Can you folks help me untangle this?

[SuperSleeper]

I am so glad to have found your forum .

I have several health issues that interact with each other, and make it hard for me to figure out what to do. I'm hoping that if I lay it all out, some of you will have some suggestions. So, here goes .

I have:

1. Sleep apnea.

2. A problem with muscles, tendon, and ligament tissues. It seems to be genetic (my sister and grandmother also have it, and for each of us the onset was at age 18), but we have not been able to find a doctor who can pin a diagnosis on it. It may be a form of Ehlers-Danlos syndrome.

Anyway, what matters is that I injure these tissues easily and they heal slowly and incompletely. For example, if I fall I am more likely to sprain my ankle, and the sprain will take several years (rather than weeks) to get partially better, and will never heal completely. I will be on crutches or in a wheelchair for life.

This affects my sleep in two ways. Firstly, I have (by quick count) 37 such injuries. So finding a comfortable position is difficult, and many positions are impossible.

Secondly, I have to be careful not to sleep in a way that causes new injuries. You know how sometimes you wake up and, for example, your wrist hurts a little? You wiggle it around and say, "hmm.. I must have slept on it funny." And it gets better. Only, with me, it never gets better -- and then I can never lift a cup one-handed, or write normally, or whatever that injury prevents me from doing.

3. Something that seems to be mononucleosis. At least, I feel the way I did when I had mono some years ago, and blood tests show I am positive for all 3 viruses that can cause mono. But the tests are inconclusive as far as whether the viruses are currently active or not, and the results are the same when I am feeling extra-sick and when I am feeling a bit better, so it could be something else. My doctor is unsure, and wants to run more tests, but I am too sick to leave the house most months, so testing is difficult to arrange. This has been going on for two years.

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I think the sleep apnea may be a key to all of this.

Before the mono started, I had been telling my docs for 15 years that I thought my problems with healing from injuries had something to do with not getting enough oxygen while sleeping. But I'd never heard of sleep apnea, and somehow they never thought to suggest testing for it. Maybe because I am skinny, and lived with a partner?

A year ago, though, I met a friend who has apnea, and, hearing his description, I realised that's what is going on with me. I start to fall asleep, or I sleep for a second or two, and then the back of my tongue relaxes against my throat and I can't breathe and I wake up. The lack of rest and oxygen could contribute both to my difficulties in healing from injuries, and in killing off the mono viruses (or other pathogen).

So I was all excited about this possible solution. Maybe I could get my life back! My health insurance doesn't cover a sleep study, and, being unable to work for two years due to the mono, I couldn't afford the $3,000 out of pocket. I asked my doc if I should just get a CPAP and try it. She said yes, so I found one on craigslist, got new masks, and, with help from your site and my apnea friend, set it up.

Uh-oh. Somehow, in all my reading and research, I hadn't grasped the idea that, with the CPAP, I would have to exhale _against_ the incoming air pressure. One of my more severe injuries is to the muscles around my diaphragm: There is no way I can breathe against pressure like that.

Ok, back to the drawing board. What else can one do for apnea? I looked at pictures of all the oral appliances I could find, but of course they depend on pressure or leverage against other parts of one's face or head, and I can't do that.

I think positioning could help me, if I could sleep on my side. But my injuries currently prevent that, probably for the next year or so. I waited a year for one injury to improve enough, but in the meantime I got another when my washing machine overflowed .

Drugs are also an issue. I take tiny amounts of muscle relaxants, most nights (I tend to be sensitive to drugs, so I take about 1/10 the normal dose). If I don't take enough, my muscle spasms keep me awake all night. But, of course, relaxing skeletal muscles leads to worse apnea. I do spend 10-15 minutes each night shaving tiny specks off the tiny fraction of a pill that i intend to take, titrating the exact amount I think I will need based on that night's pain level, so that I don't take any more than I have to. But there's a lot of guessing involved.

Even with drugs, it takes about 3 hours for me to find a comfortable position and fall asleep, though I am exhausted. Difficulty with hypothalymic functions like sleep are also a mono symptom; that's part of it, probably.

I've tried a few different drugs, looking for one that will help with muscle spasms without making my apnea too much worse. I'd welcome suggestions!

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So, what do I do, here? What can I try next? I could see about going to a sleep doc, some month when the mono is less-bad enough that I can leave my house. But I'm impatient with waiting for that to happen, and I kind of get the impression from reading threads here that many of you folks are more familiar with the range of possible solutions, and more experienced with debugging difficult cases, than my small-town doc would be .

Thank you so much for reading this massive tome, and for any ideas you have about things I might try. I want to get some frickin' sleep!

[SuperSleeper]

Nila. Welcome to Apnea Forum.
Apologetically, I don;t think I have any suggestions that might help your cause. But I wanted to acknowledge your efforts, to search out a suitable solution to your sleep, by posting here on the Apnea Board.

You have taken a great deal of time to openly share your health problems with us and I truly hope that any posting by anyone here, has a positive effect on your life. Your complex health issues seem overwhelming to most of us, to say the least. The complications of your diseases certainly appear to limit what most folks may consider a simple solution to sleep, and that is via the use of a CPAP.

However, I think that all is not lost in that endeavour. With your access to the internet, and I'm sure you already have been reseaching articles about CPAP machines and the way they operate, much information is available. That is why I think that there is a great possibility, that you can receive some help in that regard thru CPAP therapy. With the way the new machines are now; able to sense and provide continous air flow; reduce pressures through exhaleration settings, I think that a good qualified sleep specialist can help you get some quality sleep. Perhaps a BiPap machine, which adjust pressures to inhale and a different pressure for exhale can be of help.

I encourage you to search out a top notch sleep physician and see what he can do for you. Good Luck in your pursuits.

[SuperSleeper]

Many (most?) CPAP machines have a way to cause the pressure to decrease when you exhale. The doctor and or DME (machine supplier) should be able to advise you about the machine with best system for that relief.

[SuperSleeper]

Hi, JudgeMental and Clay .

I didn't realise that there are machines that decrease the pressure on exhale. Are there any that make it so there is no pressure at all? Are they expensive?

Most CPAP can do is to reduce pressure at Exhale by 3 cmh20 for example using EPR at 3 with pressure set at 10 evey time you exhale the pressure would drop to 7 on the other hand BIPAP machine the diference between the inhale and exhale pressure can be set higher than 3 but you need a sleep study to determine that . They are more expensive but you need a prescription to purchase any XPAP machine and really it is not safe and can be dangerous to use a CPAP machine without being diagnosed with OSA and sleep study as pressure can cause central apnea in some people where the airways is open but no attempt to breathe .

[SuperSleeper]

Several things:

- Have your doc let your rent an oxygen meter (it fits over your fingertip). You can rent one from the local CPAP place. They can do a report of the results for your doc. This will, without a doubt, tell if you are low on oxygen at night and, I think, the time span it occurs (meaning for how long it was low and how many times). Whether it is sleep apnea or not, there's no way to tell that without a sleep study or a high end machine that records and reports apneas.

- I have Ehlers-Danlos Syndrome, hypermobility type. There are several types but the hypermobility type is the one that is centered around joints. However, it doesn't sound like this is what you have, if I am understanding what you are saying. EDS is a connective tissue disorder where the collagen is hyper-elastic. The different types are based on what part(s) of the body are most effected. There are overlapping between types because each person is slightly different in how they live their lives. With the hypermobility type, for example, there are joint dislocations, subluxes (near-dislocations), hyper-extending, as well as extensive scarring on the skin, skin sensitivities, eye problems--the list goes on. Recovery time from injuries are not overly prolonged, more like they never get back to where they were before due to the damage and side effects such as osteoarthritis. I have never heard of anyone with EDS taking a year or more to heal. A sprained ankle would normally take, say, 6 weeks to heal for normal folks, and 12 weeks for someone with EDS. An ankle that is repeatedly injured would become weaker due to the muscles, tendons, and ligaments being stretched to their max and I can imagine that healing would begin to get longer eventually. Injuring yourself once and taking a year to recover does not sound like EDS, from my experience with this wonderful condition.

- sleeping positions is important and sleeping on your side is best. However, sleeping in a slightly raised position would be good as well. The idea is to change the direction gravity pulls. Sitting up, gravity would let the muscles relax DOWN vs back. Many people say they used to only be able to sleep sitting up in a recliner until they got their CPAP.

- if you are having this much difficulty, and if you live in the US, I would strongly urge you to file for disability. While Medicare is not a wonderful insurance plan, it is still insurance. Their goal is to get you back to work and if doing so means helping you get diagnosed, get equipment, and get you a sleep test and CPAP, then they will do it. Some folks are eligible for disability for just a few years until they are treated enough that they can return to the work force. Even then, the Back To Work program now covers you for an extended period, allowing you to keep your insurance while you try to work again.

- and finally, keep your head up. Depression does not make things easy. Surround yourself with positive stuff to keep your energy going.

[SuperSleeper]

What particular CPAP machine do you have?

What have you set your pressure at?

I believe you can probably adjust to the pressure even with diaphragm problems. It may take a while, but your muscles should eventually build up to where you won't notice it.

[SuperSleeper]

PaulaO's suggestion about the O2 monitor is a good one. If your O2 saturations drop during the night maybe oxygen would be just as effective as CPAP. As other forum members have stated the EPAP does not have to be high, or even the IPAP might not necessarily need to be high. Have you tried your CPAP and found you couldn't breathe out against it? I know many people believe a pressure of 4 is too low for inspiration to feel comfortable, but it might be enough for you.
It'a great PaulaO has experience with Ehlers-Danlos Syndrome (NOT great that she has it) and since your symptoms are not the same perhaps you can continue your research about what illness you most likely have (not that you're necessarily wrong).
Good luck. Keep us posted.
Oh, by the way- there are apnea detectors that you wear for one night- one is available on Amazon and is called the "Sleep Apnea Test- Home Test by Nasivent" for $50.00. You wear them for one night and it gives you test results in the morning. It tells if you have sleep apnea syndrome. There is supposed to be a video - just look for "Nasivent home test" in Youtube.

[SuperSleeper]

Hello folks, and thanks for your replies! I'll answer Paula's wonderful long post here, and the others probably combined in a second post. I sure appreciate the thought you all have put into my problems .

--

@ PaulaO:

'- Have your doc let your rent an oxygen meter (it fits over your fingertip). You can rent one from the local CPAP place. They can do a report of the results for your doc. This will, without a doubt, tell if you are low on oxygen at night and, I think, the time span it occurs (meaning for how long it was low and how many times).'

Oh, great idea; I will do that .

'Whether it is sleep apnea or not, there's no way to tell that without a sleep study or a high end machine that records and reports apneas.'

I am aware of my tongue falling back and stopping my breathing, and then me gasping for breath, every few seconds when falling asleep, also of waking many times in the night gasping. So it seems pretty clear to me that it's apnea. Is this incorrect?

'- I have Ehlers-Danlos Syndrome, hypermobility type. There are several types but the hypermobility type is the one that is centered around joints. However, it doesn't sound like this is what you have, if I am understanding what you are saying. EDS is a connective tissue disorder where the collagen is hyper-elastic. The different types are based on what part(s) of the body are most effected. There are overlapping between types because each person is slightly different in how they live their lives. With the hypermobility type, for example, there are joint dislocations, subluxes (near-dislocations), hyper-extending, as well as extensive scarring on the skin, skin sensitivities, eye problems--the list goes on. Recovery time from injuries are not overly prolonged, more like they never get back to where they were before due to the damage and side effects such as osteoarthritis. I have never heard of anyone with EDS taking a year or more to heal. ... Injuring yourself once and taking a year to recover does not sound like EDS, from my experience with this wonderful condition.'

Yes it's true that I don't fit any of the types exactly, as they are currently divided. But how they are divided changes. I do have the frequent subluxations (many times per day), skin sensitivities, and eye problems. But it's really not clear *what* I have. After 25 years, I've kind of given up trying to find out; I keep an ear open for new ideas but don't often actively seek them. It just is what it is, as they say.

'- sleeping positions is important and sleeping on your side is best. However, sleeping in a slightly raised position would be good as well. The idea is to change the direction gravity pulls. Sitting up, gravity would let the muscles relax DOWN vs back. Many people say they used to only be able to sleep sitting up in a recliner until they got their CPAP.'

I think this position would work for me, but I couldn't stay in it longer than about half an hour per night, due to the joint stuff. Frustrating.

'- if you are having this much difficulty, and if you live in the US, I would strongly urge you to file for disability.'

I did, and went through ten years of appeals with a good lawyer. But without a diagnosis, it seems to be impossible.

'- and finally, keep your head up. Depression does not make things easy. Surround yourself with positive stuff to keep your energy going.'

Thank you . I think I am doing pretty well with that .

[SuperSleeper]

Hmm... Anybody know why I can't get quotes or italics to work, in my above post? I'm using the newest Firefox, and I checked to make sure NoScript wasn't blocking anything.

--

@archangle:

'What particular CPAP machine do you have? What have you set your pressure at?'

I will check and get back to you. I packed it away in storage.

'I believe you can probably adjust to the pressure even with diaphragm problems. It may take a while, but your muscles should eventually build up to where you won't notice it. '

I think I could, in 3-5 years of gradually working up to it, except for already having such a bad injury at that point. Muscle spasms in the area where diaphragm connects to spine are the biggest problem keeping me up at night (and making me take muscle relaxants, which increase the apnea).

@zimlich:

'PaulaO's suggestion about the O2 monitor is a good one. If your O2 saturations drop during the night maybe oxygen would be just as effective as CPAP.'

Oh! I never thought of that! Would that involve less pressure?

'Have you tried your CPAP and found you couldn't breathe out against it?'

I tried it, and I can breathe out, it's just that I couldn't do it for more than a few breaths without further injury.

'I know many people believe a pressure of 4 is too low for inspiration to feel comfortable, but it might be enough for you.'

Hmm... I experiemented with settings until I found one that I could feel kept my airway open. That was around 10, I think (Iwill check). But might a very low setting help and I don't realise it?

'Oh, by the way- there are apnea detectors that you wear for one night- one is available on Amazon and is called the "Sleep Apnea Test- Home Test by Nasivent" for $50.00. '

Oh, another thing I didn't know! So, if the results from that and the sleep study would be acceptable, I might be able to get a non-black-market CPAP. Good to know .

--

Thank you all, so very much . I am feeling hopeful about getting this situation resolved .

[SuperSleeper]

There is a genetic test for EDS, just not one for the Hypermobility Type (aka HEDS). There are tests to also show if the collagen is genetically altered, but does not always tell what is responsible.

Since the genetic testing is now available, I don't see the types changing again. Perhaps if they ever figure out the gene for HEDS, they may divide that type. You can contact the national foundation (EDNF) to find doctors in your area that deal with EDS. Every other national conference is a medical one where you can meet with doctors, therapists, and geneticists for free.

When were your appeals? Sadly, disability determination criteria varies from state to state and even county to county, depending on the location of the federal courthouse. My mother (in NJ) had a heck of a time with hers as well, even with the diagnosis! But for me (in NC), I was denied with the initial filing (like most people are) and then approved with the first appeal within just a few days of filing it. Part of my eligibility is that I am 're-evaluated' every two years to see if I have improved. That means I get three pages of forms every two years followed by a letter that says "we do not require more at this time". Only on the first re-evaluation was I ever required to see one of their docs.

If you have moved since then or it has been quite some time, consider filing again.

If you cannot sit up in a recliner, then put something under the feet of the headboard and incline the entire bed. We have this because some nights I cannot sleep on my side and the incline cuts down on the snoring. It is raised the height of a single 2x4. If you go higher than that, it would be best to screw together 2x6s so that the bed has more room to move before falling. (been there, done that, scared the crap out of us)

EDNF also has a forum which is a good place to go for advice and fellowshipping.