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Central Sleep Apnea - BiPap Not Helping
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Central Sleep Apnea - BiPap Not Helping

My husband was diagnosed with Central Sleep Apnea.  He has been to 5 Repiratory Specialists, 7 neurologists, tried CPAP, now on BiPap.  Long story short -- the Bi-Pap isn't working.  He is falling asleep behind the wheel and at work, incoherent, etc.  Oh...he is also an insomniac, has chronic migraines, chronic pain, and is on 10 medications.  Needless to say, we have no life anymore.

His present Respiratory Specialist ordered a sleep study, and from that determined that he should be on Bipap with 11/8 pressures.  We told this doctor (after three months on Bipap at this setting) that he is still falling asleep during the day and has had no relief with the Bipap.  The doctor told us that 11/8 is the setting that stopped the apneas durinig the study, and that the Bipap IS working.  End of story.  My husband takes Adderall (adderrall) 30mg - 2 tabs AM, 2 tabs PM and he still falls asleep.  The doctor told us that it has to be a neurological problem.  However...this same doctor told us that he would not begin treatment for my husband's condition until he had seen a neurologist.  The neurologist he saw indicated that it is not a neurological issue.

Anyway, we are at the end of our rope.  Any suggestions would be greatly appreciated!
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Avatar_n_tn
I'm assuming your husband's bipap is a ventilator type that will recognize central apneas and breathe for him during those episodes? Central apnea (as opposed to obstructive) usually requires a special machine. Does his bipap record treatment data, like how many apneas he has during the night? Some do, some don't. If his does, downloading his data could tell if his pressures are resolving the events.

He needs to either have access to data or get another sleep study. Tell the doctor the treatment is not working, and continuing to wait is not an acceptable option.

You didn't say which style mask he uses. If it does not cover his mouth and he opens his mouth during sleep, the air is lost and cannot prevent the apneas.

Sure hope he gets some help soon. And read up on all his meds to see if any are contributing to his problems.
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Avatar_m_tn
Hello, Kat.

I second KatEyes opinion.  Most people with central sleep apnea are not given a regular BiPAP machine.  I was given a Respironics BiPAP Auto SV machine.  Could you tell us exactly what type of machine your husband is using?  Your BiPAP should have a smart card slot installed.  Your home care provider should give you a smart card and after a couple of weeks you can give them the card and they will download the data to see if the treatment is effective.  I went ahead and bought the software and a smart card reader from an online CPAP supply store and I look at the data weekly.  If the machine has the slot, and you decide to buy the software and reader, the smart card will only work on ONE reader.  You  can't buy it at Circuit City or Best Buy.  You get it from CPAP supply places.

I had exactly your husband's problem when I first was diagnosed.  I was exhausted every day and falling asleep behind the wheel.  I complained to my sleep doctor that the settings must be incorrect.  All sleep doctors believe the overnight study is the gold standard.  He discounted the data on my smart card.  I complained constantly until he ordered another study that showed the settings needed to be adjusted up by a lot.  This still didn't work.  He refused to consider that sleeping in a lab is not the same as sleeping at home.  

But, he ordered a two week auto-pap study to get me off his back.  I was given an Auto-CPAP machine for two weeks.  The machine determines the optimum pressure for the apnea everynight for two weeks and then averages the numbers and that was my new settings.  This still didn't work.  

After months of complaining, I called the manufactorer of my machine, Respironics, and sent them my data card.  Their experts read the data and said I probably have Complex Apnea (this is when you have obstructive apnea that turns into Central Apnea when using a CPAP machine.  Respironics actually sent their local Rep to my doctor's office to discuss the data.  My doctor ordered another sleep study with the new BiPAP Auto SV machine.  

I was given this machine and at first, the data card read that I was having 40 - 70 AHI a night.  So, I adjusted my oxygen generator upwards a 1/4 pressure for two weeks at a time until my AHI dropped like a rock when I reached 3cm pressure.

You didn't mention is your husband is also on Oxygen but that is the norm for Central Sleep Apnea patients - Oxygen and CPAP.

The bottom line, is that you have to bug the living hell out of your doctor to get what you want.  Use your home care provider and CPAP machine company as resources.  They will interface with your doctor.  Also, there is a great forum for apnea patients.  It is at:  www.apneasupport.org.  There are literally hundreds of apnea sufferers to help provide advice.

For me, the funny thing is I'm still exhausted and we're trying to determine why.  I am taking three times the recommended maximum amount of Vyvanse (a lot like Adderall (adderrall)) which is 70mg to function.  

Read up on Adderall (adderrall).  The 60mg maximum is based on old studies conducted on children between the ages of 6 and 12.  If your husband is a big guy (I'm 6'2' 220 pounds) 60mg is nothing.  I tried 60mg and it didn't dent my fatigue.  Try to find a doctor to prescribe "off-label", usually a psychiatrist, to increase the Adderall (adderrall).  This is legal but many doctors are afraid of the FDA and malpractise suits.  But, some will understand.  The golden rule is 3/4mg for every pound of body weight.  My doc and shrink won't raise the amount so I get a prescription from each of them and use two pharmacies but use my insurance at only one of them.  This gives me 20 days supply.  I try to skip weekends and will only use two pills on a slow day at work.  I usually suffer the last week because I have no medication, but it's better than suffering all the time.  It works great.  I have a homelife and I'm productive at work.  

We're still running tests to see why I'm tired, but at least we've ruled out the apnea.  I even paid for a brain MRI to rule out MS and the like.  Have your husband tested for vitamin B-12 deficiency.  This could be an easy answer if it is low.  

Sorry for the long answer.  This issue is so complicated.  Take care and best of luck.

Curt


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702513_tn?1228516297
First of all, thanks for your response.

My husband has a Respironics BiPAP Auto, it has a humidifier and Smartcard (although we have never tried to access the data on the card.  I guess it's time to find out how it works!  He has a ResMed Mirage Quattro full face mask.

He has seen his specialist 2 or 3 times since beginning treatment.  Each time, we have indicated to him that the BiPap is not helping.  He just keeps saying that the sleep study shows that his apneas were greatly diminished at the 11/8 setting, so there is no reason to go any further with testing, etc....blah blah blah, and that it has to be a neurological issue.

My husband has starting seeing ANOTHER neurologist locally (we don't have many doctor's to choose from here) and it is his opinion that the BiPAP is not working for him.  He is even suggesting that my husband go to the Mayo Clinic!  Meanwhile, my husband takes 120 mg of Adderral each day -- sometimes more because he can't function.

Also, we have decided that we are dropping the respiratory specialist in Indy.  He is not listening to us.  So my husband has resumed seeing a local Pulmonary specialist, who we are using for prescriptions, as he doesn't know what else to do to treat my husband!!

Regarding his meds, I have a cousin that is a pharmacist.  He reviewed the drugs my husband is currently taking and he and a collegue feel that the medications are not the cause for his severe daytime sleepiness.

We've lived in this area for a little over three years and it is a nightmare trying to find a decent doctor.  We thought going to Indianapolis would help us get better results, but we were wrong about that.

My husband has an appointment with the local Pulmonary doc on Tuesday.  I'll tell him to request yet another sleep study (he's had FOUR already).  He is eligible to a new machine IF the BiPap isn't the right machine for him.

Again, thank you so much for your response!

Kat
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702513_tn?1228516297
Your situation sounds as frustrating as my husband's.  When he was first diagnosed, it was obstructive sleep apnea.  The doctor he was seeing at that time ordered a CPAP machine and oxygen.  He had another sleep study and the doctor decided that he didn't need the oxygen.

Then he saw another doctor because he wasn't getting better (looking back, he should have stayed with that first doctor...he wanted to do yet another study and I think my husband didn't want to do anymore.).  The second doctor ordered another sleep study.  This one showed Central Sleep Apnea and he was put on Bipap.  He was still falling asleep everywhere, and this doctor didn't feel that he could provide adequate treatment.

Mike (my husband) was then going to be referred to U of I Sleep Lab.  Unfortunately, the chief of staff had just accepted another job and they were not scheduling appointments until a replacment was found (it took almost a year).

I'm sorry to hear that you are still exhausted even though your apnea treatment is working.  I know how frustrating that is for you.  I hope that your doctors are able to resolve it.  You mentioned Vyvanse, Mike's neurologist gave his a script for that.  The dose was 70mg and Mike fell asleep an hour after taking it.  In fact, now the 120mg of Adderral he takes isn't enough anymore.

I am definitely going to call the medical supply center that supplied the Bipap machine and tell them that we would like to use the smartcard.  Thanks for the excellent advice!

Enjoy your weekend!

K
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Avatar_m_tn
Hi, again, Kat.

Is your BiPAP Auto an SV or ST model.  It makes a difference which model depending on your apnea diagnosis.  Also, is your husband on supplemental oxygen?  This is normally a standard practice with Central Sleep apnea.  

If your husband has the correct machine, no leaks in his mask (your data card will tell you this), and doctors have ruled out everything except apnea then there are still a couple of options and for one of them, your doctor will kill me for telling you.  First option is to send the data card to your homecare provider and ask for the printouts for the alst two weeks on hard copy.  Call Respironics (they're on the web) and ask them to take a look at the data.  they were very willing with me.  If either the home care provider or Respironics tells you that the apnea is not resolved, ask them to call your doctor.  They usually will.  If your doctor is still unwilling to do anything, then there is option 2.

I used this option, and some of the data proved my settings were incorrect.  The option is to adjust the machine yourself (and I know I'm going to get tons of hate mail on this, but desperate times calls for desperate measures).  The issue is probably that the upper number (11) is still too low to resolve the apnea.  You increase the upper number by one and wait two weeks to see how you feel, or even better - look at the smart card data.  Continue to increase by one until you see improvement or the smart card shows your AHI to be under 10.  

My initial setting was also 11 on CPAP.  When that didn't work, and the doctor didn't listen, I slowly raised my pressure until I saw my AHI really drop (from 75 to 35 which was still too high).  But, I was afraid to go any higher because you can inadvertently cause more Centrals if you go too high. Test after test finally showed the number to be 15 - with no progress.  

When I had my BiPAP Auto SV overnight study, the minimum number was 15 and the max was 25!   My machine averages every night at between 19 and 20 - when the original study showed 11.  You can see the problem.  With an Auto machine, you can theoretically set the machine to the max of 30 and it will only go as high as needed to resolve your apneas.  Think long and hard before you go down this road.

I learned this method on a sleep apnea forum at:  www.apneasupport.org.  There are so many people willing to help.  There are quite a few who can even interpret your sleep study results for you.
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Avatar_m_tn
I'm sorry you're husband has had so many problems with fatigue.  It's amazing the number of people on CPAP/BiPAP that get no relief from their original symptoms - fatigue.  It's good to know that I am helping to keep the brain and organs oxygenized.  If not for that benefit, I wouldn't use the machine.

You're corect about Vyvanse at 70mg - useless.  140mg - useless.  210mg - awake all day until 10:00PM and then sleep like a baby - perfect. Except I can't get an MD to prescribe at that level.  I have no side effects at all.  Adderall (adderrall) at 60mg - useless.  120mg - useless.  It took 120mg in the AM and 120mg around 1:00PM to make until 7:00PM.  It's crazy and my MD thinks I'm pill shopping when I tell him that I'm on 210mg.

You'll be happy getting the smart card.  I love being able to read the data myelf - when I need to and not have to run the card down to Lincare and wit for the mail to bring me the results.  

Best of luck to you and Mike.  I hope you find some answers.  One quick aside, has Mike been tested for Vitamin B-12 deifiency?  This is a possible cause of fatigue and easy to fix.

Take care all and I wish you a good night's sleep and a ton of energy the next day.

Curt
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Avatar_m_tn
I would suggest taking supplements, nasal irrigation (every day), avoid steroid sprays, different masks, and taking high doses of Vitamin D and/or Thyodyne (a thyroid supplement).  My main issues were finding the right mask, which was a FULL FACE one.  Then, taking one caffeine pill daily at lunch and thyroid/vit d in the winter to boost energy.  Sunlight seems to be magical in giving me energy as well.  Too bad I live in Cleveland, a region with maybe 50 sunny days a year.

Maybe, that will be helpful.

Frank
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Avatar_n_tn
My son, also suffers from central sleep apnea and Arnold Chiari Malformation, for which surgery was ineffective. He has tried at least 5 different masks with the bi-pap and cannot last even a few hours without the mask coming undone, falling off or the alarm going off cause he moves around when he sleeps.  My son is 20 years old and today his doctor suggested a procedure that would put a hole in his trachea so the machine could be hooked it and he would be able to cover the hole when not using the machine.  I am at my wits end because I will not  go along with this surgery so any info you receive could you please pass it on to me.  Anyone who has any info on a treatment for this without using bi-pap please let me know.  E Abbott Massachusetts  
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Avatar_n_tn
My son, also suffers from central sleep apnea and Arnold Chiari Malformation, for which surgery was ineffective. He has tried at least 5 different masks with the bi-pap and cannot last even a few hours without the mask coming undone, falling off or the alarm going off cause he moves around when he sleeps.  My son is 20 years old and today his doctor suggested a procedure that would put a hole in his trachea so the machine could be hooked it and he would be able to cover the hole when not using the machine.  I am at my wits end because I will not  go along with this surgery so any info you receive could you please pass it on to me.  Anyone who has any info on a treatment for this without using bi-pap please let me know.  E Abbott Massachusetts  
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Avatar_m_tn
I have high prolactin and may have a pituitary tumor....
I have terrible sleep apnea and use a resmed asv and can't sleep on it because the pressure is too high and there is no ramp.  maybe the phillips machines are better?  
I had one central apnea on a study with 75% O2 and I have been getting some bad nights with headache and fogginess I think from low O2 or breathing difficulty.  
do meds like klonopin or prednisone help?  prednisone helps me but I think it causes brain damage
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Avatar_m_tn
I am trying to get surgery, UPPP, tonsilectomy, septum surgery.  on Dr. Park's site there was a sad story about a neurologist with sleep apnea who eventually after many surgeries was cured by tracheostomy but I guess you have to live with this tube sticking out of your neck.  also UPPP combined with tongue surgery has a high success rate maybe 80% or higher
I don't understand how this terrible disease is acquired either??  my sleep doc said it can be from heart problems but I don't have any except mild MVP.  
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Avatar_m_tn
I noticed too that I felt much better on 5 liters of O2, I'm not sure how that works- my sleep doc prescribed me 2 liters
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Avatar_m_tn
To all hello, I have a severe sleep apnea I use BIPAP 18/14 and I take one tablet provigil 200mg morning and one tablet provigil 100mg after lunch all there my doc. Requested after 3 sleep study in 3 different place, I don't know if you can imagine what is pressure 18/14 , all what I mention for you now and it dosnt help. I send the sim card every month to the company to printed and send it to the doc. No change. But it's more worth. I think my employer cannot understand that problem and if he lay me off the provigil medication cost like 2000$ without insurance .
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Avatar_m_tn
I'm still suffering from severe sleep apnea and centrals and hypopneas according to sleepyhead software.  
does provigil do anything for sa or just mask symptoms?

I tried theophylline for a few days but the stuff seems toxic and can cause heart arrythmias.  I read one account that it helped a kid after one month, but it makes me nauseous a little and seems to affect my heart, increase heart rates
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Avatar_m_tn
does adderall (adderrall) help sleep apnea?  does it help you think without long term side effects becuase I think I am ADHD after sleep apnea for years?  
it seems all these neuro meds affect the brain maybe in negative ways which are unknown

I can't figure out what causes my centrals, I don't have a brain/heart issue except MVP and occasional angina and a cyst in my clivus
I find prednisone helps
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Avatar_m_tn
provigil may help may not and you have to anderstand that provigil its make you just wake up for a couple hours but he dont give you the power you loose it from you sleep apnea , so you have to try it for one month to see the result and its very expensive. good luck
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Avatar_m_tn
I also have chronic migranes (migraines), chronic pain, and insomnia. The best method that works for me is to take 1 vyvanse in the morning(and as bad as my ADHD is, only take it if you need it)! Every day I get off of vyvanse I feel like I'm just waiting to open the bottle and get the routine moving for the day. BUT DON'T. Honestly, after a few days of weaning off you feel refreshed and ready to get on with the day. If he still has problems sleeping at night after trying to get off the meds(which in the long run give you more energy off), then he should consider medicinal marijuana or the supplement melatonin.
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