edit: Doctor says no apnea now pg. 3

[Julie]

How much Melatonin do you take? I ask because it's been quite controversial... too many people taking much too high doses (5 and 10 mg) per night, and then those backfire and cause worse trouble. The proper dose is only .3 to .5 (1/2) of a 5 mg tab per night... so you might want to look at that. Has your 'neuro' considered changing your anti-seizure med dose or even the meds themselves?

[FairwayGirl]

No change on my epilepsy meds, it has been working for years (8 years, though there have been times I didn't take ANY meds and was still only having events 1 time a day at the very worst) nothing like 3-4 times and hour!! Because of my type of epilepsy I'm limited on which meds I can take. I have now seen 6 doctors that all want me to continue taking 10mg of melatonin, I even mentioned what you said to me before about it being too high of a dose (both to my neuro and my new sleep doctor!) and they said that isn't true at all? They said melatonin is sold in 5mg doses, and it's totally fine to take 2 of those :/ I lay there for hours without it. So, maybe it's because I cannot sleep at all? I don't know :/

[McSleepy]

All people are different but... here's what I had (that relates to your issues) and how I got it resolved:
1) pressure was too high to tolerate - I got a bi-level CPAP and I used a relatively high pressure support (the difference between EPAP and IPAP); used some fancy programming to accommodate my specific breathing patters (min and max sustain times, pressure rise rate, etc.); now I'm so comfortable, I can't sleep without it
2) hated the mask touching my face - got the Breeze, which doesn't touch my face, other than the base of the nose and nostrils;
3) air blowing on my face - I modified the mask to exhaust the air way up over my head, and also used a modified sleeping mask to cover my eyes (the most sensitive area of your face);
4) noise - I sleep with earplugs (the softest foam plugs I can find);
5) financial - since I did the switch early, the insurance was still paying the rent-to-own installments on the constant-pressure CPAP, and simply continued the payments on the bi-level CPAP, so it didn't cost me anything.

McSleepy

[FairwayGirl]

Thank you! I'm glad you mentioned the breathing pattern, I forgot to mention that problem, I'm having that issue badly!! I breath VERY SLOWLY, my current machine is making me not get enough breath because it forces me to breath when it wants me to!! All the air is too much for me :0, even though my max pressure is 9 :/ I have the dreamwear mask just it touching my nose is making me feel horrible all night...as I said I wake up a yell all night and scratch up my face trying to rip it off as quickly as I can the air blowing is killing me. Especially my eyes. Even though it doesn't blow up, it blows out, most days I can't even open my eyes until I soak my face with hot water I can't stand a sleep mask, because it's touching me . I can't sleep with ear plugs because I often have to jump out of bed for my young kids I HOPE the DME will swap and put the $200 I've paid on my rental toward it...but, they haven't called me back since Monday :/. I'm hopeful still! They have me set to do the sleep study this Saturday :/

[Julie]

Please put in 'Melatonin' in the search box here and you'll see a lot of stuff, especially from just this (or last) week re doses, etc... Unfortunately many docs are NOT up to date at all about it. You can also do your own research of course on Google, but it's harder to sort out what's what unless you're a med person and are very careful to look at research dates plus sort real data from commercial stuff.

I also strongly suggest you get a referral to a therapist specializing in 'phobias' - I'm not saying you're phobic about anything, but their type of therapy - desensitization - is terrific for your problem about anything touching you plus it usually works very quickly.

[FairwayGirl]

Thank you for recommending to search melatonin on the site, I have done that A LOT, just to double check myself. I still don't see anywhere that shows evidence that it's worth not sleeping at all to drop it. I have asked many doctors, 3 of them specific sleep doctors, and not one has said it's an issue. I don't believe ALL of them could be out of date. I have search all around for someone to help with phobia's but so far it has not be fruitful. I talked to my DME and they will not take the money I've already paid for the rental on this machine and apply it to a new machine. I am very dishardend by that, and can't figure out if it's worth doing the sleep study, or just keep suffering. They were very nice and helpful before, but I will not ever use them again as they won't work with me. I'm on my computer for the first time in over 2 weeks, I'll try again to see if I can figure out how to upload pictures of sleepyhead. I'll have to call my insurance to see if they know of any therapist around, because google failed me on that one

[robysue]

Oh my gosh!! You are the answer I'm looking for!! You sound exactly like what I am going through!! The air blowing on me is one of the biggest issues I have. So is the noise. I have misophonia, many noises REALLY bother me. Some make me throw up (like the sound of a penny spinning, or someone eating!!) the other big issue I have is the mask touching my face. It makes me wake up over and over...

You may want to ask whether or not some kind of cognitive behavior counseling could be done to help you learn how to make your body a bit less sensitive to all the physical stimuli coming from the machine. That was a huge issue for me, but it sounds like it's an even bigger one for you.

I usually yell and try to pull it off, so I keep my husband awake too but, the biggest problem I have is no restful sleep.

During my First War on Insomnia, one of the "rules" the PA told me I needed to abide by (and that dear hubby got to enforce) was this: If I was angry at the PAP, I had to leave the bedroom. I could do whatever I wanted to do outside the bedroom, including throwing a royal hissy fit if I wanted to. And there was more than one of those. I was only supposed to go back to bed when I'd settled myself down enough to get over the anger and face the bipap with at least a neutral mindset. Sometimes just getting up and spending 5-10 minutes in the bathroom was enough to defuse the anger. Sometimes it took an hour or more of throwing the hissy fit with lots of pity-partying thrown in for good measure before I could settle down enough to go back to bed.

But by getting up and dealing with the anger outside of the bedroom and away from the (then) hated PAP allowed me teach my body and my mind to accept the reality that if I wanted to sleep, I had to figure out a way of doing it with the mask on my nose.

I wake up constantly, and the no sleep is what makes my epilepsy so much worse (a LOT of epilepsy is triggered by being tired!

You need to tell the sleep doc that you are waking up constantly and that it is making the epilepsy much worse.

Unfortunately sleep maintenance insomnia can be tough to deal with and also tough to treat. A lot of prescription sleep medication helps people fall asleep quickly, but it doesn't help that much with staying asleep throughout the night.

The CBT for Insomnia that I did in order to fight the First War on Insomina was kind of brutal since it involved some intentional sleep deprivation. But the idea behind the intentional sleep deprivation was to force my body to figure out a way to stay asleep for a full sleep cycle or two at a time. (The PA described it as "we need to consolidate your sleep cycles".) The idea was that if I could not get back to sleep within 15 or so minutes of waking in the middle of the night, I was supposed to get out of bed and go into another room and sit until I started feeling sleepy. I also had a "restricted sleep schedule" as well. Before starting the CBT-I, I estimated that I was getting no more than 4 1/2 or 5 hours of highly fractured sleep no matter how long I was in bed at night. So the PA told me that I needed to use a 6 hour "time in bed" window for all my sleep. I got to pick my wake up time (7:30) and she then told me that my official bedtime would be 1:30AM and that I wasn't supposed to go to bed any earlier than that even if I did feel tired. And I had to get up at 7:30 regardless of how little sleep I got.

As you can imagine, this was not fun. But within 6 weeks of starting the CBT for insomnia, I was finally starting to fall asleep within 10-15 minutes of going to bed and the night time wakes were dropping to 2-4 range instead of 10+ every night. And the night time wakes were also getting shorter. Sometimes I only knew about them because my PAP data showed that I'd turned the machine off and back on at a time I did not remember.

I have taken a couple sleep meds, so far they don't help. I can fall asleep (with the melatonin) but I wake constantly (that and the extreme sleepiness is why I went to the sleep doctor to begin with!) but, it's actually worse since starting CPAP.

How much melatonin? And when are you taking it? You might also ask both the neurologist treating the epilepsy and the sleep doctor about whether cognitive behavior therapy for the insomnia aimed at consolidating the sleep cycles might be safe for you to try.

Another thing that can help is light therapy in the morning. Sunlights that are used to treat Seasonal Affective Disorder (SAD) can also help stabilize the sleep cycle, particularly if you have to get up before its very light outside.

I have kept with it, because I really cannot continue living this way. My neuro wants me to stop working and get disability!! I'm 35, that's crazy!! I only started working 1.5 years ago (I was off with my kids before that, and worked before I had the kids!) but, I've gone down hill so quickly since working she is very worried about me not working is not an option, though!

Something that was suggested to me by several people around here was to take some time off work. I couldn't do that because I'm a college professor and while we have "sick days", we're responsible for finding replacements. But would it be possible for you to take a couple of weeks of either sick leave or vacation time while you try to get the sleep and the epilepsy stabilized at least a bit?

[Julie]

Never said to 'drop' the melatonin, just lower the dose - nothing to lose by trying for a couple of nights to see if it makes a difference... you're having problems and it could be a factor considering you take literally more than 10 x the effective dose.

[FairwayGirl]

Sorry for the confusion, drop melatonin meant drop the dose. I have tried many times to lower it or even not use it. And I lay there for many hours. I have called around to find someone to help me with a CBT and dealing with the panic and found no one local. I'm not angry with the machine, it's just things touching me and the hated noises. I'm so sensitive that if my dog wakes up during the night and licks his leg it wakes me up! I can't stand any sounds I have talked to my neuro and she wants me to quit the CPAP because I'm so much worse. It is not safe at all for me to not be sleeping!! I cannot do any kind of sleep deprivation (we just talked about why hospitals don't do sleep deprivation EEG's for adults, they can't because the adult had epileptic events while driving!! And I'm doing it every day ) I have only been working for a year and a half, and I'm a secretary for a very large organization. I have very little leave, and no one to back me up if I'm gone. Being off work is not option at all. All this keep piling up and causing me more and more stress, which makes sleeping even harder I tried to wake with light, but the only time I ever feel awake is in the dark. If I wake before daylight I feel better all day (until I see the sunlight, then I start to fall asleep!!) so, light therapy doesn't work at all things like that are what frustrate me the most! I just want to know why I only feel awake during the night

[Julie]

Purely as an interesting thing to do (tho' you may find more in it), look up "Non 24". It's a condition blind people get that reverses night and day in many ways due to their experience of light, etc...

[Drowsyhead]

You need to create a nice sleeping environment to induce better sleep and put your body at ease so it doesn't put up such a reaction when using your machine. Hypnosis and meditation can help. Keep it dark and don't use computers, tablets, and smartphones at night. If you addicted and can't stop you need to get help or use distraction or at the very least use special glasses or apps that reduce the blue light that comes off the screens. You can find apps for those for free. Use calming music or sounds or white noise, etc. No caffeine several hours before sleep or eating just before sleep. Just google good sleep hygiene can help.

I have a saying bipap or bust. I use an ASV machine. If I had to have sleep apnea why do I have to have the worst case scenario central apnea one I thought to myself when I was told by the respiratory tech that was what I have. Obstructed sleep apnea patients could be remedied by removing the obstruction. Whereas mine is a lifelong problem because my brain doesn't tell me to breathe. Unless some miracle comes along I would be relegated to using a machine for life. Imagine me hearing this in my early 30s what fate has in store for me. In my opinion cpap are a joke and shouldn't even exist or be made any more. The only reason they are still around is to make money and create a difference in "upgrades" so the dme and manufacturer can charge more for a bipap as they bumped you up to the next machine which should of been the first machine from the start in my opinion. Most people have issues with cpap because the pressure is the same constantly for inhale and exhale. Nobody has the same pressures for inhale and exhale it is so dumb and antiquated from the 70s technology and should no longer be made like black and white television or VCRs. It also makes it hard for you to exhale fighting against a strong pressure where as in a bipap machine the pressure is reduce to help you breathe out against such resistance as it knows to. Also you should use your ramp feature if you haven't or change it to a longer period or lower pressure until you fall asleep. You probably need a better mask that feels better against your face and doesn't make your claustrophobic at the same time. You will need to try many many to find the right ones. A cpap is alike a car with 2wd drive and a bipap is a like a car with 4 wd or all wheel drive. Why not make them all that way if it only costs maybe $15 more in parts to give a machine with double the capability with such a small price difference in parts? I tell anyone even if your doctor says you don't need a bipap just get a bipap as bipap can also act as a cpap plus you never know if you might need a bipap later on or if the sleep tests weren't accurate or good. Better to be safe than sorry and get a bipap now. Wow invest a machine that only does one thing and you might out grow it. Also if you ever sell it you would get more money back as more people need bipap and you can charge more for it because you will cover almost any buyers than just cpap buyers and users.


Never let money be an excuse or barrier to fix your health problems. If you need a bipap you need it. Your sleep apnea doesn't care if you are black or white or rich or poor. Start a Gofundme page or ask from the cpaptalk community for donations using Paypal and you will be surprise how many will help to cover any financial woes you have if you only actively seek and ask for it. Good place to start also is to talk to your member services of your health insurer you go to or the dme and tell them your financial situation. You have better chance with the insurer helping than with dme but doesn't hurt to try both. You can also talked to your sleep doctor or respiratory therapist about needing a machine and they could ask on your behalf of other patients who no longer need their old machines and give it to you. You can post want ads in Craigslists and local paper. They might reduce your cost or waive fees to help you. Or find you a much cheaper refurbished machine. You can also look on craigslist but be sure to test it out or you can be out even more money if you bought junk. Also some companies donate free machines to people who are in need. Most of the time the wait list is long and you never hear back or the machines are gone but it doesn't hurt to try anyways just another less known option. If you have some weight you could lose you can make lifestyle changes and exercise more or get surgery could also be an option if you show that you can't use machines and you are a good candidate for it. If it was up to me everyone should just get a ASV machine automatically and there would be no other choice. That way if you develop any other problems in the future like central apneas you will be cover by having that machine regardless and you also don't even up putting money into three different machines going from cpap to bipap then to asv machines and put it all one time into just one machine so no waste of your cash or insurance cash as well. This way it will also bring down the crazy prices of ASV as the machine will be cheap now that everyone has it and make the costs of owning an asv machine just slightly more than a regular bipap. I know this will never happen because common sense and justice doesn't happen especially in this country because the greedy corporate scoundrels are in bed with the corrupt politicians . I wish you the best with a swift resolution to your sleep issues. May you soon find sleep is your friend and not your enemy.

[FairwayGirl]

Thank you for all that info. I already follow all the sleep hygiene. I'm a little torn on how to feel. My doctor just called for me to cancel my BiPAP sleep titration for tomorrow. They, don't trust the sleep study that the doctor I just fired did (he won't event release the full study to another doctor!!) and my sleep study 2 years ago showed no apnea. They want to do a home oxygen test with no CPAP. I'm going to ask to do one with the CPAP too. They actually think I'm having multiple epileptic events all night and that is what keeps waking me I started Silensor and I still cannot sleep through the night, so maybe that is true. The most deep sleep I've ever seen on my Fitbit (which I know isn't perfect, but does help me track some!!) is 1:12. I feel horrible all the time :/ so, it's still a waiting game until I can figure out what is wrong

[Sheffey]

In my opinion cpap are a joke and shouldn't even exist or be made any more. The only reason they are still around is to make money and create a difference in "upgrades" so the dme and manufacturer can charge more for a bipap as they bumped you up to the next machine which should of been the first machine from the start in my opinion. Most people have issues with cpap because the pressure is the same constantly for inhale and exhale. Nobody has the same pressures for inhale and exhale it is so dumb and antiquated from the 70s technology and should no longer be made like black and white television or VCRs. It also makes it hard for you to exhale fighting against a strong pressure where as in a bipap machine the pressure is reduce to help you breathe out against such resistance as it knows to.

I beg to differ with your rant. My CPAP treats my OSA very well, and is comfortable. And that is with high pressures. I own a BiPAP and have tried to use it several times over the years. The up and down of the pressure on each breath is annoying or worse. There are no problems for me breathing out against pressures as high as 20.

Enjoy your BiPAP, but don't disparage my CPAP.

[palerider]

I have a saying bipap or bust. I use an ASV machine.

so?

In my opinion cpap are a joke and shouldn't even exist or be made any more. The only reason they are still around is to make money and create a difference in "upgrades" so the dme and manufacturer can charge more for a bipap as they bumped you up to the next machine which should of been the first machine from the start in my opinion. Most people have issues with cpap because the pressure is the same constantly for inhale and exhale.

well, you know what they say about opinions, them and assholes, everybody's got one... apparently the same thing comes out of both of yours.

more drivel

your ignorant diatribes don't help anybody.

[49er]

Purely as an interesting thing to do (tho' you may find more in it), look up "Non 24". It's a condition blind people get that reverses night and day in many ways due to their experience of light, etc...

On a related note, you might want to check out this site to see if anything is applicable, including Non 24

http://circadiansleepdisorders.org/index.php