Mayo Clinic Connect
Help! Does anyone else have central apnea? Im having alot of trouble with my bipap machine, in truth its in my closet, which i know is sooo wrong. Does anyone know any alternative treatment?
what is central apnea?
its another type of sleep apnea. instead of your breathing being interupted by obstruction its interupted by the brain somehow. noone seems to know how or why. at least none of the drs i’ve asked.
were you diagnosed with central sleep apnea?
I have a machine and use it, but I find myself waking up breathing heavy. As I fall back to sleep, I can actually feel like I need to breathe, but I don’t, which wakes me up fully and THEN I begin breathing. It’s like I can never fully fall asleep. Is that something similar to what you have?
I would love more information on this if you have any. thanks for your reply.
So what machine are you on to help you? Our group spends months looking for answers to weird symptoms & even though USA has a lot of researchers, it is expensive to search med journal. We end up asking other countries like Germany, Great Britain, Israel21c, so far, if I can get our network to help me get either the United Hayek machine, or the Avery respiratory pacemaker, you do not know if one or another might help, both FDA approved for Medicare, etc. if they do not work, at least I’ve tried. I am not looking for freebies, just to keep my breathe of life going. I don’t want to end up in a nursing home just to get rid of me from taking up room in the ER every time I pass out during a bad episode & they do not have someone that is curious enough to ask why. In our state, a patient that stops breathing, they call for the EMTs because they do not do intubation. If you believe something is still wrong, keep looking, as Dr. Oz repeats all the time. So does the show, “Mystery Diagnosis” and do not forget the show “House”.
You are so right. Same area being studied by Hayek and Avery. They are trying to tackle this huge problem, like a few million people have & do not know it. Their equip. Helps CP, CCHS, diaphragm, polio symptoms returning, even incomplete quadriplegics, brainstorm injury, asthma, heart failure, primary alveolar hypo ventilation, diaphragm problems, for victims from chemical or fire disasters, neck damage–from babies to those suffering from strokes or head injuries from accidents. A huge medical supply co. made over 30 billion, I wonder how much they donate for research to get people off some of their products? My Godfather was a GP, he was pleased when he could find the ailments and get a patient healthy enough not to need him, medicine for him was a way to keep a whole family together and well even if he lost money–he said his reward was seeing the happiness in their faces which no amount of money could buy.
For some, it is like you are sufficating, can catch your breathe, even when on a PAP machine for obstructive sleep apnea where you can just stop breathing during REM (rapid eye movement) stage of sleep. Central can happen while on PAP equip., worse is when the sufficating episode happens when you are awake. For some central patients, they also end up with heart failure. I think United Hayek explains it better. Tests show it has improved blood flow and as a bonus, help the heart too! it seems the nerve central just doesn’t make the right connections at the right time or when it should. That is what happens to those like Christopher Reeves, he needed help to breath. Same thing for those that got polio in the 40s to the 60s. Some adults that had polio as a child around 1950, have found some of the symptoms have returned & Hayek has helped them. CF patients have similar problem, but it boils down to the messages getting mixed up or damaged. One patient had her head stuck between the hospital mattress and side rail for over 3 hrs. her neck injury even broke her false teeth & could reach call button. Her own aide showed up to save her, but now needs a ventilator, so she is looking at the two companies we have found so far. I think she will go to England to get off the trach. The other central type is when the diaphragm doesn’t work right & patient is suffering with chronic respiratory insufficiency, some with strokes, quadriplegics, etc. sometimes needs more aggressive measures and get a respiratory pacemaker. Of course, all my answers do not mean to cure or diagnosis people. You need to find a specialist that knows his or her stuff so you can live a more normal life. But few can find or afford any medical help. Look how hard our former VP went through to final get a transplant, but being average John Doe, or not a cute 3 yr old that makes the news, we have to do our own homework and have people try to sift through the good & bad on the web and avoid the snake oil salesmen.
there isn’t any alternative treatment until now. You must use your bipap machine. If you are having any problems with it, you should consult your sleep apnea specialist. it is really important to use it, otherwise you are threatening your health.
It is two different disorders, have bi, v, & c. Machines–I kept waking up suffocating while on mask. Need cardio & plumo docs. My nerves are not triggering me to exhale/inhale correctly. Check on united Hayek for help also there is a breathing pacemaker by Avery biomedical devices. I am in NY only a hand full of docs know how dangerous this could get. Horrible feeling, then I get headaches from being oxygen deprived. Get family to help you to search & find someone that doesn’t think you are a nut. Blood gases can be normal after attack, oximetry only helps IF that feeling is long enough to trigger alarms. One doc in CA kept his patient on holter monitor for a week to catch the disorder. I am fighting paperwork & overworked ERs to get more than oxygen and/or v-pap, let alone, someone that knows the connection between heart, brainstem, respiratory muscles/nerves & obstructive sleep apnea. I have been told that many stroke patients on trach, end up on ventator when there are alternatives for hypo ventilation, diaphragm paralysis. Ask Mayo what is their protocol. We need more docs that look for cause & not just treat the complications.
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