04-01-2023, 12:00 AM
Mask issues that aren't covered in the standard Q&A
Hello!
I recently got a new CPAP and mask and am trying to make a fresh start of CPAP therapy. I tried to start a good 7-8 years ago, but had to make do with a donated, non-humidified machine and increasingly brittle silicone around the edges of the mask because I didn't have insurance and couldn't afford replacements. So new machine = much easier to tolerate, plus I've had EMDR psych therapy for my medical PTSD from having a pulmonary embolism and have stopped having such bad claustrophobia.
Buuuut in the the years since, my OTHER health issues have been growing and multiplying like weeds. I can't just blame it on sleep apnea, either. Since 2020, I have had cervical spinal surgery (ACDF c6-c7) and been diagnosed with a slew of chronic illnesses.
The relevant ones for this forum:
hypermobile Ehlers Danlos Syndrome
fibromyalgia
orofacial dystonia causing TMJD-esque pain--later incorporated into the diagnosis of generalized dopa-responsive dystonia
non-length dependent small fiber neuropathy
cervicogenic and often atypical migraine
postural orthostatic tachycardia syndrome
mast cell activation syndrome
psoriatic arthritis.
With their powers combined, I have multiple points on my scalp and face that are extremely tender to touch and pressure. Some are around sinuses, others where lymph nodes might fall, and then there are the ones where muscle/tendon/fascia meet. As you might imagine, I have a hard time with the headgear and mask for my CPAP. I have asked for a new mask, and in theory they are sending me one, the Liberty Mirage. I am hoping this will help as it is the least reliant on pressure that I have been able to find.
I can obtain temporary relief from these sore points with manual release and/or dry needling at my physical therapist, but it doesn't last for long. They also influence how I am able to sleep, and I generally do best on my side, but masks that will allow my face to be supported by a pillow and still seal are rare. I have looked at the oral-only, but suspect that the angle it holds your mouth at will also end up with morning pain. I'm hoping that my skin will be ok with the material on the Mirage, because I can tell it is annoyed by the f20. It's spring here and my mast cells are super angry about it; I'm constantly vaguely itchy and often end up with hives. If the skin irritation was my only problem, I'd be trying the memory foam or gel type cushions. I don't see memory foam or gel cushions available for minimal-touching masks though.
Does anyone else have these issues? What has helped? Even if you haven't, I'm open to brainstorming.
Mull
I recently got a new CPAP and mask and am trying to make a fresh start of CPAP therapy. I tried to start a good 7-8 years ago, but had to make do with a donated, non-humidified machine and increasingly brittle silicone around the edges of the mask because I didn't have insurance and couldn't afford replacements. So new machine = much easier to tolerate, plus I've had EMDR psych therapy for my medical PTSD from having a pulmonary embolism and have stopped having such bad claustrophobia.
Buuuut in the the years since, my OTHER health issues have been growing and multiplying like weeds. I can't just blame it on sleep apnea, either. Since 2020, I have had cervical spinal surgery (ACDF c6-c7) and been diagnosed with a slew of chronic illnesses.
The relevant ones for this forum:
hypermobile Ehlers Danlos Syndrome
fibromyalgia
orofacial dystonia causing TMJD-esque pain--later incorporated into the diagnosis of generalized dopa-responsive dystonia
non-length dependent small fiber neuropathy
cervicogenic and often atypical migraine
postural orthostatic tachycardia syndrome
mast cell activation syndrome
psoriatic arthritis.
With their powers combined, I have multiple points on my scalp and face that are extremely tender to touch and pressure. Some are around sinuses, others where lymph nodes might fall, and then there are the ones where muscle/tendon/fascia meet. As you might imagine, I have a hard time with the headgear and mask for my CPAP. I have asked for a new mask, and in theory they are sending me one, the Liberty Mirage. I am hoping this will help as it is the least reliant on pressure that I have been able to find.
I can obtain temporary relief from these sore points with manual release and/or dry needling at my physical therapist, but it doesn't last for long. They also influence how I am able to sleep, and I generally do best on my side, but masks that will allow my face to be supported by a pillow and still seal are rare. I have looked at the oral-only, but suspect that the angle it holds your mouth at will also end up with morning pain. I'm hoping that my skin will be ok with the material on the Mirage, because I can tell it is annoyed by the f20. It's spring here and my mast cells are super angry about it; I'm constantly vaguely itchy and often end up with hives. If the skin irritation was my only problem, I'd be trying the memory foam or gel type cushions. I don't see memory foam or gel cushions available for minimal-touching masks though.
Does anyone else have these issues? What has helped? Even if you haven't, I'm open to brainstorming.
Mull
WARNING: It may take a while to sink in...I tend to get befuddled at times.
