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Extreme fatigue -SLEEP ATTACKS
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hop63 posted:
Hi everyone! About 2 years ago I started a discussion about fatigue. I have what I call "sleep attacks". Everything is ok -considering pain & everything else that comes with fibro & suddenly I cannot keep my eyes open. Take 200 mg of provigil every morning. I must work full-time. I have no choice. Some days I cannot make it through the day. I keep my consumption of carbs low during the day because I have seen the effect large amounts of carbs have on my body. I get B12 shots monthly, take sublingual B12 when I feel drowsy. I am frightened about how quickly I can become overwhelmed by sleepiness. Hoping someone has some suggestions. The provigil was working wonders but I knew at some point the sleepiness would return. My Dr will not increase the dose. I have on a few occasions taken an extra 1/2 dose on my own and have had severe stomach cramps and diarrhea as a result. Please share any ideas, treatments or supplements that have been helpful to you. I am afraid I will get into an accident one day or get fired for "falling asleep on the job". My life is non-existent now. I take provigil so I can work and I come home and pass out from exhaustion. No social life or time for friends which is sad. The worst part is never knowing when one of these "sleep attacks" will come on. I have been tested for narcolepsy and sleep apnea and results are negative. Any feedback will be appreciated.
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slovene54 responded:
I have that issue but it is sleep apnea. Sounds just like what you are going through. I will be driving and all of a sudden my eyes are closed and I can't stop it. Really Scary! I hope you get good advice or get more testing to find out why.
 
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foreversore responded:
Oh, where to begin! I have had sleep issues for years. I have been an insomniac since my teens and I have also experienced what you call sleep attacks. I will have days where my pain is so bad I will sleep 2-4 hours and be up for the day sometimes for days on end and then I will crash on like day 3 or 4 and sleep for 18 hours (I still feel awful when I get up). Then there are days where I sleep between 6-10 hours at night and once or twice during my day my body just shuts down. I HAVE to take a nap no ifs, ands or buts about it. These naps usually last from 2-4 hours and of course I feel worse when I get up.

I have had a sleep study and I use a CPAP machine, I had my Vit D level tested and it was low but with continual supplementation it is in normal range. Same with B 12 I get a shot once a month and take a 2000 mcg slow release tab every day but the fatigue is still ever present. I have a multinodular goiter but all thyroid tests come back normal. I am at my wits end and am about to ask for a sleep aid. I have taken Benadryl every day of my life so that doesn't do it and valerian root and melationin (I took this for several months years ago) also worked at first but stopped after a while.
 
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hop63 replied to foreversore's response:
Foreversore, thanks for your reply. My Vitamin D levels are very low. Have been on my 3rd 8 week regimen of 50,000 units once weekly. My thyroid tests all come back normal. I take ambien CR 12.5 mg ( generic) before bed. Some nights I sleep well other nights I fall asleep, wake up and cannot get back to sleep. Pain levels as well as stress seem to be linked to these "sleep attacks". If you have any other suggestions, please send a reply to this post. Thanks. Pleasant Dreams.
 
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hop63 replied to slovene54's response:
Slovene 54, thanks for your reply. Tests did not indicate sleep apnea. I know what it is medically but could you describe the symptoms to me? I don't snore or have any breathing issues. I also do not have narcolepsy even though the symptoms sound like that is a possibility. If you have any other suggestions or could recommend a specialist other than neurologist, pain specialist, rheumatologist, MD/osteopath ( which currently make up my team of doctors) please do so in a reply. It is very scary as it happens without warning & my body just shuts down. Thank you, lots of luck, may you be awake when you need and sleep well when you want to.
 
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foreversore replied to hop63's response:
I try a lot of things to help me sleep when stress and pain are the culprits keeping me up. I have a massage shower head so I take a hot shower and use the massage feature. I have the most pain in my back, neck and rt shoulder so I use it on these areas. Heating pads can also sometimes help. As for the stress try some type of meditaton. What works for me is to close my eyes in a dark room, and listen to soft soothing music with head phones (to block out the world and concentrate on me). I may not always sleep but I am at least resting and letting my mind drift. I still try valerian root although it doesn't always work it does seem to help relax me. There is a tea made by Tazo it's called rest and it's in a pink box, it has valerian root in it as well as a few other things and a warm drink is soothing. There is also a supplement called Myocalm P.M. made by Metagenics. It is mostly calcium, magnesium and valerian root and I will take this from time to time (Ask your dr. or pharmacist before adding supplements including the tea there is even a warning on the box to do so). I hope this helps you to at least relax and rest if not get some sleep.
 
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hop63 responded:
Hi. Was wondering if anyone was taking Provigil to help with daytime sleepiness and the dosage. I have been taking 200 mg daily for about 3 years. I think I have developed a tolerance and this dosage is no longer effective. I take the 200 mg in the AM. Different sources have varying amounts as the recommended dosage. I have seen 200 mg. as a maximum and other sources say up to 400 mg can be taken daily. I would appreciate if people would share the dose and how it is divided during the day. My Dr is very conservative and I expect that she will refuse to increase my dosage to 300 mg daily but I am going to ask at my next appointment. The increased dose is essential for my safety during the day. I would be willing to take the increased amount on work days only. Thank you for any input/advice on this matter.


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