22.  GABAPENTIN (NEURONTIN) FOR SLEEP DISORDER

From a reader--

"We sound like twins!!  I am 58.  Drug induced midnight binge eating with complete amnesia for it, and all!!  One huge difference between us is that once I could get to sleep I would sleep 10-17 hours, all without being rested, of course.  My maximum stretch of solid sleep (interrupted only briefly for a quick pee and a drink of water) was 33 hours.  If I did not sleep as long as a I possibly could, I would come down with every bug I was exposed to, or just reactivate any bugs I had not quite cleared up. You know all this in terms of chronic relapsing sinus infections as well as bronchial/lung infections.  My first sign would be a fine pustular rash and then it would all head downhill rapidly from there. 

I had been constantly sick as a child, and the sleep problem became very clear by the time I was 14-15; long long sleep times without refreshment, and daytime fatigue.  I was massively stubborn, am blessed with very high intelligence, and am a rather Type A sort in terms of just pushing through obstacles and not caring what it cost my health.  I did not collapse with CFS/Fibro until I was 33 and got a good whack to the head, as well as injuries over almost all of my spine, in a car crash. 

I have been able to be evaluated a number of times at an overnight sleep lab.  I had mild obstructive sleep apnea (OSA) and treating that with a CPAP machine really helped (of course, only somewhat, LOL).  My primary sleep disorder is very brief Cortical Arousals (micro-arousals) - that means my brain is rapidly switching to the alpha wave pattern many many times a night during sleep.  My first sleep study showed an average of 64 arousals per hour, equalling about once per minute.  Waking up once per minute all night, every night.  With the CPAP machine in place, and using Zopiclone (Imovane) http://en.wikipedia.org/wiki/Zopiclone), my arousal rate dropped to an average of 44 per hour.  Over the course of 3-4 months, as I began to make up some of my decades long sleep deficit, I had a real change in daytime energy and stamina, reduced pain, reduced brain fog and all the rest.  Still crapped out most of the time, but some spells of being much improved.

I was then able to do better internet research (I am an RN but not able to work at all yet) and found a research abstract  (http://www.ncbi.nlm.nih.gov/pubmed/19410509) about using pregabalin (http://en.wikipedia.org/wiki/Pregabalin) aka the expensive new drug Lyrica.  I followed various bits of research from the authors of that study, and others from there, and so on.  Read drug profiles and research and patient experiences.  Judging and balancing everything I found I decided that the inexpensive parent drug gabapentin (http://en.wikipedia.org/wiki/Gabapentin) would be likely a better bet for me than the Lyrica. I have not tried the Lyrica, but am doing very much better on the gabapentin [neurontin]!!

My latest sleep study showed only 11 micro-arousals per hour now, not greatly elevated from what is a considered a normal rate. 

 I use the generic 100mg capsules.  The first one I took in the middle of an afternoon and was very pleasantly stoned for a few hours.  Oops.  Next trial capsule was at bedtime, and that was just fine - no apparent interaction with the zopiclone (no getting up and pigging out, no morning hang-over effect, etc.).  Over time I have worked my way up to taking one capsule the moment I wake up (yup!), another every 4-5 hours while awake, and 4 at bedtime.  [My last sleep study was with me only taking 3 at night, and none during the day.]

Apart from the self-evident direct benefits of having improved sleep quality, I am also likely to actually wake up (instead of just getting up whether I felt awake of not, as usual) after only 9-10 hours of sleep so I am no longer aggravated by uselessly sleeping at least half my life away.  And I don't have that grim 3 hour period of "waking up after getting up".  My previous average would be 12 hours of sleep (the CPAP actually records this) followed by a 3 hour wakeup period; some days I would be up and about but not really regain consciousness.  Now I can actually think and function (for example, be safe in the shower) after only being up 30 minutes or so.  A vast difference.

Remembering how good that first gabapentin capsule made me feel, I experimented with trying a half capsule in the daytime.  This was after using it for sleep for at least 2 weeks.  I found I did not get at all stoned this time, but my muscle gel was reduced and my pain was reduced as well.  My thinking brain also did better but whether that was due to less pain (and the fatigue the pain directly causes) or not was unclear.  I am still not at all clear about the improved cognitive function, given that some of it will be from getting useful sleep for a change, but the improvement is there.

I try to take my first gabapentin of the day (along with some meds to be taken on an empty stomach) about an hour or so before I am fully finished sleeping for the night (my sleep quality is much better but I still have frequent conscious wakenings) so that the worst of the muscle stiffness or excess muscle tone is treated before I get up.  Really nice to get up to much less pain!!  No matter how my day is going, I will experience a marked increase in pain and fatigue/weakness as well as muscle gelling about 4-5 hours after my first dose of the day.  I am trying to get smart enough to note the change coming on (instead of just toughing it out as usual) so that I get my next dose before I am too wrecked.  If the last dose of the day is within a couple of hours of bedtime, I use one of my overnight capsules and then take the other three at bedtime.  I have not yet finished fiddling around with the dosing and dose pattern.  If I am having a higher stress day, even if it is just because I am doing more because I am able to do more, I may need my dose sooner.  Other days, for no evident reason, I can go 5-6 hours between doses.

This is such a well-studied drug which has been on the market for so long, my doc is perfectly willing to let me fiddle with the dosing.  It is prescribed for post-shingles pain at doses of up to 1200mg three times a day!  I have not yet been over 700 mg total for a day.

I tend to get unpredictable periods, during the day, of drowsiness or grogginess or some other sort of altered consciousness.  Partly because I am less observant and less able to think straight or form memories, I have yet to see if the gabapentin tends to clear these spells up, or bring them on, or have no  evident connection.

Anyhow - it is a cheap and well known drug with an excellent side-effect and drug interaction profile.  Comes in 100mg capsules which can be easily divided. The only other treatment which had a dramatic effect on my muscle gelling and pain was getting my magnesium levels up properly, and the gabapentin is working in addition to that.

Gabapentin may be worthless for you, as it seems you and I have quite different brain chemistry - antidepressants have never sent me manic or anywhere near there. But, like you, I also had a very hard time getting to sleep, going as far back as age 7 that I can remember.  Eventually I became exhausted enough that 6mg of melatonin, plus some drugstore antihistamine or antinausea drug would let me get to sleep.  More recently I have needed actual prescription sleeping meds.  [A striking difference between us is that once I could get to sleep I would sleep forever.]  Looking back, I would have qualified as an ADHD kid and adult but smart enough to be able to function well with it.  Part of that was learning to become too intensely focused (sound familiar??) 

 

Further recollections about the gabapentin experience.  During the first week or more of using it during daytime I made sure it would not be on a day I had to drive or do any other complex thing - my head was definitely a bit weird after a dose.  Starting with half a capsule would have handled this, but I wanted to get on with the process.  Like many psychoactive drugs it works by altering neurotransmitter reception so it takes a fair while for it to do its thing and for the effects to become stable.  So, for some people, just taking it at night for 3-4 weeks before trying daytime use might be smart.  And daytime use may not make any difference for some of us, so it is not necessarily a goal.

 

And I did pack on some water - enough to notice and become concerned about.  This went away after about three weeks, if I recall correctly.  No gain of real weight at all.  I have been losing weight as a result of better quality sleep and greater activity during the days.

Well, I have more or less wrecked myself for the day being too intensely focused on writing this!  And I have been using my brain now for more than 7 hours so that is a pretty dumb thing for me to do.  (One aside:  I wonder if the XMRV will prove to be any kind of a cause of these afflictions, or just an opportunistic infection of severely weakened folk.  We shall stay tuned!)"

I have 3 different sites with 3 unique categories of products - all used by me for many years, so I can probably answer any questions you may have! Supplements - cold processed, highest bioavailability Immune Balancing Shake - Chocolate, Strawberry, French Vanilla - easy to use and tastes great Essential Oils - plant extracts that you sniff, use topically, or take internally - relieves a multitude of annoying problems   These are all the finest available.  If you are looking for natural ways to improve your health or relieve misery, I recommend these.  If you have questions, you can write me anytime dombush@bellsouth.net.  A list of things I use is at www.fms-help.com/what.htm.