My husband was diagnosed with moderate sleep apnea 2 years ago. After his first round of sleep studies they got a machine out to him and got him all setup. At first there was no real change but we thought we should give it time to work. After a few months we contacted his dr. to be told not a whole lot other than to keep wearing the mask and they had filters sent out to us. The last two years have been alot of the same ol. He doesn't ever sleep through the night, kicking all night long. He rear ended someone a week ago dosing at a red light. Then he dozed off with me in the passenger seat 4 days ago. he seems to be getting worse. He is getting depressed because he is not only dealing with this everyday struggle but he watches me upset about is attitude, how he talks to me, his lack of involvement in everything we do. I still do my best to be as supportive as possible. I have setup the latest round of sleep studies finding a new dr. in Boston,Ma (Best learning hospitals in the world) in hopes of a better dr=better treatment. We have been together for eight years, 1 1/2 married. I feel like this is tearing up apart. Anyone else have this going on?!

Yes, I have a couple of easy and very plausible responses.  That he is kicking is a huge symptom.  It sounds like he needs a new doctor.  Is he using someone for his OSA who is accredited in sleep disorders?

The first issue which may be happening is that his apnea is not being compensated and he needs another sleep study (or at the very least a week trial with an APAP) to determine his correct pressure and/or secondly, he has PLMD.

There are two main kinds of limb movement during sleep.  During an apneic event, there is limb movement due to futile attempts to breath.  As apnea is compensated with the use of CPAP, the effort to breath is eliminated and the limb movement decreases.

Periodic Limb Movement Disorder (PLMD) is the sleeping cousin to the awake Restless Legs Syndrome (RLS) and these are both neurological disorders.  There is a circadian cycle to RLS/PLMD which is why the symptoms of RLS are worse at night.  Not all people with RLS have PLMD and visa versa.  You can have one and not the other.  I happen to have both.  With RLS/PLMD, the calmer the body is, the worse the symptoms are.  Since these are neurological disorders they must be treated with medication.  The common first line drugs of choice are low dose anti-Parkinson’s drugs such as Requip or Mirapex.  Second line drugs are benzodiazepines such as Klonopin, but these drugs are addictive.  Additionally, anemia exacerbates PLMD/RLS) so you need to be checked for that.

You can (as I do) have both OSA and PLMD.

So another sleep study would be best to 1) Make sure his pressure is high enough that his apnea is compensated 2) Rule out PLMD.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I get more angry the more I think about this.  Just had to add that it is completely and totally outrageous, unacceptable and shows a great deal of incompetence that his doctor has not addressed, what is probably a simple fix, for two years and let your husband's health deteriorate so much.  When you get a real doctor in sleep medicine and your husband is properly treated, at the very least, this doctor needs to be educated before they try to kill someone else.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

we have found a doctor in boston.. last month he had a new sleep study. tuesday 08/12 is his followup appointment. this doctor pretty much told us we will go through every possible avenue until he is fixed. it was uplifting! i am making a note to make sure to ask about PLMD. He was perscribed to requip sometime ago but he felt like it made him more restless. i can't wait until tuesday. i'm very excited about this doctor. he explained alot more to us when we had went but the followup appointment did take about 2 1/2 -3 wks after study... we are getting a new machine he had said that it will actually monitor when his breathing gets shallower and it will give extra air. the doctor had said he will be refering him to an ent in the city if he feels like with the new machine and settings it still isn't right. we are going to stress to him the problems with driving. hopefully he can get him something to keep him more alert during the day. thank you for the posts! i really appreciate it!

meggush after reading your posts, I agree with Vicki! I am glad to hear that your husband is now seeing a Doctor who will give him quality care and treatment! Sounds like it is about time! You might also ask the Doctor what type of Sleep Apnea he has, is it OSA ( Obstructive Sleep Apnea)or Complex Sleep Apnea where he is having both Obstructive and Central Apneas. The reason I mention this, if he was on CPAP for so long and not getting better, and if he was having lots of  Central Apneas, CPAP might not of been helping him and even possibly making him worse! That could possibly explain part of his problems. But bottom line it sure sounds like his original doctor was not taking care of him! Please keep us posted on his progress. Good Luck to the two of you!


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

We went for the results of the new sleep lab today. The dr said he had 67 arrousals an hour! holy moly!They tested him on cpap and bi pap and he will remain on the cpap. We did tell the doctor about his fender bender. He now has to go for a MSLT that is in the process of getting scheduled. Tufts insurance  is not my favorite right now i will tell you that as well! Because of Tufts it could take as long as 2 weeks to get the MSLT scheduled. Also the dr. gave him a script for provigil and it will take us up to four days to get it filled because the insurance needs a letter of nessecity. because clearly a dr perscribing it isn't good enough. oh well, guess we should be grateful to have insurance. at any rate. i guess now we are going to find out if he is actually narcoleptic. thats a tough pill to swallow but atleast were getting answers. the doctor said that with treatment if it is narcolepsy it can be treated enough to give him a more normal life and that he will not have to lose his license. what a relief. the thought of losing his license was driving him nuts because he wouldn't be able to continue doing what he does for a living. he talks about it as if that means he's a terrible husband. he wants to be the big worker and start a family and support them  and the idea of something getting in the way of that bothers him alot. i tell him not to worry about it, one day at a time, but he doesn't really listen. i can't wait for this next test to be done to see where we go from here.

i'd just like to say  thank you to those who have responded and even those who have just read this. i feels good to have an outlet other than my husband, he's stressed as it is and i don't want to pile anything else on him.

Ahhh! AT LAST! Things are sounding very promising for your husband and you! Do keep us informed, please. We care about our fellow "apneans" and their acclimation to successful therapy.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

meggush wrote:

We went for the results of the new sleep lab today. The dr said he had 67 arrousals an hour! holy moly!

There ya go...for two years your husband wore his mask for nothing.  

It's sad but sooooo many people say "I tried CPAP for a X years and it didn't work" and it turns out the pressure/mask was wrong all along.  99% of the time the patient had a non-data capable machine so they couldnt check their numbers.  It just burns me that so many doctors prescribe the machine, and wash their hands.  It gives CPAP a bad name.  How many people right now are suffering...wondering why they don't feel better..and thinking CPAP is a crock, when all alnog they are unknowingly setup wrong?

Kudos to you for following your gut and not giving up!

How many people right now are suffering...wondering why they don't feel better..and thinking CPAP is a crock, when all alnog they are unknowingly setup wrong?


Count me in as one of them!

Like Barry said, Data capability is a must .  I'm sure there are lots of folks who get titrated right from the get go, but what if they don't?  They just muddle along until they give up.  I started having problems around the 6 month mark.  I found this site, and when Chrohnietoo told someone else how to access the data on the elite, I went to my machine and lo and behold, I was averaging 14 apneas an hour, with a very high leak rate.  Because I had the data, I worked on getting the leaks under control, and was retitrated. It's been 2 years now for me also, and I am doing well. I have a seizure disorder which complicates things, but knowing that my apnea was under control allowed me to figure out that it was my meds making me so sleepy, and I was able to get that worked out also.  I'd hate to think where I would be if it weren't for this support forum, and my data capable machine.  Virginia


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Resmed elite , 17, mirage quattro ff . 25 + years of untreated OSA

Love That Dirty Water..Boston You're my HOME!

Good for you and your husband!  Yes, the Provigil often needs verification...it is known on the streets as 'legal speed'.  If they do cover it..that is fantastic since a month supply can run upwards of $600.  And that is not too bad of a wait for the MSLT...I had to wait for 6 months to get mine since there wasn't a tech who knew how to 'score it'  I guess, in my neck of the woods.  What was too long was dealing with CPAP all this time...

I agree with everyone who posted before me.  So many people give up because they think that there is nothing more that can be done....do not know that there are several masks and tricks to make them work best..several machines and reasons why there are certain features...but the DR's do not explain that and we often do not know much about our condition to properly relay info to the Dr...  I wonder how many people out there telll their dr that they are using the machine when they are not using it.  If they did, there may be better communication.

Keep us posted!  You are on the right track now!...the GREENLINE!


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BiPAP Auto M 13/8 Mirage Nasal Swift. 20 years+ undx'd. RLS/PLMD, Hypersomnia & more.

I am still waiting for a big improvement in how I feel after two years BUT my blood pressure is better (though it was not very high to begin with, just a drop sometimes) and I stopped sweating so much at night, and I find less need to clear my throat in the morning after getting up, and my iwfe thinks my mood is better (I think its worse most of teh time) BUT the big things, More energy, losing weight, feeling somehow generally improved, less tired NOTHING, not a trace! Big sleep specialists answer... your mood is the problem, your attitude....


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Arthur
Sleeping with a curvaceous blonde autoPAP (Resmed autoset). Surviving, and in small ways doing better. Maybe there will be that big surge of energy, and easier weight loss one day. Hope springs eternal.....

well tufts wouldn't cover provigil so my husband has now been prescribed to adderall ... we wil see how it works.