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How to get help when you don't know where to get it from?
#1
How to get help when you don't know where to get it from?
I've been watching my girlfriend suffer from sleep issues for the past 9 months now. Initially, we didn't think it would be all that difficult of a process. Just see a doctor and things should look up, right? We've seen several doctors - physicians, therapist, acupuncture, and two sleep doctors - and they've all given no help, whatsoever. We've been given answers from "something that stresses her out", low vitamin D to food poisoning and mental health issues which all proved to be unhelpful in regards to sleeping.

My girlfriend doesn't have anything that really stresses her out other than not sleeping at all. The first sleep doctor we saw said that he detected mild sleep apnea but then told her that it wasn't enough to give her machine therapy. The second sleep doctor that we went to get a second opinion from said that he couldn't conclude anything based off the records from the previous sleep doctor and insisted that my girlfriend had anxiety (mind you, there has never been a diagnosis for anxiety and, to put into perspective, the therapist she saw didn't believe chronic anxiety to be an issue of hers).

All of that aside, here's what she experiences on a daily basis:


[*] insomnia


[*]restless legs

[*]frequent trips to the bathroom at night

[*]depression

[*]sleep medication no longer works for her

[*]if she can get to sleep, she can't maintain it for more than an hour

[*]constantly fatigued

[*]not as coherent; memory loss

[*]very shallow breaths when lying down

I've been doing the best I can to be optimistic for her but she's lost so much hope since this started and I'm trying my best not to lose optimism. None of the health professionals are listening to anything she's saying and that doesn't help at all.

I've been reading anything I can and I'm starting to think that self treating will be the way to go; the only thing is, I have no idea where to start. This could be a case of OSA, CSA, or UARS and I'm not sure what kind of device I should look into buying, how to configure it, or what kind of data I should be collecting from a machine.

Any advice would be extremely helpful, especially from a community of people who've had similar experiences.

- A very hopeful and desperate significant other
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#2
RE: How to get help when you don't know where to get it from?
look into COPD and possibly diabetic type I or II -eating or drinking lots of sugar products?. Stop smoking recently? Just because it's not sleep apnea does not mean that nothing is going on. A good GP might be your best bet.
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#3
RE: How to get help when you don't know where to get it from?
PoolQ,

She doesn't smoke and she's always had a well balanced diet before her appetite dwindled. Even though she loves her sweets, she doesn't go overboard on them. Not entirely sure what it could be but I know she had a full blood panel ran in the last week and she didn't hear anything negative about any of her levels.
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#4
RE: How to get help when you don't know where to get it from?
I am not qualified to diagnose this.  What you are describing seems very sudden in onset and that is not how sleep apnea usually manifests.  Has anything else happened to her in this time frame or has there been any environmental changes?

That said, other than the restless legs and may shallow breathing, this sounds much like me when I had severe sleep onset and sleep maintenance insomnia.  I was literally incoherent by the time I got to a doctor.  I could not form a complete sentence.  Lack of sleep can cause depression, anxiety, frequent bathroom trips, fatigue, incoherence and memory loss.  I've been there.  I don't know what she is taking for sleep medication, but Temazepam is what got me sleeping enough to think somewhat rationally again.  It is not a cure.  For me, the cure was sleep compression therapy where you are only allowed a restricted number of hours in bed a night, whether you sleep or not.  It is brutal.  But eventually, your brain tells your mind to get lost! and starts sleeping normally again.  And then a few years later, I had full blown sleep apnea...  Oh-jeez
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#5
RE: How to get help when you don't know where to get it from?
she may have PLMD if she has RLS, they can go together. A home or lab sleep test will tell, or you can watch her sleep and look out for regular flinches every few minutes in periods through the night. These arouse and break the sleep cycle.
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
For auto-cpap, from machine data or software. You can set the min pressure 1 or 2cm below 95%. Or clinicians commonly use the maximum or 95% pressure for fixed pressure CPAP, this can also be used for min pressure.
https://aasm.org/resources/practiceparam...rating.pdf
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#6
RE: How to get help when you don't know where to get it from?
I would encourage her to go back to that dr who said she does have sleep apnea but it's not bad enough to treat with a machine.

My sleep dr told me the exact same thing. I told him that nothing else has helped me, and this (my symptoms) are detrimental, so I'd like to at least TRY the machine, to see if it truly is unable to help me.

And the machine has been a LIFE changer for me!
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#7
RE: How to get help when you don't know where to get it from?
@chill

The only thing I've been able to boil everything down to was that she used an IUD for birth control last July. The only side effect she experienced was weight gain and her symptoms didn't start until October. She did start a new job at the end of September working a second shift but shift work has never been an issue with her. When she was in college, she had many late nights of studying and partying and she didn't suffer from sleep issues at that time. In October, it was only one night where she'd have about 3 to 5 hours of sleep. Then that increased over the course of nine months. In those nine months, she's taken several sleep medications (at least 10) with no avail.

She got the IUD taken out in April of this year so the weight gain has at least stopped but the sleeping issues have worsened to the point of insomnia.

My girlfriend would rather not see any more doctors, but she's not sure what she should do. Since she's had such low levels of apnea in the sleep lab, I'm wondering if this really could be a UARS issue and if that's the case, I'm wondering how much better an ENT would be as opposed to just going to a sleep doctor.

@ajack

I have no idea what it could be, honestly. As for PLMD, she doesn't necessarily twitch, it's more like anxious ticking when you're bored during a long lecture kind of movement. I want to say that PLMD was ruled out by the previous sleep doctor but I can keep that in mind.

@Hydrangea

After the way the last sleep doctor treated her, I'm not sure she wants to speak with him. Upon the first visit, she told him that medication does absolutely nothing for her. When they went over the results for the sleep study, the doctor said she had a mild case of sleep apnea but couldn't do anything about it, then he recommended four different sleep medications. She called him a week later and told him that none of the sleep medications worked. He proceeded to tell her that he doesn't really know what he could do, so he recommended yoga/meditation and then prescribed her one more medication that did nothing.

I'm currently researching machines to try ourselves at home and see if that does anything. I may have her see if she can ask to just try a machine at the next sleep doctor she visits and see how that works out. This has felt like it's been going on for so much longer than nine months.

Thank you all for your responses.
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#8
RE: How to get help when you don't know where to get it from?
If you do go it alone and get a machine read THIS.  Then get Sleepyhead software, there link at the top of the page. When you get data, post it, people will be glad to help.
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#9
RE: How to get help when you don't know where to get it from?
Hi ohnjay,
WELCOME! to the forum.!
I am sorry to hear that your girl friend is not getting satisfactory treatment for her sleep problems.
I wish both of you good luck and I wish her good luck on her quest for much needed and better sleep.
hang in there for more answers to youre questions.
trish6hundred
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#10
RE: How to get help when you don't know where to get it from?
Thank you for the response! If it comes down to self treatment, I will definitely use this link.

Thank you so much for the welcome. It's hard to talk about this because even amongst those who already have sleep issues, I still get met with skepticism when I talk about her. I'm very optimistic for change and am hopeful for a solution.
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