can not account for. I dont know if there is a name for that, is blackout the right term? I guess the thing that is making me think narcalepsy not just over tired from sleep apnea is this. i was thinking with sleep apnea you are just really exhausted so you fall asleep.. The same way you would be if you stayed up all night with a crying baby and didnt get any sleep. I know that kind of tired and that is not what i am feeling. But why would it be then that I will be totally fine feeling wide awake, multitasking and getting all kinds of work done and then bam here comes a wave of sleepiness and for half an hour I struggle to keep my eyes open and keep nodding off, then all the sudden I'm better again and functioning normally again, hyper at times even? Then two hours later I'm working and going along just fine and then bam all the sudden I am in the middle of dreamworld again. Maybe I'm wrong but I thought with apnea I would just be worn out all the time? I am also curious if I am worse or if the provigil has made me worse. I have been on it about 45 days. And I skipped one dose when it was time for my refill because I ran out before I had a chance to go to pharmacy and it was so horrible. It was so much worse than it was before I started taking it. Like 100 times worse than 1 month previous. So now I am afraid without provigil I would be completely stopped in my tracks. Unable to function. Then I have heard that narcolepsy doesn't get worse it stays the same? But I am seeing a progressive decline in the last two months. Yes I am really confused. Can you tell? I also started migraines about six months ago and they are increasing in frequency as well. Never had migraines my whole life until now. Started out once a month like clock work then twice a month now almost weekly. Dear Lord I hope I don't have a tumor. Hopefully my doctor will have some smart ideas. He usually does. I feel like I'm going mad. Luckily I have good insurance so I will ask him to run all the tests that we can to figure this out. I need to get back to good health for my children's sake. I must say it is so nice to "vent" here on this forum. I have been very embarrassed to talk about it even with my husband at times. I feel like I'm going on and on about it but it has just taken over my life and I worry about it all the time. Somehow it makes me feel a little better to talk about it.

[sleepywriter]

I can understand the feelings of claustrophobia. That's how I'd feel. I know it helps open your airways to breathe easier all night, but I absolutely cannot STAND to have my face covered up. You mentioned a deviated septum....my boss had surgery to correct that and his snoring has stopped. Have you seen a doctor about that?

"Or im at my desk and i wake up in a meeting in another room and i don't remember walking to the other room but everyone around me is acting normal like they didnt know i was asleep, so i guess I was acting normal. Sometimes i will have as long as thirty minutes that i can not account for. I dont know if there is a name for that, is blackout the right term?"

That's called automatic behavior. It can happen when your brain is in a microsleep. This is common in people with narcolepsy, but I think it is a symptom of sleep deprivation as well, which occurs with lots of sleep disorders, including unmanaged sleep apnea.

The cyclical nature of your symptoms CAN indicate narcolepsy, but again, lots of symptoms overlap in different sleep disorders. It could also be the Provigil wearing off throughout the day. Are you taking one large dose or multiple smaller doses?

"Then I have heard that narcolepsy doesn't get worse it stays the same? But I am seeing a progressive decline in the last two months."

Well, doctors say that it doesn't get worse. Perhaps the disorder itself doesn't, but the symptoms can come and go in their intensity, especially as the body becomes used to medications, rendering them ineffective or less effective.

"I also started migraines about six months ago and they are increasing in frequency as well."

Stimulants give me migraines. So does sleep deprivation. Nuvigil, which is basically a longer-acting Provigil, gave me BAD migraines.


I definitely think you should go see your doctor. And feel free to vent as much as you need!

[Mmueller]

I've had surgery on my nose ten yrs ago. It was a horrid experience. I've even told it needs to be redone. So I have been sort of dreading that but I will do it if it helps. That is going to be one of the questions for doc that maybe I need to go ahead and do that and maybe get tonsils and adenoids remove while I'm at it. I certainly hope I don't have narcolepsy I'm just worried that I do. I see the doc tomorrow. I'm thinking cat scan, sleep study, referral to neurologist and an ear nose and throat specialist may be needed. Whatever is wrong with me I just want to find out what it is so I can start doing whatever I can to get better. Today was horrible. I could not complete the simplist errand and had to go home and sleep. I was so embarrassed and disappointed. I am just so done with this whatever it is.

[sleepywriter]

I've had surgery on my nose ten yrs ago. It was a horrid experience. I've even told it needs to be redone. So I have been sort of dreading that but I will do it if it helps. That is going to be one of the questions for doc that maybe I need to go ahead and do that and maybe get tonsils and adenoids remove while I'm at it. I certainly hope I don't have narcolepsy I'm just worried that I do. I see the doc tomorrow. I'm thinking cat scan, sleep study, referral to neurologist and an ear nose and throat specialist may be needed. Whatever is wrong with me I just want to find out what it is so I can start doing whatever I can to get better. Today was horrible. I could not complete the simplist errand and had to go home and sleep. I was so embarrassed and disappointed. I am just so done with this whatever it is.

My boss also had to have his surgery repeated. I don't remember why.


Sleep disorders really stink. It's extremely frustrating to watch others who truly are lazy and unmotivated when all YOU want to do is to feel awake enough to get the things accomplished that they are not.

Good luck! Keep me posted!

[Mmueller]

Went to see doc today. He switched me from 200mg provogil to 250 nuvigil. We will see how this works. He says we don't need a sleep study because even if I have N, I already have a diagnosis for OSA and the medications used are the same anyway. He also said there is not much difference in the symptoms between N and OSA. We know I have one, I may have both but he said for now it doesn't matter. For now we just treat the EDS and try to cure the OSA through surgery if possible.

So the game plan is #1 - try the new med #2 - referal to ENT specialist to discuss surgical options to treat OSA. #3 - try to lose some weight as this will also help with the OSA, I am hoping the "loss of appetite" that is a common side effect of nuvigil will help me a little in this area, maybe if the med works I may actually feel like excersicing. I also have the option of weight loss surgery, but I would use that as a last resort. Too many compliciations.

If after this we still don't have my EDS under control the the next step is Nuerologist and different meds. So I am comfortable with this plan. Just praying this nuvigil works better. I pick up my new medicine tomorrow night and will start taking Saturday morning.

[sleepywriter]

Went to see doc today. He switched me from 200mg provogil to 250 nuvigil. We will see how this works. He says we don't need a sleep study because even if I have N, I already have a diagnosis for OSA and the medications used are the same anyway. He also said there is not much difference in the symptoms between N and OSA. We know I have one, I may have both but he said for now it doesn't matter. For now we just treat the EDS and try to cure the OSA through surgery if possible.

So the game plan is #1 - try the new med #2 - referal to ENT specialist to discuss surgical options to treat OSA. #3 - try to lose some weight as this will also help with the OSA, I am hoping the "loss of appetite" that is a common side effect of nuvigil will help me a little in this area, maybe if the med works I may actually feel like excersicing. I also have the option of weight loss surgery, but I would use that as a last resort. Too many compliciations.

If after this we still don't have my EDS under control the the next step is Nuerologist and different meds. So I am comfortable with this plan. Just praying this nuvigil works better. I pick up my new medicine tomorrow night and will start taking Saturday morning.

What are your plans for titrating up to the 250mg of Nuvigil? When I started on Nuvigil, I got really, really sick because my doctor forgot to mention that I would need to gradually work up to a full pill. I ended up calling him two days later freaking out because I was sure I was going to either have a panic attack or pass out from dizziness. Plus, I was so sick to my stomach that I lost 10 pounds in three days. I'm only 5' and 120 pounds, so that was a lot for me to drop so suddenly. I was an exhausted, dehydrated ball of anxiety and couldn't even sleep at night. When the nurse called back and explained that I should cut the pill into halves or even quarters, I was so frustrated. The damn side-effects were WORSE than the symptoms of the disorder! I ended up doing better after a few weeks of taking 1/4 in the morning and 1/4 in the afternoon, but I could never tolerate any more than that and ended up switching to Ritalin.

Moral of the story - do not take a full Nuvigil to start with!

Secondly, I am not sure I agree with his lack of willingness to do a sleep study....I would most likely see another doctor for another opinion on that one. Yes, the medications are the same EXCEPT for the fact that narcolepsy sometimes requires the use of SSRIs and sleep aids in addition to simply pumping you full of stimulants. Plus, it's nice to either get a confirmed diagnosis or to rule it out so you're not sitting there wondering.

[Mmueller]

So it's been a while since I've posted. I've had a sleep study. They say mild OSA. Talked to ENT he wants to do two seperate surgeries. One to fix deviated septum and shrink my sinuses to open up my nasal passages, which also has the added benefiit of enabling my to switch to a nasal mask for CPAP if needed. Second to remove tonsils, adnoids, part of my soft palate and uvula. I did that backwards, he wants to do the throat surgery first and then a few weeks later the nasal surgery. He cannot do them at the same time because he says my airways are already restricted and with swelling from the surgery if he did both I wouldn't be able to breath. He told me that 100% it would cure snoring. 60% it may cure OSA. He said only slight chance that my EDS cause by my apnea because my results show that apnea is very slight. And with my EDS being quite severe he said there is a high chance that something else is going on. I already have my insurance approved for both surgeries and only have to pay a few hundred dollars out of pocket. So it's pretty much a go. I understand both surgeries are quite painful but after a few weeks i will be fine. I must say im looking forward to a few weeks off work so i can sleep 24/7 without having to fight it off. So tired of fighting it. Even if it only cures the snoring at least that is something improved.

So these last two months I've been taking nuvigil. No side affects except slight dizziness especially if I don't eat after taking it. Just like provigil after about two weeks it seems to have fizzled. Like I am still wanting to sleep all the time i am fighting off multilple sleep attacks a day. I tried skipping one day. On a Saturday and was not able to function at all. So I guess it does work in that it allows me to fight off the at,tacks and make it through a day of work, (with a lunchtime nap), but then as soon as I get home I pass out on the couch for a few hours then wake up a few more hours then sleep all night and then start over. It just seems like I am always fighting and that exhausts me even more,I wish the pill would just make the attacks go away completely. So I asked my doctor for a higher dose and was disappointed to find out that I was already on the highest dose. I admit i have taken an extra provigil a few times just To be able to make it home from work. The plan was to make it through this first throat surgery and then see how it goes. I scheduled it for June 1st.

Then the last two weeks a change. Migraine started May 17th and except for a few interludes pretty much hasn't stopped. I have had an increase in dizziness, major problems concentrating and memory problems worsening. And I've been having these episodes almost daily, well basically almost every time I give into one of my daytime naps. I dont seem to get it in the morning. I wake up and I can't move. It's like I've had a stroke and it feels like someone is sitting on my chest. I slowly start to regain my motor skills. It is a very strange almost drunk feeling. Confusion, slurred speech, my tongue is numb. My face is numb. I talk jibberish. I can wiggle my fingers but not move my arm. Or I can flop my arm over but no proper control of it. Sometimes it takes my fifteen minutes or so to come out of this stupor. Tonight's episode took almost an hour to get myself together. and I kept dozing back off and dreaming and awake it was really strange and scary.

last Thursday I had to leave work my migraine was too bad. I called the ENT and put the surgery on hold, called my primary doctor and I have an appointment 31st to hopefully get a referral to a nuerologist and I want to get a cat scan. I think it would be smarter to get a full picture of what's happening before I start having major surgeries. These latest symptoms to me I feel like there is something wrong with my brain. I feel I am getting worse and worse. I left my office last Thursday half thru the day. I am going to try to go back to work tomorrow, I don't want to lose my job. It's just such a challenge staring at two giant computer screens with a migraine, and of course my migraine medicine (relpax) that is not supposed to cause drowsiness, well makes me pass out, not surprising. I have a two hour commute 1 hour each way, that has been a challenge as well.

To top it off my two year old is driving us nuts right now with a really needy phase he is going through, and my husband is totally not understanding this. He thinks I just need to walk it off when I get tired. He is getting annoyed because he expects me to come home and cook and clean and take care of the kids and instead I come home and pass out and no one is able to wake me up. My poor daughters end up cooking and taking care of the baby. So this is causing a lot of stress at home, with everyone looking at me like I'm lazy. It is beyond frustrating. I wish I could somehow show them how I feel. I hate getting that look, like the "I can't believe you are going to take another nap" look.