ASV causing headaches?

[mj2mom]

Hi, everyone,
I am new to this forum as well new to ASV use. I just got my ASV a few days ago, but I have woken up every day since I received it with a headache. I was not being treated optimally with the BiPAP auto, but I didn't wake up with headaches. I am just curious if anyone else has experienced headaches with ASV usage.
Thanks!

[kteague]

Hello and welcome. There are quite a few ASV users here that I'm sure will weigh in at some point. They will be able to offer some suggestions so you can be sure your current treatment is indeed therapeutic. When it was decided you needed an ASV, did you have another sleep study? Are they monitoring your treatment to be sure it's working for you? Sorry I can't be of any technical help. Any chance you got a new mask with your new machine and the strap around the back of your head is causing pain? That's all I've got. Mainly just saying welcome since it's late and the board is not usually very active during this time frame.

[JohnBFisher]

mj2mom, several things come to mind:

First, do you happen to know your settings? Have you checked to see if they were correctly set? It's not unusual for a DME to incorrectly set ASV settings.

Second, do you happen to have a copy of your sleep study? What were the conclusions? Were they using the ASV unit to tackle central or complex sleep apnea? Or was there some other thought behind the ASV unit?

Third, do you have the software to track your Resmed S8 VPAP Adapt SV unit? If I remember correctly, SleepyHead on your Windows PC should be able to read the SDHC card from your S9 unit. This will allow you to monitor your therapy.

Finally, it sounds as if the ASV unit is actually making your situation worse. That is either it is causing you to retain more CO2 (somehow not allowing the proper flushing of CO2) or it is increasing your apneas (which also causes an increased CO2 retention). It sounds as if you need to talk with your sleep doctor as soon as possible.

[mj2mom]

Yeah! I am so excited that people answered my question!
Hopefully, I answer all of the questions you guys asked me:
I am currently under a sleep doctor. I also have fibromyalgia and because of it, I have several pain medications that I take on a daily basis. It is possible that the pain meds are causing the Central Apneas, but they are most likely at least contributing to them. Most of my apneas (probably 80%) are central apneas. I have had 3 sleep studies in the last 6 months. First, to diagnose sleep apnea. Second, to titrate the CPAP machine. This turned into me being given a BiPAP because the CPAP made the centrals worse. I used a BiPAP Auto for about 2 months before the doc said that it was not it was not doing anything for the central apnea so we needed to try the ASV. That's when we had the 3rd sleep study to try the ASV and I had zero apneas (central or obstructive) on it! We are using the SleepyHead software to monitor me and the numbers are looking good. I think the highest I have gotten is 2 which is significantly better than the 88 I had without therapy or the 70s I continued to have with the BiPAP. I see my sleep doc regularly, so I will mention the headaches to him, but I just wondered if anyone else had experienced it. There is a distinct possibility that the strap from the mask is causing the headache, too. I have tried 6 different masks over the last few months. I am currently using the Quattro Air. I cannot seem to get the adjustments right. If it is looser, it leaks like crazy; but if it is tighter, it hurts my face and neck. I also have the Quattro FX for Her, but it leaks even more than the Quattro Air. I am going tomorrow morning to my DME to do a "mask fitting" so perhaps I will find one that works better.

My settings are as follows:
EPAP: 5.0 IPAP: 8.0-20.0 cmH2O PS: 3.0/15.0

Thanks again for any advice you may have!

[Sir NoddinOff]

Sorry to hear about your AM headaches. My experience was just the opposite. I never got pounding morning headaches with my PR S1 auto (regular aPAP), but some mornings I'd have a residual fatigue 'blah-headache' feeling centered behind my forehead. Very uncomfortable. Sleepyhead would always confirm it was due to CSA and lots of PBs during the night. After going on ASV, all that went away and I've never had a headache in the morning since the switch. Your reaction to ASV is the first I've heard involving headaches. ASV technology tracks your tidal volume and optimizes your CO2/O2 gas exchange, or at least that's what it's supposed to do - if that's not happening then something's wrong. Like John and others have said: See your sleep doctor and your medical team.

EDIT: Your response came just as I posted this. Sounds like you're on the right track.... let us know how things work out

[icipher]

Welcome to the forum.

I am an ASV user. Even before being diagnosed I never had morning headaches. So it is no surprise that I don't have them now either.

What I can tell you is that it might take a while for your body to adjust to the treatment. When I started ASV, I had some funky things going on with me that took a while to sort out.

[JohnBFisher]

... Yeah! I am so excited that people answered my question! ...

Well, those of us on ASV units have gone through long struggles to get effective treatment. So, if we can help a fellow traveler along this journey, we are more than happy to help.

... I am currently under a sleep doctor. I also have fibromyalgia and because of it, I have several pain medications that ... most likely at least contributing to [Central Apneas]. Most of my apneas (probably 80%) are central apneas. ... turned into me being given a BiPAP because the CPAP made the centrals worse. ...

Which means you have complex sleep apnea. That is as you have pressure increased in your airway it triggers a central sleep apnea. That combined with the medications, it's little wonder 80% of your apnea events were central apneas.

... I used a BiPAP Auto for about 2 months before the doc said that it was not it was not doing anything for the central apnea so we needed to try the ASV. That's when we had the 3rd sleep study to try the ASV and I had zero apneas (central or obstructive) on it! ...

That's a pretty typical progress for someone with an ASV unit. Most insurance companies require proof that CPAP and BiPAP do not work before they will pay for an ASV unit.

... We are using the SleepyHead software to monitor me and the numbers are looking good. I think the highest I have gotten is 2 which is significantly better than the 88 I had without therapy or the 70s I continued to have with the BiPAP. ...

EXCELLENT! The best patient is an involved patient. You will eventually attain much better sleep.

Sometimes you will run across a medical professional that will try to tell you that you should not monitor your sleep numbers. Simply ask them if they think an insulin dependent diabetic patient should not monitor their blood glucose levels. Then point out that you are only monitoring your numbers to see if the therapy is effective. The belief that a patient should not monitor their own metrics is VERY out dated. By doing so you will have a better sense of how you are doing toward sleeping well.

... I see my sleep doc regularly, so I will mention the headaches to him, but I just wondered if anyone else had experienced it. ...

In addition to the idea that the mask might be contributing to the headache, I'ld like to propose another possible situation. You probably are moving a LOT less than without an ASV unit. With fibromyalgia, simply not moving could contribute to an increase in pain in your nerves in your head. It might be a sign of increased tension / stress in your muscles in your shoulder / neck area.

... There is a distinct possibility that the strap from the mask is causing the headache, too. I have tried 6 different masks over the last few months. I am currently using the Quattro Air. I cannot seem to get the adjustments right. If it is looser, it leaks like crazy; but if it is tighter, it hurts my face and neck. I also have the Quattro FX for Her, but it leaks even more than the Quattro Air. I am going tomorrow morning to my DME to do a "mask fitting" so perhaps I will find one that works better. ...

Sadly, this can be one of the most difficult challenges of xPAP therapy. ASV units only make it worse. Most DMEs have NO clue about how suddenly an ASV unit can switch from low to high pressure.

One thing that helps me is to use a mask liner:

http://www.remzzzs.com/Default.asp
http://padacheek.com/PAC_Maskliners.html

Additionally the strap cushions from Pad-A-Cheek can help reduce the pressure on the face and neck. In your case this might be a big help.

In the long run you will find a mask where you can tighten it enough to get the seal that you need but not so much that you feel as if you are using a tourniquet to hold your mask to your face! It really is a balancing act. Additionally, you will probably need to replace the mask and cushions more frequently than most xPAP users. The pressure swings tends to make the materials stiffen up, which contributes to leaks. I find I have to replace my cushions once a month .. and sometimes more often.

... My settings are as follows:
EPAP: 5.0 IPAP: 8.0-20.0 cmH2O PS: 3.0/15.0 ...

These look pretty normal .. nothing unusual here.

... Thanks again for any advice you may have! ...

Here's hoping you soon get your mask / headache issues handled and can soon enjoy a night of deep rest. That should in fact help reduce some of your fibromyalgia pain. A rested body has more ability to handle the day to day aches and pains.

Best wishes and do keep us updated.

[Pugsy]

Welcome to the forum.

Don't forget that the cervical spine can aggravate headaches and that may be a factor in yours with the headgear for your mask.
I have a bad neck and some mask straps (especially those lower straps at the base of the skull area) simply aggravate my neck and that in turn also causes more headaches.
Sometimes it might also be the bed pillow that is now used or the position we are keeping our head in with the mask.
So you might want to experiment with bed pillows too.

Here lately I have been waking with more headaches than usual and my data looks great....but my neck has been hurting more lately so I am fairly confident my headaches are related to the cervical spine issues that I have. Fixing those issues has been a problem for nearly 40 years but I keep trying.

[NateS]

Hi, everyone,
I am new to this forum as well new to ASV use. I just got my ASV a few days ago, but I have woken up every day since I received it with a headache. I was not being treated optimally with the BiPAP auto, but I didn't wake up with headaches. I am just curious if anyone else has experienced headaches with ASV usage.
Thanks!

My story in a nutshell may be helpful to you on the subject of severe headaches. Here it is in one excerpt from SleepyHead:



The severe headaches occurred for me during the brief period I was on the setttings indicated, which were too low for me. I experienced great relief and excellent therapy when the settings were corrected as indicated.

Best wishes, Nate

PS - I should clarify that I am not recommending that you adopt the settings that worked for me. I am merely suggesting that a small adjustment can make a large difference in how you feel and in the effectiveness of your therapy. Therefore I am merely illustrating by example the advice given you by John Fisher to recontact your doctor to inquir as to the correctness of your present settings.

[Mabutu]

if you're on opiod based pain relief, be aware they can cause central events, especially in higher doses or the elderly

[musculus]

Headache could be the result of frequent and drastic oxygen saturation changes. Can you post your sleepyhead daily report here?

musculus

Hi, everyone,
I am new to this forum as well new to ASV use. I just got my ASV a few days ago, but I have woken up every day since I received it with a headache. I was not being treated optimally with the BiPAP auto, but I didn't wake up with headaches. I am just curious if anyone else has experienced headaches with ASV usage.
Thanks!

[mj2mom]

Thanks everyone! I think that I have realized that the issue is not the ASV itself, but the masks. I am trying and trying to find a mask that does not blow out at higher pressures. Everything works fine until it gets up into my higher pressures (it can go up to 20). Then, they all leak live sieves. I have tried 3 different nasal masks and 6 different FMM masks to no avail. I am considering a hybrid. Anyway, I think that the headaches are due to having to pull the straps too tight in the middle of the night and/or not being able to rest my head fully on the pillow because of the mask. Ugh!

[JohnBFisher]

Have you tried a mask liner? There's a reason (my own experience) I offered that suggestion. It really does help.