Quantcast

Bookmark and Share
General Discussion on any topic relating to CPAP and/or Sleep Apnea.
drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 1:29 pm

Hi all,

So I've been using my CPAP for three months now, with 100% compliance (7-8 hours most nights). I'm on a fixed pressure of 8 (clinical settings were disabled by the DME), and my average AHI reported by both the machine and sleepyhead is slightly below 1 (the highest I've seen it since treatment is 3, but usually it's between .1-.7). So, my sleep doc couldn't be more pleased and tells me what wonderful sleep I'm getting. But he obviously doesn't listen to a word I'm saying, because...

I feel like absolute crap almost every day. I don't have any problems getting to sleep, and I don't wake up during the night for more than a minute or so (usually my nighttime wake-ups are only a few seconds), so I don't have classic insomnia. So, I'm 'unconscious' all night, but during the night I don't feel like I'm actually resting. I wake up paralyzed, and I spend most of my day in a complete sleepy fog. Sometimes I get about 3-5 hours of "good" brain time during the day, but otherwise I'm barely functional -- I'm so sleepy it's all I can do sit upright without falling asleep. I'm behind on everything at work, and I'm considering taking medical leave. I actually feel *worse* since starting CPAP than I did before. I've been a poor sleeper for years (probably at least partly attributable to apnea, but I'm guessing that there's something else going on). Some weekends I'll sleep my 7-8 hours with the CPAP, and wake up feeling horrible. So I take it off, fall back asleep, and sleep another 4-6 hours without it and finally wake up feeling decent. But that obviously throws off my sleep schedule, which I know is a bad thing.

I have frequent nightmares (sometimes very disturbing, that leave me anxiety-ridden the next day), and sometimes my dreams are just vivid and stressful (but not necessarily disturbing). I've had nightmares for years (no history of PTSD here, so idiopathic nightmares, which I've discovered there's almost no research on), and I frequently (and still do) wake up shouting from my dreams because of the nightmares (my partner doesn't love being woken up to my cries for "HELP! HELP!" all night long).

I've talked to my therapist, psychiatrist, sleep doctor, and a sleep psychologist about the excessive sleepiness and seeming poor sleep, and none seems to have any useful suggestions. The sleep doctor only cares about the AHI. He says I'm doing great and should ignore all of the sleepiness, because my apnea is controlled. The sleep psychologist is used to coaching people with insomnia, so gave me some CBT-I/sleepy hygiene strategies, most if which I was already following (e.g., don't spend extra time in bed, no screens before sleep, get out of bed if not sleeping, don't go to bed until legitimately sleepy), but had little to say about the nightmares except "gosh, that sounds awful!" My therapist says she doesn't know much about sleep disorders, so she left it to everyone else.

That brings us to the psychiatrist. I do suffer from anxiety, which is under control right now with a relatively high-ish dose of Effexor. I also take 1mg clonazepam before sleep, which has actually significantly helped reduce the severity of my nightmares and reduced my nighttime arousals. We've experimented with lots of other things too: prazosin (used to treat nightmares in PTSD patients -- didn't do anything for me), trazadone (didn't do anything), amitriptyline (turned me into even more of a zombie the next day), low-dose zyprexa at bedtime (same thing as the amitriptyline -- zombie-city).

It seems there are a few articles reporting that, even with sufficient CPAP treatment (>7 hours/night) a substantial proportion of people still show evidence of excessive sleepiness:

http://www.journalsleep.org/Articles/300605.pdf
http://erj.ersjournals.com/content/33/5/1062.short

I should also add that I'm not overweight (BMI of 24), I don't snore (I didn't even snore when I wasn't being treated with CPAP), and although I'm not getting crazy amounts of exercise, I'm also not totally sedentary either -- I make sure I get >10,000 steps per day based on my Garmin watch. I'd LOVE to return to my jogging routine, but I'm simply too fatigued to be active right now.

So -- I'm wondering if any of you experience non-restorative sleep, and if any of you have dealt with this in the past, what strategies have you used that have been helpful?

Julie
 
Posts: 14478
Joined: Tue Feb 28, 2006 12:58 pm
Location: Canada E.
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby Julie on Sun Apr 23, 2017 2:00 pm

What are your pressure settings and do you have any idea of your AHI?

drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 2:02 pm

I put those in the first paragraph of my posting.

User avatar
Wulfman...
 
Posts: 5576
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby Wulfman... on Sun Apr 23, 2017 2:12 pm

First of all, they can't lock you out of your machine settings.
Here's a link to download the provider manual.

https://sleep.tnet.com/home/files/resme ... -guide.pdf

Next, at three months, you're just beginning your therapy and lots of the "recovery" depends on how long you've had it and how long it takes to pay off your "sleep debt". Most of the users don't experience overnight results. It's "baby steps".

If you aren't already, you need to get some software like Sleepyhead and see what's happening during the night.
It might also help if your doctor could get you a (free) loaner pulse-oximeter to do some overnight testing to see if your blood-oxygen is 89 or higher.


Den

.
(4) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 13 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

49er
 
Posts: 5392
Joined: Mon Jan 16, 2012 8:18 am
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby 49er on Sun Apr 23, 2017 2:16 pm

Anectodal reports of people reporting excessing sleepiness on Effexor. May or may not apply to your cause but certainly worth investigating.

https://www.google.com/search?q=Effexor ... s&start=10

49er

_________________
Mask: SleepWeaver Elan™ Soft Cloth Nasal CPAP Mask - Starter Kit
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Use SleepyHead, Pressure is 13.6/9.6
Great quotes from Pugsy
"Beating a person up doesn't help...especially when the person is already down to start with."
"Why do we have to keep swinging the "you should have tried harder" 2 X 4?"

drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 2:25 pm

49er wrote:Anectodal reports of people reporting excessing sleepiness on Effexor. May or may not apply to your cause but certainly worth investigating.

https://www.google.com/search?q=Effexor ... s&start=10

49er


Yeah -- Effexor is known to suppress REM sleep, so I wouldn't be surprised if it were screwing with my sleep in other ways. But without the Effexor, I have daily panic attacks that can last up to 6 hours and am completely incapacitated. I feel like getting my sleep back on track is the next step in getting back to full functionality, but it's so tough.

Psychiatrist has prescribed modafinil, but I'm waiting on insurance approval for that. Even the generic version is many hundreds of dollars per month, so I'm sure they won't want to pay for it if they can get out of it.

Has anyone here had experience with neurontin/gabapentin for sleep? The psychiatrist said there's some limited evidence that it may normalize sleep architecture in some people with disrupted architecture. I feel like I'm turning into a walking pharmacy, though.

User avatar
Wulfman...
 
Posts: 5576
Joined: Mon Sep 01, 2014 6:41 pm
Location: Nearest fishing spot
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby Wulfman... on Sun Apr 23, 2017 2:29 pm

(4) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 13 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05

drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 2:33 pm

Wulfman... wrote:First of all, they can't lock you out of your machine settings.
Here's a link to download the provider manual.

https://sleep.tnet.com/home/files/resme ... -guide.pdf

Next, at three months, you're just beginning your therapy and lots of the "recovery" depends on how long you've had it and how long it takes to pay off your "sleep debt". Most of the users don't experience overnight results. It's "baby steps".

If you aren't already, you need to get some software like Sleepyhead and see what's happening during the night.
It might also help if your doctor could get you a (free) loaner pulse-oximeter to do some overnight testing to see if your blood-oxygen is 89 or higher.


Den

.


Thanks. According to my AHI numbers, though, my settings are working, so I don't need more pressure (very low AHI). And like I mentioned in my first post, I check sleepyhead. I see the events, and I see lots of event-like things that don't get flagged. I posted about it on here a while ago http://www.cpaptalk.com/viewtopic.php?f=1&t=115663&p=1122541#p1122541, and the consensus was that it wasn't anything to worry about. I posted about it to Reddit's /r/CPAP forum as well and got some nasty responses telling me to STFU and stop moving around in my sleep 8) . I mentioned some of these issues to the sleep doc and he said that some minor events are part of the normal flow of sleep, and that as long as they AHI was low, I was a winner and a champ. Basically, he ignored all of my concerns and turned back to the AHI report from the CPAP machine.

So if the insane, excessive sleepiness and non-restorative sleep I'm getting is me "paying off sleep debt," how does one go about normal life in the meantime? Like I said in my OP, I can barely function during the day due to sleepiness.

User avatar
TASmart
 
Posts: 212
Joined: Wed Jan 04, 2017 7:23 pm
Location: Eugene, OR
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby TASmart on Sun Apr 23, 2017 2:40 pm

From the 2nd linked article:
"the final prevalence rate of RES was 6.0% (95% CI 3.9–8.01). Patients with RES were younger and more sleepy at diagnosis. The relative risk of having RES was 5.3 (95% CI 1.6–22.1), when ESS before treatment was ≥11. Scores of emotional and energy Nottingham Health Profile domains were two times worse in patients with RES."

So even with a compliance standard of 3 hours nightly use, the occurrence of residual sleepiness is 6%. That is a pretty small measure of significant numbers retain residual sleepiness. While your therapy may not be working, or may not be optimized, at this point in your treatment it's a stretch to conclude it does not work for you. What else has been investigated as a source of your daytime somnolence? I am thinking of cardiac insufficiency, thyroid issues, metabolic dysfunctions, and so on. Having been a treated for both major depression and anxiety, bit those conditions are exhausting on their own, so that is a concern.

As far as sleep disruptions, did your titration study show normal sleep architecture? You may need another PSG to determine if you are suffering further SDB, or other reasons for sleep not being restful.

_________________
Machine Mask 
Marginal gains everyday

drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 2:50 pm

TASmart wrote:So even with a compliance standard of 3 hours nightly use, the occurrence of residual sleepiness is 6%. That is a pretty small measure of significant numbers retain residual sleepiness. While your therapy may not be working, or may not be optimized, at this point in your treatment it's a stretch to conclude it does not work for you. What else has been investigated as a source of your daytime somnolence? I am thinking of cardiac insufficiency, thyroid issues, metabolic dysfunctions, and so on. Having been a treated for both major depression and anxiety, bit those conditions are exhausting on their own, so that is a concern.

As far as sleep disruptions, did your titration study show normal sleep architecture? You may need another PSG to determine if you are suffering further SDB, or other reasons for sleep not being restful.


Across the studies I've read, and a few review papers, the people with RES among fully compliant CPAP users is about 10% -- so not the majority, but a significant minority. And studies seem to note that RES is more likely to occur with people who original had mild-moderate AHIs (like me) compared to people who had severe apnea (not me). So people with bad apnea are more likely to return to normal inters of subjective sleep quality and elimination of residual excessive sleepiness.

I've been tested for thyroid function, metabolic dysfunctions, and I have normal cardiac function (recent treadmill test and echo).

I will say that in my titration study, I had absolutely 0 REM sleep. I asked the sleep doc about this and he said that it's common to see abnormal architectures in the lab, particularly in titration studies, when people aren't used to CPAP. So he told me to ignore that.

And yeah -- I don't discount the impact that anxiety or the meds may be having on my sleepiness.

I posted here because I still feel like I "fight" with my machine all night. My mask isn't uncomfortable, but I get tangled in the hose, or it gets caught on something, or the pillows slip out of my nose and I have to wake up and put them back in, etc.

I tried a nasal mask (the F20), but it was awful -- lots of condensation from my exhalations inside the mask that irritated my nose, and then I'd have to reach up and pull the mask away to scratch my nose, wipe out the inside of the mask, etc, all night long. I do much better with the pillows.

User avatar
TASmart
 
Posts: 212
Joined: Wed Jan 04, 2017 7:23 pm
Location: Eugene, OR
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby TASmart on Sun Apr 23, 2017 2:59 pm

I believe the comfort and mask things can indeed keep you from getting into REM and stage 3/4 non-REM sleeps which are the most restful. I know I have better results with a nasal mask than pillow, thus far I am seeing a drop of close to 2 on the AHI front. makes no sense to me, pressure in the nose aught to be pressure in the nose, but that's what I am seeing.

What kind of RERA are you seeing?

_________________
Machine Mask 
Marginal gains everyday

drfaust
 
Posts: 18
Joined: Sat Feb 25, 2017 9:09 pm
Gender: None specified

Re: Three months in and I still feel like absolute crap

Postby drfaust on Sun Apr 23, 2017 3:02 pm

What kind of RERA are you seeing?


Sleepyhead reports almost no RERAs, though that's where most of the problem was in my initial PSG (not too many apneas an hypopneas, actually -- mostly RERAs). I bet if it measured EMG or EEG activity, though, it would be recording a lot more RERAs.

User avatar
robysue
 
Posts: 7310
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: Three months in and I still feel like absolute crap

Postby robysue on Sun Apr 23, 2017 3:28 pm

drfaust,

Welcome to the forum. And I'm so sorry that you are having such difficulties. I noticed you commented on a post of mine in another thread, so I thought I'd try to give you the short version of my story.

The first three months of PAPing, I had a major crash and burn in terms of daytime functioning. I looked so bad that people at work were commenting on how ill I looked. I could not function and for the first time my life, I was genuinely worried about falling asleep at the wheel. It was hell. And yet, my AHI was always reported to be below 1.5, and often below 1.0. I was using the machine for the whole night every single night and, quite frankly, I was terrified of allowing myself to sleep without the machine because I figured that if I slept one night without it and felt even marginally better, there would be no way that I could force myself to put the damned mask back on my nose the next night.

Unlike you, however, my adjustment included a growing insomnia monster. But even so, it was very frustrating to try to deal with the sleep doc's PA who never managed to answer my questions about why the CPAP had triggered so many problems in me.

I've learned (not just with CPAP, but also with my migraines and the meds required to keep them under control) that it's hard to be an "outlier" in terms of medical treatment. Most doctors just don't know how to deal with a patient who does not respond as expected to a standard treatment---particularly when the data indicate the treatment is "effective" in terms of the numbers used to track the disease, but far from "effective" in terms of improving the patient's quality of life. There's nothing worse than being "an interesting case" to a doctor who is not actually interested in dealing with "interesting cases."

And it sounds like you are "an interesting case."

Some things stand out in what you've written here. First and foremost---it sounds like you are dealing with several interrelated medical problems: The OSA/CPAP stuff, the idiopathic (i.e. unexplained) nightmares, the excessive daytime sleepiness, the anxiety. You've taken several different things for the anxiety and/or the nightmares in the past, some of which are known to affect sleep. You and your therapist/doctor have found that a "relatively high-ish dose of Effexor" controls the anxiety well enough and that a "1mg clonazepam before sleep" significantly reduces the severity of nightmares and nighttime arousals.

Some questions come to mind:

1) Your medical team includes a sleep doctor (who only looks at the AHI *sheesh*), a sleep psychologist (who usually deals with insomnia and has little to offer beyond "good sleep hygiene"), a therapist, and a psychiatrist (who prescribed both the Effexor and clonazepam?). I assume the therapist is working on anxiety issues with you since you say the therapist "says she doesn't know much about sleep disorders, , so she left it to everyone else." I also assume that the psychiatrist is at least aware, and probably involved in treating, the nightmare stuff. But it's not clear that any of them are talking with each other ---except through what you tell them other people on your team have to say. And that's a difficult situation to change, but quite frankly if your medical team were better at communicating with each other you might not be so frustrated right now. When was the last time you saw each of these people? Do you have to remind each and every one of them about what the others on your medical team are telling you to do and which drugs the therapist and/or the psychiatrist has prescribed to you?

2) How long have you been on Effexor? Has the dose been changed since starting CPAP? If so, was it increased or decreased? Have you talked to the person who wrote the Effexor prescription about side effects? At Drugs.com, common side effects of Effexor include "sleep problems (insomnia), strange dreams, tired feeling". So it's possible that some of your continuing problems with daytime functioning may be aggravated (or possibly caused by) a side effect to the Effexor. It's possible that the dosage may need to be adjusted since your body is supposedly getting 7 hours of apnea-free sleep now.

3) How long have you been taking the clonazepam? Has the dose been changed since starting CPAP? If so, was it increased or decreased? Have you talked to the person who wrote the clonazepam prescription about ide effects? At Drugs.com, common side effects of clonazepam include "feeling tired" and "drowsiness" and "sleepiness or unusual drowsiness" is listed under the heading Major Side Effects. "Severe drowsiness" is listed as an important side effect that warrants calling the prescribing doctor according to Drugs.com. So it's possible that some of your continuing problems with daytime functioning may be aggravated (or possibly caused by) a side effect to the clonazepam. It's possible that the dosage may need to be adjusted since your body is supposedly getting 7 hours of apnea-free sleep now.

If it seems like I'm wandering far a field from your question about CPAP and why you feel so lousy, just bear with me. During my own horrible adjustment period, a doctor-friend told my husband that I needed a "gardener" rather than a bunch of "mechanics" and he went on to explain that most doctors are "mechanics"---they treat one of the patient's conditions and they only worry about fixing that one condition. And because they're focused on that one problem, they don't tend to think about how their prescribed treatments affect (positively or negatively) the patient's other conditions or the patient's life as a whole. A doctor who is a "gardener" sees the patient as a whole and understands that if you do something to take care of Weed 1, it may adversely affect the Flowers and Trees you're trying to grow as well as make it harder to deal with Weeds 2 and 3. But "gardener" doctors are pretty rare and can be hard to find. (The role of the PCP is supposed to be that of the "gardener", but many times they are ignored by the specialists treating their patients.) It sounds like your sleep doctor is the quintessential example of a "mechanic". But so is your therapist.

Is there anyone on your medical team who is willing to listen to you when you try to bring up the larger, overall picture?

Is the sleep doctor who only looks at the AHI aware that you've had nightmares for years and that you are being treated by a psychiatrist for them? Is the sleep doc really cognizant of the medication you are on? I don't mean that you've written down on a list of drugs you take before your appointment with the sleep doc. I mean have you actually ask the sleep doc: Could the effective CPAP therapy mean I need to talk with the psychiatrist about whether the dosage of the Effexor or clonazepam may need to be adjusted? Have you talked at length to the sleep psychologist about your CPAP use and the fact that even with good sleep hygiene and the CPAP, you are not waking up feeling rested? Have you talked to the psychiatrist and the therapist about whether your current problems with the CPAP therapy not seeming to work may be tied up with an increase in anxiety or an increase in nightmares?

It seems there are a few articles reporting that, even with sufficient CPAP treatment (>7 hours/night) a substantial proportion of people still show evidence of excessive sleepiness:

http://www.journalsleep.org/Articles/300605.pdf
http://erj.ersjournals.com/content/33/5/1062.short
Yes, there are people who just don't seem to get much better in terms of day time functioning even with CPAP. But not much seems to be understood about why this happens. Around patient boards like this there are all kinds of pet theories about why this happens. One common patient hypothesis is that the damage caused by the years of untreated OSA simply doesn't heal as fast or as completely in some people. Another common patient hypothesis is that you have to make up your "sleep debt" before you start feeling better. Whether either of those has any basis in reality is well above my pay grade.

What does seem to be true, however, is that if you have any other sleep problems that are independent of the OSA, treating the OSA may not be enough to lead to a good outcome. Anecdotally there are cases of people who report other sleep disorders seem to become worse once they start CPAP. And fixing the bad sleep requires fixing all of the sleep disorders, not just the OSA. In your case, that might mean revisiting the old issues of nightmares and nighttime wakes. It's possible that with CPAP you are no longer waking up because of the nightmares, but that you're still having them and that they're severe enough to cause problems for you. It's also possible that you may still be dealing with too many microwakes and spontaneous arousals that you don't actually remember when you wake up in the morning. CPAP only prevents the arousals that are caused by respiratory distress (i.e. a collapsing or collapsed airway); CPAP does nothing to prevent other arousals.

Do you have a copy of your sleep study data? I mean the summary data with the summary graphs? If so, you need to look at what (if anything) was said about spontaneous arousals both on the diagnostic study and on the titration study (i.e. with CPAP).

What (if anything) was said in the sleep studies about your sleep stages? Are you getting enough deep, stage 3 sleep? Are you getting enough REM sleep? Those can be hard to determine without a sleep study, but they are questions that you should be asking the sleep doc, the sleep psychologist, and the psychiatrist.

What (if anything) was said in the sleep studies about limb movements? Any chance you might be dealing with PLMD? or RLS? (They are not the same condition.)

Finally you ask:

So -- I'm wondering if any of you experience non-restorative sleep, and if any of you have dealt with this in the past, what strategies have you used that have been helpful?

My own sleep has been hit or miss even with CPAP/APAP/BiPAP ever since I started PAPing. When things are going well, I feel pretty decent during the daytime, wake up with little or no pain in my hands or feet, my migraines and tension headaches are relatively easy to control and are not too numerous, my circadian rhythm problem doesn't get too far out of whack", and my mood is pretty stable. But if any one thing starts to go bad ---more headaches, more insomnia, a higher than normal AHI for several weeks, more (unexplained) moodiness, OR more problems with the circadian rhythm--- then it's only a matter of time before they ALL start to deteriorate. And if I don't let all three docs who deal with this collection of problems know exactly what's going on with the whole kit-and-kaboddle, then pretty soon everything starts to spiral out of control.

What helps? Mainly being aware of the connections between my sleep problems, my headache and pain problems, and my mood problems. For the sleep itself, when things go unexpectedly bad and I can't put a finger on what's wrong, sometimes keeping a sleep log for a couple of weeks to a month or so will provide some illumination into what the largest issue(s) that need to be tackled are. Then I can work with the appropriate member or members of my medical team to rein in the thing that is threatening to bring everything down like a house of cards.

But as I and my doctors keep telling each other: It's a process. And we have to stabilize a downward spiral before we can make progress in helping me climb out of the hole the spiral has dug. And that everything is connected together and that sometimes I have to work (hard) on multiple issues at the same time in order to crawl back out and get to where I want to be in terms of sleeping well, having most days be headache free, and not having wild mood swings.

Good luck!

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

User avatar
Uncle_Bob
 
Posts: 2733
Joined: Tue Feb 24, 2009 12:10 pm
Location: Arizona
Gender: Male

Re: Three months in and I still feel like absolute crap

Postby Uncle_Bob on Sun Apr 23, 2017 3:34 pm

TASmart wrote: makes no sense to me, pressure in the nose aught to be pressure in the nose, but that's what I am seeing.


TASmart wrote:Been on for just over a month.


TASmart wrote:What kind of RERA are you seeing?


I'm sure everyone's ears are wide open ...

User avatar
robysue
 
Posts: 7310
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Gender: Female

Re: Three months in and I still feel like absolute crap

Postby robysue on Sun Apr 23, 2017 3:42 pm

drfaust wrote:Has anyone here had experience with neurontin/gabapentin for sleep? The psychiatrist said there's some limited evidence that it may normalize sleep architecture in some people with disrupted architecture. I feel like I'm turning into a walking pharmacy, though.

My sleep doc had my trial gabapentin last fall when it was clear that there were an excess number of short wakes that show up in my data and on my fitbit that I don't remember and I was starting to feel worse in the daytime. Out of habit triggered by aerophagia, I routinely turn my machine off and back on as soon as I am vaguely aware that I'm awake. Last summer the number of short seessions----ones that are less than an hour in length---started to increase even though the number of wakes that I actually remembered stayed about about 0-2 per night.

At first things seemed quite promising: While on the gabapentin I started to see a lot of 3 hour long sessions and fewer sessions that were less than 90 minutes long. And I was feeling better. And those longer sessions were pretty good circumstantial evidence that the gabapentin was helping to normalize my sleep architecture.

But my weight slowly increased by about 5-8 pounds over the course of the next four months or so, which doesn't sound like much. But before last summer I usually weighed between 105 and 110, and this winter my weight started bouncing around the 113-116 range and except for when I was 7+ months pregnant, I don't think I've ever weighed as much as 116 pounds before. And as my weight went up, my energy went down and my AHI increased from the usually 1.5-2.5 range to the 4.0-5.0 range. So about a month or so ago, the sleep doc had me drop the gabapentin. The weight's not yet really come down, my energy is still a bit low, and we had to increase my min EPAP a bit to get the AHI to start coming down, but I'm also balancing aerophagia.

Overall, I'm glad I tried the gabapentin. Had I not put the pesky 5-8 pounds on over the winter, my guess is that my AHI would not have increased. Once the AHI started to be consistently above 4.0, everything else started on a downward spiral, and so the gabapentin had to go. It's a shame because the number of short sessions in my data has increased again. *sigh*

_________________
Machine: DreamStation BiPAP Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

Next

Return to CPAP and Sleep Apnea (CLICK HERE TO READ POSTS)

Who is online

Users browsing this forum: DeeCPAP, Goofproof, Holden4th, jsielke, klm49 and 33 guests