Not sleeping well? Experiencing a lot of daytime sleepiness? Not thinking clearly? These symptoms are all common to chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) but they don’t always entirely derive from it… not even in people with ME/CFS/FM.
If the experience of one person with chronic fatigue syndrome is at all representative, thinking that all your symptoms come from ME/CFS or FM could be costing you dearly in energy and health.
After being diagnosed with heart failure Carole spent alot of money and went on a protocol that made her significantly worse only to find out later that she had sleep apnea (not heart failure)
Heart Failure?
Carole has had chronic fatigue syndrome for over 30 years, but the last year, as she started experiencing heart palpitations, angina, and problems breathing, was probably the worst. These heart symptoms sent her to a well-known ME/CFS doctor who focuses on heart issues. One echocardiagram later she was told she had heart failure and she doggedly began a protocol she described as containing a ‘staggering’ number of medications, including anti-convulsants, which ended up making things considerably worse.
Other cardiologists were brought in to assess her symptoms, and twelve thousand dollars was spent on another echocardiogram, a Holter monitor test, several EKGs, and several lab tests
On the advice of a local doctor, she declined to do the $6,000 vascular dye test requested, and with her head feeling stuffy went to see her ear, nose, and throat (ENT) doctor. He promptly ordered a sleep study which indicated that sleep apnea was causing her to spend much of night waking up repeatedly (up to 30 times/night).
Sleep Apnea
Sleep apnea… not heart failure after all, but sleep apnea. A common, easily diagnosed, and usually readily treatable sleep disorder.
Sleep apnea may not be heart failure, but it is nothing to mess around with either. Most problems with sleep apnea occur when your tongue, tonsils, or other pieces of floppy tissue in your throat or nose cover up your airway depriving you of oxygen. Your heart rate slows in order to conserve the oxygen that is left. As your oxygen starts to run out, your heart bursts into action, jolting your body enough to force those flaps open and get you some air.
This slow down/speed up (crash/push process) puts a tremendous strain on your heart, increasing your risk of stroke, cardiac arrest, high blood pressure, and diabetes. A recently published study found that having sleep apnea increases your risk of sudden cardiac death at night as you ‘sleep‘. (Sudden cardiac death at night appears to be unique to people with sleep apnea. This may be what happened to Rich Von Konynenburg, who did have a CPAP machine.)
Sleep Apnea in Progress
With her heart palpitations, trouble breathing, and angina, Carole was in pretty bad shape. But three to four weeks after starting using the CPAP machine she reported:
“I cannot tell you the difference in my energy level, dizziness, even my gut problems … [the machine is] not easy to get used to, but the longer I use it the better I feel. The improvement in [cognition] is astounding. I am able to concentrate, think clearly for a change, and mental fatigue is much improved. I’m active, except for some rest periods, all day long. I feel it has saved my life.”
She’s not the only one; a recent case report featured of a woman diagnosed with fibromyalgia who’s symptoms completely disappeared after being treated for sleep apnea.
Herein we present a female patient with diagnosis of FMS for 10 years who had complaints of morning fatigue, restless sleep, sleepiness during day and snoring besides musculoskeletal symptoms. Severe OSAS was diagnosed after polysomnographic analysis and FMS symptoms were totally improved with nasal continuous positive airway pressure treatment.
Let’s learn some more about sleep apnea.
About Sleep Apnea
It’s Common (and Commonly Missed)
Sleep apnea is common. One in five people have mild sleep apnea and one in 15 has at least moderate sleep apnea, and like ME/CFS/FM, it’s under-diagnosed. Twelve million people in the US, most of whom are not diagnosed, are believed to have sleep apnea. A study following 10,000 people who did sleep studies found that nearly 80% had sleep apnea.
A health flow of air to the lungs. Notice how tight the passage way becomes at the back of the throat. Changes in anatomy to allow humans to speak more fully are believed to have put them as risk for sleep apnea. Obesity helps alot as well 🙂
Study findings vary, but some small studies suggest the prevalence of sleep apnea may be higher in ME/CFS/FM. Fifty percent of ME/CFS patients had sleep apnea in one study and forty-six percent in another. Half the people diagnosed in a small sleep clinic study met the criteria for fibromyalgia. Over forty percent of FM patients were found to have sleep apnea in another small study.
Other ME/CFS experts such as Dr. Klimas doesn’t find it that much but does encourage patients to get sleep studies done. One in every 15 or 20 people with ME/CFS diagnosed sleep apnea is about 50,000 people who are missing out on the chance of real improvements in their health. Given how rare those are – this is not an opportunity to be missed.
Interestingly, women with sleep apnea are more likely to have fibroymalgia, migraines, depression and irritable bowel syndrome than men. They also tended to have lower self-reported energy levels than men.
Symptoms Associated with Sleep Apnea
The symptoms of sleep apnea are similar to those of ME/CFS. Throw in post-exertional malaise and stimuli issues and take away choking sensations and you’d have a pretty fair match for ME/CFS, and a diagnosis perhaps even an experienced ME/CFS doctor might miss.
- Daytime sleepiness or fatigue
- Dry mouth or sore throat upon awakening
- Headaches in the morning
- Trouble concentrating, forgetfulness, depression, or irritability
- Night sweats
- Restlessness during sleep
- Sexual dysfunction
- Snoring
- Sudden awakenings with a sensation of gasping or choking
- Difficulty getting up in the mornings
(On the basis of these symptoms, one would think that everybody with ME/CFS should do a sleep study.)
Risk Factors
Risk factors for Sleep Apnea Include
- Being male
- Being overweight
- Being over age 40
- Having a large neck size (17 inches or greater in men and 16 inches or greater in women)
- Having large tonsils, a large tongue, or a small jaw bone
- Having a family history of sleep apnea
- Having astroesophageal reflux or GERD
- Having nasal obstruction due to a deviated septum, allergies, or sinus problems
Note, though, that Carole is neither male nor is she overweight, and she doesn’t have large tonsils, a large neck size, or a family history of sleep apnea. She does have GERD, and “boomer” ME/CFS patients might take note that she is over the age of forty.
Snoring
Thirty to fifty percent of people snore and most do not have sleep apnea, but loud snorers should note that snoring is common in sleep apnea. Snorers with sleep apnea display a pattern in which they stop breathing up to sixty seconds at a time and then jerk themselves ‘awake’ in order to get oxygen. They may also sound as if they’re gasping or choking while they sleep.
Your partner should be able to determine if you might have a sleep apnea-like breathing pattern, or you can tape record yourself.
Treatment
The CPAP (Continuous Positive Airway Pressure) Machine
A CPAP machine is the most commonly used treatment for sleep apnea.
When people have problems with their CPAP machine, it’s usually because the mask does not fit right or is irritating, or the dry air dries out their throat, etc. Some simple changes can help: A humidifier can take care of the sore throat problem. Wearing a baseball cap under the mask, oddly enough, can be very helpful. A face guard to reduce sounds, a ‘snuggi’, using a ‘bipap’ machine instead, and other accessories/alternative can make this type of therapy more tolerable.
Alternative Remedies
Since sleeping on your back places you more at risk of sleep apnea, sleeping on your side is better. Some people sew tennis balls into the back of their sleeping clothes to keep themselves from sleeping on their back.
Oral Appliance
An oral appliance that pushes the jaw forward and opens up the breathing passages can be helpful in mild to moderate cases of sleep apnea. More severe cases will need to use the CPAP machine with its associated ‘mask.’
If CPAP doesn’t work work or you want to consider alternatives, there are less invasive remedies such as exercises (including tongue exercises), stretches, herbal remedies, and even musical instruments that improve your breathing. Check out Alternative and Natural Remedies for Sleep Apnea.
More Sleep Help from Health Rising
- Health Rising’s ME/CFS and FM Sleep Center
- How raising the head of your bed could help you sleep better
- New sleep drug expected to hit the market this year
Resources
- Sleep Apnea Guide – an excellent resource for Sleep Apnea
- WebMD
- Excellent WebMD blog on Sleep and Chronic Fatigue Syndrome
- The Sleep Zone
Have you been tested for, or had any experiences with, sleep apnea? Please tell us in the comments below.
Have your ‘ME/CFS/FM’ symptoms turned out to be something else? Have a similar story you think others should know about? Let us know in the comments section or contact me here.
Good write up Cort. One thing not noted is the fact that there are two types of sleep apnea. One is the type that is written about here – Obstructive Apnea. The other type has to do with the CNS (central nervous system), called Central Apnea. In that type the brain doesn’t tell you to breathe. For many of us with autonomic nervous system disorders (ie POTS) we have both types of apnea. When the autonomic (automatic) nervous system is faulty – it can cause all sorts of issues with the function of the body. Not only do some people have apnea with sleeping but their blood pressures can drop dangerously low and that in itself can cause one to wake themselves up to bring the pressure back up. If the brain doesn’t reminded you to breathe – the consequences are deadly. With those of us with faulty circulation and dysfunction with blood pressure, this can have a big impact on sleep quality.
As was mentioned, it is hard to get used to a CPAP or BI-PAP machine – but, for many there is NO choice. I was told I had to adjust – there was no allowance for not using it. I have over the years tried to discontinue it – but, with each trial, I’ve determined it is a very necessary thing for me and my health.
Thanks for bringing awareness to others. This could be one of the key points to fatigue for many.
Issie
Thanks Issie,
I knew about the Central Apnea but heard it wasn’t very common, but now that you mention it, it makes sense it would be more common in ME/CFS than usual. Thanks for pointing that out.
I got sent home to do a test for sleep apnea..
It only showed up snoring..
Most things I attached had came of in the night..
I’m still having issues of waking up with strange weired headaches, palpation, sweats, jitters. Leaves me feeling exhausted the rest of the day ?
That sounds like me and would explain why just before or during my AHI gets worse.
I was diagnosed with a rare form of Narcolepsy 2 tears ago along with EDSD (Excessive Daytime Sleepiness Disorder like Morti Z. through an MSLT). The EDSD means that I could fall asleep within 6.5 minutes after a “normal” night’s sleep. With my form of Narcolepsy, I get no Stage 3 sleep which is when the body and mind repair itself and the mind stores memories. I was lucky enough to have a pulmonologist/sleep specialist who was aware of this issue. No wonder the Energizer Bunny runs out of steam…
The only medication currently available for this form of Narcolepsy is Xyrem which is an orphan drug, very expensive and very dangerous – at least for me. It is a derivative of GHB, the date rape drug and is the only thing that has been found so far that puts humans into Stage 3 sleep. Unfortunately, I lost an extreme amount of weight and developed gastrointestinal and urological problems from it. (There were only 364 people in the clinical trial before it was pushed through as an orphan drug by the FDA and Jazz Pharmaceutical did not test its interactions against most other drugs – of which there are many. Since it works on the GABA receptors, everything from narcotics to antibiotics can cause reactions).
Aside from helping you get Stage 3 sleep, it also somehow helps keep you up during the day. Many people have found it effective but the cost can be close to $5,000/month. It did help me a little when I was on it but not enough to balance out the side effects. A lot of people have found it helpful although I do want to note that Jazz Pharmaceutical closed the Xyrem blog over a year ago which I find interesting.
Making sure you find the right sleep doctor who is knowledgeable about the different types of narcolepsy is vital – just as we searched for years for doctors who understood CFS and Fibromyalgia. Please make sure you never settle for a doctor who leaves you with unanswered questions or who invalidates what you are feeling and experiencing. You know if your body is telling you something better than anyone else.
I had a sleep test about a year ago and was found to have moderate sleep apnea. I was stopping breathing 20.5 times per hour while sleeping. It was decided I should use a CPAP machine. I hired one and have found my sleep has greatly improved. I am able to function much better throughout the day.
Yes, my problem is with the CNS. I did not have sleep apnea until AFTER the acute onset of M.E. Then I did in fact have a sleep study at the suggestion of Dr. Klimas’ office, and got a CPAP. Because of the CNS issue, the CPAP was not helpful – my breathing was all over the place, sometimes totally fine, sometimes nonexistent. I finally got a script for a Bipap, and I believe all M.E. patients should be automatically given this more complex machine, which is built to respond to your body rather than to force it to do things whether the body is working or not at the moment. However, because I have the illness and that’s what caused the sleep apnea, I have not improved with a year and a half of using it. It keeps me alive and breathing, so it keeps me from getting worse in that sense. I don’t have the insane heart events I used to record prior to the sleep study (kept my heart rate monitor on all night and found both sinus tachycardia with it and these crazy events where the HR went to 220 – where I stopped breathing during the night). So I’m glad I have the machine, I can sleep with less fear and chest pain/strangling feeling. For those with Fibro, it also is incredibly difficult to use, because every little place where the mask touches you or the air blows on you wakes you up all night long – again because the CNS is messed up and the brain hypervigilant – so it doesn’t necessarily improve sleep quality at all, just keeps you breathing all night. But just because you diagnose sleep apnea, does not mean you’ve found a cure. For many it’s just one more secondary ailment in a long line caused by the primary M.E., which continues to create more and more new problems until the body’s systems can finally be regulated. I recommend people get the Bipap if needed, to keep them from declining further at least while ill, and for a very small percentage this will really turn out to be their only problem.
A note, since I did not make this clear, one of the other problems with CPAP is that I was too weak to exhale against it – when I fall asleep is my weakest time, when my muscles have been completely exhausted and have nothing left. I was constantly choking and swallowing air no matter how low they adjusted the machine (hardly conducive to sleep or to good health) because I could only inhale, and not exhale. The Bipap has been a million times better for its intended purpose, as it responds to how strong my body is at the moment, not assuming it functions the same all night every night.
Great Post. Have started having problems with Mask seal Going to different blogs to see if any answers.Since I am prone to dehydration I have to get up during night to drink fluids . Using a straw but still have to dislodge mask and from then on if pressure goes up so does mask.Increasing humidity has helped alot-when mask stays on.
I am on the Quadro-X
Carole
Carole,
I like the nasal pillow type better. You can drink with a straw and it won’t affect it if you have a good fitting one. It takes a little getting used to – but, I like it better. I use Opus 360.
Issie
Thanks Issie- Can I use that with the RESMED machine also?
Sounds like it would be better. Don’t mind my mouth being covered-just breaks the seal and then I am up most of the night adjusting mask..
Thank again-will let you know.
Carole
Yes, I also have a Resmed machine. You can use whatever mask fits you the best with any of the masks.
If you have trouble with opening your mouth – you may need a chin strap. I thankfully don’t have that problem. There is a nasal mask with a built in chin strap called OptiLife. I liked it pretty well – but, the Opus 360 was more comfortable.
Someone just told me about a new one our called Wisp. He seems to like it. I haven’t seen it to comment about it though. Since I’ve been so much more comfortable with the Opus – I just stick with what seems to work. If you read reviews of headgear —many like the one I’m using.
Hope it works better for you. Didn’t know if you knew it but most insurances will let you get new headgear every 3 to 6 months. So, it may be worth trying a new one to see what may work better.
Issie
Thanks ISSIE- The TECH today sent me an e-mail after I was asking about some other masks and telling her about mine almost blowing off that “WHY DON’T I JUST SEND YOU ONE OF ALL THAT I HAVE”?- I wrote her back- sounds like a winner to me.!!
Thanks for all your suggestions. Also am considering an adjustable bed. I sleep on my side so that may be a problem-but
I can definitely see the benefits.
Thinking of changing Sleep spec also -as mine almost went to sleep talking to me the other day. He is at least 150.
SLEEP
San Diego #1
Since I don’t have an adjustable bed – lots of pillows work.
Glad whatever I said helped.
That’s a nice person at your supply co. Tell me which one you decide on. I guess my friend decided against the wisp. He went back to the nasal pillow one. Hopefully, you will find one that is more comfortable and works better for you.
Issie
Tech was being sarcastic when she said she would send everything they had. Had to laugh!!!
Carole
🙂
Thank you for including central apnea in your discussion. Blood pressure and cardiac issues are present now after 30 yrs of handling FMS. Is there a name for the combined diagnosis?
I was diagnosed first with with Obstructive Sleep Apnea about 10 months before the ME/CFS diagnosis. Seven months after the Sleep Apnea diagnosis I was sent into the sleep lab for the night because my sympthoms were not getting any better but the AHI numbers on my CPAP machine were showing that my Sleep Apnea was treated. The MD in charge of the sleep lab told me that the study showed that my brain was not entering into deep sleep. His solution was to have the tech max out the pressure on my CPAP machine. That made things much worse as I was woken constantly with a fluttering face mask or had rashes and imprints from the mask being strapped done as hard a possible. A month later I went back to my respiratory tech and begged her to do something. She went over the data from the machine for the last few months and again said that my Sleep Apnea was treated and that whatever was causing my not entering into deep sleep was not the result of Obstructive Sleep Apnea. She reset my machine and while it is not perfect sleeping with it (it never can be perfect sleeping hooked to a machine) I sleep better now.
One observation I have is that when I over do it and have a crash, my AHI number will sky rocket. Even before I crash it will sky rocket the night(s) before. I am usually around an AHI 0.6 to a high of 2.0. However, when I have gone over the line, my AHI will shoot upwards of 5.0. I’ve commented this to the MD who treats my ME, but he has never really responded to it. I am still also left wondering about the Sleep Study Lab MD’s comments that the data was showing that my brain was still not entering into a deep sleep even though my Sleep Apnea numbers were okay. I wonder if is specialty had been neurology rather than pulmonology if he would have treated it differently or proceeded with more investigation?
That pattern of your AHI numbers (what is AHI?) sky-rocketing after you over do it but before you have a crash is fascinating…
Dr. Klimas does recommend that neurologists do the sleep studies for ME/CFS patients because those studies show up more abnormalities. Be sure to check out Marti’s and Issie’s comments below.
Hi Cort. Here is the Wikipedia answer:
“The apnea–hypopnea index or apnoea–hypopnoea index (AHI) is an index of sleep apnea severity that combines apneas and hypopneas. The apneas (pauses in breathing) must last for at least 10 seconds and are associated with a decrease in blood oxygenation. Combining these gives an overall sleep apnea severity score that evaluates both number sleep disruptions and degree of oxygen desaturation (low blood level).
The AHI, as with the separate apnea index and hypopnea index, is calculated by dividing the number of events by the number of hours of sleep. (AHI values are typically categorized as 5–15/hr = mild; 15–30/hr = moderate; and > 30/h = severe.)”
My tech says anything under 5.0 is considered treated for obstructive sleep Apnea. I too find it fascinating how closely tied my AHI index is tied to me overdoing it and crashing. For me it is a form a bio-feedback. Usually it is too late for it to prevent a crash but it does tell me that I went over a line and was not pacing myself properly.
That’s amazing, John – thanks for sharing that.
Some additional things to consider in addition to Central Sleep Apnea (good point, Issie!). There are other ways of not getting the deep sleep you need beyond Obstructive and Central Sleep Apnea. You could have Heart Rate Variability, which you have written about recently. This can affect sleep tremendously. Also, autonomic dysfunction can keep you from reaching deep sleep (delta) as during the flight or fight mode, your brain signals the body to come out of deep sleep and into a lighter, less restful phase of sleep. I do not have Central Sleep Apnea and I have mild Obstructive sleep apnea (very mild) but I wake 277 times in a 6 hr night (sleep study data). While I shouldn’t expect 20% deep sleep at my age (52), I certainly should expect more than 1% which I rarely get. I also think the risk factor list is very misleading and I left my son’s sleep apnea undiagnosed which he probably has a child (a very thin boy). Then 4 years after getting his issues situated, I was tested and was surprised to find that I had similar issues (while not thin, I am slender and don’t have the usual risk factors).
Secondly, I strongly suggest a top sleep doc that utilized a PES during the sleep study. This is a tube run from the nose to the sternum to accurately measure pressures. This caught data that wasn’t caught during standard sleep studies previously.
Be aware that Ehlers-Danlos Syndrome patients (commonly mistaken for ME/CFIDS & Fibro patients) have difficulty with lax windpipe muscles and therefore can be at higher risk for sleep apnea.
For those people who have tried unsuccessfully to utilize a CPAP machine, there is a discipline called Sleep Dentistry. These specialists will evaluate your issues and refer to ENT as needed for best resolution. There is an oral device called a TAP appliance which you refer to above, which aligns your jaw for maximum airway (there are over 20 versions of these devices) and a CPAP mask can be attached to that so that there are no straps. With small nasal pillows or the newer nose masks like the Mirage FX, the claustrophobic feelings can be eliminated.
Lastly, I encourage folks to insist on an MSLT. This is a daytime sleep study that is performed after the nighttime study and it’s purpose is to check for narcolepsy. Surprisingly, my son and I have that as well and we don’t fit the standard “risk factors”. My son (23) never falls asleep during the day and I do on occasion but not in a stereotypical manner.
All my best,
Marti Z.
Hey Marti, Good to see you here! I was just coming on to stress that point and you’d already done it.
It may be that there is a problem with Autonomic (ANS) issues that may not lead directly to apnea – yet, there still could be other problems that could be associated with it and be causing issues with sleep.
Issie
Another great post. I have TMJ issues anyway and do wear a splint on the upper at night. Have been using it for years. Some of the other ones may be hard for someone if you have TMJ as it keeps your mouth in alignment. If the other pushes your lower jaw forward-it may be very painful for someone with TMJ. I would suggest you also see a Dentist that specializes in TMJ and bite issues.
They offered me the Mouth appliance-my TMJ dentist said no. Took me a year to get that straightened out.
Great Advice .
Carole
They would have been able to observe with your sleep study if there was a ceasing of breathing despite the CPAP. That would have indicated Central Apnea. Despite the force of air down your throat – if your brain wasn’t telling you to take a breath and breath in and then expel – that would have been picked up. A Bi-Pap machine allows a release of the constant pressure to make it easier to exhale. I’ve heard there is a new type of machine now – but, I’m not familiar with it. It’s specifically for those with both types of apnea and supposed to be better than the Bi-Pap for that type of problem. With Central Apnea – there can be a build up of carbon dioxide and that can cause other problems.
http://en.wikipedia.org/wiki/Central_sleep_apnea
Not that it will make you feel any better, but I don’t go into the REM sleep either – the point where your body restores itself and you wake up feeling refreshed and rested. My thoughts, and speculations on that is, because of my problems with blood pressure and circulation issues due to POTS – my body has to stay more alert to keep those other body functions working. I’m not having the issues associated with apnea of low oxygen (although at times – especially at altitude – I have to use oxygen with my CPAP) or obstruction, but still, I’m not getting restful sleep. I think that has to do with the autonomic dysfunction and my body desperately trying to keep me alive.
Issie
Issie, I wondered if you ever tried the combination of a low dose of clonazepam with a low dose of doxepin elixir, the latter taken sublingually.
That is the combination of medications that got me to have all the stages of sleep again. With just one of the drugs, no real sleep. With the two combined, I get all the stages.
Now there is no regularity as to my sleep time, and I wake up from every stage of sleep, for a second or less, to a total of perhaps 200 times in a sleep period. So, it is not a perfect solution, but massively better than no sleep for four or five days, then “crash” sleep without all the stages.
I have had sleep studies three or four times, always ruling out sleep apnea. Does anyone know if people with sleep apnea need a particular sort of medication to sleep with all the stages? Or is this another of the many unknown aspects of sleep with M.E.
You seem to know a lot about sleep, so I was curious if this was one of the medications you tried along your path of trying to get some good sleep.
Sarah
Sarah, thanks for the suggestions. I have however tried doxepin and it did the opposite of the desired response. Instead of calming me down it keyed me up and made me extremely nervous. What I do use is bentyl – which is a muscle relaxer and tramadol at night. This combination does help me. Since I have EDS, FMS, spondylitis and arthritis – there is a lot of pain that I have to tame down in order to sleep. These two things help that. I also use anti-inflammatory herbs to help with inflammation. Since I have MCAS and mast cells release at night and could also cause issues with sleep, I take allegra and 1/2 zantac and gastrocrom before bed. That really calms my nervous system down and helps with restful sleep.
I think sometimes the sleep aids – hinder sleep at all stages. It changes how we sleep. I’ve tried them too – but, felt less alert and rested when using them. Some people find tryptophan to be of help for restful sleep. I can not use melatonin – it makes for real problems for me. Uneasy, unrestful, weird sort of sleep with that one.
Oh, one thing that does help me with sleep is lemon balm. It calms one’s nervous system down. Others have found passion flower – but, that one is too strong for me. These works on GABA and is a sort of natural benzo – helping with anxiety type feelings.
Issie
my husband has a mask. When he first started using it he had a burst of energy but he can rarely use it for a full night. Fortunately his sleep apnoea is fairly mild, he was borderline for a mask. I have never managed to get testing (UK) but when I recorded his snoring/snorting he got a referral easily.
People with ME may have silent reflux – another easily treated problem that harms sleep and is under-diagnosed. http://www.webmd.com/heartburn-gerd/guide/laryngopharyngeal-reflux-silent-reflux I have this and sleep on a slope.
I have had chronic fatigue for years and fibro more recently. I did the sleep test and was put on cpap due to my oxygen sats going low but very few incidents of apnea itself. It helps some but no life changing success as some have had…perhaps in time. Both sleep studies did show that i completely lack stage 3/4 deep sleep waves. I am sure that doesn’t help with the fatigue and always unrefreshed sleep. I am only 42, delta waves are not supposed to usually disappear until 70 or so. Even with Ambien, i have insomnia as well.
Some of us with Mast Cell Activation problems have issues with insomnia. Some of my friends, that I write, and I are up till 2 o’clock in the morning (or later) writing and kicking ideas around. There seems to be a “second wind”. It’s like our brains turn on at night and we can think. A girl that told me the reason for this has mast cell problems really badly. She has done a lot of research on mast cell problems and what to do. Here is her site and some of the information she has on it and why she feels this is the case for us. (Just something else to think about, if this is one of your problems.)
http://www.iamast.com/#/medications/4564806907
“Serotonin – is released from mast cells .This can be independent of any other mediator release and serotonin receptors also trigger serotonin and other mediator release form mast cells . This appears to be in a diurnal pattern- 2 peaks in 24 hours . Where as normal patients have one release a day -This may explain why mast patients are sleepy in the day but awake at night.”
Issie
Great Posts Cort- I think now even though I am doing much better on my ResMED machine, I was checked by a Sleep Specialist/Pulmonary Dr. I would like a Neuro Dr. to double check everything. It is hard to go 7-8 hours with
the mask.I
only do 6 at the most on the machine. Then 1 during the day. Alot of us need to have our bed raised 45 degree angle also. Can’t raise mine anymore-so may have to get an adjustable bed. I do think we all need to make sure we get a machine with a Humidfier, mine wasn’t working with it in the beginning. Now it is much more effective.
There is always a chance of us choking if we are laying prone , even with the mask on. There are many more things I need to learn about it still. Still doing amazingly better.Everyone with ME/CFIDS needs to have this
evaluated-it may help alot of our problems.
Thank you,
San Diego #1
I posted on another blog here about having to raise my head with pillows. That’s for sure —NECESSARY. Otherwise, I feel like I’m smothering. It for sure makes a BIG difference.
Issie
What does this say about Dr Cheney? Was he right about the damage to her heart…presumably from sleep apnea?
I’m checking on that..She clearly didn’t have ‘heart failure’ as its generally known which is a progressive condition from which there’s no escape. (Dr. Cheney has a different definition of heart failure.). What the echo’s and other tests showed is another question…It could the echocardiogram was correct and the diagnosis was off. If the ME/CFS doctor didn’t get it right, neither did other cardiologists….
There was a few inaccuracies in the post; the ME/CFS ordered one echocardiogram and did few tests; it was other cardiologists who prescribed the other tests.
Okay, coming in late on this conversation. Can you feel me in? How does what we’ve said about apnea possibly change the DX of the person you are talking about? What “light bulb moment” did we trigger?
Issie
Just a note to clarify a previous post. CFIDS Dr. only diagnosed Heart failure from his Echo.
Nothing else. No blood tests. Nothing but talk. He was also the one that wanted me to have a $6000.00 test at a Vascular clinic. I refused. My other Dr. Conventional and Environmental and ENT I only paid co-pay. CFID alone was over $12,000.00. This has been going on for a year with his treatments only making me worse. Within 2 weeks after getting off of them, all the meds -and the Sleep Apnea machine I am better.
Now I am trying to get more used to the mask and machine.
Energy and rebound from pushing myself much improved.
Still have further way to go.
Thanks for all the great posts-Some very smart informed people on this site.
Thanks Cort.
Carole
Issie- Thanks for the Post about Carbon Dioxide. No one had mentioned that to me before. If I can’t gt any better answers from Sleep Dr. -may go to another.
Appreciate your knowledge on this subject..
Carole
Hoping it will be helpful to some. I’ve learned so many different things over the years and I try to put what I’ve learned out there so others may benefit from it. You never know what one little thing could mean for another person.
I appreciate you’re letting me know it may be of help to you. Makes me feel that I’m maybe helping others, it’s nice to feel appreciated.
Issie
Izzie- Thought you would appreciate this -since you are my new Sleep Expert. Haven’t gotten my new mask yet. They sent wrong one.
Anyway- last night I was sleeping so hard my mask had gone up above my mouth. I did not wake up. I breath alot through my mouth. My Dog that sleeps with me woke me up as I was choking. She was whining and pawing me.
I guess in a way- she saved my life. I don’t know if I would have become awake as the noise was already loud from mask and hose. Had the mask as tight as it would go. Supposed to get the other one this week.
Thanks for your input -always.
BE BRAVE-
IF YOU CAN’T BE BRAVE-
PRETEND TO BE-
NO ONE WILL KNOW THE DIFFERENCE-
WORKS FOR ME!!
Carole
Carole,
If you can’t seem to adjust to the nasal pillows or if you open your mouth with it —be sure and get a chin strap. It will be a subconscious reminder to keep your mouth closed. If the air comes out your mouth and doesn’t go down your throat —it won’t do you any good.
One of my friends is thinking he may go to the full face mask because he isn’t adjusting to the nasal pillows. But, they are not all created equal. Some are more comfortable than others. There is also a nasal pillow type with a built in chin strap called Opti-Life. I used that one for awhile – but, likes the feel of the Opus 360 better.
Also another thing that I do is instead of the 6 foot hose. I get a 10 foot one. That way the hose can wrap around your body if you hang it down in front of you, or if it put it on top of your head – hang the hose over your headboard and it can slide around as you flip and turn (if you do). It allows for more movement during the night.
Issie
I did get the chin strap today. I am going to try and use with my reg Quatro EX mask tonight. I have been worn out all day today. May have been since mask was off longer.
The main problem (I thought) was that the nose area keeps coming unsealed as soon or after pressure goes up.
This is the first time I have had mask go up above my mouth. Not whole mouth but enough where I was breathing air.
Thank for all your informed advice. It is much appreciated.
Carole
Hello to all of you,
First, I want to tell that I am francophone and my written English might be strange sometimes. Linking with sleep apnea, here is the “health road” I went through: diagnosed as depressive in 2007, I was out from work. One of my daughter heard me one night and she said I stop breathing many times during the night. Then I knew it was sleep apnea, which was confirmed. But doctor discovered something ese during that night: I also have restless legs syndrom too! Then since that time, I sleep with this wonderful little machine….I returned to work in 2010 but I still feel tired, not well in my body with such pain everywhere..I knew somewhere in my head, that we (doctor and me), were missing a big piece of the puzzle of my health then asked reference to see rhumatalogist. In January 2011, Dr. confirmed I have fibro and EM, probably since 20 years….I can’t explain how I felt astonished and not at the same time: I knew there was something strange with that huge fatigue I feel each and every day.
Since last October, I was so tired and weak that I have to give up temporary office and I am trying to improve as much as I can to return back but….I don’t know what will happen and will meet rhumatologist in September. I deal with Insurance company which is visibly trying to deny fibro/EM, something we all know.
Well, about sleep apnea and restless legs syndrom, pain everywhere with fibro/EM, nights or pm naps look like an adventure and I never know if yes or not, I will be able to sleep correctly (you know, that wonderful well rest feeling in your body?). The CPAP is doing a great job, but cannot do all, for sure. I feel sometimes like a Princess who can feel the pea and usually, the first question friends ask to me is “how was your sleeping?”… 🙂 To conclude, even if my words looks like a complain, it’s not the case. I would end in saying that here in Occident have the “chance” to know about many sicknesses such as sleep apnea, fibro/EM and to access to doctors, maybe not best of the world but at least we have some…
Thank you for your attention and have a great day!
Lina
Montreal, Quebec
I found an article on problems with the autonomic system and atrial fibrillation possibly connected to sleep apnea and hypoxia.
http://www.ncbi.nlm.nih.gov/pubmed/23622813
Issie
Thanks Issie- Tech sent me same mask I am using again by mistake. Did use chin strap -much better.
Of course I look like “Silence of the Lambs”. Anyway, Just a pain to take on and off. However, I think too my pillow (too soft is pushing everything forward on head straps. Going to try different tonight.
Just a period of adjustment.
Can’t thank you enough for all your info. Will let you know tomorrow how it goes.
Carole
It takes time to adjust and get it figured out. Sometimes, just the adjustment of the tightness of the straps determine the seal. If too tight, it can cause a leak too.
Issie
Issie- Still using same mask. Too much confusion when I am asleep to have to take chin strap off and mask off and put everything back on. I am sleeping deep and have adjusted the Humidity to 88. However , something is not right as My throat and mouth are super dry every morning about 4:30 AM and I have used almost all my water in holder. I have straps as tight as they will go when it starts to come unsealed. It is the nose area more than anything. I am on Quatro EX still. By the time I wake up- I am awake!!!! I have even gotten up and took mask off and tried to start over-by then again I am awake. Sent me a new pillow seal (same as other) Still no better. Some nights I have to just sleep without it. Hate to do that as I know it helps when it stays sealed.Talked to a different Tech yesterday. She said no one did well with the Quatro EX. I thought just the opposite from what I had heard. I am going to ask them about the Bi-Pap. I cannot use the Nasal pillow, if that is the one without mouth coverage.
Any suggestions??
Carole
I think there is a new nasal pillow one that has mouth coverage too. I have not seen it. Someone was telling me about it.
If you tighten the straps down too much – it will leak. Loosen your straps up and see if that makes a difference. I barely have my straps on my head.
How high is your pressure? Do you know your number? You must have a higher pressure and that could be drying your nose and throat out. There is an aloe lubricant that you can put in your nose and it helps with the dryness. You can’t use petroleum things as they are flammable. Do you feel like you are smothering with the humidity that high? When you are forcing air down your nose and throat, it does cause dryness.
Have you tried sleeping semi-reclined? That helps me a lot. I put lots of pillows under me.
Maybe, if you can go to the supply place, they will show you what is available and you can try on in the store the ones that may work and try a different type.
There is a lot of trial and error and adjustment when you first start with this. I had about 6 different headgears before I settled on the one I use.
Issie
Your advice makes me feel better. My throat is the main thing that is dry and my sinuses now are swollen in the AM so evidently I have everything too tight.
I am going 6-7 hours. However still wake at 3. I would like to sleep more at an incline. Can’t seem to get pillows right or not enough of them. I slide downward and of course mask moves. I now have Humd up 86 and it is better. I keep feeling like
if my mouth is dry though I am not getting oxygen down my throat.
I sleep on my side -so how would that work with pillows???
Thanks again for your gret and thoughtful advice.
Carole
I have some king size pillows and put them under my back and when I’m on my side – I make sure my shoulder goes down in between the pillows and that way my neck and back stays straight and supported. I have EDS too and can dislocate things easily – so I have to make sure I’m well supported and straight. I have a pillow that is fluffy and mostly flat that I put under my neck. I like the down-like pillows. We’ve gotten some pretty good ones, and cheap at Ross. Also, Target has some pretty good ones. No need to spend a lot of money on them – just replace them more and get the cheap ones. I also have one between my legs and one for me to cradle with my arms. I have what my hubby calls my nest. You do what you need to in order to get decent sleep. And to wake up in less pain and more rested.
6-7 hours is excellent. You are considered compliant if you use it for 4 hours.
Issie
Issie- Sorry I am so late in thanking you for your post. I am getting more or different pillows.
I have found a cheap 26 inch square pillow that I am going to use as incline and then soft ones (king on my back. I did go back to very hard Orthopedic as I have a rotator cuff problem ad it seemed to bother me more with soft pillow. Also going to try one of the the long foam wedges too.I really don’t think the pillows now are dislodging the chin strap or mask. Last night did not go to sleep until 4:00 AM mask kept coming unsealed. This was new liner that was sent me.
Did well the night before with same set up. I have been to so many Dr in the last few weeks just for rechecks that I have not been able to go back to New Sleep Specialist.
I think the pillows will help as I sometime cant seem to find a comfortable position.
Thank you for your informed advice. I may want to try the Bi-Pap but just don’t want anything anymore complicated at the moment.
Thank you again for all your help.
Carole
Glad you are finding the pillows to be helpful. Hoping, with time, you will be able to figure out what will make you the most comfortable. It takes time with a CPAP – sometimes longer than we think it should.
Issie
Isie- Can’t find the post- may have been you -but They mentioned a mask for adult and a kid size chin strap. Quatro Ex is not working. Keeps coming unsealed and am up all night.
I either can’t sleep at all or am up and have to sit or stand up to adjust mask. If it starts leaking one place and I adjust then it leaks on the chin or vice versa. Headgear chin strap is not working..
What meds did you say you were taking to help you sleep? Most for meds have a carry over into the next day-so have to have something short lived. Valium works well as it doesn’t last long. However, sometimes it does not work either.
Right now I am very confused as to what is going on. Calling the tech today to see if the
Optilife with chin strap or Opus-360 is an option. Have not been able to get to the new Dr. yet.
I am still on Quatro EX.
Thanks,
Carole
Issie- Have appt with new sleep Dr. next week. Have heard he is very thorough and will question every aspect of your sleep. LOVE IT!!!!!! Taking all my equip in also. Can’t figure out what is going on with the seal breaking so much during the night. I really don’t move around much. Pillows are helping.
Will let you know.
Thanks for all your info.
Carole
Saw new sleep specialist last week. Is not into anything to do with CFIDS to even talk about it. Did spend 2 hrs with me going over why he thinks I can’t sllep. Says I am not getting enough exercise?????? Wants me in bed no more than 8 hours total.
Is going to do sleep study n the hospital with electrodes. I think he is thorough -just on the wrong road and diag.
He did say I needed my sleep machine recalibrated as the former Dr. did the lazy thing and set it on 5 then had it go to 15-which is when it is blowing my seal. Said way too high for me. He want s to do sleep study and then reset machine
where it will stay the same pressure. Former Dr. said my ins would not pay-would not even send in. It will pay.!!!!Going ahead with the study. Ignoring the exercise area as I do what I can do. Also having extreme dizziness. Wondering if machine could cause it?? Also from at home sleep study he says my Apnea is mild. But not sure.
How can anyone discount Dizziness so bad you can’t drive??
Waiting for some answers.Don’t think I am going to find them with this Dr. Maybe with the machine pressure changed, I can use it all the time.
Carole
I was diagnosed with severe obstructive sleep apnea after about 10 years of hell with what appeared to be CFS/ME. My diagnosis was delayed because an overnight sleep oximetry test I did early on in my illness showed no significant oxygen desaturation and on this basis my doctor and I assumed I didn’t have OSA. It turns out that this test shouldn’t be used to exclude such a diagnosis.
I encourage everyone with CFS to have a polysomnograph to make sure you don’t have actually undiagnosed OSA, which is extremely common.
Cheers,
Graham
I use to snore when I drank. I have quit drinking and stopped smoking. I have several health issues. I had surgery on my back this past December resulting in 2 titanium rods and screws, I am now looking at a hip replacement. I have ITP(Idiopathic Thrombocytopenia purpura), I have asthma, degenerative bilateral arthritis, and osteoarthritis in my hands. I also have spots on my lungs and a lesion on my liver. My spouse says I am keeping her awake. She says, I am snoring, even when laying on my side. I know my body is breaking down. But the doctors don’t seem to find what is going on with my health. Any suggestions?
Are there special questions I need to be asking my doctor?