Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Sleep Apnea

I don't really deserve any responses, I know, considering that I haven't been here in forever and am just popping in because I am having a really rough time right now. Still, I thought I would ask...

I have been having excruciating fatigue, especially in the afternoons. I also have had memory problems, weakness in the extremities, and other very strange symptoms. I went to a Neurologist, because I feared MS syndrome (which can occur after long term use of Humira). Anyway, the brain MRI and other tests came back negative, but the doctor sent me for a sleep study. Anyway, I have very severe Sleep Apnea. It is so bad that I stop breathing up to 50 times per hour. Also, it was determined that a normal CPAP machine would not work for me, so I was prescribed a BIPAP. I have been on the machine for two weeks now and it is terrible.

Even with my AS being under control from the Humira, I still have a lot of nighttime aches and stiffness. That makes me toss and turn. Now I have the added fun of a mask and breathing tube tether connected to a machine on my night stand. When I move I inevitably break the seal on my mask and it makes horrible noises that wake me. I have tried three different types of masks and each one has its problems. The first one bruised the bridge of my nose so bad that I couldn't even stand to wear my glasses. The second one is a "total face" mask that looks like a hockey mask. It is more comfortable but very easy to dislodge and lose pressure when I turn over. Right now, I am using what is called a "hybrid" mask. It covers my mouth and has prongs that come up and insert directly into my nose. It is the most comfortable, but again, it keeps losing pressure when I turn. Also the prongs tend to really irritate my nostrils.

Does anyone else here have Apnea? If so, how do you deal with a CPAP or BIPAP at night, when it is hard enough to be comfortable because of your AS? They say my Apnea is so severe that BIPAP therapy is a necessity to prevent heart damage or a stroke. Still, I do not see how it is ever going to relieve my fatigue when it keeps me up all night either hurting my face or "farting." Sorry to be graphic, but that is exactly what the sound is like when it loses its seal.

never have to apologize for a long hiatus, always glad to see anyone who returns!

do not have sleep apnea or machine, but one tiny idea came to mind reading this, to help not have the sound wake you, could you wear earplugs to bed? wouldn't solve all the problems for sure, but maybe that would help just a tiny bit?

sorry you are struggling at the moment

I have apnea. did the mask for about a year. I also tried the nose prong thing and could not keep it tight. Had to switch to a full mask. I then switched to the dental appliance for snoring. Worked great and sure beats wearing that mask.

You might ask your doc about those. they don't work for all but worked great for me.

Hi,

My husband has been using the CPAP since Oct. It was difficult for him to get used to also. Tried different masks. One made him sore, one just plain uncomfortable. He hates being tethered. He moves a lot during the night to combat the stiffness, so the tubing gets in the way. In the beginning, he would use the mask for the first half of the night, 4-5 hours maybe and then throw it off to sleep comfortably. This did help. He got 4-5 hours of uninterupted sleep equipped with dreams and all, and then he got 4 comfortable hours of sleep. He is able to sleep longer periods now with the mask, many nights 8 hours or more. The lack of sleep apnea is helping with his feeling of fatigue. As a bonus, he doesn't notice the "Darth Vader" noise much any more.

Try to stick with it, as aggravating as it is. It may take a few months of use to feel the benefits, sorry to say. Probably took Marty about four months, but he was very sleep deprived, his part time approach probably extended it too.

Take care.

Hey Johnny, it is so very good to see you!!!!

My sweetie uses a C-PAP and has PsA. He gets quite restless at times and has to adjust his mask several times a night when that happens. He had the same question ... how is this going to help when he has to wake up to adjust the mask. The big difference is that he wakes up far less to do this than he was when he didn't have it. Sometimes, he doesn't wake up when it goes askew. Know how I know? It starts sounding like I'm sleeping with Darth Vader!!!

It took him a while to become accustomed to it, by the way. Tried several different masks before he found one he liked (nose and mouth). It takes patience and a bit of time, Johnny, but you'll find your way. Do the folk at the place you got it have any suggestions on this? Surely, they must deal with this all the time.

Love and hugs,

Hi Johnny,

Not being here often means that you don't *need* to be here - and that has to be a good thing!

I regularly use CPAP - but mostly BiPAP - but not on MY face!!!

I'm usually the one putting it on and doing the coaxing to wear it! I am a PT and I work with teens and young adults with Cystic Fibrosis. They often need to be trained to use it overnight as their lung condition declines and then intermittently through the day or even for a couple of days at a stretch (fulltime) when they are acutely ill.

The facts are that:

1.CPAP / BiPAP is instrusive, restrictive, noisy, uncomfortable and annoying!

2. CPAP / BiPAP is a VERY efficient way of getting good airway managment and oxygenation to the lungs, thereby reducing the risk of hypoxic injury to body tissues!

So how to marry the 2??? What can you add to the mix to improve your ability to sleep?

*Camomile tea, lavender baths, Valerian capsules, a massage with rose/lavender oil before bed... all easy 'natural' assisitives (see Molly's post for Good Sleep for a few extras: #433838 - Sun Feb 27 2011 05:03 PM Re: "Amitriptyline" thread in "AS Pharmacy")

*Do you need better pain relief overnight - even if only in the short term?

*Will your doctor give you a script for a light sedative for a couple of months?

*A longer hose on your BiPAP?

*Look at the alternatives - do you need to lose significant weight? - being overweight makes it worse...the dental device that Drizzit mentioned or the "Horrendoplasty" surgery that ENT surgeons perform for some folks - these 2 are only appropriate for a couple of causes of sleep apnoea.

*A more determined attitude? Seriously - I agree with Jeanne's husband's experience - 4-5 hours of reducing potential damage to your heart muscle/night is better than NO hours!

As I said initially, CPAP/BiPAP masks and machines are a real PITB to wean into - keep plugging along looking at the Big Picture - it always takes patience and determination and an understanding of the potential damage from NOT using your BiPAP to get used to it.

Good luck with finding solutions and persistence,

Hello Johnny...I have also been away from here for quite a while but just recently started to show a renewed interest here again.
I also have been diagnosed with Severe sleep apnea. I haven't got a machine yet and I am really not looking forward to getting one either. I am also interested in the dentall appliance instead of a pump and I will be mentioning it to the sleep Dr when I see him at the end of this month and also my gp tomorrow.
My weight is a problem aswell and I really have to start working on that more.
One of my brotherinlaws was on a machine then he lost a lot of weight and he no longer needs the pump.
Dan

Johnny, you are SO missed please check in when you can if nothing else for support!

Bill (my husband) has been thru this and wears one this is like his 3rd and I will talk to him when he gets home about it and then write on it.

Just wanted you to know it was so good to see you here and at least your still KICKIN..lol

Hugs

I use a Resmed elite 8 - CPAP machine. At the time of diagnoses of sleep apnea, I registered severe sleep apnea - I stopped breathing 41 times per hour. I continue to use the
mirage activa LT Resmed mask and found it to be the best. As Sleep Apnea is hereditary, my doctor said I will use the CPAP, for the rest of my life.

Since following the Celiac diet my sleep apnea is now in the normal with very few apnea.

Join American Sleep Apnea Association, they were a great help to me when I was first diagnosed back in 2004.

Hugs
Gerri

You might thiamine deficiency. (Vitamin B1)

I had thiamine deficiency due to malabsorption. Sleep Apnea is a dysfunction of the automatic nervous system. You might also have painful calf muscles in your leg and weak, shaky muscles. I also had a problem with visual accomodation (when looking at something close, then looking at something far away, it would take a few seconds for my eyes to be able to focus).

I've had to take oral thiamine of 100mg per day for years. It significantly reduced my joint pain as well.

Ryan