Hi all!  I'm looking for some hope, not for me but for my husband.  He was diagnosed with severe sleep apnea over a year ago.  He has been through 4 sleep studies in the past, and has been using his cpap machine since last september.  His apnea is very severe, on average he woke up once every 45 seconds.  He has slepts with his cpap religiously with very little improvement.  He has tried provigil, and adderal.  

He can can hardly function with out adderal at this point.  He has become withdrawn from family, friends, and stuggles to work.  We are lucky that our family is so supportive and understanding.  At this point he now suffers anxiety, just simple things like going out with his friends or making a short visit with family is TOO MUCH, BUT STILL! My heart breaks for him, he has almost no energy, but still manages to be a wonderful husband, and amazing teacher.  He has actually been on stimulant medications since we met almost 4 years ago before he was diagnosed with a sleeping disorder.  Things are to the point that he may actually take medical leave from school.  

He's been to 2 specialist, and is now seeing "the best" at Columbia in NYC... we going to have an at home sleep study which makes number 5, in the past 2 years.  Insurance will not cover any more studies, so we are paying $4k out of pocket in hopes that they will be able to find something that will help him.  

None of the doctors feel that the surgery is a good option bc that is not guarenteed.  And I know wt loss is a good option, and he's been doing well, but he's not by any means obese, and with a vicious cycle.  How can he exercise when often it takes too much energy to just get up and get dressed.  

anyway, I know this is getting rather long, I'm just hoping that there is someone out there how can offer some hope or incite.

Hi Lyssapie!

I too have severe sleep apnea and have been devistated by it.

In terms of insite please see on this site:

Sleep Apnea Support Forum Index » Interesting Links » OSA and the Prefrontal Cortex (executive function)

Which I hope will help you and eventually him understand the symptoms (interesting, IQ not affected, ability to get things done or want to greatly affected). - and -

Sleep Apnea Support Forum Index » Interesting Links » Moderate - Severe OSA and Harm to the Brain

Which is very technical (for now just read the "conclusions" parts) but tells the results of the research proposed above.

I guess that is sort of the bad news.

The good news is that CPAP should prevent further damage - AND - the brain is plastic and may heal itself over time.

I believe the following would greatly help him:

Your and the rest of his familys support.  He is not the only one devistated by this disease.  It is very hard, I know, to understand how someone can be "together" some of the time and an absolute "irrational dopey person with emotional liability" at others.  The short of it is that he will need to scale back his life, in my openion, to where he is productive without bringing him close to the place that he operates exhausted or as the "dopey person" I very briefly described above.  I think what happens is that the connections in the brain are harmed by the disease and so function but grow "fatigued" very quickly.   Once the neurotransmitters are depleated, it takes time to restore the levels.  It seems to happen on a micro scale (daily - wear out after lunch) a medium scale (7 to 21 days) need several days off and macro scale (too much stress for a long time) damage that will take a long time to heal.  So please spend good, easy friend time with him.  He needs his friend and his friends!!

He might consider doing some volunteering.  Acts of kindness are good for the brain.

Walking and espically running.  Also - good for the brain.

Careful exposure to sunlight - he needs the vitamin D.

To see beauty - visual or musical - simply good for the brain.

I am actually looking for resources to re-train the lost executive functioning.  I am encouraged by those who have suffered brain trauma but recovered use of hands, feet, speech, etc.. through a couple of years of dedicated physical therapy.  The brain is plastic - you can get it back.

May God give us courage!

Todzo

Lyssapie what type of sleep apneas is your husband having? Is his Obstructive Sleep Apnea, or Central Sleep Apnea, or a Combination of both Complex sleep Apnea? The reason I ask, is I went thru 6 sleep studies in period of 18 months  plus a 24 hour in home Pulse-Ox study. Before I finally started receiving the proper treatment.  I have Complex SA and I was first started on CPAP, then BiPAP with supplemental O2, and this past May I was finally put on VPAP ASV with O2, and I am finally sleeping and now starting to feel results. Allot of times Central and Complex sleep apnea patients do not do well on CPAP or BiPAP and in fact that treatment can even make their condition worse. If your husband is having Centrals,  maybe the VPAP Adapt SV would be a solution???  It might not be but again who knows???  It is just a thought that you might want to check out. Lyssapi there is always HOPE, things will work out!  Good Luck to you!


_________________
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

Lyssapie   One more thing I hope your husbands sleep study goes well and they can finally get his treatment correct. Please post and let us know how it went for him. I think it is great that you are taking such and interest and active part in his treatment, I am sure it is not easy for you, as tough as it is having SA, I think in some ways it is even tougher on the spouses  and families of the SA patient! I have seen from  some of your other posts that you are a nurse,  your husband is lucky, because as a nurse you have an understanding of how diseases and conditions affect patients, and how to effectively deal with treating them. I am not saying it makes it easier for you, but I think  it does make a difference.  And as one  with SA and  also in the same profession as you, I congratulate you for what you are doing to help your husband. I wish you both the best. Good Luck to You!


_________________
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

Lyssapie wrote:

Hi all!  I'm looking for some hope, not for me but for my husband.  He was diagnosed with severe sleep apnea over a year ago.  He has been through 4 sleep studies in the past, and has been using his cpap machine since last september.  His apnea is very severe, on average he woke up once every 45 seconds.  He has slepts with his cpap religiously with very little improvement.  He has tried provigil, and adderal.  

He can can hardly function with out adderal at this point.  He has become withdrawn from family, friends, and stuggles to work.  We are lucky that our family is so supportive and understanding.  At this point he now suffers anxiety, just simple things like going out with his friends or making a short visit with family is TOO MUCH, BUT STILL! My heart breaks for him, he has almost no energy, but still manages to be a wonderful husband, and amazing teacher.  He has actually been on stimulant medications since we met almost 4 years ago before he was diagnosed with a sleeping disorder.  Things are to the point that he may actually take medical leave from school.  

He's been to 2 specialist, and is now seeing "the best" at Columbia in NYC... we going to have an at home sleep study which makes number 5, in the past 2 years.  Insurance will not cover any more studies, so we are paying $4k out of pocket in hopes that they will be able to find something that will help him.  

None of the doctors feel that the surgery is a good option bc that is not guarenteed.  And I know wt loss is a good option, and he's been doing well, but he's not by any means obese, and with a vicious cycle.  How can he exercise when often it takes too much energy to just get up and get dressed.  

anyway, I know this is getting rather long, I'm just hoping that there is someone out there how can offer some hope or incite.

I HAVE to ask: has ANYBODY AT ANY TIME actually sat down w/you and your husband and THOROUGHLY discussed the results of each of his sleep evaluations AND titrations, going over the graphs and data w/you and explaining just WHAT is going on w/your husband's sleep?

Just WHAT is this $4K buying you other than this in-home sleep study coming up?

Were you given a copy of the doctor's dictated results AND the full scored data summary report w/condensed graphs from EACH of your husband's sleep evaluations and titrations? If not I sure would be requesting them NOW! AND IF a good thorough discussion after each didn't take place, it should at the very next appointment!!! You BOTH need to know and understand just WHAT is going on w/his sleep.

Assuming you are in the USA you have a LEGAL RIGHT to copies of the reports I mentioned above under HPAA. They are the first step to your understanding what is going on w/your husband's sleep. INSIST upon being given copies!!!!

WHAT SURGERY are they saying is not for him because there is no guarantee? H*ll, "ain't" nuttin' in this life guaranteed but death and taxes! I'm probably the LAST person on this earth to ever recommend surgery - but - just WHAT surgery are we talking about? None of the surgeries are a guarantee of curing sleep apnea, there is no cure. BUT - some surgeries CAN reduce pressure needs and the severity of OSA and that in itself CAN make CPAP therapy comfortable and effective.

Check the possible side effects of the medications he has been put on. They COULD be doing more harm than good and aggravate the very conditions they are scripted to correct. Has he had a thorough neurological work up? A thorough ENT examination? A neuropsychological workup? Cardiac? Checked for silent reflux or GERD? Thyroid? Nutritional status?

Just exactly WHAT PROBLEMS is he having w/his CPAP therapy? Break it down for us. Mask comfort? High leak rates? Breathing problems w/the pressure? Condensation in hose and/or mask? Hose tugging on the mask & dislodging it? Sore spots from the mask? What types of mask and which mask(s) has he tried?

What xPAP is he using? Brand and model? Pressure setting(s)? Ramp? EPR or C-Flex/A-Flex? Humidifier?


_________________
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.

I hope that your husband's physicians are also considering other conditions that might be associated with the apnea and might be exacerbating the fatigue issues. Think about things like Chronic Fatigue Syndrome. Presumably blood test would show anemia or other blood conditions; sometimes people have genetic conditions that manifest themselves when the patient is older, which might be inhibiting the ability to process oxygen into the bloodstream. There is probably something besides or beyond apnea if you have gone through 4 different sleep tests and have seen a series of specialists.

Thank you everyone for your imput.  I don't have time to answers everyons questions but I will as soon as I get the chance.  

As far as I know 2 of the sleep studies were titration studies...  The 1st one he left bc of anxiety, the second one be completed.

The third one he used his own cpap machine to see how things improved... and there was another one somewhere alone the line.

We are doing the test at home, this test will be an all day test, from saturday night until 5pm sunday.  the at home test is over 1000 more than the in hospital test, but in a way I feel that it will be worth it.  we both agreed that doing the test at home, with out the wires will be a lot less anxiety inducing.  I feel that he will tolerate the test a lot better. The at home test is remote wires he will be aloud to get up walk around, not worry about changing possitions.  Being home will also give us a better Idea bc he's in is "natural setting."  
There is a slight possibilty that we may be getting at least a portion of the money back, but to me answers are more improtant.

The blood test are a good idea, he has them done before the first test over 2 years ago, but things could have changed, espcially since his sleeping condition is far worse now.

Surgery:  DH has enlarged adnoids, and also a large uvula, one dr ( and ENT) said it might improve his breathing at night to have them removed.  

type of apnea: we were told it was obstuctive, but the new dr thinks there is more going on.

I will certainly up date everyone as soon as I know anything else.

thank you everyone!!!

OH another thing, his studies showed that he never entered REM sleep, I'll have to ask him more.

REALLY educate yourself before giving any kind of serious consideration to the uvula surgery!!! Tonsils and adenoids if truly indicated, yes, but the uvula???? Think HARD twice, three times!


_________________
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.