Neurontin and Sleep Difficulty

[Kwazylegs]

It's been a while since I've posted here...I've been doing fairly well with the 1200mg gabapentin, 1 tablet Norco 10/325, and 1.25mg clonazepam each night.

The reasons for taking these meds are primary RLS made worse since spine surgery 2 years ago, idiopathic neuropathy, and painful post-surgical right foot symptoms (shocking pains).

About a month ago, I began experiencing increased muscle spasms in my feet and right leg, which seemed to be made better by increasing my dose of Norco to 1-1/2 tablets.

I'm not sure now if this increase in Norco really made a difference in the muscular cramping, which seems to be related to the worsening post-surgical right foot symptoms.

Within the past week, however, I began experiencing fragmented sleep...waking every 2 hours, and although I've scaled back on the Norco to 1 tab/night, the sleep thing hasn't improved.

I've read on this forum that someone mentioned an acknowledged problem for some people taking Neurontin (gabapentin), that it could cause this fragmented sleep.

Have any of you experienced this or heard of this?

Thanks.

[badnights]

Haven't heard of that association, sorry, but I think a lot of us have fragmented sleep. I sure do. I was on gabapentin for a while, but I'm not anymore, and my sleep is still fragmented.

[ViewsAskew]

Hi Kwazy - how's the south treating you?

I'm not sure it's familiar to me, but I do know that many of these drugs at higher doses cause sleep fragmentation for me. I never sleep through the night, though I can sleep for 8 hours at a time; I awaken at least 5 times and upwards of 30. I almost always fall to sleep quickly, but when you start waking up every 5 to 10 minutes, it just isn't sleep!

I hope you figure it out soon.

[Kwazylegs]

Thanks for the replies. I guess my recent sleep changes are just a "normal" part of my life now, and probably not related to the medications I'm taking.

I tend to react to changes like this by changing the medications I'm taking...but maybe I just need to wait and see if things settle down again.

Hi Ann. Thanks for asking how things are down here in S. Alabama. Overall, I'd have to say I'm glad we moved down here. but although we live about 9 miles from the Gulf (which has been a good thing...the beach has been a really relaxing place to watch the sun go down...pretty restorative.

Hopefully after this oil spill thing is resolved, the environment will bounce back...I'm afraid that it's going to be a real mess in the interim, though.

Things haven't really changed much regarding RLS doctors since we've moved here...my PCP seems to be the one doctor that I'm going to rely on for helping me. The one neuro I've seen uses DA's, Lyrica, etc., but is deferring low-dose opioid treatment to pain specialists.

Just like in Illinois, I'm finding my primary care doc to be the most willing to treat "all" of me, and that's a good thing. And, I've recently found out that one of his sub-specialties is sleep medicine...another good thing.

I hope that you all are doing well, and look forward to hearing from you again...hopefully with news that's finding you feeling rested and at peace.

And bethf, thanks to you also for responding here...I hope that your fragmented sleep might become more consistently continuous in the future.

---Andy

[Polar Bear]

I think fragmented sleep becomes a part of our condition regardless of whether symtoms are playing up or not, unless perhaps a heavy dose of sleeping pill is used, which my doc won't do, he will only give a moderate dosage of this. Probably quite rightly tho I would just love a decent night's sleep.

Like you, Kwazylegs , My primary care doc takes care of all of me, he uses the Mayo Algorithm. Neuro was of no benefit, he knew less than me about rls and said so.

Hope the oil spillage gets under control pretty soon, unfortunately not soon enough.

[doety]

I haven't been on in a while, either. I tend to wait until I'm about to jump out the window -- but am sure glad there's a wonderful core group of people who stick around (THANK YOU). I've been wondering whether the fragmented sleep was my lot now -- guess so. I had been diagnosed with "central apnea," which the doc said was caused by the Methadone I take (20 mg each night) plus .5 Clonazepam. Tried to get me off that using Requip, which just about did me in. Now I'm back to the Methadone and Clonazepam. Bed about 9, up at 12 something, back to bed, up at 2 something. Bed. Up at 3:30, at which point I just froth myself up a coffee with milk and carmel flavoring. Sometimes after that, I can still get in 2 or 3 more hours. So yeah, about 8 hour a night. For a while, I thought I would stay put because now I'm using oxygen with my CPAP machine (I keep thinking: I've found the answer!!). That only lasted a few days, then back to up and down. Talked to the doc -- he said I'm at the end of the road as far as meds to take. Could you tell me about the drug you're taking (not Clonazepam or Neurontin, the other one)? Is that new? Sure would love to hear some magical breakthrough.

[SquirmingSusan]

Waking up every couple hours is not fragmented sleep. You can still get some quality sleep in that time, including a whole sleep cycle of light, deep, and REM. It's annoying not to be able to sleep but it can still be restorative.

Truly fragmented sleep is caused by things like apnea, narcolepsy, PLMs, medications, and other things that cause arousals or "microarousals" every few minutes. Then there's just no way to get deep restorative sleep.

I think the only real way to find out just how fragmented your sleep is is to have a sleep study. But you can tell by how tired you are during the day. If you've slept for 6-8 hours total, even if you've awakened every hour or two, and you're still trashed during the day the odds are that you sleep is being interrupted more often than you realize. A sleep study will tell you if all those arousals are from apnea, PLMs, or "spontaneous."

I have a Zeo and it showed my particular variety of fragmentation because of my narcolepsy, but it doesn't show the microarousals of apnea.

The only drug out there that I know of that can "defragment" sleep is Xyrem. It actually organizes sleep so that there are periods of deep, light and REM. But then you have to set an alarm clock to wake you up to take the second dose. My pain doctor told me he prescribes it to people with fibro and insomnia, even though the FDA approval is only for narcolepsy.

I guess my point is that if you're treating your RLS and your apnea and your PLMD and you're still not feeling rested, then it's time to talk to the sleep doctor and figure out why. I finally got my answer but it took a lot of persistence (which is hard to have when you're too sleepy to function).

[Kwazylegs]

Doety,

Sorry for the nearly 6 day delay in replying...I was out of town without a computer.

I don't know if your question regarding the 3rd medication was directed towards me or to Susan.

I've been taking Norco (hydrocodone/acetaminophen) in addition to the gabapentin and clonazepam.

Sorry to hear about your "up-down-up-down" sleep difficulty.

I know that each morning I feel really tired and dragged-out, and so I'm really not getting much quality sleep. I probably should have another sleep study done, since so much has changed in my life in the past few years.

Hope that you all have a good night tonight.

--Andy

[doety]

Thanks, Andy. Sorry you feel dragged out. My most recent sleep study was a few months back, and that's when the doc diagnosed the "central apnea," which he said meant I wasn't even trying to breathe at night." That's thrown a kink in my life -- can't just pick up and do anything spontaneous. Looking for an RV right now that would accommodate this clunky oxygen concentrator. (But, as I keep telling myself: I live! I don't have cancer! ETC).
If I interrupt my sleep cycle...say I decide to get up at 6 and not go back to bed and get a couple more hours of sleep...then I fall asleep off and on all day, usually right in someone's face. It's embarrassing. (Or more than that when I'm driving, which I really can't do in the afternoon.)
So, I'll check back here from time to time, hope for a giant jump in research, and try not to be so impatient with myself.

[Kwazylegs]

Doety,

I need to learn more about sleep apnea...the central apnea that you have must really be impacting your daily life activities.

You mentioned that the methadone was responsible for this apnea? Or do you have a pre-existing apnea that's being aggravated by the methadone?

I've never used methadone, but I've read that it can be extremely helpful to RLS sufferers who weren't helped by many of the other treatment options.

And, as you mentioned, each of us does have something that we can be grateful for.

For me, I just try to focus on the positive things in my days and nights. When I have a difficult time with this RLS and pain, I try to remember that I've had it before, and I did get through it.

Hope everyone has a good day today.

---Andy

[doety]

Andy: I feel a little funny about this, because I've posted it before and I'm not hearing any "yeas or nays" from the board leaders (that I can remember). I have had apnea for years, but didn't pay much attention. After the recent sleep study, the doc (who had not prescribed the methadone in the first place) was quite upset with the results and told me flatly "methadone can cause central apnea." He sent over oxygen, etc. and told me I must use it. At first I thought it would keep me in bed all night, but no such luck. That makes me wonder: if I'm taking Methadone for RLS, and I've got oxygen for the central apnea, why the bleeping hell do I get up? A puzzle.

And you're right. Methadone is sort of the current thing to get if you've gone through the dopamine agonists and they don't work. And quite a few people (Zach and others who are active here) swear by it. But. As some of us have found out, it doesn't always get you through the night. I'm taking 20 mg. and I don't want to increase it. I'm afraid of the direction that's going. It already interferes with my brain and work I have to do -- I'll be sitting at my computer trying to write or edit and I go to sleep. (The last time I did that, I woke up and found that somehow I'd sent everything in my "in" box to my "delete" box. No crisis, but surprising!)

RLS seems to rule my life. I do everything I can to combat it. I exercise for an hour or two, my sleeping room is cool and quiet, I keep regular hours, ETC ETC -- all that stuff we've all learned over the years. But, nothing's working.

I do wish you the best. I would like to tell everyone about a wonderful website to watch, at least during the day, what will make you happy:
http://www.hornbyeagles.com/webcam.htm
a live webcam on some eagles and their baby!!

[Kwazylegs]

Doety,

I feel your frustration, and I'm sorry that you have yet to find that place where everything just seems to come together successfully for you.

For what it's worth, I personally have found that there are times when I focus so intensely on "arranging" the circumstances in my life that I have control of, it becomes a kind of obsession. The harder I try to find solutions to problems in my life, the more elusive they become.

For me, it seems that when I sort of "let things happen", somehow it all works out. I don't mean to say that I simply stop trying to get better, but rather that when I try something, I don't anticipate the results of my efforts. This relieves me of a great deal of the stress associated with being responsible for the outcome.

At this point in my life, I hold onto my days and nights more loosely...I don't grab onto things with as much intensity as before, and I have more of a sense of freedom to live each day as best I can.

I don't know if this makes much sense, but it seems to work for me.

Also, thanks for the link...it's always great to see some uplifting things amidst the difficulties we face.

--Andy

[doety]

That's great advice. Yes, I grab tightly. But -- you know -- you're trying so hard to sleep so you can get to the long-awaited brunch with old comrads, but you can't go to sleep 'til 3:30, and then you go and just fall asleep! Nuts! But mostly, I'm very lucky. Retired, so can usually sleep when I can. I have many wonderful things in my life. Thanks!

[Polar Bear]

Doety, like you I am retired and this has made dealing with my lack of sleep issue so much easier. I don't really ever nap during the day but without the pressure of paid employment being tired is not the problem that it used to be. Sleep is usually a total of about 4 - 5 hours per night, but often there is no sleep at all. Retirement has lifted the clock watching of the early morning hours. And yes, like you, I am thankful for so many good things in life.

Andy, I so understand what you are saying about 'arranging' life's circumstances and seeking solutions and answers to everything. It would be wonderful to be able to just 'let things happen' and I am trying very hard to have more of this attitude. Like you, I now can hold onto my days and nights more loosely. Less intensity can only be good for us. I like your comment 'freedom to live each day as best I can'. Sounds good to me.

[SquirmingSusan]

Doety, I don't know what you're looking for from us. I don't know that much about sleep apnea. I know that it's possible for methadone to cause some breathing depression so it's possible that it is the cause of your central apnea. But most of us who take methadone don't have a problem that way. You can always write to Dr. B about it.

So even with the meds and the oxygen you're still exhausted during the day? Will your doctor give you stimulants to help during the day? Out of curiosity, what was your Apnea-Hypopnea Index (AHI) on your last sleep study?

The whole thing with sleep disordered breathing is really bizarre. I always thought that benzos, like clonazepam, were worse than the opiates as far as suppressing breathing. But I looked up the connection between clonazepam and apnea and found that clonazepam is often used to treat apnea. Something about the breathing center being over-excited and the clonazepam calming it down and making the apnea better. But it also CAN suppress breathing. So who knows?!

Bottom line, if you're still waking all the time and can't stay awake during the day, keep pressing the doctors for answers.