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Wakeing Apnea? is there such a thing?
Hi, I have had sleep apnea all my life, my sleep apnea is moderate to severe now, I stop breathing 50 times per Hour/Minute? (I can't remember which it is),
I have also been diagnosed with an Auto Immune desease called "Sjogren's Syndrome" that I have seffered with for the past 7 years, this illness has dried out my mouth and severly hampered my salivia glands ability to keep my mouth moist, I have suffered teeth decay as well due to the extreme dryness, (which is why I can't use the CPAP mask at all, it simply dries out my already extremely dry mouth, which is also due to my diabetes)
this illness has also physicly altered my throat and face so that now my breathing stops on the OUT breath!, where as before, and all my life, it has been on the IN breath,
The Sjrogren's Syndrome has narrowed my nasal passenges as well and I find it very hard to stay asleep if I can fall asleep at all, I cannot use the sleep mask and cannot get any doctor to help be because I have been labled, which happens a lot with people with Auto Immune illnesses, because doctors can't find any clear reason for your complaints so they start to think its all in you head and lable you, which follows you where ever you go so now at this point, no doctor will help me, now what?
By the way, I have had sleep apnea since around 1 1/2 years old along with "night Terrors" that I beleive are dirrectly caused by the sleep apnea, Epilepsy and diabetes since I was 15 and 16 years old, and now have suffered with Sjogren's Syndrom for the past seven years, I am 43 now, so I don't know how any credible doctor could possibly lable me when I have had all these terrible illnesses to deal with all my life, who would make up another illness when they already have so many others? Quacks!
I beleive that I now have what I can only call "Wakeing Apnea" along with my sleep apnea, Is there a name for this? it is common? what can be done to open my airway? I don't trust these Doctors here in the Pittsburgh area to even do the surgery on me.
My brain barely functions, I simply am not in my own life anymore, I feel like a zombie just existing, but not really living. I am up till 7 - 10 am every night and only sleep a little when my body gets so completely exhausted between 7-10 am and 3 pm.
can anyone help me? Please? I can't get any doctors to help me, I don't know how much longer I can live like this.
Sincerely,
Robert
Views: 75
Replies to This Discussion
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Permalink Reply by Mary Z on
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Robert, you should probably search for new doctors, doctors who will take you history into account and go from there. You definitely need medical intervention at this point from emphathetic Sleep Neurologist, Sleep Doctor, or pulmonologist. Maybe even start with a new PCP and explain your situation. When you make an appointment tell them you may need more time with the doctor.
Sjogrnes syndrome is certainly a terrible disease that manifests in many ways, what type of doctor do you have treating you for that? I would take one issue at a time, don't expect to find a doctor who can treat you for everything. Simply list your illnesses in your medical history The sleep apnea seems to be causing the most trouble right now, but is so connected with the sjorgnes that it's hard to separate. List your illness in order of their impact on your quality of life, are your diabetes and seizures under control? If so, leave them to last to deal with.
I would see a good ENT to address the throat and nasal issues, A sleep doctor at the same time, or sleep surgeon, pulmononologist or just a sleep doctor. Try to find one on SleepGuide or by word of mouth. Deal with the sjorgnes in the ways you have learned, sugarless gum, pebbles in the mouth to promote saliva (just a few smooth clean pebbles), excellent dental hygiene, maybe a humidifier in your room or the whole house, toothpaste and mouthwash for dry mouth- I'm sure you have many remedies in your arsenal
Now for CPAP, you do have a few choices, surgery may help to some degree, there are dental appliances you can try ( go to a dentist who specializes in these). Do you have a humidifier on your machine? A humidfier in the room?.
I can't tell you where to start- maybe a sleep doctor who can refer you to other specialists.
Remember, one big problem at a time, no one doctor can solve all your varied problems.
You definitely need to be doing something about your sleep apnea. Can you wear it half the night? Gradually increase the time. Ask your DME if there is a mask that is less drying.
The most important thing I have learned dealing with doctors is to deal according to what has the most negative impact on your life first. Bring one problem to each appointment, make as many appointments as you need.
Hang in there, try to get going with the CPAP. I can see why you're at your wits end. These are serious illnesses with great impact on the quality of you life.
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Robert I just realized I didn't adress your "waking apnea", but there have been a number of people discussing the same thing lately. I think it remails a mystery why some people don't breathe regularly during the day Also, if you're not doing this plenty of saline nasal spray may help your nose
Mary Z said:Robert,
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Permalink Reply by amott1973 on
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I don't think I can add much to what Mary said, but maybe one of the Ayr gels would help with the dryness too? I'm not sure what kind of masks you have tried, but I'm wondering if a nasal mask, or nasal pillow mask might at least help by not drying out your mouth more. Maybe that with a nasal pillow or nasal mask could be tolerated?
I do hope you'll keep trying and find some doctors who are willing to work with you. As miserable as I know sleep apnea to be I can't imagine how hard it is to deal with the rest on top of that.
Good luck!
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