Hi everyone. I have been on Pregabalin and then tried Gabapentin for the last seven months. My allowed dosage is 1500 mg and I have lately taken 1200 mg (300 mg capsules) because I was starting to have some worrisome side effects. First of all, I am taking the medication for PLMD and sleep. The good news is that it is helping with the sleep and I get about 5-6 hours which is really wonderful, even though I still have difficulty falling asleep. The side effects are: forgetting words when I am speaking with someone, doing goofy things when I am going about my chores, forgetfulness, feeling sickly when I get up (it goes away after I have had my tea and moved about a bit), feeling very tired in the afternoons and my eyeballs are heavy, not trusting my balance. I am taking 1200 mg this week, and then plan to go to 900 mg the following week. I am tapering down a bit to see whether this would help. I would like to give it up altogether (and wouldn't we all love to live without medications!). I am also taking 1-2 mg Lorazepam (Ativan) and have been on this forever (for anxiety and sleep and would love to get off this one as well). I have an appointment with my GP in a couple of weeks. I don't expect her to have any answers for me. I feel like I am between a rock and a hard place.
Gabapentin side effects: Hi everyone... - Restless Legs Syn...
Gabapentin side effects
Yes - those can be a side effects for some. To reduce or come off gabapentin, you need to come down very slowly to prevent withdrawal effects which can include insomnia, headache, nausea, anxiety, diarhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations. If you do it slowly you won't have any withdrawal effects. You may want to ask your doctor for 100 mg capsules so you can come down more slowly or so you can find a dose that does not have these side effects.
Thank you, Sue. That is great advice and I will ask my doctor for 100 mg capsules. Thanks.
Are you in the States by chance? I take an extended release Gabapentin and I’ve found it has fewer side effects than the regular Gabapentin. But from what I understand it is not available in the UK.
Yes, I am in the U.S. and will ask my GP about extended release Gabapentin. What is the strength these extended release ones come in? In any event, I am hoping that tapering down to a lower dose might still be helpful as opposed to getting down to zero, and perhaps that might not cause these unsettling side effects. Thanks for your thoughts.
After 6 months on gabapentin, I was approached by friends and family and told that I was not acting myself, skipping words, and saying strange and dark things. It’s hard to explain the word skipping. I thought I spoke the words yet I I’d leave random words out of the sentence and people would look at me as if I were crazy! I also had quite a bit of near falls. My right leg would seem to skip a step. The doctors insisted that it was not related to the gabapentin. Finally after a confrontation with my partner, I reduced the dosage and eventually stopped taking it. I did tell my doctor. Soon after I was told that I seemed myself again. After 43 years of nightly hell, I’ve tried every remedy, regiment, supplement, therapy, and medication. I would not choose to be born if I had the choice, knowing how absolutely miserable and tortured life could be with RLS. Out of all the medications, Ropinerol was life changing and the sole reason I’m still here. I also had a spinal stimulator implanted that helps me through the roughest days and nights. 8 out of my ten doctors are convinced that RLS is merely an inconvenience and suggest warm milk! Yet I’m very grateful that they are willing to listen to suggestions from this blog and others even if it’s just to shut me up!
Napoleon are you still on 4mg Ropinirole? I'm wondering whether you were ever offered low dose opioids to help your severe RLS rather than a spinal implant?There are several experts in the USA - Dr. Buchfuhrer in California is one of them.
Anyone on 4mg of Ropinirole for longer than a few years will hit augmentation and that may be why your RLS became so severe.
I agree with Joolsg. You may be having augmentation fron the ropinirole. I was ecstatic when I first went on ropinirole until, after 2 yrs on it my RLS became excruciating. Had it all day and night. Couldn’t sit down for more than 5 min with out it creeping in. My neurologist at the time just kept increasing the dose telling me that RLS just does that. Left that doctor and went off ropinirole slowly on my own. My RLS returned to being just in the evenings at night and was such a relief. After trying other meds and having other awful side effects, I decided to control with CBD for the RLS and small amount of THC for sleep. Been working great for two yrs now.
Going back to before I was on ropinirole, my dr had me try a sample of the extended release (Gralise) which worked really well. Unfortunately my insurance wouldn’t cover it and it would be $1600 a month! Then tried regular gabapentin and it just doesn’t work the same and again didn’t like the side effects. Good luck.
The two extended release gabapentin meds I am aware of are Horizant and Gralise. Horizant is approved for treatment of RLS but Gralise is not. Both are horribly expensive (thousands of dollars per year). In my case I live in WA state and am on a medicare drug plan. There are no plans in my state that cover either of these meds so I am stuck on Gabapentin.
Regular gabapentin is not well absorbed by the body. The extended release versions are formulated so that absorption is slower and more efficient. This means you can take a lower dose and achieve the same impact.
My sleep doc had me try the Gralise (use for PLMD is off label) but it did nothing for me that the much cheaper gabapentin does. This is because my symptoms seem to be limited to the late evening and early part of the night. Basically I don't need medication 24/7 so I can get by with the immediate release version of gabapentin.
I should also note that I take 1800 mg of gabapentin; 3x600 mg spaced 2 hrs apart + a low dose of ropinerol (0.5 mg). This worked OK until recently but is now failing. I have roughly the same side effects you are experiencing and have come to really hate the drug. I am going to press my sleep doc for something else at my next appointment.
Thank you, Tanker. I appreciate thoughts on this. I have just about tried everything, though I will speak with my regular GP in a couple of weeks. Perhaps she might refer me to a psychiatrist to talk about the medications--mood changes and tears, etc., though I don't have much hope in that direction, because, as I said, I have tried everything over the years. I now find I am going around in circles. The Gabapentin gave me hope, but mood changes, depression, memory problems, are they worth five or so hours of sleep? Even with the Gabapentin, I still have several bad nights per week. Falling asleep is still a nightly problem. I am doing EFT daily and in the evening and it helps a bit. In the morning, my bed looks like a battle field--probably due to the PLMD. By the way, these side effects mentioned are also listed under Horizant and Gralise. I just checked both of them. So it may be falling from the rain into the trough. But I appreciate all ideas offered.
I'm sorry to hear gabapentin has caused such problems but I get it. Its hard for me to know if my poor mood/depression is due to the drug or to lack of sleep. In any case I'm going to talk to my sleep doc about alternative meds. For me seeing a psychiatrist would not be helpful because I have a sleep problem. My life quality would be a 9-10 without RLS/PLM. Instead its a 2-3. The dopamine agonists work extremely well for me but there is that augmentation issue. The only thing left for me to try is low dose opioids.
I'm able to fall asleep ok once the meds stop the RLS/PLM but I have great trouble staying asleep. Cognitive behaviorial therapy, mindfulness and breathing techniques are sometimes helpful.
You are correct that Horizant and Gralise have the same side effects. They are the same drug as gabapentin, just a slower and more efficient release into the body.
Best of luck (we all need it).
Hi Tanker1, I believe that lack of sleep affects your mood and outlook on life. Medications also affect how one feels. We just have to hang in there and be grateful for what is working right in our lives. It is hard sometimes to be grateful though. I do breathing techniques, meditation, walking, praying, autogenic relaxation exercises, EFT, and talking to my therapist when it is a really hard day. I have also done other things, too many to list here, that were nice but didn't do a thing.
That is very strange that you are now getting those side effects from gabapentin after having been on it for awhile. Are you sure they aren't from the ropinirole? If you do decide to come off the gabapentin you need to do it very slowly or you will have side effects. If you do it slowly enough you won't have any. Since you are on 1800 mg it will take you some time.
Hi Sue, I have not been on Ropinirole at all. As to the Gabapentin/Pregabalin, I started taking Pregabalin last September. Then in December, I switched to Gabapentin, hoping that it would work better as far as PLMD/ sleep was concerned, which it didn't. However, I have continued with the Gabapentin. I started with 300 mg capsule, then 600, 900, 1200, and 1500. I think these side effects come up very slowly, so it didn't ring a bell at first. When I started, everything seemed fine. Just lately I notice things and although they are not terrible, I find them unsettling. Especially the memory problems, getting confused (more early mornings), feeling very tired in the afternoons, depression/crying a lot, even gastrointestinal things. I have come down to 1200 for a little over a week now, and I want to go to 900 this week. When I speak with my GP, I will ask her to prescribe 100 mg capsules. My hope is that perhaps I might be able to stay on 300 mg or so with less side effects. I am going to be very careful. I do want to add that I am taking Ativan as well--1 mg - 2 mg per night, and that might add to the side effects. I tolerated Ativan well by itself, but who knows. We shall see and I will report. Thank you for your input.
I must have confused you with someone else on the ropinirole - sorry. Good luck with your withdrawal and it is a shame you suffered those side effects.
I take 1 capsule of 300mg of gabapentin and am also forgetting words when I am speaking, doing goofy things when I am going about my chores, forgetfulness, and feeling sick when I get up but it goes away after I have moved about a while, feeling very tired in the late afternoons and very sleepy as well, also not trusting my balance. I'm wondering if this is due to my age (64) or the meds.
This is exactly what I am feeling and I think it is due to the medication. I did not have this unbalanced feeling--emotional or physical---before starting Gabapentin. I do feel better a few hours after waking, but the search for words and the tiredness is with me all day. As I mentioned before, I do get a little more sleep, for which I am grateful, however, I find it unsettling when I notice that I am not all there mentally. I can put up with the heavy eyeballs and sleepiness in the afternoon. As to the balance problem, I had it at the beginning, but now it is not an issue anymore. I am 78 and otherwise in good shape and having the same issues. All the best.
If you are experiencing short term memory loss on gabapentin you may be at risk for permanent memory loss. This is what I experienced, only finding out later that I had very little long term memory of the time I was taking it. Your experience sounds very much like mine on the front end, so I thought I'd let you know.
In addition to those awful side effects of Gabapentin, I also experienced hair loss while taking it. I tried twice getting off and on it, and the effects were consistent both times. There is a lot of literature on the web about Gaba and hair loss too. It is a nasty drug!!
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