Do you have multiple sleep disorders?

By Tracy Latest Activity September 18, 2009 at 10:31 am Views 19,398 Replies 129 Likes 18

Tracy

I am always amazed at how many people have multiple sleep disorders.

Me - I call my severe mixed sleep apnea my primary sleep disorder, but I also have Restless Legs Syndrome and frequent bouts of Sleep Onset Insomnia.

I am curious, how many of you also have multiple sleep disorders?

Lets use this thread to discuss!

Which of your multiple sleep disorders was diagnosed first?

Have secondary sleep disorders improved when primary was successfully treated?

Lookiing forward to hearing from you!

Good Sleep
Tracy

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Replies (129 replies)

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  • [deleted]
    [deleted] June 8, 2013 at 3:04 am   

    Alexis. I can see what your saying… Herbert`s rep0rt is astonishing, last week I bought Renault 4 after earning $6120 this-past/5 weeks and-also, $10 thousand lass month. without a doubt it is the best job Ive ever had. I began this nine months/ago and right away was bringing home at least $73.. per hour. I use this website, Bow6.com

  • sleepie girl
    sleepie girl April 14, 2013 at 2:36 am   

    I also am in a lot of pain from the same thing you have in your back, and have a terrible time with my hips from bursitis and tears on my left side. I get rid of my sleep apnea but its coming back after a massive amount of weight gain because it hurts so bad to move, sleep, and lay on my back. Getting shots in my bursa soon. I can't wait to sleep better again. I feel for you. God bless.

  • sleepie girl
    sleepie girl April 14, 2013 at 2:26 am   

    Sleep walking on occasion, sleep talking every night, Narcolepsy, mild cataplexy, restless legs without medication. Acting out dreams. You name it!

  • iValueHealth
    iValueHealth December 27, 2012 at 5:18 am   

    Many people are confronted with sleep disorders and sharing information about your problems can help others that have the same problems as you do. iValueHealth.NET is a unique initiative where all the actors from the healthcare ecosystem are brought together in one place and can contribute to increase health awareness by sharing local and global information.

  • abowerstafford
    abowerstafford May 23, 2012 at 12:29 am   

    I was diagnosed with 3 separate sleep disorders about 3-4 years ago — OSA, circadian rhythm imbalance and abnormal sleep-wake cycles. Left to my own schedule I do best with 3hrs sleep, then 3hrs wakefulness. I also seem to have a body that would prefer days to be about 27 hours long. I have had the last 2 for my entire life — I can remember being on a longer day rhythm since before I even went to kindergarten. I am also a nightowl. I sometimes joke that I must be allergic to sunlight, because I am sleepy during daytime hours, and raring to go in the evening and far into the night. I worked night shift straight for over 5 years because it has consistently been my best time of day.

    Unfortunately, with age I have found I can no longer do floor nursing (I have been an RN for 24 years), and 9 years ago took a desk job in clinical research. Unfortunately, I lost that job a year ago. My husband lost his job as well 7 months ago. The ever-present stress of searching for but not finding work has really wreaked havoc with my sleep. It seems I can sleep any time but when I'm supposed to! Here is what helps me though —

    1. Trying to keep the faith and maintain a positive attitude. As soon as I allow myself to feel sorry for myself, My emotions are all over the map and I can simply shut down to avoid it all. I have a strong family history of depression, and have been on meds both for treatment and for prevention for 18-20 years. The regimen I'm currently on — Zoloft and bupropion — are keeping me above water, but staying positive has been key.

    2. Thank God for melatonin. If I take just 0.5mg (Trader Joe's has a wonderful chewable form at this low dose), I can usually fall asleep. Without it, I can be up until 5-6am. I'm taking a formulation called 'Super Snooze' from Sundown vitamins currently, that also has valerien and other herbs in it, and it's helpful as well, although I think the TJ's brand is the best.

    3. Don't fall asleep without my CPAP! I have been fortunate — I adjusted to nasal pillows right away, and with the Swift XL for Women headgear I can also sleep on my side. I have discovered, however, that sleeping on my back also improves the chronic low back pain I frequently suffer from.

    I'm still tempted to stay up to the wee hours all the time, and it's hard, especially since I don't HAVE to get up to go to work in the morning. It does take discipline.

    I notice that many on this list have RLS and/or fibromyalgia. I'm thankful I don't have RLS, but I probably do have fibro — just hasn't been diagnosed yet. If you have fibromyalgia, either diagnosed or suspected, see a rheumatologist. They are best equipped to properly treat you. Search for a rheumatologist who does recognize fibromyalgia as a real disorder — many docs, even rheumies, do not acknowledge its reality.

  • crusan
    crusan April 19, 2013 at 12:39 am   

    I have OSA - diagnosed 8 years ago. I tried Cpap for 6 months but couldn't handle it as I couldn't find a mask to fit and I lost so much sleep because of that. My apnea is when I go into REM which means I don't since I'm not doing Cpap. I also have known for years that I have a longer cycle - like yours, maybe at least 27 hours. I am wondering how much the Cpap machines have changed in 8 years. I am up in middle of the night for an hour or two about 3-4 nights out of 7. I also have back pain, but don't think that is what is keeping me up. Sometimes for no apparent reason, I feel sort of wired and not the least bit sleepy. Tired, maybe, but not sleepy.

  • jdnight01
    jdnight01 February 17, 2012 at 5:29 pm   

    imy name is edward and ithink i have a sleeping disorder but dont know where to get help for it i cant sleep at night and sometimes i cant sleep during the day if i do its for a short period of time during the day can anybody tell me where i can go with medacaide to get tested to see if i have this sleep disorder thank you edward edwardditmar@msn.comEmail Small

  • garmtn338
    garmtn338 July 28, 2011 at 12:57 pm   

    Hi Tracy, Have had sleep apnea about 10 years, and concerned with Diabetes. Haven't been able to use CPAP cause starting pressure too high. Will contact medical provider again. Way to tired now, not using machine in months

  • Tracy
    Tracy July 28, 2011 at 3:30 pm   

    garmtn - ya really need to get back on cpap after resolving your issues with it. there is a feature called RAMP which starts the machine at a lower pressure, making it more comfortable, then it slowly RAMPS UP over a preset period of time. Hopefully that will help. There are other options too that your provider should be able to walk you through - BUT please do get back on cpap!
    thinking positive for you -
    tracy

  • Bejust
    Bejust April 10, 2012 at 1:08 pm   

    I have very severe periodic movements of sleep, a little apnea and breathing disruption, and I am told idiopathic hypersomnia. The sleep drugs don't work - make me very depressed. BiPap didn't help, made me worse and now hurts my face. I no longer have a doctor. They all gave up on me. I am getting very down.

    Bej

  • kukatie
    kukatie May 31, 2011 at 8:43 pm   

    I have sleep apnea, restless legs syndrome and sleepwalking. The one that bothers me the most is the RLS, finding the right doc and the right meds has taken time. I think I have a good combo now.

  • Tracy
    Tracy June 17, 2011 at 8:37 am   

    what is your good "combo"?
    curious minds want to know :)
    tracy

  • kukatie
    kukatie June 17, 2011 at 8:44 am   

    Mirapex and Neurontin

  • jcschrum
    jcschrum May 31, 2011 at 7:40 pm   

    I have sleep apnea, restless leg syndrome, periodic leg movements and insomnia. I was diagnosed with sleep apnea and leg movements at the time I had the sleep study. I've been having insomnia due to arthritis pain, fibromyalgia pain, and dryness form Sjogren's Syndrome which also causes joint and muscle pain. I began having RLS I believe after the sleep study at some point. My sleep apnea improved with the C-PAP machine and hopefully the leg movements too. I take meds for the RLS which helps but makes me sleepy during the day. I'm going for another sleep study soon because I'm waking up with headaches again and think the apnea got worse. Also making several trips to the bathroom during the night. We'll see what happens.

  • Jenny - 1185
    Jenny - 1185 June 3, 2011 at 9:31 am   
    Edited June 3, 2011 at 9:33 am by Jenny - 1185

    Which meds do you take? I get cramps in my legs and I take Zanaflex for that problem.I have full face mask that wonderful problem with snoring was a joke until I woke myself up and looked around the room and my family and their friends were looking at me strangely.

  • lighteyes40
    lighteyes40 May 30, 2011 at 1:13 pm   

    Hi this is stacy i have joined some of the other connects as well as this one hoping i can get help somewhere.Adding to mine i also have fibro,restless leg,neropathy from my hips down to my feet,detearation of bottom of my spine that keeps me in constant pain and a disc that is detearating and a bulging disc.i go days at a time without sleeping because of pain but i am on lots of meds.i am trying to figure out different things i can do to deal with all this because as u might guess i also suffer from severe depression.i have been fighting thing sence 2002 now and have been to many doctors tried vitamins and went to chiropators.i'm still searching.cantgive up thats the main thing.but its hard very hard my body screams for help but i just dont know what to do anymore????

  • lighteyes40
    lighteyes40 May 30, 2011 at 1:09 pm   

    Adding to mine i also have fibro,restless leg,neropathy from my hips down to my feet,detearation of bottom of my spine that keeps me in constant pain and a disc that is detearating and a bulging disc.i go days at a time without sleeping because of pain but i am on lots of meds.i am trying to figure out different things i can do to deal with all this because as u might guess i also suffer from severe depression.i have been fighting thing sence 2002 now and have been to many doctors tried vitamins and went to chiropators.i'm still searching.cantgive up thats the main thing.but its hard very hard my body screams for help but i just dont know what to do anymore????

  • cavie2
    cavie2 May 17, 2011 at 7:48 pm   

    I don't have multiple sleep disorders, I only have insomnia which started in March 1982. I was divorced and bringing up my two sons on my own and was burgled, according to the police there were 3 sets of fingerprints in the house, where they were situated meant they were around 6 feet in height. I slept fully clothed on top of my bed for 6 months after that and have suffered from insomnia ever since and over the years it has gotten worse.

  • Tracy
    Tracy May 18, 2011 at 4:08 pm   

    Often, insomnia is brought on by a traumatic event, I am sorry you had such an experience. I am providing a link about CBT - Cognitive Behavioral Therapy for sleep. It is best provided by a doctor who is specially trained in sleep medicine and is a very successful form of treatment. You may have already had some form of therapy with a psychologist over the years, but CBT for Insomnia focusses strategically on the sleep issues.
    You might want to look in to it!
    Best wishes to you and welcome to sleep connect!
    tracy

  • cavie2
    cavie2 May 18, 2011 at 4:58 pm   

    never had any treatment for it nor medication of any kind I don't think the Doctors practice I am with takes it seriously but medication is something I would have refused anyway but CBT sounds interesting. I will mention it to my Doctor. lol

  • Tracy
    Tracy May 30, 2011 at 1:27 pm   

    Glad you are considering CBT for insomnia - just make sure if you decide to take the plunge, you use a psychologist who is trained in sleep. It really helped me - it made me realize that I had helped perpetuate my insomnia and actually made it worse by developing bad bad sleep habits…but it's all that it was - so just had to break the habits and establish new ones…not that that was easy LOL
    The other really cool thing the doctor taught me was visualization techniques…it can sound wacky - but bear with me cause it really changed my life. I created a safe peaceful place in my mind - of MY choosing ( it took me months to settle in on the perfect setting LOL ) for me its a field of fragrant wildflowers, blue sky, soft warm breeze and a little bubbling brook. I lay in the grass at the waters edge and nap - no bugs, no snakes cause I created the place…but there are dragonflies an butterflies which I love. It may sound silly, but when I was a kid, I used to lay in the grass on a warm summers day and sometimes fall asleep. It was such a peacful and wonderful childhood memory and my safe place.

    So now - whenever I cannot fall asleep, I close my eyes and I GO THERE - and in an instant, I am feeling relaxed and safe and yes, I can fall asleep. It took some time to develop my "perfect place" and then took time to instantly "go there" but it did happen. I have talked to a lot of patients who have perfected this technique and found it useful not only for sleep - but also during the day when one feels stressed or anxious about things - and so you just relax and close your eyes for a time, and go to your place which is a form of meditation and relaxation.

    If you meet with a therapis - ask about visualization techniques! I highly recommend it!

    tray

  • cavie2
    cavie2 May 30, 2011 at 7:22 pm   

    Thanks Tracy. I developed insomnia in march 1982 when I was burgled slept fully clothed for 6 months on top of my bed. Around 3 years ago I bought a relaxation dvd and you choose your own safe place a quiet room, on a far away beach with palm trees and the sound of the sea etc, whether it is a female or male voice talking, the level of stress goes from 1-5 you choose what you think you are at and I often play that in the evening before going to bed and it works but I don't always have time to do this, and I do practice visualisation techniques as well I was always bumping my gums to work collegues about this and they used to look at me as if I had lost the plot (that happened years ago) but not going to admit that and if you tell anyone I will have to kill you.

  • jbHamm
    jbHamm April 21, 2011 at 10:37 am   

    Yes, I do have multiple sleep disorders. I started with insomnia. After struggling with fatigue and being "tired" all the time even after a'good night's rest, I had a sleep study done. It was found I had sleep apnea and was started on CPAP. I still had insomna. After many hypnotics being tried, I quit all of the Rx medications for sleep. I didn't th like the "morning after" effects from them or the side effects.. I now use Melatonin (which is a hormone the body naturally produces) 3 mg about 30 min. before bed. Some nights I also have a cup of 'Sleepytime" tea. This has really helped the insomnia for me! Now, I feel more rested and able to do more during the day! Can't beat a good night's sleep! !

  • Tracy
    Tracy April 21, 2011 at 11:01 am   

    did you find your insomnia resolved quicker after you cpap use was successful? I did - I still have insomnia bouts, but I know they are generated by my own stressful life circumstances, or when I fall off the good sleep hygiene wagon - it messes with my body clock, throws me off schedule. So I then have to go through my routine of relaxation and keeping to a good sleep schedule. I prefer too, not to medicate to initiate sleep - don't like the morning groggies!

    tracy

  • Phonse65
    Phonse65 March 20, 2011 at 3:56 pm   

    Tracy, I've yet to find a sleep disorder I DON'T have! OH, just for uninterupted sleep! My biggest equip. problem is that I use a full mask for my sleep disorders and my Big "E", and I think I have permenent "hose nose" (sort of) the nose piece on my masks are all so tight the I awake with a "nose ache" and about a 10" trench (red) accress the bridge of my nose. I am beginning to scare small children!

  • cavie2
    cavie2 May 30, 2011 at 7:24 pm   

    AND ME!!!!!!!

  • Tracy
    Tracy April 21, 2011 at 11:03 am   

    have you figured out a better way to repair the nose trench? do you think you are overtightening the straps and maybe should consider a different mask style? or maybe using the mask too long past its life - thus having to pull and pull the straps tighter to avoid leaks?

    whatcha think?
    tracy

  • cammei
    cammei February 20, 2011 at 1:14 am   

    I guess I'm a mixed bag. I'm 46 now, have snored since I was a teenager. Worked shift work for years and never had any sleep problems. My first M-F 9-5 job I started falling asleep at my desk and in 2001 was diagnosed with Narcolepsy and sleep paralysis. Some time after that started suffering with RLS. Then in 2008 was diagnosed with severe Obstructive Sleep apnea. Narcolepsy is treated successfully with medication, but improved even more when I got on a cpap machine. I am also medicated for anxiety disorder which helps with RLS. There is a lot going on but vigilance in treated all symptoms seems to work the best. I also have bipolar when throws a monkey wrench into everything when I'm manic. In those phases I sometimes stay up for days at a time which obviously defeats any of the other attempts at treatment. It takes several days to get back to normal. I've asked my doctor about people having these combined problems and if there was any specialized treatment. He told me to "Google" it. I'm am in the process of looking for a new doctor. Problem is I have no insurance. I also want a more comfortable mask. I use the ResMed Mirage Quattro™ Full Face Mask size Small. But it jams up into my eyes and the xtra small is too small. I am a mouth breather so I need a full face mask.

    Any suggestions?

  • Tracy
    Tracy February 20, 2011 at 2:01 pm   

    Cammei - I use a full face mask on the nights when I have a cold and stuffy nose- I normally use nasal pillows.
    Since I am a patient who likes "less" on my face - my personal fav full face mask is the ResMed Mirage Liberty - nothing lays above the nostrils and NO forehead brace.

    I also just tried the NEW Quattro FX and was VERY surprised how much I liked it! The forehead pad and dial are not on this mask - I normally wear a size small mask, but had to size UP for best fit with the Quattro FX - so I am thinking you would be able to better fit in the size small Quattro FX - you should visit a local cpap supplier and take a look at the Liberty and the new Quattro FX and see what you think!

    Let us know!
    tracy

  • Phonse65
    Phonse65 March 20, 2011 at 3:57 pm   

    Oh I have to make a note of this one, thanks!

  • Tracy
    Tracy March 20, 2011 at 4:22 pm   

    http://www.sleepconnect.com/sleep-disorder-ar...

    Its the pitts trying to find the best mask for our individual faces - been there done that, BUT sometimes we have the best mask and its just that we are adjusting it improperly…take a look at my article and check out the tips.
    Many of us forget that fit should take place in the sleeping position, not while sitting or standing - THINK GRAVITY. No mask should ever cause sores or pressure point soreness - nor should strap marks be imbedding on our cheeks past a hot shower in the morning!

    tracy

  • cammei
    cammei February 22, 2011 at 6:44 am   
    Edited February 22, 2011 at 6:46 am by cammei

    What do you think about the FullLife Full Face CPAP Mask? It is cheaper and the replacement cushion is more economical too. Since I don't have insurance I have to comparison shop. I've never used nasal pillows and my nose is particularly sensitive. From what I've read this will work pretty much the same as what I'm used to except there is nothing above the eyes, which I think I will like. I think I will go by the sleep clinic and see what they have that I can try on and what they advise.

  • Phonse65
    Phonse65 March 20, 2011 at 3:58 pm   

    Unfortunately, the nose pillows irritated my nose.

  • Tracy
    Tracy February 22, 2011 at 7:31 am   

    Cammei; just don't fall in to the trap of buying a mask because someone else said THEY like it - since you wear a small or xsmall mask you will be a bit more challenged to find a mask suited to a short face or short nose/narrow nose bridge. Buying the least expensive mask does not mean it will fit and so then money down the drain! Its really important that YOU try on masks so see what best fits YOU. Make sure, when trying them on that they hook you up to a machine set at your pressure.
    The FullLife mask is a good one - IF it fits YOU. I think you can see where I am going with this.

    My best to ya!
    tracy

  • cammei
    cammei February 22, 2011 at 7:51 am   

    Yes, I see where you are going. I like the reviews I've read on this mask. I like the way it looks with nothing above the nose. However I do want to have a fitting to make sure it works for me.

  • Tracy
    Tracy April 21, 2011 at 10:58 am   

    so cammei - any updates about your mask choice? find something better?
    tracy

  • tSquare
    tSquare February 15, 2011 at 11:30 pm   
    Edited February 15, 2011 at 11:36 pm by tSquare

    I have always been a periodic sleep walker since I was a kid and have never grown out of it. Its never been a big issue, just something I do now and then. Its never been clinicly observed in any of my sleep studies so no 'offical' diagnosis. I was diagnosed with Narcolepsy in 1991 and started out with only Vivactl to to address the extreem/ mutiple episodes of Hypnogogic-holucinations w/sleep paralysis (symptoms of narcolepsy) I was exibiting per night. Only after we finally got those under control were we then able to address the 'cronic sleepies' with Ritilin first, then Provigil when it came out, and now I am back on Ritilin since the Provigil was found to be exacerbating my depression. I have cataplexy with my narcalepsy too (another sympton of narcolepsy), it however is very mild and thus not something needing medical intervention on its own too. I had another sleep study done in 2008 and found out that I had mild OSA (mostly due to weight gain related to depression, etc) and in that study my RLS was finally observed & confirmed (knew I had it years earlier). I am now also suspecting I may have REM Sleep Behavior Disorder (RBD). I plan on calling my sleep specialist this week and have a conversation about it. It (if confirmed) is like my sleepwalking, something I've always done since I was a kid, but it is getting distinctly more noticable and more consistant in its occurance and impacting my life quality.
    Changes are certainly a constant in life.

  • Tracy
    Tracy April 21, 2011 at 11:05 am   

    tsquare my friend, you certainly have a lot on your plate! so what did you doctor say or suggest to you about your sleep walking?
    curious minds want to know :)
    tracy

  • sleepynseagrove
    sleepynseagrove February 15, 2011 at 9:52 pm   

    Mine started out as seizures, then when i still was having problem with staying sleepy even on seizure med they found the narcolepsy ( it really was hypersomnia- excessive sleep disorder). Then they found the sleep apnea. So all of this was with just a few months in 2000. The strange thing about the sleep apnea was I wasn't even over weight. They said one month that i didn't have it and then 2 months later i had it. Now I take a tranquillizer at night, use my c-Pap and awaken fresh in the mornings. I then take my meds as usual after that.

  • Conneaut
    Conneaut February 7, 2011 at 9:31 am   

    I had obstructive sleep apnea and went through surgery to have a tonsillectomy, UPPP, turbinate reduction & deviated septum straightened. All went well and I thought my sleep apnea was cured until I did a follow up sleep study to find out I have central sleep apnea. I'd never heard of central sleep apnea it until now.

    Even my ENT doctor was suprised. I don't fit the profile for CSA. Not over weight, no heart problems, etc.

    What a bummer, I thought I wouldn't need CPAP after my surgery. Now I realize I'll need it for the rest of my life. Oh well at least it was discovered before it caused more health problems.

  • Tracy
    Tracy February 20, 2011 at 2:05 pm   

    I have what is referred to as mixed apnea - both obstructive AND central. I had the UPPP as well, and it actually made my apnea go from severe to profoundly severe! Caused me to require pressure increases from 10 to 20 in a matter of years.
    So - what I am suggesting to you is this - be proactive and when your old apnea symptoms start reappearing…daytime sleepiness, snoring even on cpap, memory loss, inability to concentrate, memory loss, headaches - or whatever YOUR apnea symptoms were…this would be your clue to have another cpap titration. You'll want to make sure your cpap pressure is adequate to eliminate your apnea episodes!

    Best to you!
    tracy

  • Gospelcrnr
    Gospelcrnr April 6, 2011 at 10:01 pm   

    Tracy, Did you doctor delve into "why" you have central sleep apnea? I just discovered I have both, OSA & CSA. My neurologist is ordering an MRI & is going to try to determine the cause (stroke, brain tumor, "short circuit" between brain stem & brain, etc.). In my short time of exploration for info, I have found that Mayo Clinic just discovered the CSA in 2006.

    Are you on a regular CPAP, BIPAP or ? I am on a BIPAPautoSV Advanced by Respironics.

    Any info would be appreciated!

    Thanks!
    Kay

  • Phonse65
    Phonse65 March 20, 2011 at 4:01 pm   

    Tracy, you experienced memory loss, tell me more. I have a problem but didn't know what to attribute it too.

  • Tracy
    Tracy April 21, 2011 at 11:15 am   

    Memory loss should always be discussed with our doctors because there are many causes of it and many levels of severity.

    Most people who have sleep deprivation - have memory loss because we are so sleepy we live in a fog. Most of us can relate to that kind of memory loss.

    When we have untreated sleep apnea, our oxygen levels can and do drop. Sometimes they can fall to alarmingly low levels and actually cause brain damage.

    Our oxygen levels while awake and asleep should remain in the mid 90% range. Those of you who have copies of your sleep study summary reports, can check and see what your oxygen levels were recorded as. When they fall below 90% during sleep, its a red flag to your sleep doctor.

    I cannot think of a better incentive to make cpap work, than to know how important it is to have cpap help keep our oxygen levels within normal ranges…otherwise, we are strokes or heart attacks waiting to happen.

    We can also relate to our snoring - pre CPAP. When an apnea episode occurs during sleep - we stop breathing…our oyxgen levels fall and our brain finally yells at us 'WAKE UP AND BREATHE FOR CRYING OUT LOUD" thats where the sudden SNORE, GASP, GRUNT, CHOKE, GROAN AND MOANING sounds come from - our brains panic and struggle to BREATHE - get in in as quick as possible.

    Remember our AHI - apnea hypopnea index - its a number that reflects how many apnea/hypopneas we have recorded per hour of sleep. Severe apnea is anything 40 or higher - THINK ABOUT what that means…that means you stop breathing 40 or more times per hour all night long…think how that wears on the heart and how much oxygen our heart, our brain, our bodies are being deprived of. To me, that is the truly scary part of having untreated sleep apnea!

    Hope this was helpful!
    tracy

  • maryland46
    maryland46 February 5, 2011 at 12:33 pm   

    Hi everyone my name is Maryland, I have just read Tracy's story about having multiple sleep disorder's like her I also have sleep apena, restless legs syndrome and Insomnia, my Insomnia was diagnosed first I'v had it for years I was just diagnosed with sleep apnea,and restless leg syndrome about three mounths ago, I have a CPAP machine now and I love it at first I could'nt breath with it, but i just kept trying now when its time for bed I have it on before i take my med's then have to take it back off to take them , but after this month i will have to give it back to company because I just cant afford it but I am a beliver in GOD HE WILL PROVIDE for me some how he always does, has anybody have any suggestions on how u can sleep good without the mechine?

  • Phonse65
    Phonse65 March 20, 2011 at 4:02 pm   

    Where two or more are gathered, I join you in faith & prayer. God Bless!

  • Tracy
    Tracy February 20, 2011 at 1:56 pm   

    You really do need to be using cpap to treat your apnea. If its left untreated and you are taking sleep seditives, that is a very dangerous combination. Have you looked in to buying a used machine onlinie?
    Tell us how you are doing!
    tracy

  • Phonse65
    Phonse65 March 20, 2011 at 4:04 pm   

    Oftentimes, CPAP (etc) providers have some used equip that they will sell really cheap, check yor own provider and any others that you know of.

  • SharonRSmith
    SharonRSmith February 16, 2011 at 9:47 pm   

    Maryland, check on your local craigslist/ads for people selling their CPAP machines or see if your supplier has any refurbished ones that you could get at discount. Also could try contacting the manufacturer - many pharmaceutical companies have a program for uninsured, unemployed, and/or low-income people - perhaps the manufacturer will have a similar program. And if it doesn't, try another one. Or try to set up a longer payment plan w/ lower payments. Or ask your Dr. if he knows how to help. You're health will only get worse without the machine. I was to the point where I was a dnger on the road…I'd fall asleep while driving after just 10 min on the road! Your health and safety and safety of others is primary! Blessings to you and believing with you!

  • Italianprincess
    Italianprincess January 30, 2011 at 9:47 pm   

    I have sleep apnea, restless leg syndrome, fibromyalgia and chronic fatigue. My doctor has changed my pressure settings several times, i have tried nasal mask and full mask (now wearing full mask). But, i do not feel rested, have a dry mouth, neck stiffness from back straps of mask and have marks on my face each day from the mask. The marks go away after a few hours i am up. I can sleep 12 - 15 hours and still not feel rested.

  • SharonRSmith
    SharonRSmith February 16, 2011 at 9:57 pm   

    I also have sleep apnea and chronic fatigue and was looking for any connection between the two. We thought I had fibromyalgia first, but then realized the pain I was having was the side effect of a cholesterol statin med that I could not tolerate. I've tested positive for mono the last two years straight even though I had it over 20 yrs ago. My sleep dr. thinks that I may not really have CFS, and I'm going to see an immunologist. I would be eager to hear anything you've learned about the connection between sleep apnea and CFS! plz email me at scrapper_mom@sbcglobal.netEmail Small. I've also been waking up with a mouth full of cotton this winter and am trying the different humidifier settings. And I can relate to neck pain from the straps! oh yes! causing headaches all day! But last year i switched to a high quality pillow that supports my neck and allows my head to sink in the middle (can't remember the name) but it's helped a LOT. I had my 2nd sleep study last night with a different mask that was WONDERFUL! It had just one stretch band that went above my ears to the back of my head - no wrestling with it at all.

  • sleepynseagrove
    sleepynseagrove February 15, 2011 at 9:58 pm   

    i was just like you, i could sleep for ever and still not feel refreshed. My dr. tried me on this tranquillizer that you take 2x a night. It knocks you out so that you get your restfull sleep and by the time you wake up for good in the am, you feel refreshed and not half so tired. I was tired, no energy, just sat around because i never felt like doing anything. Now i jump up, before everyone else and get started on my day. Finally i feel like living again and my family is very thankful.

  • SharonRSmith
    SharonRSmith February 16, 2011 at 10:00 pm   

    that sounds SO WONDERFUL! I would LOVE to feel energized again. Do you mind sharing what tranquilizer you use? I've tried Tylenol PM, etc. and they don't make much difference for feeling refreshed…they help me sleep better when I'm traveling or in a different place.

  • Tracy
    Tracy February 5, 2011 at 1:07 pm   

    Having the right style and mask choice is one thing, fit and adjustment another - I offer these suggestions:

    Mask Fit and Adjustment
    After you have chosen the best mask size and style for your face, you must adjust it properly before sleep. Sit on your bed, turn machine on, and place mask on your face with straps loose. Lay down in your sleeping position with your head on your pillow as you would normally sleep. Slowly pull the straps JUST UNTIL you get a good seal.

    Seating a Dual Cushion Mask
    If your mask has a dual cushion, it will need to be “seated”. After you have fitted and adjusted your mask using the steps above, to “seat” gently pull the mask straight out and away from your face to allow the dual cushions to inflate properly. Lay the mask gently back on your face.

    Don’t Expect Perfection

    If you shop wisely, and try on a variety of masks, you should be able to find the best possible mask choice for your face. Know that all masks can and do leak, but usually, this occurs when we change positions during sleep and that just cannot be helped. We have little control over what we do in our sleep!

    Your CPAP and mask provider can help you in your search for the best mask choice, but you need to take responsibility to keep them informed as to what works and what does not. Ask your supplier about 30 day mask exchange programs that allow the patient to try a mask at home for up to 30 days with the option to exchange for another mask in the event it does not work well.

    For the neck irritation from mask straps, have you tried placing a soft fabric between the strap and skin? Make sure not to overtighten the straps, they really should not be causeing that kind of discomfort.

    Dry mouth - ask your cpap supplier to show you how to tweak your humidifcation settings. This is really a cold winter and I find that I'm having to fiddle with my temp controls much more frequently this season than ever before. Full face mask users will have more issues with dry mouth than other patients, but humidification is definately part of the solution!

    Best of luck to you
    tracy

  • nightynight
    nightynight January 17, 2011 at 1:12 pm   

    I have several sleep disorders. I have Sleep Onset Insomnia in a bad way. I can not for the life of me fall asleep. At 5:00 in the morning I'm stll trying to fall asleep. Sleeping pills didn't work for me, I've tried them all. I also have chronic pain in my back and hip, due to a hip replacement that didn't work. I'm in a lot of pain even though I take pain pills. I haven't had a good nights sleep in over 6 years. I wish I was my husband, once his head hits the pillow he's asleep. Anyone have any suggestions of help for me?

  • Tracy
    Tracy February 20, 2011 at 2:10 pm   

    Have you had an overnight sleep study? It might be the best place to start - you want to be SURE that you don't have another or other sleep disorders. Often insomnia is a symptom of something else.

    If indeed you do have insomnia, have you considered treating with cognitive behavioral therapy… CBT?

    Here is a link to an article I recently wrote about CBT
    http://www.sleepconnect.com/sleep-disorder-ar...

    I used CBT myself for sleep onset insomnia - it was really what got me back on a healthy sleep cycle!

    Let me know if you have any questions about it!
    Good sleep to you!
    tracy

  • crjohanns
    crjohanns January 13, 2011 at 9:03 pm   

    I have a couple of sleep disorders. I have RLS, Insomnia and Central sleep apnea related to my MS. I was pretty blase about using my cpap at first, I was impatient and I have horrible claustrophobia. I had my first appt with my pulmonologist a month after being on cpap and he literally read me the riot act and explained to me just how important it is especially since my brain doesn't send the signal to breathe. I use supplimental oxygen occassionally, but usually just the cpap. It has been a real life saver.

  • Phonse65
    Phonse65 March 20, 2011 at 4:13 pm   

    I approached my CPAP/BIPAP the same way, and I too was quoted line and verse of the riot act. My Dr. said, "frankly if you are not doing as instructed, you are wasting my time and your LIFE! Not said but hinted at was 'don't use the equip, find another Dr.' MESSEGE RECEIVED! I always a 3.5L Bleed!

  • Tracy
    Tracy February 5, 2011 at 12:59 pm   

    How did you finally make cpap work? It might be helpful to others who are struggling if you shared your story! For example, was it a mask issue? Machine pressure?
    thanks for sharing and I am glad to hear you finally made cpap work for you!
    tracy

  • RCulpepper
    RCulpepper January 13, 2011 at 11:44 am   

    I have obstructive sleep apnea that was diagnosed in 2003. I have been using my CPAP religiously ever since that time and generally don't even take a nap without it.

    I've had no other sleep disorder diagnoses to date. However, I often (several nights each week) have trouble getting to sleep and am up until sometime between midnight and 2 am. I need to get up at 6am every day to get ready for work, but that doesn't happen when I'm up so late. Perhaps I have (mild?) Sleep Onset Insomnia, but I have not been tested or diagnosed for it.

  • Tracy
    Tracy February 20, 2011 at 2:17 pm   

    I occasionally have bouts of sleep onset insomnia - I have learned how to nip it in the bud. The problems with sleep onset insomnia is that we, ourselves, usually perpetuate and make it worse!

    I am sure you are aware of what good sleep hygiene is - limited or no caffeine during the day - giving yourself at least one full hour to prepare for your chosen bedtime - meaning nothing stimulating to the brain like tv, loud music, computer etc. What I do is sit in my fav chair in low light - take this time to get those pesky thoughts out of my head…racing mind…of what I did today and what I have to do tomorrow. I then do some deep breathing and try to relax my body. I then take a hot shower or bath in LOW LIGHT ( usually candle light ) and then dry off and jump in bed. Sleep is promoted by lowering body temp - so if you RAISE your body temp with a hot shower or bath, then get in bed asap, it will help promote sleep.
    LOW light is very important - bright light enviromment tells the brain WAKEFULNESS TIME TO BE ACTIVE whereas low light tells the brain TIME TO PREPARE FOR SLEEP

    so surround yourself in a relaxing low light environment one full hour before lights out and bed time.

    Let me know if you have any success with this!
    tracy

  • Tracy
    Tracy January 13, 2011 at 7:46 pm   

    If it persists, discuss with your doctor. Many of us just develop bad sleep hygiene, and perpetuate our own bad sleep habits - making the sleep onset insomnia bouts worse. Once you throw off the body clock, it can be harder to get back on track.
    Daytime naps, when you can take them, are a great way to repay sleep debt.

    tracy

  • Phonse65
    Phonse65 April 14, 2011 at 3:53 pm   

    TRACY: You have become extremely, extremely knowledgeable on the whole
    range of SA Types & their problems.
    Your advice has been incredibly helpful to me. God Bless you, my friend!
    ((( S U P E R H U G ! )))

  • SharonRSmith
    SharonRSmith February 16, 2011 at 10:05 pm   

    tracy - I LOVE to take naps, but was told that it just made the insomnia worse or supported the bad sleep hygiene…that it's more about our bodies needing the continuous 6-8 hrs of sleep…I've just recently been hearing the term sleep hygiene (prolly since I've not been doing it and my Dr. is trying to educate me to change my poor habits…and I'm trying) So…just curious what your thoughts are with that in connection with sleep disorders?

  • Tracy
    Tracy February 20, 2011 at 2:21 pm   

    Naps are always the best way to repay sleep debt…BUT naps should be less than 60-90 minutes, so when napping, if you think you will oversleep that - set an alarm.

    Here's why - there are 5 distinct sleep stages - with REM being the 5th or last. It takes about 90 minutes to reach REM sleep ( unless you have narcolepsy and then you may fall directly in to REM) If we nap during the day and reach REM - it will cause disrupted night time sleep - so that's probably where your doctor is coming from. So yes, take naps, but short ones!

    Does that make sense?
    tracy

  • SharonRSmith
    SharonRSmith February 20, 2011 at 10:21 pm   

    yes, thanks…and with my microwave alarm clock limited to 99 minutes, that's easy to set :-)

  • Phonse65
    Phonse65 April 14, 2011 at 3:55 pm   

    MICROWAVE? CREATIVE!

  • Rose4U
    Rose4U January 12, 2011 at 1:41 pm   

    Tracy - What is the Sleep Onset Insomnia? I have not heard about that. I know it must make you crazy if it mixes with the Sleep Apnea. Wouldn't it just be nice to lay down and go to sleep like the good ol days!

  • Tracy
    Tracy January 13, 2011 at 7:44 pm   

    There are many different forms of insomnia -
    sleep onset insomnia refers to having trouble FALLING ASLEEP
    it is sometimes also called delayed sleep syndrome!

    with my bilevel - i AM now able to just lay down and go to sleep peacefully!

    Luckily for me, my bouts of sleep onset insomnia only happen a few times a year - and I CAUSE them myself - stress, too much caffeine, staying up too late at night working or watching tv ( bad tracy) which throws off my body clock - things like that can trigger the bouts - and before you know it, days and weeks have gone by before you resolve. Ane I AM THE SLEEP EDUCATOR, and should know better -

    oh well, I am afterall, just human :)
    tracy

  • Phonse65
    Phonse65 March 20, 2011 at 4:15 pm   

    Tracy, thanks for the incredible info you've been providing. You should be a "CA"

  • maryland46
    maryland46 February 5, 2011 at 7:52 pm   

    I have trouble falling asleep every night it takes me about 3 hours or more to go to sleep, I have sleeping pills but I dont like taking them because thay make me feel bad the next day so I suffer, I do have a lot of stress because I run an Adult Foster Care home out of my home I'm with them 24-7. Is there any thing I can do to help me fall asleep? besides pills and take away my stress because there is no way it will go away.

  • Rose4U
    Rose4U January 12, 2011 at 1:05 pm   

    I have sleep apnea RLS and arthritis. I too would be exhausted an hour after waking even with the CPAP. My sleep lab folks, My doctor and I have it pretty well worked out now at least to sleep and get through the day. I take a PM tylenol or whatever at night and wait to be sleepy before sleeping. Sleep in cold room no humidifier - get realy comfortable. I put cold pack on lower back sometimes when real pain keeps me awake. In am I take Nuvigil - a wonder drug that keeps me going through the day. It is designed for folks with Sleep Apnea and Shift Work Disorder. Keep routine daily and it works. Biotine has a mouthwash, gum and spray for dry mouth and I use a nasal mist (saline) generously to stay moist. If I try to go to sleep without the machine I just jerk around stop breathing and scare myself. I never go without. I am now on a full face. Used the pillows but I like having the mouth and nose covered so I can breathe any way that works. The one thing that really bothers me is the strap will cut my neck in the back sometimes so I need to put some kind of padding underneath. This all may be a pain but it beats the alternative!!!! I read that heart attacks sometimes can be attributed to Sleep Apnea when they occur at night. I don't want to be one of them.

  • Tracy
    Tracy January 12, 2011 at 1:19 pm   

    Rose4U - great post with lots of useful information for our community, THANK YOU.
    I too have soreness - irritation from the strap that goes around the back of the neck. I use a soft piece of fabric to cover the strap and it works well!

    Best to you and I look forward to seeing you on the discussion boards!
    tracy

  • sadcat
    sadcat January 8, 2011 at 8:14 am   

    i have periodic limb movement disorder and sleep apnea. i should get my oral appliance (for the apnea) in 2 weeks - then i'll let you know if that helps either issue

  • Tracy
    Tracy January 8, 2011 at 9:38 am   

    thinking positive for you with that oral appliance and looking forward to you sharing your experience with it.
    tracy

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