Gabapentin: I am on Gabapentin for PLMD... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin

Maximus01 profile image
36 Replies

I am on Gabapentin for PLMD and helping with insomnia. I have now increased it to 900mg an hour before bedtime with my doctor's approval. It does help me with my sleep (about 6+ hrs), so I am very happy about that. However, I feel drugged and a little off balance. This feeling lasts all day until about 4 or 5 o'clock. Then I have about 2 "normal" hrs, then start to feel very tired. I also take 1 mg of Lorazepam (Ativan) along with the Gabapentin. I don't take anything during the day. I am now thinking to go down to 600 mg Gabapentin. Has anyone had this experience with Gabapentin (of feeling off balance and drugged)? It seems that I have the choice of not sleeping much and feeling tired from that or staying on Gabapentin and not being quite myself. I am taking iron supplement also and will continue with that no matter what. I have learned a lot from this community and thank you. Any piece of wisdom about Gabapentin would be appreciated. Thank you.

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Maximus01
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36 Replies
SueJohnson profile image
SueJohnson

For one thing, if you are taking 900 mg, you should not take it all in one dose as it is not well absorbed above 600 mg. You should take 600 mg 1 to 2 hours before bed, and then 300 mg 4 hours before bed. That will actually increase the effectiveness of the gabapentin, so you could reduce the 300 mg dose to perhaps only 100 mg and see if that is better for your side effects. I feel a little off balance but it only lasts a little while and I don't feel drugged. You might want to switch to 125 or 150 mg pregabalin. Theoretically the side effects are pretty much the same, but they seem to be different for different people. Have you had your ferritin checked? If so what was it?

Maximus01 profile image
Maximus01 in reply toSueJohnson

Thank you for your good suggestions. The prescription I was given is in 300 mg capsules. I will ask the doctor if she can prescribe 100 mg. As to the ferritin, it was quite low...33ng/mL, it seemed to be ok for the doc at the sleep clinic. It shows you that they really don't understand the importance of the ferritin level. I have been taking iron supplement for a while now, knowing how important it is. The next blood check will be in May.

I also seem to have trouble finding words. This may be due to age (78), but it has gotten a little worse and I think it may have something to do with the Gabapentin. This is worrying, on the other hand, I want to get some sleep. Thanks again.

SueJohnson profile image
SueJohnson in reply toMaximus01

I am 81 and definitely have trouble finding words. Very frustrating but I haven't noticed any change since starting gabapentin. I assume you know to take iron at least 1 hour before a meal or coffee and at least 2 hours after and to take it every day.

Maximus01 profile image
Maximus01 in reply toSueJohnson

Yes, I learned about this here. thanks.

Hope61 profile image
Hope61 in reply toMaximus01

I feelLike that and I'm 57. To think of living with this until I'm in my 80's is horrific.

I am taking 1000 mg Gabapentin sometimes it works sometimes it doesn't. My ferritin is extremely low 15 last blood check in November. I just had it drawn on Monday so anxious to see if it went up.

SueJohnson profile image
SueJohnson in reply toHope61

I hope you are taking your 1000 mg of gabapentin as 600 mg 1 to 2 hours before bedtime and 400 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. If you are not, you could probably reduce your total dose if you switched.

Hope61 profile image
Hope61 in reply toSueJohnson

HiI do break it up. Last night 500 and 500

Tonight was 400 and 600 and I'm still up at 1:30 am EST . There doesn't seem to be a rhyme or reason with it. Some nights it works some nights it doesn't. When I asked my sleep medicine NP to have my records sent to another center , all of a sudden the doctor wants to zoom chat with me about what is going with my symptoms etc . Bloodwork from last Monday showed a slight raise in Ferritin 17 :(

SueJohnson profile image
SueJohnson in reply toHope61

You probably need more gabapentin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." I take 1500 mg and it completely controls my symptoms. As you are aware, your ferritin is extremely low. I assume you are taking iron and know that you should take it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee and that you should take it every other day. rather than daily. It can take several months before it helps on your ferritin. Are you taking magnesium? What other medicines are you taking?

David7 profile image
David7

Hello Maximus01You may want to try reducing the Lorazepam to .5mg. as this can cause dizziness and unsteadiness

too. Perhaps the combo is causing the over sedation feelings.

Wishing you all the Best

Maximus01 profile image
Maximus01 in reply toDavid7

I have been on 1 mg Lorazepam for years. Perhaps with the Gabapentin I can slowly go down on the the Lorazepam. I am not ready yet to do this though because my sleep is still very fragmented a lot of nights, and always get up feeling tired. The doctor also suggested that perhaps getting on the Gabapentin will eventually allow me to get rid of the Lorazepam, which would be my wish also.

Munroist profile image
Munroist

As far as I understand Gabapentin and pregabalin work by limiting nerve impulses which is why they are used for neuropathic pain, and for epilepsy where they damp things down, and in particular for epileptics try to suppress the large spike of nerve activity that comes with a fit. I have a relative with epilepsy and they are on different medication but with similarities and there is definitely a tendency to struggle occasionally for words, I took pregabalin for a while and found this to a slight degree as well as a bit of “fogginess” but it wasn’t a major issue and if the pregabalin had a really sorted out my RLS it would have been worth it. I also found I had an occasional difficulty initiating speech in a complex environment for example when you are with friends or talking in a noisy environment and you are trying to reply and respond. My own personal theory was that this sort of communication requires quite a lot of mental activity to listen and hear what others were saying, formulate your own response, read body language and the dynamics of the conversation and then to initiate your particular contribution and it felt like the drug was making me stall or hesitate at these points. After I stopped pregabalin the hesitation also stopped almost completely although I do get it every now and then e.g. once every two or three months so I do wonder whether these drugs can make permanent changes as I’d never had it before. As others have said, if you can find more effective way to take the 900 mg then an option might be to reduce. However with these drugs there is a balance between the benefits and this slight loss of mental “sharpness”.

Maximus01 profile image
Maximus01 in reply toMunroist

The PLMD was definitely making the insomnia worse and for now, I have the choice between sleeping better or looking stupid. I would choose sleep, because without the meds my brain is not functioning very well anyway and the misery of not getting any sleep is hard to bear, to put it mildly.

Carlettejaque profile image
Carlettejaque

Yes. I take 800mg twice during the day and 900mg at bed time. So I'm on 2,500mg a day. I feel drunk all the time or on board a rolling ship. It doesn't help me sleep at all. I've been on it for three years for neuropathic nerve pain in my skin. It affects every inch of my skin but i have never got used to the side effects. Recently my doctor wanted me to go up to the max of 1,200mg per dose 3 times a day. But I couldn't cope on it. I got hot feet syndrome Erythramalalgia 18 months ago whilst on Gabapentin. The Gabapentin doesn't help it. If I don't keep my feet freezing it becomes RLS.

Do you find it causes memory problems, brain fog and dry mouth?

SueJohnson profile image
SueJohnson in reply toCarlettejaque

Definitely causes dry mouth. Taking as much as you are, and with the fact that the absorption is reduced when you take over 600 mg in a dose, you would be better off switching to pregabalin.

Carlettejaque profile image
Carlettejaque in reply toSueJohnson

I had to increase from 600mg to 800mg per dose as 600mg wasn't controlling the nerve pain but 800mg does. So going above 600mg does make a difference.

SueJohnson profile image
SueJohnson in reply toCarlettejaque

Yes, but not as much of a difference as taking 600 mg and 200 mg 2 hours apart would.

Carlettejaque profile image
Carlettejaque in reply toSueJohnson

I'll try that with my morning and afternoon doses. I can't really do it with my bedtime dose because hopefully, with luck by then I'll be dreaming 2 hrs later.

SueJohnson profile image
SueJohnson in reply toCarlettejaque

And you can then try reducing the 2nd dose so you are only taking the 600 and then 100.

marsha2306 profile image
marsha2306 in reply toSueJohnson

I’ve been told that it’s anything over 1200 mg of Gabapentin that doesn’t get absorbed…

SueJohnson profile image
SueJohnson in reply tomarsha2306

According to the Mayo Clinic Updated Algorithm on RLS "Because of nonlinear kinetics and substantial interindividual variability, the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy."

marsha2306 profile image
marsha2306 in reply toSueJohnson

I have no idea what the scientific explanation means. Maybe I was told this because I take it for nerve pain also.

SueJohnson profile image
SueJohnson in reply tomarsha2306

It simply means doses above 600 mg aren't absorbed as well so it is best to take no more than 600 mg at one time and space doses 2 hours apart. One can take 1200 mg at one time, but they are not getting the same effect as taking two 600 mg doses 2 hours apart. This means they could reduce the total dose to less than 1200 mg if done it this way. It wouldn't matter whether one is taking it for nerve pain or for RLS.

Maximus01 profile image
Maximus01 in reply toCarlettejaque

It definitely seems to affect my short term memory, makes me feel a little dizzy in the mornings, and when I am talking to someone, I notice I cannot retrieve the words I want to use. However, my friends tell me that they have the same thing. Perhaps they are trying to be nice; but I do know it is something older people experience to a certain degree.

Spurdog1 profile image
Spurdog1

My wife took gabapentin for something else, and she said she couldn't concentrate, find the words in conversation. So, i won't take it.

SueJohnson profile image
SueJohnson in reply toSpurdog1

Each of us reacts differently to gabapentin, so just because your wife reacted that way doesn't mean you would.

Spurdog1 profile image
Spurdog1 in reply toSueJohnson

very true

Kinga2500 profile image
Kinga2500 in reply toSpurdog1

I'm talking about Gabapentin. I felt like in higher had few weeks then that feeling was back to stable and no problems anymore. Even at my young age I keep forgetting anyway and struggle to find a words ;/.

Just I’m wondering is someone taking Gabapentin together with dihydrocodein? I read we shouldn’t take it together,my doctor said it is fine to take together,but I’m worried about site effect so I’m waiting 2/3 hours after take Gabapentin to take dihydro.

Other thing what is better to minimise on better days,Gabapentin or dihydrocodeine? Is someone who could know?

Guitarpickin profile image
Guitarpickin

When I was initially prescribed gabapentin at only 300 mg 1x before bed, I definitely had brain fog (it was embarrassing and my partner took to jokingly asking if I’d had a stroke-not funny at all). I also had dizziness and leg swelling. I worked my way down to 100 mg at night and added .5 mg indica THC (broad spectrum). I continued to have dizziness, leg swelling, and brain fog for months but it eventually decreased and it almost never happens now.

I’m not sure how long you’ve been taking the increased dosage but it could be the case you just need to give it a few months

for your brain and body to adjust. Or maybe, as you suggested, 600 before bed might be enough? Obviously the less medicine, the better. A year or so ago, I was having worsening symptoms and didn’t know what to do so I asked the GP for some

kind of change in my medicine to help me sleep and she said “You need to exercise. Exercise will be better than anything I can prescribe.” I was annoyed with her response and didn’t believe exercise would help my RLS/PLMD in a way that would allow sleep, but because she could tell I wasn’t exercising, and that was bad in its own way, I decided to give it a go. I started exercising gently each day and I’ll be damned if she wasn’t right. Things did improve! So perhaps you can add a walk each evening to see if that, and not more gabapentin, was the missing element in your routine. I hope you get it worked out because the gabapentin hang-over is no fun at all.

Maximus01 profile image
Maximus01 in reply toGuitarpickin

Thank you. Actually, I have exercised all my life. Now that I am older, I am still walking 1 hour in the morning, about 3 miles. I used to dance, play tennis, hike and ride horses. I am no longer doing that due to age, but I crave movement. Unfortunately, it does not make any difference in the quality of my sleep. I am now trying to spread out the 900 gabapentin as suggested by SueJohnson and see what happens.

Guitarpickin profile image
Guitarpickin in reply toMaximus01

It’s wonderful you continue to be so active! But I’m sorry exercise won’t be the quick fix I had hoped for you. Fingers crossed SueJohnson’s medication recommendations prove helpful!

wantokporo profile image
wantokporo

To be a broken record, figuring out and avoiding food/drink triggers can be the ticket (along with the right medicine). I incorrectly thought some magic bullet would let me eat and drink anything.

marsha2306 profile image
marsha2306

I think the lorazepam is helping you sleep but could also be making you groggy. Ask your doc if there is a timeframe that might work better for you.

Maximus01 profile image
Maximus01

Actually, 1 mg Lorazepam doesn't do much to help me sleep, but I am still taking it because I think without it I would not sleep at all. I have been taking it for years and that is probably why it doesn't do much. However, every once in a while I "treat" myself to an additional one in the middle of the night when I wake up and can't get back to sleep, and that really does help. But I do not want to go there often because the body just gets used to it quickly and then you need more. I don't want to fall into this trap. Recently starting on Pregabalin and then switching to Gabapentin to see if controlling the PLMD (which occurs in the middle of the night only----my sleep doc called me the marathon woman!!) is making a difference. I still have some bad nights and even the good nights could be better, but it does not come close to the suffering I went through for several years. As to your post, definitely the lorazepam in your body makes you feel sedated, but it seems very little in comparison to the Gabapentin, even though, last night I took it the way SueJohnson suggested, and I don't feel quite as spaced out.

Maximus01 profile image
Maximus01 in reply toMaximus01

I want to add one interesting thing: Even though I do not seem to be sleeping that much better with Gabapentin, except for a night here and there, I have noticed that I am not as exhausted from sleep deprivation when I have had several bad nights in a row. There seems to be no anxiety around sleep loss whereas before I would be totally exhausted and anxious. This certainly makes being on Gabapentin medication somewhat worthwhile. I would prefer not to be on anything, and I am sure we all would, but living with PLMD and constant loss of sleep is unbearable.

I second the comments about the combination of lorazepam and gabapentin. I take pregabalin and varying doses of clonazepam (a benzo like lorazepam) and I find that it makes me really lethargic, moreover than taking just pregabalin. Also, I have trouble with memory (since commencing pregabalin) and I'm decades off 80!

Barrylegs profile image
Barrylegs

Hi to you all, I am having a hell of a time legs & arms on the move, can not get to sleep, have changed tablets from pramipexole to Gabapentin not any change, have had all my bloods checked okay, waiting to see a doctor and get referred to a specialist very urgent to see him, I have had RLS for over 25 years and it’s getting very bad , I have had enough so much want to sleep, in a couple of words very desperate goin out of my mind, be safe.

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