Just started getting centrals. I had a silent stroke sometime in recent history. It was in the Pons area which is the part of the brain that transmits ‘orders’ from the brain to the body. (brainstem) I asked my ENT-sleep doc if I could try a BIPAP. Only been using it for about two weeks...big difference felt. BUT...I have been reading that it still is not the best machine to treat centrals. Cannot afford to get the AVS (?) which I have read is the correct machine.
My DME said that my centrals and apnea levels were not high enough to warrant my insurance getting and paying for it! In my Dec 2014 testing I had 21 obstructive events in a split study (7 OA events, 4 centrals and 10 HI). I also had 38 RERAS not meeting the criteria of other events ...my nightly sleep results show hypopneas and non-responding events or flow limitations (depending on which software is used) BIPAP does not mark centrals.
I signed up specifically to respond to your post, barbz. I am in a similar situation with the ASV. I've been 100% compliant with my CPAP, even for naps and use a dental appliance when I go camping, I have tried different masks, upgraded my machine, had titrated pressures, fixed pressures, added medication to help me sleep and still chronically drowsy. I am not willing to try surgery due to the poor pt outcomes and did not respond well to nuvigil to keep me awake and not too mention it is outrageously expensive. My original sleep study shows mixed apnea and yet I am only being treated for OSA. What other illness/disease is only partially treated? My MD even stated "you don't have enough central apnea episodes for insurance to approve an ASV." I've looked into buying my own machine but used ones are still $1,700 USD and some companies still want a prescription because it is a DME.
I am hoping someone reading this can recommend a specialist or pioneer in mixed apnea. I have also looked into alternative treatments and found an article today on phrenic nerve stimulation. I am not sure I want a device in my chest with wires and sensors that can malfunction. I can't seem to find any research on electro shock therapy to stimulate the nerves and desperate enough to sign up for a clinical trial. If this patient centered care movement is to truly take hold, MD's must spend more time with each patient to tailor the treatment rather than following a standardized treatment flowsheet and insurance companies need to let go of standardized criteria for approval of certain treatments.
Hi Trulyfrustrated. ASV devices are, indeed, more difficult to obtain because of the criteria required for an actual diagnosis of central sleep apnea. They are also regulated, so a prescription is required (as with CPAP, BiPAP, etc.). ASV machines generally have a wider variety of settings that must be tailored to the patient than CPAP and BiPAP machines, and using a machine with incorrect settings can actually worsen breathing. This is true of any form of PAP treatment. It would be great if physicians were allowed to prescribe the best treatment they think necessary for a patient, and they likely can. The bigger issue for most is whether insurance will pay for the prescribed treatment. As you have found, ASV devices are costly. Does a download of the data from your current device continue to show that you have central apnea? It would be interesting to see how much of your breathing issues have resolved with CPAP and what kind of events remain. Many forum users seem to like Sleepyhead software because it provides quite a bit of detail for some of the machines. I have not seen research on electro shock therapy related to breathing, but there has been quite a bit of research on nerve stimulation. The Inspire device has been discussed on the Forum, and a quick internet search will help you find some information. Best wishes, and if any Forum users can share, it would be great to read about your experiences!
As a newborn I would gasp for breath in my sleep and this continues to the present day. My older brother was a SIDS death as an infant. I was sleep tested and given a treatment that made my nose run uncontrollably, made me feel panic attacks overnight and made me feel exhausted during the day. The neurologist called me "non compliant", told me to quit the mask leave his practice and go get throat surgery. Fortunately my ENT was horrified at the idea of surgery, and a friend referred me to Dr. Thomas at Beth Israel. He saw complex sleep apnea. I use a "dead space" and oxygen and am much improved. Dr. Thomas read my records from the previous neurologist and told me that I had been hyperventilating constantly during the 8 months that I endured that treatment. Things are much better now, my good fortune.
I have several questions for anyone who has Central, Complex or Mixed sleep apnea: Do you have, or have you had any symptoms other than the usual that people with OSA have? What caused your sleep apnea, or do you have any other diseases, etc? If you are being successfully treated what sort of treatment is working for you?
Hello @ImpartialCrimsonBat4632,
It sounds like you may have "complex sleep apnea"--this refers to a condition where there are many of the symptoms of obstructive sleep apnea, but both obstructive apneas as well as central apneas occur--in fact, the central apneas may increase, at least initially, after starting CPAP therapy. (Note- obstructive apneas refer to breathing pauses that occur in association with blockage of air in the throat despite breathing efforts; central apneas are breathing pauses that occur with an open airway but when the neurologic drive to breathing is abnormal. This may occur when the brain center that controls breathing is "over sensitive" and responds to small changes in oxygen or carbon dioxide levels with large changes in breathing pattern which can result in apneas.) Many times, the central apneas get better over time while CPAP is used. However, other patients need treatment that treats both the obstructive apneas--keeps the throat open- as well as treats the central apneas. One approach for providing such treatment is through adaptive servoventilation (ASV)--this is a device that changes the amount of pressure on a breath by breath basis so that the machine provides just enough--and not too much- support to keep breathing regular and prevents central apneas. As described earlier, sometimes oxygen or efforts to maintain stable levels of carbon dioxide are used to stabilize breathing.
Note that ASV is not the same thing as Bi Level. You may want to talk to your doctor and ask whether you have complex sleep apnea and whether ASV is a good choice for you. Also please note that as described in a recent safety warning, ASV is not to be used to treat central sleep apnea occurring with heart failure.
I was diagnosed with OSA in 2009. Getting CPAP was a life-changer for a while. I lost a lot of weight I had put on. I did keep having residual daytime sleepiness. My doctors pointed fingers at each other ("It's sleep apnea!" "It's depression!"). Finally, my sleep doctor gave me a trial of Provigil, which made me feel terrible. Then he said to just drink a lot of caffeine instead. He left the practice, and the whole place shut down. My sleep got much worse, and I put on weight. By luck, my PCP switched me to Dr. Robert Thomas, who found that I was having centrals as well, which probably explained the sleepiness. I know have an ASV machine, but have to take Acetazolamide and Clonazepam at night, and Ritalin during the day. (I can't drink caffeine anymore, it makes me sick, so the original doctor's plan is out the window). Ritalin makes me grind my teeth horribly. We tried Provigil again, with the same results, and Nuvigil, which was slightly less horrible. We're probably going to try a different Ritalin-type medication to see if it's any better. I hate having to take so much medication, but I can function again, and I'm able to lose weight again, which makes me think my sleep, while not perfect, is more restorative than it had been. And my depression is non-existent when I am rested. We think I may have had mild apnea for a long time and it was never diagnosed because it just looked like depression. That might explain why no depression meds worked for me.
DeeNJai, Treating the combination of central and obstructive apneas can be challenging. Sometimes the central apneas improve once the obstructive apneas have been treated, and the body has had a chance to adjust to new patterns of breathing at night. However, some patients need specialized treatments, including machines that "adapt" to your breathing (ASV), which is different than "auto" (APAP) devices. You may want to discuss with your doctor how your breathing is apneas and sleep quality have responded to your current treatment. If you are still having apneas or awakenings at night, your doctor may want to make adjustments, including trying an alternative treatment.
An earlier post asked what the top 3 frustrations were. I have to say today I am extremely frustrated. It has been almost a year since I was told I had Mixed (complex) sleep apnea after taking an at-home test. In April I finally saw a specialist and was told it would be 4-6 weeks for a PSG. Today was 8 weeks and feeling a bit frustrated I phoned the hospital sleep lab to ask where I was on the list. Imagine my surprise when I was told I would have to wait another 6-8 months! Since my sleep apnea is mostly central I can't be treated without the PSG. I started googling and phoning looking for a private clinic even if I had to pay for it myself. I found a private clinic close by that does referrals from Drs. and is paid by our medical insurance.....wait time....3-4 weeks! Top frustration.....why wasn't I referred to this clinic instead of the hospital lab? Why did I need to wait 9 months to see a neurologist who had already reviewed the at-home test and said I needed a PSG? Why couldn't I be referred straight to the private clinic? Not to mention I never did see the neurologist since he was on medical leave, I saw a respirologist who did nothing but refer me to the hospital sleep lab. I feel like I have wasted a year of my life with no treatment yet. Fortunately I have an apt with my GP tomorrow who can refer me to the private clinic and hopefully in 3-4 weeks I will get my PSG and start treatment. It seems like there is no communication between different Drs, clinics, etc and maybe some politics going on, to the detriment of the patients. I really, really hope that treatment goes smoother than diagnosis!
Hi @TheresaS. I live in a fairly small city in Western Canada. I've never had any problems getting good health care before but I guess I've never really had any major issues before. I've been reading a lot online lately and Sleep Disorders seem to be kind of a neglected area of health care compared to some other diseases, etc. I am feeling better today....I saw my GP and she referred me to a private clinic nearby that says they can get me in for a PSG in 3-4 weeks. So lets hope they're not fibbing!
I had the weirdest, most frustrating and confusing day yesterday when I went to see the sleep Dr. for the results of my PSG. He said there were no significant apnea events on my test. How can that be when the at-home test a year ago showed I had mild to moderate complex sleep apnea but mostly central....and it was read by a neurologist! The Dr. at the sleep clinic couldn't really explain it either other than to say that some at home tests are unreliable....no, really! However the test did show fairly severe leg twitches and I already knew I had restless legs. The Dr. said that alone is enough to disrupt my sleep and make me feel like crap every day. So I am very grateful I don't have to wear a mask but I do have to take medicine for the restless legs/plmd. I am trying Mirapex...starting with half a pill and upping it by half a pill every 3-5 days until it works, with a checkup in 6 weeks. If it doesn't work or I have bad side effects I can see him any time. If this doesn't work we try something else. The Dr. was very nice and said not to worry, that we'd figure it out. I'm sure we will eventually but sometimes it takes a long time to find the right medicine or combination of medicines. I've also had some weird reactions to medicines in the past. So last night I started with 1/2 a pill and so far it didn't help....had a really bad sleep.....maybe tonight? I'm still having a lot of weird neurological symptoms too so back to my regular Dr. Sorry about the long post but I'm still a little confused.
So although I guess I don't have sleep apnea I hope I am still welcome here...... I tried the Mirapex for 7 days and not only didn't it help but my insomnia was worse and my RLS was much, much worse. I went back to the Dr. and was put on clonazepam (Klonopin). I don't think it will do anything about the twitches in my sleep but it will calm the restless legs and make me fall asleep. So far it is definitely making me sleep. The problem is that it is making me sleepy all day. I am grateful the RLS is better so far but I actually feel sleepier and have less energy than before. Has anyone else had experience with Klonopin? Will the sleepinees / lack of energy wear off in time?
Jorja,
Glad to hear that things are soring themselves out. Please continue to be part of our community- we need to learn about problems getting the right diagnosis. Technology is changing how diagnoses are made, and your story is very important. Also, so many people suffer from more than one sleep problem, that it would be great to learn from a diverse group of people.
If your sleepiness continues, please talk to your doctor. Its not uncommon that medications require adjustments over time.
@Jorja:
I'm on Klonopin for RLS and I seem to remember being told (and experiencing) the sleepiness hangover gets better by a lot, after some time. For me it was a few weeks. I can now take Klonopin in the morning if I want and don't get sedated. I remember Mirapex before that. Mirapex is bad for me and a lot of my friends. It really made my RLS worse!
I am very new and am just responding to your last posts to feel like I can be of help right away. I hope this helps supportively. I like Klonopin very much, and take a low dose with no drugged feeling. Iron has been a miracle for me. First I got the "Ferritin" blood test and was bottom normal, and took 325mg ea.day. The very first day I felt so much better I could have gone on a crying jag.
There's an interesting view I adopt and hear often, but it's a little paradoxical. When I began to get better rest I ironically felt more sleepy. Personally I see it as a result of having been "running on fumes", then, beginning to know true rest, therefore craving it more. But dr's explained it to me: You have a lifelong sleep debt. You also have a situational (this week) sleep debt. You may feel better tactically (this week) from a little good sleep, but now your body wants to heal, it's going to need to repay that lifelong debt. IMHO, either explained technically or as a craving: once your body knows it doesn't have to prop itself up any more, it slumps, as if you always were that sleepy. Like, once you start curing a problem, you really feel it's worst effects. I think that's one reason Klonopin starts off worse.
I still have massive circadian trouble. But after paying some of my "debt", whenever in the day I go to bed the restorative effect is more clear. I wish it could be like when I was 6...
Thanks for your information. I've been taking Klonopin since the middle of July and hopefully like you said the sleepiness will wear off. I suspect there is also something else going on since I have a lot of weird neurological symptoms. I do love that I go to bed and within minutes of putting my book down I'm asleep, usually for the entire night....no more insomnia, no more walking the floors. It seems to help my RLS in the daytime some as well. We are on the last night of a road trip and my legs aren't anywhere near as bad travelling as there were before. My iron was also borderline low and I've been taking supplements. So far I don't think it's made a difference but I get it checked again this week. This is the first night of decent internet in about 10 days....finally....LOL! Thanks!
Hi I'm new to this forum, (just joined yesterday) I must say I am kind of taken back by all this discussion on mixed and complex apneas. They have had fairly good treatment out for these apneas for quite a few years now. I know when I was first diagnosed with sleep apnea back in January of 2007 I had a great deal of problems getting adequate treatment! I was originally diagnosed with Obstructive Sleep Apnea, and was started off on standard CPAP machine. This machine did very little, to help my condition, and I continued to have bed drenching night sweats and waking up in the night choking and gasping for air, even with my mask and machine on! Anyway to make a long story short, in a period of just less than a year and a half, I had under went five full in lab sleep studies, I had several pressure changes, and went from CPAP to BiPAP to BiPAP with O2, and none of this helped! Well finally in April of 2008 my sleep apnea doctor who was a neurologist, got sick and I was transferred to the care of a Doctor in Pulmonary Care Unit who was in charge of the Sleep Study Unit. Anyway after his thorough review of my case, he recommended a ASV titration study and said according to my previous studies that I should have been given this ASV titration study right at the very beginning! Anyway in May of 2008 I had the ASV sleep titration study done and was put on the ResMed VPAP Adapt SV machine, with 3 liters of O2! The rest is history, within two weeks or so the bed drenching night sweats disappeared, and within a couple of months the dreaded sleep apnea brain fog also lifted! And I was no longer getting up every hour and a half going to the bathroom! I could actually go six or more hours at a time without having to go potty!
This was all seven or more years ago! Back then the ASV technology was new, ( at least to here in the states) in fact I had found out later on that is why my first sleep doctor refused to prescribe it, as he felt the treatment was to new and unproven! But now I am presently sitting here reading all these post, and it is like nothing has changed in all these years!!! At least in the treatment of Central and Complex Sleep Apnea! Admittedly these apneas can be difficult to diagnose, and to some extend difficult to treat, but they do have effective ( at least for some if not most) treatments for this condition!
Anyway I just thought I would pipe in and give my two cents about this topic. Funny how the more things change the more they seem to stay the same??? At one time back in 2007 and 2008 I was fairly active on the old Sleep Apnea Support forum. I am a big supporter of Sleep Apnea treatment, when I finally got the proper treatment, it literally changed my life! So my advice to anyone having problems with their sleep apnea treatment, is don't give up, persistence and perseverance is the key here, keep pushing for a resolution, of your problem! There are treatments that work!
I have a mixed condition, mostly central apnea. I have tried CPAP and now trying BIPAP. I am having a terrible time! I already suffer with nighttime nasal stuffiness and have a deviated septum. Using a full facial mask just adds to this and makes me feel like I am suffocating! My central apneas have increased despite my respiratory therapist adjusting the pressures. Any one else experiencing this?
