Modafinil, Stimulants and sleeping pill help

[mboy12]

After years of trying to tolerate the cpap and being tired 24/7 I’m attempting new strategies. The main problem is, it takes me a long long time to go to bed. I will get tired, sometimes can’t even keep my eyes open and yet my body won’t feel ready for bed. I’ve tried many of the sleep hygiene tricks with little success. Mask or no mask sleeping has become incredibly difficult and frustrating. Together with my doctor, we came up with 2 routes to try and tackle these issues. Either he gives me a sleeping pill in an attempt to knock me out with the cpap on or to give me a stimulant to help me focus during the day. I’ve always been hesitant to try sleeping pills due to all the horror stories so we started with trying stimulants. I was given 10mg of Ritalin to help keep me awake and focused during the day and get out of the almost constant sense of fogginess. The Ritalin worked very well but only for short intervals. When it wore off I crashed very intensely, causing me to go from productive to completely useless within just a few hours. After telling this to my doctor he figured maybe I’d be better off using a more long lasting but stable stimulant. He gave me 200mg modafinil to try, specifically because of its association with sleep apnea. Unfortunately the first time I took it I had a horrible experience. Headache, nausea, chest pain, rapid heart rate, confusion/ disorientation. In the end it did way more harm than good and kept me in bed most of the day. I cut back to 100mg and didn’t have as many terrible symptoms BUT it didn’t help. I still felt tired, drowsy and confused all day. I’ve tried it a few more times since (once more at 200mg and 4 doses at 100) but still don’t feel any help from it. I’ve been hesitant to take it on days where I need things done due to the possibilities of side effects so I don’t think I’ve ever used it in consecutive days. My question is does anyone have experience with this drug? Did they have same problem? Have I used it enough to feel its positive effects? Can anyone recommend substitutes? Should I stop it? My doctor has left it up to me. He says if I want to keep trying then fine, it will usually take 2 weeks to see a difference. If not he’d give me another type of long lasting stimulant (Adderall, Methylphenidate). Does anyone have anyone of experience using all these drugs and have an opinion which works best?

Because of the inconstant results from stimulants I’ve been given sleeping pills to try now too. I was given 7.5mg of Imovane (Zopiclone), which is apparently often used in Canada but is very similar to the American drug Lunesta (Eszopiclone). This drug did help me sleep with the mask BUT after 3 hours maximum id wake up and that would be it for the night. The next day I’d feel groggy and tired. I know sleeping pills with sleep apnea can be dangerous if not using the cpap because of the further relaxing of the airway. After trying this a few time he gave me 25-50mg of Amitriptyline. First night I tired 25mg and felt nothing. Next night tried 50 and when I woke up the next day it was horrible. It was the worst fog I’ve felt in my life. Felt totally brain dead and was unable to do anything. Since then I’ve been scared to try it again. Does anyone have experience with these drugs? Could you recommend any other? I’ve tried to stay away from the ones that are very addictive.

[49er]

Hi Mboy,

I am really concerned you are on a med merry go around that isn't going to stop any time soon. When you have tried to tolerate it, what do you mean?

Has any attempt been made to try a bipap machine since many people who can't tolerate a cap do better with it?

49er

After years of trying to tolerate the cpap and being tired 24/7 I’m attempting new strategies. The main problem is, it takes me a long long time to go to bed. I will get tired, sometimes can’t even keep my eyes open and yet my body won’t feel ready for bed. I’ve tried many of the sleep hygiene tricks with little success. Mask or no mask sleeping has become incredibly difficult and frustrating. Together with my doctor, we came up with 2 routes to try and tackle these issues. Either he gives me a sleeping pill in an attempt to knock me out with the cpap on or to give me a stimulant to help me focus during the day. I’ve always been hesitant to try sleeping pills due to all the horror stories so we started with trying stimulants. I was given 10mg of Ritalin to help keep me awake and focused during the day and get out of the almost constant sense of fogginess. The Ritalin worked very well but only for short intervals. When it wore off I crashed very intensely, causing me to go from productive to completely useless within just a few hours. After telling this to my doctor he figured maybe I’d be better off using a more long lasting but stable stimulant. He gave me 200mg modafinil to try, specifically because of its association with sleep apnea. Unfortunately the first time I took it I had a horrible experience. Headache, nausea, chest pain, rapid heart rate, confusion/ disorientation. In the end it did way more harm than good and kept me in bed most of the day. I cut back to 100mg and didn’t have as many terrible symptoms BUT it didn’t help. I still felt tired, drowsy and confused all day. I’ve tried it a few more times since (once more at 200mg and 4 doses at 100) but still don’t feel any help from it. I’ve been hesitant to take it on days where I need things done due to the possibilities of side effects so I don’t think I’ve ever used it in consecutive days. My question is does anyone have experience with this drug? Did they have same problem? Have I used it enough to feel its positive effects? Can anyone recommend substitutes? Should I stop it? My doctor has left it up to me. He says if I want to keep trying then fine, it will usually take 2 weeks to see a difference. If not he’d give me another type of long lasting stimulant (Adderall, Methylphenidate). Does anyone have anyone of experience using all these drugs and have an opinion which works best?

Because of the inconstant results from stimulants I’ve been given sleeping pills to try now too. I was given 7.5mg of Imovane (Zopiclone), which is apparently often used in Canada but is very similar to the American drug Lunesta (Eszopiclone). This drug did help me sleep with the mask BUT after 3 hours maximum id wake up and that would be it for the night. The next day I’d feel groggy and tired. I know sleeping pills with sleep apnea can be dangerous if not using the cpap because of the further relaxing of the airway. After trying this a few time he gave me 25-50mg of Amitriptyline. First night I tired 25mg and felt nothing. Next night tried 50 and when I woke up the next day it was horrible. It was the worst fog I’ve felt in my life. Felt totally brain dead and was unable to do anything. Since then I’ve been scared to try it again. Does anyone have experience with these drugs? Could you recommend any other? I’ve tried to stay away from the ones that are very addictive.

[mboy12]

Maybe I need to give a little back story. I was diagnosed with sleep apnea in 2010. I was prescribed a cpap which is obviously the standard next step. For the next 2 years I not once slept with the sleep mask for more than an hour or 2 and even that was rare. I started with a full face; this couldn’t work because the bridge of my nose is extremely sensitive. Simply putting the slightest pressure can cause a headache. Next I tried nasal pillows. This too didn’t work specifically because of jaw problems I have (which may or may not be related to sleep apnea) that cause it to be very difficult to keep my jaw closed. Lastly I tried a hybrid mask, which in theory would allow me to keep my mouth open while avoid bothering my sensitive nose. Overall the mask was very hard to properly seal but was not terrible. Like I mentioned before, for whatever reason I have a very hard time getting to sleep even without the mask. I’d put it on and I would either not be totally ready for sleep, it would leak and make me frustrated or it would generally just be uncomfortable. Next I attempted one of those special cpap pillows with cut-out to help make the mask comfortable. The pillow was not useless but again the sleep problems persisted. During all of this I used 50mg of benydrel daily to try and help me get to sleep (which was told to my sleep doctor and Ok’ed). This really never helped but at least made it slightly better to sleep. While I know a sedative is a very bad idea for sleep apnea, the mere fact of being awake every night was making me crazy. My choices were barley sleep and lose my mind being up all night, or sedate myself and at least pass out but feel just as unrested and groggy the next day. Worst of all this has all taken place during my university studies. Needless to say it has been very very tough to even keep up with a minimal course load. Following advice from forums like this, I attempted to adapt to better sleep hygiene habits. No using bed except for sleep, not putting mask on until tired, getting out of bed if frustrated, etc...In the end these didn’t help much for whatever reason. After over 2 years of this my sleep doctor recommended maybe it was time to cut some tissue out of my throat to help at least a little. I’m an odd case since I’m skinny and have a thin neck, but a very narrow jaw which was strongly thought to be a cause to my sleep apnea. I saw several orthodontic experts and dental appliances were ruled out. Braces to correct the very narrow shape of my mouth and in theory allow more room for my tongue were discussed, and is still ongoing. Other unrelated dental issues (impacted teeth) have caused this to be delayed many times and even once the braces are put on id be looking ad 4 years until a difference could POSSIBLY be seen in the sleep apnea. Anyways like I said before, the doctor had recommended cutting out some tissue in the mean time to try and improve my sleep. About one year I had my tonsils removed and base of my tongue shrunk. It was never promised this would solve all my problems, and unfortunately in the end it had pretty much zero effect on the sleep apnea. Also important to note, during all this time I STILL have tried the cpap almost every single night. Now we get to the last 3 months. I’m fed up, the situation feels hopeless, I’m struggling in school, my insomnia is driving me nuts, and the dental solution still hasn’t begun. In the past my sleep doctor DID give me sleeping pills just for a short term to maybe kick start my body into tolerating the mask, but no success. I recently tried the same sleeping pill again this time given by my GP in hope of a better result but still nothing. My GP while not a specialist has followed the situation very closely and is fully aware of the risks of sleep apnea and medications. Finally we get to the stimulants. I have for sometime experienced add like symptoms. My GP tested me and confirmed the diagnosis. BUT these symptoms may or may not be directly related to sleep apnea. The restlessness, lack of concentration, etc...It does seem to run in my family so it can be unrelated. So while struggling in school and with no end in sight to my sleep issues I began to try a small dose of Ritalin like I said in the previous post. This helped but caused huge crashes. To find a long lasting alternative we picked modafinil SPECIFICALLY because of its link to sleep apnea treatment. Unfortunately this caused e to feel really ill which is why I originally started this post. I know this isn’t the best course of action but with no end in sight and no relief I’m desperate. I need to be able to function.

[49er]

Thanks for responding Mboy.

When you tried a full face mask, was the bridge problem with your nose the only issue? If yes, http://www.padacheek.com/, sells some products that could be very helpful to you.

Regarding your issues with nasal pillow masks, are you sure you're difficulty in keeping your jaw closed isn't due to nasal congestion? Did you have an ENT evaluation of that?

I am sensing that the hybrid mask came very close to being a good mask for you. Concerning the problems in getting it to seal, again, I think padacheek might be able to help you with a mask liner that could assist with the seal.

What saddens me M-Boy is it sounds like your problems with the mask might have been easily solvable and now it seems you are stuck in sleep med h-ll after pursuing surgical options that didn't work.

What about trying those padacheek products and see if that might make it easier to use the mask and thus be able to tolerate cpap usage? If you're successful, this might give you alot better concentration and alot less side effects. Of course, everyone is different but because what you are doing now isn't working, what do you have to lose?

Again, since you seem to have trouble tolerating a regular cpap machine, I would look into a bipap machine which is more comfortable for many people in your situation.

I do understand the desperate M-Boy but the issue is your long term functioning and you working to achieve that. You clearly see that meds aren't helping so in my opinion what would help is to start a diary and write some thoughts as to what might help you succeed in getting restful sleep.

I have started doing this and it has been very helpful. I should have done it months ago.

Anyway, I hope this is helpful.

49er




Maybe I need to give a little back story. I was diagnosed with sleep apnea in 2010. I was prescribed a cpap which is obviously the standard next step. For the next 2 years I not once slept with the sleep mask for more than an hour or 2 and even that was rare. I started with a full face; this couldn’t work because the bridge of my nose is extremely sensitive. Simply putting the slightest pressure can cause a headache. Next I tried nasal pillows. This too didn’t work specifically because of jaw problems I have (which may or may not be related to sleep apnea) that cause it to be very difficult to keep my jaw closed. Lastly I tried a hybrid mask, which in theory would allow me to keep my mouth open while avoid bothering my sensitive nose. Overall the mask was very hard to properly seal but was not terrible. Like I mentioned before, for whatever reason I have a very hard time getting to sleep even without the mask. I’d put it on and I would either not be totally ready for sleep, it would leak and make me frustrated or it would generally just be uncomfortable. Next I attempted one of those special cpap pillows with cut-out to help make the mask comfortable. The pillow was not useless but again the sleep problems persisted. During all of this I used 50mg of benydrel daily to try and help me get to sleep (which was told to my sleep doctor and Ok’ed). This really never helped but at least made it slightly better to sleep. While I know a sedative is a very bad idea for sleep apnea, the mere fact of being awake every night was making me crazy. My choices were barley sleep and lose my mind being up all night, or sedate myself and at least pass out but feel just as unrested and groggy the next day. Worst of all this has all taken place during my university studies. Needless to say it has been very very tough to even keep up with a minimal course load. Following advice from forums like this, I attempted to adapt to better sleep hygiene habits. No using bed except for sleep, not putting mask on until tired, getting out of bed if frustrated, etc...In the end these didn’t help much for whatever reason. After over 2 years of this my sleep doctor recommended maybe it was time to cut some tissue out of my throat to help at least a little. I’m an odd case since I’m skinny and have a thin neck, but a very narrow jaw which was strongly thought to be a cause to my sleep apnea. I saw several orthodontic experts and dental appliances were ruled out. Braces to correct the very narrow shape of my mouth and in theory allow more room for my tongue were discussed, and is still ongoing. Other unrelated dental issues (impacted teeth) have caused this to be delayed many times and even once the braces are put on id be looking ad 4 years until a difference could POSSIBLY be seen in the sleep apnea. Anyways like I said before, the doctor had recommended cutting out some tissue in the mean time to try and improve my sleep. About one year I had my tonsils removed and base of my tongue shrunk. It was never promised this would solve all my problems, and unfortunately in the end it had pretty much zero effect on the sleep apnea. Also important to note, during all this time I STILL have tried the cpap almost every single night. Now we get to the last 3 months. I’m fed up, the situation feels hopeless, I’m struggling in school, my insomnia is driving me nuts, and the dental solution still hasn’t begun. In the past my sleep doctor DID give me sleeping pills just for a short term to maybe kick start my body into tolerating the mask, but no success. I recently tried the same sleeping pill again this time given by my GP in hope of a better result but still nothing. My GP while not a specialist has followed the situation very closely and is fully aware of the risks of sleep apnea and medications. Finally we get to the stimulants. I have for sometime experienced add like symptoms. My GP tested me and confirmed the diagnosis. BUT these symptoms may or may not be directly related to sleep apnea. The restlessness, lack of concentration, etc...It does seem to run in my family so it can be unrelated. So while struggling in school and with no end in sight to my sleep issues I began to try a small dose of Ritalin like I said in the previous post. This helped but caused huge crashes. To find a long lasting alternative we picked modafinil SPECIFICALLY because of its link to sleep apnea treatment. Unfortunately this caused e to feel really ill which is why I originally started this post. I know this isn’t the best course of action but with no end in sight and no relief I’m desperate. I need to be able to function.[/quote]

[Mary Z]

Mboy, what a mess. I had excessive daytime sleepiness treated with Provigil and Nuvigil which were somewhat helpful, I still got sleepy early in the evening and sometimes needed an afternoon nap. The drugs were not at all successful if taken later in the day. I have good luck with OTC herbal remedies and another person on the forum reported good luck with 1,500 mg tryptophan. I think at this point it's time to find a doctor, LCSW, or counselor who specializes in treating people with insomnia. You'll probably have to call around. There is also the method of moving your sleep time around the clock. Check this link on Wickipedia http://en.wikipedia.org/wiki/Sleep_phase_chronotherapy. Good results have been reported with this method. Good luck, I know this is a miserable situation. Ritalin comes in a sustained release formula now and you might find that more helpful. Keep us posted.
Mary

[Pugsy]

25-50mg of Amitriptyline. First night I tired 25mg and felt nothing. Next night tried 50 and when I woke up the next day it was horrible. It was the worst fog I’ve felt in my life. Felt totally brain dead and was unable to do anything. Since then I’ve been scared to try it again. Does anyone have experience with these drugs?

Don't know if my experience will help you but I have used a low dose of Amitryptiline for 2 years now.
Started with 10 mg though and ended up with 20 mg. If I don't take it early enough in the evening I am a zombie the next day so I totally understand how you felt with the 50 mg dose. It does help me have fewer awakenings during the night but my awakenings are secondary to some old arthritic joints that want to wake me up with pain when I turn over in bed. Without it...20 to 30 awakenings and with it maybe 3 or 4.

What time did you take the 50 mg dose? Did you at least get some sleep at that dose?
25 mg didn't do the trick? What time did you take it?
If you don't use the machine.....how many times do you wake up during the night?