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Old 03-01-2008, 01:36 PM   #1
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Anyone here with central sleep apnea?

My husband was just diagnosed with central sleep apnea and in the next few weeks he'll be getting more tests, including an MRI of his brain and spinal cord and an echocardiogram to find out why his brain is 'mis-firing' like this. He's only 39 and has had sleep issues for years. In the past 3 years though it's become progressively worse. He's always been an incredibly hard worker, but now his daytime fatigue and inability to concentrate is so severe that his work has been suffering. He also has migraine-like headaches accompanied by vomiting several times a week, sometimes every day. On his sleep study he stopped breathing an average of 20 times per hour. So I guess it's no wonder his health has been suffering in other ways.

From what we understand so far, there doesn't seem to be much that can be done to help central sleep apnea. If any of you have been diagnosed with this condition, we'd sure be interested in hearing your story and especially if you found something to help you get a better quality of sleep.

Thanks!

kd

 
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Old 03-01-2008, 04:36 PM   #2
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Re: Anyone here with central sleep apnea?

I have central sleep apnea, and you are the only other person I have heard that has this type of sleep apnea. I attend an apnea support group and even the leaders of this group know little to nothing about this type of sleep apnea.

Anyway, I do not get head aches, but I do have several buldging discs in my neck, but an MRI showed the nerve was not compressed, even though my back, hands and feet feel like eletrical impulses are running through them.

I was tired all the time, I hurt everywhere, I had no strength, and my whole body would shake for no reason at all. I honesty thought I was going to be dead in a few months.

I had spent years going from doctor to doctor with no explination to my problems. Finally I went to a neurologist, and the first thing i said was "don't tell me this is in my head and I need to see a psych dr, because I heard that already." When I explained my symptoms she ordered a sleep study.

My sleep study showed I quit breathing 7-8 times an hour for up to 58 sec at a time and my out 02 levels would drop to 82%. I am now on a bi-pap st, I guess that st makes a difference, with 3 liters of o2.

The bi-pap has made a huge difference in how I feel, i have energy and wake up refreshed. I still haven't gained back my muscle strength and most likely won't, but at least I feel somewhat normal.

I am not sure what is going on with your husband, but I will certainly pray for him. I have not heard of anyone with sleep apnea describe the symptoms your husband is having. Being a nurse, I would be concerned about your husbands symptoms even if he did not have sleep apnea.

Vic

 
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Old 03-01-2008, 07:24 PM   #3
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Re: Anyone here with central sleep apnea?

My son (5) and husband (33).

There is something you can do.. sleep with the aide of a CPAP. My son has been on one since the age of 4 and my husbad since I got him diagnosed at the age of 31. More people have obstructive sleep apnea diagnosed.. but many CSA go undiagnosed. It is hard to get sleep issues diagnosed in the first place. Most other MDs have only had a 15 minute seminar on the issues and thus dismiss it and try to treat the symptoms.

One thing to note is sleep disorders are geneticall linked.. if you have it or your husband has it.. your children, parents, siblings, grandparents are likely to have it. If you and your hubby have sleep apnea.. there is an 80% chance your children will. If only one parent has it.. there is a 40% chance.

Look to those about you. I bet you are not alone. OSA's can sometimes be cured with surgery.. but even with it.. it may stick with you. I am that way.. did the surgeries.. and I am still OSA. My son has OSA and CSA that we have to balance. You have to treat it and stick to your treatment. Good sleep hygiene and CPAP usage is a key to treatment.

Once I was diagnosed.. I saw the signs in my husband and son.. It took a year to get my son treated.. he had to stop growing first. They wanted to blame ADHD/ADD and ENT issues. Well two surgeries and all the pediatricians (5 in total) Told me children can not have sleep apnea! WHAT! Well 2 out of 100 under the age of 8 do. Did you know children under the age of 8 should not snore or mouth breathe in their sleep! If the do.. OSA is 80% likely. Allergies cover the rest. It is atrocious. I was in Orlando and at Disney world with my son.. he broke his mask. Not a single supplier of medical equipment had a childs CPAP mask! WHAT! How many children are suffering and being miss labeled. It truly makes me angry and sad when so small a device or a simple tonsillectomy and adenoidectomy could solve the issue.

Good luck with getting proper care for all your loved ones.
MG
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Old 03-01-2008, 10:01 PM   #4
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Re: Anyone here with central sleep apnea?

Thank you Vic and MG for taking the time to reply. It certainly does appear to be a rare condition. We're happy to know that you were, in both situations, able to get some degree of help. We're still stunned by this diagnosis, and finding, as you mentioned Vic, that there just aren't that many out there who are dealing with this condition. My husband is getting his echo done on Monday, so I guess we'll soon know if there's a problem with his heart. The MRI is scheduled for 3 weeks from now. We're in Canada and it generally takes several months to get in for an MRI, so the fact that his doctor obviously put a rush on his doesn't do much to dispel our anxiety. Hopefully though we won't find any serious underlying cause and can just concentrate on finding something to improve the quality of his sleep, and by extension.. his life!

Thanks again and I wish you both the best!

 
Old 03-02-2008, 07:15 AM   #5
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Re: Anyone here with central sleep apnea?

My husband has both apneas....central is new for him. He was hospitalized recently because of this and they used the Bi-Pap. It helped! C-Pap not for Central apnea, Bi-Pap can help.
See your professional ...our pulmonologist and his staff does the set-up with the dealers so the setting are correct.

terri

 
Old 03-02-2008, 10:35 AM   #6
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Re: Anyone here with central sleep apnea?

I guess it depends on you whether a CPAP or Bi PAP is best. My son and hubby were able to treat their events using CPAPs. We have to do yearly titration studies for my hubby and my son tends to need them more often. Every time he has a significant growth spurt his pressure needs change. I will ask about the BiPAP for CSAs when we go to discuss my son's latest titration study readjustment. We have been every where from 5.4 - 7.6 - 6.6. We have to balance the obstruction events with the central events.. maybe that is why we are using CPAPs.

Sleep apnea in any form takes a lot of effort to manage.
MG
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Old 03-02-2008, 11:58 AM   #7
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Re: Anyone here with central sleep apnea?

Quote:
Originally Posted by mkgbrook View Post
Sleep apnea in any form takes a lot of effort to manage.
MG
Absolutely!

In the end, my husband refused to use it, although it was helping him in the hospital. He continues to use a special dental guard that pulls the jaw forward. It was made by a dentist. Hubby has worn it for years for his obstructive sleep apnea, but now with more central apnea in play, it doesn't do the whole job.

I agree also. Best to let the professionals determine which type of unit is best to address one's problems!

terri

 
Old 03-04-2008, 01:13 AM   #8
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Re: Anyone here with central sleep apnea?

My husband has both central and obstructive apnea. He has RSD and is on heavy duty pain medication. We were told that the medication can contribute to the central apnea. The sleep specialist says that, in his case, a CPAP machine can actually increase the CSA events. He was prescribed a V-Pap Adapt SV, which is a computerized Bi-pap. It is very new and actually sets itself to his breathing pattern. It automatically increases the pressure if he stops breathing. The doctor says that it is the most effective type for CSA. He has had a lot of problems with leaky masks, so he hasn't gotten much benefit from it, but it worked well during his sleep study.
Sunny

 
Old 03-04-2008, 08:52 AM   #9
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Re: Anyone here with central sleep apnea?

Thanks Sunnycal,

I like that type of info. My issue is my son is five and as a result only certain machines have been tested and approved for pediatric cases. The res nurse said only CPAP have been considered. We had the issue about CSA events increasing as the CPAP was increased to eliminate OSA events. If we went to 7.5 all OSA events went away but the CSA events jumped to 8.1 We had to back to 6.5 where he has 4 OSA/CSA events an hour. It is rough.. cause I can see the difference in his sleep. *sigh* I will definitely ask if there are any studies approving V-PAPs for children.. do the require a special mask? There is only one mask approved for my son's age as well.

MG
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Last edited by mkgbrook; 03-04-2008 at 08:53 AM.

 
Old 03-04-2008, 10:02 PM   #10
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Re: Anyone here with central sleep apnea?

As far as I know, the V-pap requires a full face mask to get accurate readings. The issue my husband has is that when it leaks, it increases the pressure to compensate for the leak and then, of course, it leaks even more. We are going to try to go to an apnea support group in a few weeks to see if anyone has any ideas. They usually bring samples of masks.
Sunny

 
Old 03-05-2008, 07:28 AM   #11
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Re: Anyone here with central sleep apnea?

Ugh! Full face mask. That may be why. Children under the age of 8 are only sanctioned to wear nasal masks. It has to do with the whole.. what if the child gets ill and starts vomiting into the mask scenario. Since we have had 2 episodes of the rotavirus since starting CPAP usage.. I can see why vomiting might be an issues. I got the rotavirus after my son shared it generously with me. Nothing like vomit in the face to wake you in the middle of the night... Anyway.. I was barely able to get my mask off in time to bend over the bowl.. children as young as 4-6 would be even more pressed.

If you will ask at your group, I would greatly appreciate it. Any information is helpful.
Sincerely,
MG
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Old 03-20-2008, 11:31 PM   #12
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Re: Anyone here with central sleep apnea?

I use a bi-pap st, which, from what I understand, works like a portable vent. If I don't take a breath with in so many seconds, the machine will give me an extra brreath of air. I do not have the full face mask, I orginally started out with the nasil pillows, but I could not tollerate them.

 
Old 03-25-2008, 08:16 AM   #13
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Re: Anyone here with central sleep apnea?

Our family Sleep specialist confirmed that VPAP are only made and calibrated for adults with fully developed respiratory function and thus we have to do the CSA and OSA tight rope regime. Also he went into depth on how children have a very low CO2 driven CSA thresh hold. As a result they have to be looked at as often as every 3 months when they are growing and developing. My son is 5 and may grow out of the CSAs as he gets older. Until then we will be doing titration studies after every growth spurt. Ugh! This is going to be expensive.

My son broke my heart the other day, he wanted to know when he would grow out of his CPAP. He doesn't want to live with it forever, but knows with out it he doesn't feel good in the morning. It is so hard to explain that all the surgery has been done that can be done and that sleep apnea is just for us. He still takes naps. Sometimes 3 hour naps, he hates it but knows he needs it. He can not understand why he still needs naps and a 9-10 hour night of sleep as well. Statistics and telling him the MD says you need 11-13 hours a sleep at this age just don't cut it. I hate that I have to structure his diet and make hime nap.. but what can one do? At his age I was an insomniac.. but then again i am 6 inches shorter than all my family members. I have been living with sleep apnea since I was a child.

Sorry vented a bit.
MG
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