There hopefully will be a a number of people who fall into this category. We have been through the entire obstructive apnea diagnosis and treatment steps (surgeries), only to discover there are 15-20% (?) who do not respond to CPAP and the usual medications. So, I will be looking for success stories from people in this sub-group to compare meds, devices, and any treatments that have worked. Its frustrating to look like you are sleeping, but your brain is not and you have to take meds to sleep and others to remain alert during the day. I have been working with someone at Beth Israel Deaconess, Boston.
Yes I have had good response ( not terrific )with Dr. Robert Thomas at BIDMC, although it took at least two lab studies 12 yrs after my initial diagnosis. (see Dr R. Thomas paper.) (EERS) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3014237/ with nonvented mask.
Hi Gerry, I have complex/mixed as well. Yes, it's been a tough ride. I always tell people, as a colon cancer survivor - - I've had both cancer and complex sleep apnea, and if I had to choose, I would rather have cancer. At least with cancer we either die or live. With complex sleep apnea, we have to drag ourselves through life in this half-life existence.
At least comfort yourself with the knowledge that you're getting care from the team at BIDMC. I've spent hours and hours on the internet over the years, and I am confident that the team at BIDMC understands Complex Sleep Apnea better than just about anyone else in the U. S.
Good luck to you, and to all of us, on finding our way through it all.
Thank you all for these posts! You provide a critically important patient perspective on how challenging managing "complex" sleep apnea can be-and the need for more effective and streamlined treatments. Its very possible that some of the basic mechanisms that result in complex sleep apnea are different than the more "garden variety" sleep apnea, and thus need a much more tailered treatment. MyApnea may give us the opportunity to begin to work towards better solutions.
This is a great discussion about central and mixed apneas. Central apneas can occur because of many different pathologies or reasons and can have different looking patterns of breathing on sleep studies. So it's hard to find one solution for everyone who has "central" or "complex" or "mixed" central apneas. Professionals even have a hard time sorting out all of the literature.
There are many sites to visit to read about sleep apnea and every aspect of our health. The content may vary from spot on, to interesting, to unlikely, to downright dangerous. We should be cautious about taking any action or worrying about something we have read without discussion with our doctor. Our own medical problems are a mix of all the other things going on in our body and medications we are or have taken. Cures, treatments and concerns have to be considered in our own personal context. Read and learn. Then make a list of your own personal questions and concerns to discuss with your healthcare professional who knows you best.
You've expressed frustration finding treatment success or an ideal outcome. I'd be interested to hear from you what you would consider ;
Maybe by sharing your responses, we can formulate a research question to make diagnosis and treatment options better.
I live in a small city in Western Canada where there is a long wait to see a neurologist and get an overnight sleep study. Priority is given to those who either drive for a living or have severe sleep apnea.....mine is mild to moderate, but it is definitely affecting my quality of life. I can't be treated without the study since my apnea is mostly central.
Re #6 above, and request for 3 top frustrations diagnosing and treating central/mixed sleep apnea, there really is a #1. Apparently there is no way to diagnose it and then adequately treat it. I had to go through all the surgical steps to eliminate obstructive sleep apnea to find out I was in the mixed/central group. That was difficult enough in itself. Then to find that nobody really knows how to deal with it and the local best people have to experiment with each patient and can offer little hope for improvement, let alone "cure", is very frustrating. I would be pleased to see some improvement as we try different meds, CPAP machines, chin straps, sleep studies, etc. As I have had several orthopedic type surgeries, I have convinced myself that anesthesia caused the initial onset of sleep apena in some way, as it came along with the timing of the surgeries and later in life. I used to wake refreshed and never felt the affects of apnea during the day. Since my brain waves are now "cappy", I have to think that the billions of neurons that combine to make trillions of connections have somehow been affected just enough to result in the central apnea. Have I talked myself into that cause or is there any research to back it up? If there is any other frsutration with treatment, it is the length of time between appointments and variety of treatment protocols. With other medical issues I tend to be proactive and with this situation I feel there is no sense of urgency from anyone involved, although it very much affects the quality of daily life.
Gerry, You ask some great questions and have some very good observations. There are some research questions proposed that touch on some of them. One question would interest you "How does long-term chronic apnea effect brain plasticity (memory, focus, and attention deficits)?" You might want to propose one about how frustration with the length of time between appointments to manage your treatment affects outcomes. You are a champion for being your own best health advocate and continuing to work towards treating your apnea.
Hi everyone: I am new to this group but always looking to further my education on sleep apnea...I have had the mask now for 11 months and using with great results...I feel we all could use more education and I will pick up the phone speake with my doctor if I am having problems...I shoould have used this many years ago....Murray
Welcome Murray. Keep up the good work communicating with your health team. Down the road as MyApnea.org grows, you will be able to add information from your CPAP unit, fitness trackers and other devices so your unique profile is more complete when you compare your deidentified profile with others and your doctor. Stay tuned! This site should be around MANY years to help you all contribute to patient centered health care.
A question for you Murray, what kept you from taking action to get diagnosed sooner? How many years ago do you think you might have need treated?
Re 11, I think you are touching on the outer edge of the frustration level mentioned earlier, understandably from a research perspective. I'm just chatting before going out to shovel a pathway from our deck door to driveway - like finding the neurological pathway that will allow for good sleep.
The two questions you propose are based on longitudinal studies; but, as one of the subjects of the study I care more about what can we do now, this month, over the next few months. Leaving BI with an appointment for next year is not proactive and I will have been on the same four meds for another year., which may not be healthy long-term. I'm not sure I'm getting access to updated best practices and word of who is getting favorable results in other locations throughout the country. Mixed/central patients keep getting referred to forums and chat rooms. If a slight adjustment or one new Rx might make a difference, it should happen more often than yearly when patient condition has not changed. At least this is a quick reaction/observation before grabbing the shovel. Btw, for any reader, these comments are not meant to be taken as criticism, just conversation about our topic. Throwing out random thoughts that come up based on personal situation and the goals of the website.
Hello,
I am new to MyApnea.Org. I am excited to join the support group. I have similar issues. Taking an upper to work or survive doing daily activities and a downer for the insomnia. I have many questions. Top priority Is do anyone know we can go in Texas for treatment with no insurance or financial means for paying for treatment. I finally have a cpap that records but says need certain software for data to be printed or shown and last physician said could not treat me without data showing im compliant and my old cpap was said to have stop recording. So, trying to get treatment again but no finances to do at this time. If anyone need a machine they want to repair I have one or inform me where I can send none working machines. I have slept on cpap nightly since 2006 and sleep apnea getting worst each time I take a sleep study. I have more symptoms of Narcolepsy but no diagnoses as of yet. I would the privilege to be able to drive again and gain some of my independence again. Please help. Reggiewhitefoundation is a great source to go to for assistance of purchasing a cpap machine with no money.
Hi....well I had my appointment with the Sleep Dr. It was supposed to be with a neurologist but he's actually on medical leave so I saw a respirologist with a specialty in sleep medicine. It was all bit disappointing since she asked me all the questions I had already answered on a 5 page questionnaire. I now have to wait another 4 - 6 weeks to get into the hospital for my overnight sleep study. After the study we will decide together on the best treatment plan....in her words. I'm not sure if that's a good or bad thing. She did however give me a prescription for acid reflux, which was getting bad, and I am supposed to try iron supplements for a month. Apparently I am at the bottom of the acceptable range for iron and this can cause or make my restless legs worse. So we are back to waiting again....very frustrating!
I know It is a long process, Please stick with it. Was it a Pulmonologist or a Respiratory Therapy Practitioner that you saw? You will have to get use to the fact of filling out 50 page questionnaire, then doing it all over with the practitioner, You gotta love it! Hang in there I will remember you in my prayers.
I have mild central and serve OSA. I haven't found that APAP that helpful for feeling tired all the time. I had a sleep study done last Feburary and it showed that on average I was having 5 episode of central and 48 episode an hour OSA. They think the central was caused by some of the medication I take. I'm from UK
