Gabapentin and PLMD, SLEEP: I have been... - Restless Legs Syn...

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Gabapentin and PLMD, SLEEP

Maximus01 profile image
21 Replies

I have been taking Gabapentin for about three months now, hoping that it will help me sleep. At first, it worked really well; now I am waking up four hours later and the rest of the night I spend in a dozing stupor. I have also noticed that I am off balance when I get up. I feel unsure as I am going through my day being aware that I am not all there. Had an injury to my right hand twice and I don't even know how I did it. Probably running against something. I am also taking 1 mg Lorazepam for sleep. I have been taking that for many years. Perhaps the combination is the problem. I am afraid to mention it to my doctor because she will just tell me to get off the Lorazepam. This is not easy, since one has to taper down very slowly. Besides, it helps me with the anxiety that I have around the sleep. I always feel sleep deprived. Just venting. Any thoughts are so welcome though. Thank you.

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Maximus01
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21 Replies
SueJohnson profile image
SueJohnson

Being slightly off balance when you get up is a side effect of gabapentin that some have. I have it, but it goes away quickly. I wouldn't think the combination is a problem. I don't know why you are having the problems you are having unless you are elderly. Are you taking any other medicines? Also I am not sure why you are waking up after 4 hours. Have you tried taking more gabapentin to see if that helps?

Maximus01 profile image
Maximus01 in reply toSueJohnson

Thank you Sue, yes, I am elderly...78 last December. The whole thing is depressing since getting old is not a bowl of cherries. I am also in a lot of pain with a pain in my neck, but it always goes away after a couple of weeks. Have an appointment today with a chiropractor. Since I am already taking Gabapentin 300 mg 4 times a day (at 5:00, 7:00, and 600 mg at 9:00), I don't think my doctor wants to give me more, though I have not yet asked. I think the Gabapentin does help a little with the PLMD, but I have existing sleep problems on top of that. I do other things also, which help a little. Walk every morning (even if I don't feel like it) and spend a little time with animals at the shelter. I just don't know what else I could do. Thanks.

SueJohnson profile image
SueJohnson in reply toMaximus01

You take 600 mg at 9:00 which I assume is 1 to 2 hours from your bedtime. Then you should take 600 mg at 7:00. Try that and see if you are still waking up 4 hours later. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take more than 1200, take the additional amount at 5:00. If your doctor won't let you take more refer him/her to the Mayo Clinic Updated Algorithm for RLS if she/he is not familiar with it at mayoclinicproceedings.org/article/S0025-6196(20)31489-0/fulltext PLMD is treated the same as RLS.

Maximus01 profile image
Maximus01 in reply toSueJohnson

PS: I am not taking other meds, only 1 mg Lorazepam. I take vitamins and gentle iron. That's it.

Nikos64 profile image
Nikos64

I feel for you. Sleep can be elusive and I totally understand what you’re going through. Gabapentin is essentially a useless drug .. at least for me. Lorazepam used on a regular basis also becomes useless with time.

I’d probably taper off both. You will probably find — like I did — that letting your mind go to sleep naturally will ultimately give you deep restful sleep and a clear mind the next day.

I hope things get better for you!

Best wishes !

Butterflysun1 profile image
Butterflysun1

2 meds that affect your brain can have an additive effect so I think it’s quite likely that the combination is affecting you, not unlike eg the combination of alcohol with other meds often has. I stopped Pregabalin partly because it affected my balance. Falls as we age become more dangerous, fractures are more likely as we have increased chance of having osteoporosis. I know it’s hard to taper off lorazepam. I would discuss with your dr - in general they are our friends & not our enemies despite variations in knowledge in some areas

Carlettejaque profile image
Carlettejaque

Hi, I've been taking Gabapentin for 3 years. It is supposed to make you sleepy but I've never found that it helps with sleep. It does have unpleasant side effects. I feel constantly drunk, my balance is nil. I'm covered in bruises where I've stumbled into something. It causes brain fog, weight gain and short term memory problems and i have little concentration. It feels like I have dementia. Its also addictive. Having said all that it does what it is supposed to and stops neuropathic pain. I couldn't stop taking it because there is little else to stop that mind of pain.Doctors don't really understand the impact of the side effects. If there is something else, I would recommend you do your own research into it.

Bks429 profile image
Bks429

I take 600 mg of Gab at bedtime. I am 73. I immediately fall asleep but I too wake up 2 to 3 hours later. Lately the legs have started annoying me when I wake up which is a new development. Since I weaned off pramipexole about six months ago I was sleeping great. I don’t know what’s going on but I hate it. When I wake up I do stumble into the kitchen (which concerns me) and make a cup of chamomile tea. Most times that helps me fall back to sleep. I do wear an Apple Watch to sleep for fear that when I get up and stumble, if I do fall, at least it will alert someone!!!!

SueJohnson profile image
SueJohnson in reply toBks429

If you wake up 2 to 3 hours later, you are probably not taking enough gabapentin. 600 mg is a low dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, which is unlikely take the extra 6 hours before bedtime.

Maximus01 profile image
Maximus01 in reply toSueJohnson

Thank you Sue, I actually am allowed 1200 mg Gabapentin throughout the day. I take 600 at 7:00 pm (the capsules are 300 ea), and then another 600 mg 1 hr before bed, together with 1 mg Lorazepam (Ativan). I woke up as usual 2 hrs later, got up and took another 300 mg capsule together with another 1 mg Lorazepam and then was able to sleep from around 12:00 to 6:30 A.M. My doctor probably would not approve of this, but I just needed some sleep, and was close to losing my mind. I knew it was perfectly safe though. I have another appointment coming up soon and will ask her for 1500/day and be more outspoken about the suffering. Thanks again.

SueJohnson profile image
SueJohnson in reply toMaximus01

Ask for 100 mg as you can increase it every couple days to find what you need.

Guitarpickin profile image
Guitarpickin

Sorry to hear about your issues with gabapentin. I wouldn’t try taking more, until you tried every other possible thing that may help first. I also find it made me off balance, caused brain fog, and really made my legs swell…but with time (months), those side effects mostly resolved.

What is causing you to wake up after 4 hours? Is it your PLMD/PLMS? Or does it feel more like insomnia? Or something in your environment (like a loud, recurring nightly noise that wakes you)? There is a type of insomnia that prevents falling asleep and another kind that makes you wake up in the middle of the night. Maybe you are experiencing the latter? Or both, which is totally possible. Those of us with sleep issues on top of our movement disorders are cursed. Lol

Maximus01 profile image
Maximus01 in reply toGuitarpickin

Yes, Guitar, it is definitely a curse. The PLMD was discovered when I did a sleep study some time ago. The doctor prescribed Pregabalin at the time (which is similar to Gabapentin), but didn't explain much and I didn't know what questions to ask. The findings of the sleep study were a surprise to me since I had no idea I was moving arms and legs all night. The insomnia is another aspect on top of the PLMD, but I thought if I could take care of that, I might sleep better. The insomnia started around an emotional upset and then turned into something like a pattern, that I cannot turn around. It seems to get worse with age. I am having a hard time this week as I have a bad pain in my neck. It will go away as I saw a chiropractor yesterday and also had a massage. Thanks for responding.

Guitarpickin profile image
Guitarpickin

Hopefully after your neck pain resolves, you’ll begin sleeping better. If it is insomnia waking you in the night, increasing gabapentin just to sleep probably isn’t the best idea. Insomnia is a whole other monster and requires a completely different approach than RLS or PLMD. I’ve never looked but I’m sure there’s an insomnia group on this forum. I’ve had insomnia since my early 20s but generally have it under control so I ‘m no longer up to date on the latest recommended sleep hygiene tactics. It’s no fun catering the last hours of every evening to the things that promote sleep (while avoiding the things that don’t), but it is effective. I hope you get feeling better and sleeping better soon.

Battleground profile image
Battleground

After 25 years of suffering with RLS, PLMD and insomnia, I was given Gabapentin to try. In the beginning I suffered the mind fog and the balance problems but was encouraged to give the medication time, which I did.That was two years ago and it has given me a new lease on life. It isn’t perfect and I have had to increase the dosage a couple of times but after twenty five years of living halve a life it has been a God send. Unlike many of the reply’s I take 1500mg 3 hours before bedtime, all at one time. This approach has been working for me for about a year now. At 87 years old I am able to live alone, drive my car, shop for groceries and take care of all my needs. Hang in there Max, you to may find, given time this drug will work for you too.

By the way, I too have the problem with those rotating thoughts that hit every time I hit the pillow. Sometimes I can fight them off and sometimes not. Lorazepam worked for a time but is no longer effective. I took Ambiem for a time but was picked up driving at 6am in my Pajamas. I have tried many other sleep medications without success. Now I just go with the flow which takes me on a couple of bad days then a good one. At 87 I thank God for every day.

Maximus01 profile image
Maximus01

Battleground, my total admiration and you give me hope. I am going to ask my doctor today if I may increase from 1200 to 1500 Gabapentin. I know that for RLS it is allowed according to the Mayo Clinic. I have been taking an extra 300 mg capsule when I cannot fall asleep (already anyway), along with another 1 mg lorazepam. My doctor would not be happy about this (the Lorazepam), however, sleep has been so elusive lately, that I feel I am only half a person. Not only that, there is the depression that goes with it. The long day ahead is like climbing a mountain. I also have tried most of the sleep medications out there, and they just don't agree with me and are not helping anyway. I have heard the stories about Ambien! Really funny, if it wasn't so sad. Thank you so much for sharing.

Elsie77 profile image
Elsie77

I too am having disagreements with my doctor, just started on Gabapentin I’m up to 300 mg at night 2 hours before bed. On my my first night great no rls slept all night. 2 nd and 3 night woke at 1.00am with rls for about 40 mins. I reported back to Dr as requested he is telling me to take tablets spread over entire day and suggesting that’s why it isn’t working now. I’ve told him I don’t want brain fog all day or risk falls since I’m 71 years old. Am I right or is he?

Tanker1 profile image
Tanker1

I have the same issues. I feel like (but can't easily prove) that gabapentin contributes to my insomnia. My sleep is impacted on the front end by PLM and on the back end by insomnia reducing my quality for life from a 9-10 to a 2-3. According to my research the only effective treatment for insomnia is cognitive behavioral therapy (CBT). I've participated in a 6 hour training (1 hour per week for 6 weeks) which was quite good. I did pick up some tips to help get back to sleep but its all very hard and often not effective. I've found that retraining my brain is nearly impossible. There is a CBT-i coach app you might find useful (not useful for me). You might want to find some training sessions (they were covered by my medicare/insurance). Or checkout the book "Say Goodnight to Insomnia" by Dr Gregg Jacobs.

Maximus01 profile image
Maximus01 in reply toTanker1

Hi Tanker, thanks for the tips. I have tried so many things, I could fill a whole page. A friend just suggested hypnosis, which I have also tried extensively. I have also done CBT-I with a practitioner. Maybe I did not have a good one, because it did nothing for me. The Gabapentin seemed to work at the beginning, but now it feels like it fizzled out. I am still taking it though. The same with Lorazepam but again, one needs more and more for it to work, and I don't want to go there. Oh yes, I have also read Dr. Jacobs' book, and others as well. I wish there were an insomnia camp where everybody could go and spend several weeks, but there is no such thing. I am in the U.S. and belonged to Kaiser Insurance. This was years ago in the San Francisco area. They had classes for every conceivable illness/condition. I attended the "sleep better" class and found it very helpful. I think sharing with other people and, of course, sleep hygiene, etc., was very supportive. I did very well. However, there is no Kaiser where I am living now. Last night was very awful and I will just vegetate for now. Am talking with my therapist this afternoon. Thanks again for your post.

Tanker1 profile image
Tanker1 in reply toMaximus01

You're welcome. I'm sorry none of this worked. I feel your pain because I am in the same situation. Like I said, changing my brain patterns is very hard. I'm convinced a large portion is my brain pattern. I think this because when I am out in the wilderness hiking, camping, canoeing ect I sleep much better. At home there is too much to do, to many distractions and to many computer screens. It does help a bit to not read any of the awful news after about 6:00 pm. Best of luck.

TeddiJ profile image
TeddiJ

To Maximus and All: While I would prefer a natural solution, many of them do not work when you have RLS. Just know that Ambien can be used short term and safely, if you are really having issues. The trick is to take a small amount-just a little piece-to fall asleep and then another piece if you awaken 4 hours later.

Or, just use it as needed for the nights you awaken. Take a small piece and bam-you will sleep for a few more hours and feel great the next day!

Taking the entire dosage at once (10 mg or more) is usually a bad idea and results in the eating and driving and all the weird stories. I have had all of these situations occur.

Plus, you know how it is-just knowing you have a good option in your house is enough to calm your nerves about not sleeping! It's a security blanket as opposed to lying there feeling more and more anxious because you have no options and you know how awful your next day will be.

Ambien is not good for aging brains and not good long term. But, if you just keep it on hand and take a small piece when you really need it-it will make all the difference in your quality of life.

Valium is another option that calms the nerves and helps you to fall asleep. Again, try not to overdo it and think of it as an option for your very bad nights. Maybe 5 mgs or less for when you awaken and can't get back to sleep. I use it on planes but oftentimes just knowing I have it in my bag is enough to get me through!

Moderation is ideal for all drugs, of course.

Good luck to you Maximus and All-I so understand and share the struggle. The dang RLS makes it all so much more of a challenge! Plus hormonal issues! Plus possible withdrawals! One thing or another-right?! Omgosh. RLS takes the cake though, for sure.

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