I just got a call from my ENT who ordered a sleep study for me a couple weeks ago. She said that I need to do another sleep study and be put on CPAP as my results showed medically significant apnea. Ah ha, no wonder I am so tired all the time.
I was hopeful that this time the apnea would still be in the mild range and i could avoid having to go to CPAP. I agreed with the doctor to try the CPAP and see if it will help. I hope so because I was about to ask my neuro for Provigil just to stay awake at work.
I had mild apnea 2 years ago and since then have had no significant health changes other than MS. Even my weight is about 10 pounds less than I was then. Does anyone know if there is any relation between MS or is this just a coincidence?
For anyone who has used CPAP, has it been beneficial or not? Have you had to resort to surgery? My doctor mentioned that this may be an option if the CPAP doesn't work out.
Hi Julie, I'm sorry to hear of this new problem with your sleep! It's good that she has continued to watch you though. I have no idea of what a CPAP machine feels like but it doesn't look very comfortable. I recently heard of some accessory that you can use between your face and the machine though---it makes it less uncomfortable.
I didn't know that surgery was a possible option. Is that on your sinuses?
Hi Julie, there is definitely a connection between sleep problems and MS - so much that one of the MS mags dedicated their cover to the discussion. I'll see if I can find it for you and send you the info.
The MS Consortium group also had a piece on MS and sleep at their conveniton - you can read the powerpoint at
I am not at all interested in surgery so it is either CPAP or nothing. It will work out, but like you said Lois, it is not that comfortable from what I've heard.
Lu, I remember Dr. Park asking about our sleep issues about a year or so ago. I have read back through his responses after getting our input but didn't find information that wa helpful for my particular situation unless I've missed one of his posts.
If you find a link to the MS pub that spoke of the connection, I'd love to see it. Thanks as usual for the other link. You are always a wealth of information and links.
It still amazes me how we don't even realize we have apnea unless someone tells us. But it is good to know because I would lot rather try to cpap than take yet another medication.
Lu thanks for the info link. I actually accidentally printed it out, but it is good information.
I am still wondering if there are others who have been diagnosed with apnea and were put on CPAP and if they are finding that it is or is not helping. It does appear to be a common problem with MSers, but it is new to me.
I've used a C-PAP for about 15 years and I have found it to be very beneficial. My apnea was pretty bad so it was great that it was caught early before any cardiac damage.
Some people can not tolerate wearing the mask. It does have a tendency to feel tight around the head and face. It has not been a problem for me. The other thing is that the machine dpoes make some noise - well it's sort of a "wooshing" (doubt its a word) sound - air flow, but it does not bother my wife.
I never really considered surgery because it can be complicated and is quite invasive with a long recovery time and does not have a good success rate; well too much for me that is. Dr. Steven Park has done a detailed segment of apnea surgery a few months ago. You might want to search for that article. It was quite informative.
Give a "holler" if you need moore information. Hope this helps.
In reality there aren't a lot of options if your sleep study showed abnormalities. Like MS, you treat sleep apnea with the limited resources available or just let it take it's course and continue to rob you of self determination and control of your own life.
I think I shared my experience using CPAP with you when you were questioning if Zanaflex would make sleep apnea worse. I have heard many people say they experienced a rapid increase in energy levels and alertness after starting to use CPAP. The improvement was much shower for me but it definitely helps me enough that I wouldn't want to be without it now. I do sometimes take a CPAP holiday for a night or two but more than that and I can feel the lack of REM sleep catching up with me.
There are many different kinds of masks and machines. My machine makes very little noise once it is in place. BiPAP is better for some people. I think we talked about that too since your diaphram might be weakened? BiPAP changes pressure so you don't have to exhale against any air pressure.
My mask isn't really a mask at all. It's a head piece with 'nasel pillows' that sit at the entrance to my nostrils. There is nothing constricting about it. I've tried several kinds but always come back to this one. Sure there are nights I just can't be bothered. Sometimes it gets flipped off after a few hours. My sleep neuro says that's OK because any time it's used is better than waking up >80 times an hour!
Since my MS adds fatigue, I still take Provigil to improve my quality of life. The two work together to keep me functioning well. Life had become a miserable cycle of unrefreshing sleep, slow motion watching of life go by, and a constant struggle to think or function. I still have stuff to complain about. At least I have the energy now.
Most often the machine is on loan for the first month or two to see how well it works and if you will use it. The doctor orders the setting to use and will adjust it to suit your comfort and relief levels. The insurance company and I each paid our portion of a monthly fee until the unit cost was covered. Now it's mine.
I haven't had any discomfort or pain like people here have suggested. In fact, a lot of the stiffness I used to have in the morning is gone now. I always thought I slept so soundly that I didn't move much so got stiff. It must have had something to do with the low oxygen levels because I still don't move a lot but I'm not stiff (except for MS spasticity sometimes). Most people who do complain say they feel tied down but I move around as I want.
My BP has gone down using CPAP and I lost some weight when I first started using it (both verified improvements of treating sleep apnea). I also stopped waking up to go to the bathroom several times each night. Funny how that works. I thought the urge was waking me up. Seems my brain actually woke me up to breath. Maybe it added the urinary urge to get me moving around and sending oxygen to it a little longer. Now days I sometimes get up to the BR once a night. Often I sleep through or just awake to turn over.
If your sleep study is abnormal, IMO you owe it to yourself to give the CPAP a try. I think it's your best bet because lots of the surgeries (there are different possibilities for different problems) don't have a high success rate anyway. My doc gave me some sleeping pills if I needed them to help me adjust to the feel of the head gear but I didn't use too many of them. I just used it as long as I could each night. There is an adjustment period so make sure you give it a good trial.
CPAP therapy is so beneficial that anesthetia departments will now often instruct patients to bring their machine to the hospital when they are having surgery. It has been found to be very helpful in speeding recovery from anesthesia. That sounds very significant to me.
Guess that's enough for this go-round of testimonial unless you have other specific questions. Hope this works out for you. Sleep well.
Since my sleep study was supposed to be a split-night, the tech had me try out several masks before I went to bed. We didn't end up doing CPAP that night as I didn't meet the criteria in the first 2 hours, but the helpful part was that I did get to see which mask helped most. I think I tried the one you mentioned Mary and I liked it too. So, that will be the one I try out when I go back in on Aug 15th.
I feel more comfortable about this now after hearing your feedback. It is another thing to deal with, but if using cpap will help me get my quality of life back then I am for it.
And, I agree about the surgery. It is not something I would consider unless things got so bad that it was the only option left.
I'm sorry to hear about your increase in sleep apnea. I have used a cpap for 5 years now. It has made a world of difference for me. Of course, it hasn't helped the MS fatigue but, I'm just not sleepy like I once was. There is a HUGE difference in being sleepy and being fatigued.
I was falling asleep at traffic lights, at work, etc. The mask doesn't bother me at all. I don't sleep well because of MS however, the mask doesn't cause me any sleep problems.
I have a couple friends that have CPAPs; one who swears by it, and one who swore at it, lol. The second one said that she couldn't sleep with it on. She's looking into a dental appliance that holds the mouth in a position that's supposed to help with apnea.
I had my sleep study done not long ago, after months of sleep deprivation and then the grief of losing Fluffy, and I slept like a log; totally normal sleep study, not normal for me.
I hope you find a CPAP that works for you and it improves your quality of sleep and you feel lots better.
mamj - I don't think apnea causes neuro problems but is more of an affect of it. It tends to be common in MS from what I am learning, but can be seen in other neurological disorders. Again, the apnea itself doesn't = neuro problems.
Kathy, I love what you said about your friends who swear by or at the cpap. That has been my take on it too from friends I know who are using it. I can't wait to try it out at my follow-up study as the fatigue and being overtired is really affecting my ability to work. I was about to ask for provigil, but now I'll wait till I see how the cpap works out before I go the med route. Thanks for your input.
Deborah, you are very correct when you say there is a difference between being tired and being fatigued. I start out tired in the morning and as the day goes on it becomes more like fatigue. I am so happy that it has worked out for you, the cpap that is. I am trying to be positive about this.
By the way, do you guys know what your apnea scores were? My neuro said mine were 28 per hour on average. My last sleep study I was having 13 apnea events per hour on average according to the report, so it has doubled this time. I don't recall any of this happening at night, but I sure feel the affects of it during the day.
Yo, Julie. Another "hose-nose" here - I've been using my CPAP (mine is much like a BiPAP with exhalation relief) since being diagnosed with OSA (obstructive sleep apnea) three years ago and I wouldn't consider sleeping without it!! CPAP has actually saved my life! I say this because I have had very scary experiences before I got CPAP where I'd wake up not breathing and not be able to start breathing again. Once I really thought it was "curtains" for me - but then I finally got started breathing again. It made me afraid to sleep. Since using CPAP this never happens anymore. Also, I never wake up with chest pain anymore like I used to before using CPAP!! Sleep apnea is very hard on the heart!!
If you have sleep apnea, then you should treat it!! Untreated sleep apnea can lead to stroke, high blood pressure, heart disease, diabetes, and car accidents. It's like they say: "The untreated sleep apnea patient died peacefully in his sleep, while his passengers died screaming."
BiPAP is more expensive than CPAP which is why I got a CPAP that is somewhat like BiPAP. I need the pressure to be lower when I exhale so I got an "auto A-flex". I think Respironics makes the best CPAP machines (mine is very quiet) and ResMed makes the best masks - that's from my experience. The mask I love is the ResMed "Mirage Liberty" which is an abbreviated mask with nasal pillows, very comfortable with very little leakage. It is considered a full face mask so you can breathe through either nose or mouth. It's the greatest little mask! But it all depends on your face shape as to what will work for you.
I rented several different CPAPs at first and then stayed with one for about 9 months before buying it. Always rent first!!!! Also, I suggest getting a CPAP with a "smart card" that will allow you to obtain computer printouts of your CPAP usage history and progress - showing pressures, etc. displaying your AHI (Apnea/hypopnea Index).
Also, I have found that getting a machine with automatically adjusting pressures that meet your current need is ESSENTIAL!!!! My pressure needs vary: If I am extra fatigued, I'll need higher pressures. If I end up sleeping on my back, my pressures will ramp way upward!! In other words, one pressure just isn't sufficient for me (and probably not for most other people either).
If you really don't want to have to use CPAP (I welcomed it!) then losing a significant amount of weight may improve your sleep apnea, make it milder, so you might not need CPAP after all. Here is another BIG hint: Sleep only on your sides - never on your back!!! That helps reduce the throat collapse. Also you could wear a nasal breathing strip which helps open up your nasal passages and reduces the need to mouth-breath if you have any nasal obstruction.
Finally, here is a terrific website for answers to your sleep apnea questions:
It may be hard at first to get used to wearing a CPAP mask, but with time and with finding the right mask and machine for you, CPAP can be a welcome change in your life - leaving you in much better health and feeling much better. You will probably still have significant fatigue if you have MS, but at least you won't always feel loopy like I used to before starting on CPAP.
What great information you gave. Thank you very much for taking the time to write it all down. I am going to cut and paste all the info and print it out so I remember all these great ideas. Lessons learned and equipment information are so important when you don't have a clue where to start.
I go for cpap study in a few weeks and the more I hear about the positive benefits of using it, I am now not anxious or dreading having to have yet another medical device in my life.
Thanks again for your time and the awesome information you passed down. I'll be sure to let you and the rest of our friends know how this turns out.
This has really been a timely and informative thread for me.
As luck would have it, I saw my PCP on Wednesday and she ordered sleep studies to be done on me. I already have the test set up---I think there are 3 nights.
I don't know how in the world I can sleep in a lab. It will feel so different, I wonder if I will be able to get to sleep at all. Can I bring my dog? :-)
Anyway, after reading all of this I have changed my way of thinking. I am tired of being tired, and tired of breathing difficulties. I fall asleep during the day in an uncontrollable way. I'm thinking the Provingil (sp). might be a good idea too.
Anyway, I think it would be great to have this as a health page.
I agree. Did you know about the phone-in discussion on cpap machines that Dr. Park is organizing for August 3rd? I think I will register for that one since all the information I can get now will pay off down the road. I know insurance will only pay for one machine every 5 years like walkers and wheelchairs. So, I don't want to make a mistakes the first time around.
Did you say that you are going for a 3 night study? I haven't heard of that before. I don't think I'd like 3 nights of that, 2 is enough for me. I wish you could take your dog if that helps you get to sleep. They told me that I could take a sleeping aide if that is what I normally do to fall asleep.
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