Anyone taking gabapentin / neurontin, topamax, or lamictal at low doses for narcolepsy? Side effects? Withdrawal? Help with EDS
I was put on gabapentin for pain and topamax for migraines. About 6 months later I got the narcolepsy diagnosis. Didn't help me at all but everyone is different
I've been on topamax, neurontin, and lamictal before for seizures. The only one I'm still on is lamictal. I didn't have any withdrawal symptoms getting off of any of them. Granted I did not take neurontin for very long, so I can't really speak to that. I do know that after going off the topamax my seizure activity increased, but that's to be expected.
They are all awful for me. Effect my vision, my dexterity, all but topimax made me super sleepy, all the time they made me dizzy like motion sick even when holding still, they had counter reaction that were dangerous with my pain med. They also made me crazy, to be more specific, I felt zero positive emotion, Disphoria is a thing and it is exact opposite of euphoria. It's awful. I felt zero emotional towards my family obsessive thinking, paranoia. These were all start low dose. I do tend to have bad reactions to most meds so if you typically react normally to meds especially anti depressants you may be o.k.
Neurontin .. is literally called the coma drug by nurses. It increases sleepiness extremely. I cant believe a dr would give that as a med for N!!!
I took Gabapentin and lamictal--at varying doses over the years--for migraines and suspected epilepsy. They didn't do much for what eventually turned out to be cataplexy, but it did help with my mood, which ultimately did lessen my overall fatigue. The other side effects weren't worth it though. Lamictal gave me horrible cystic acne and Gabapentin (300 mg 3x day) gave me nasty withdrawal headaches between doses (however, it never made me more drowsy).
Topamax was absolutely hell for me. I've always had NwC but didn't know, I was in it for a few months & became a total zombie. Total. I literally couldn't stay awake for 30min straight, or talk or function. It made my NwC 100 times worse. I've been off for 2+yrs and still never the same as I was before it.
I'm waiting for my diagnosis, but I tried Gabapenten for fibro and gave me horrible leg cramps within 2 days. I do take Lamictal and Topamax for other issues. But my neurologist who treats me for chronic migraines is sending me for the N testing in a couple weeks.
I was misdiagnosed with seizures and put on all of these meds. All of them put me at rock bottom and worsened my narcolepsy symptoms. I had a horrible experience. I was so happy to get off those meds and now I am med free and feeling great due to daily exercise, healthy eating and keto diet. Here if you want to chat.
I took gabapentin for carpal tunnel for about 6 months till I had surgery. Knocked me right out, so much so that when I am going through an insomnia stage of N I often (with my drs permission) take some gabapentin and get some sleep.
unless need is extreme, I only take gabapentin at bedtime. Prescribed for something else but worsens N symptoms
I've taken them all, but not for N.

I take gabapentin for fibromyalgia. I take 800mg at night and sleep great and it wears off before I wake up. I've noticed if I forget to take it I wake up more at night. If I take it during the day I'm a zombie. A very calm, content, spaced-out zombie. It's great for anxiety and... that feeling of "DON'T TOUCH ME!" if that makes sense. I'm way nicer to my husband when I take it while awake, I just can't work on it.

I took Topamax once and was high as a kite, could barely walk, almost fell down the steps, and couldn't speak - couldn't "find words." Friends who take it have zero side effects. Guess I'm just weird.

I took lamictal for years when I was younger. No side effects, no withdrawal, all around an easy med to deal with. Tapering on is serious though, in case of Stevens Johnson syndrome
I take it for my fibro. Mostly just at night though. It helps me sleep. It causes me to just drag if I take it during the day. I can't imagine it being for the narcolepsy.
I'm on lamictal and Topamax for epilepsy. Just started Modafinil for EDS. Those two will only make you more tired. Says on the side effects. amictal is pretty good as far as having little to no side effects (minus the drowsiness). I did get double-vision when I started it but that went away after a few days.

Topamax is a rougher one. It's nicknamed dopamax. When people first start it, it often effects cognitive functions, memory, almost gives you the impression that you are high. Once your body gets use to the med, side effects settle down a bit. But I would say I still struggle with the memory and finding words a bit. Been on Lamictal 9 years; Topamax 2 years.
I was on gabapentin for about 18 months leading up to just before I was diagnosed with N. I never noticed a difference in my sleep patterns while taking it.

I took it to help alleviate nerve pain in my back, and to be honest, I never noticed any effect that it had on me, nor was there a difference when I discontinued it.
I take gabapentin for my peripheral neuropathy, 300mg 3x a day...when I remember that middle dose. But I'm also on a boat-load of other meds and I think they're all affecting me and my narcolepsy. Gabapentin does make you drowsy, so I don't know what they expect us to do....
I take it 4xs a day and yes, it did cause drowsiness at first, but it's like I just adjusted to it and all is good. Neurontin is an old school med, I have no complaints.

PLEASE do NOT go the cymbalta route until you have thoroughly researched it. I was on that for a while and even though I properly tapered off of it, it was pure hell. I ended up in the hospital. My nerve pain was worse, I had brain zaps for two years, sexual dysfunction, weight gain, mood swings, depression, migraines, tremors and.... Drum roll.... That's when I started with the narcolepsy symptoms. I had none of these problems until after stopping cymbalta. Withdrawal was absolute pure hell. There have been millions of dollars awarded in lawsuits over these problems. I qualified to get in with the lawsuit, but I waited too long. It was previously marketed under a different name and it ended up banned or something, so they renamed it. I know everyone is different, but I have life long effects from that med and I will tell anyone I can to please do research.
I've taken gabapentin for my peripheral neuropathy that is chemotherapy-induced. I always took it at night right before I went to bed. The side effects for me is that it would cause my legs to "crawl" -- restless legs. So I'd have to take .5 of Ativan to stop that. I could take up to 3 pills of gabapentin if needed for my neuropathy. I ended up switching to something else (Cymbalta -- which was awful for me... brain shudders.... the worse depression/hell in my life... etc.) because it didn't seem to help my neuropathy much.
topamax is absolutely brutal for withdrawal. Some people can't get off of it. Please review some discussion board posts on withdrawal before agreeing. I went to Mayo for fibro training and they said antidep only work a small amount on pain. Granted every bit helps but I would choose one that's not so brutal to get off of if it were me.
i take gabapentin for nerve pain 400 mg once at bedtime, i increased to that by 100mg increments and there was an adjustment period where i was more sleepy but overall im happy with it as long as i keep my sleep hygiene right. thanks everyone for the warnings about cymbalta
Helped me sleep but my EDS and auto behaviors were off the charts. I would leave my house keys in the door over night, leave my car door wide open and go into my apartment and forget about it, major brain fog, etc. It got so bad I thought I was coming down with dementia. I cut down from 300 MG to 0 MG in 6 weeks and that wasn't fun either. I depended on it to sleep. The aches and fever were from withdrawals. I won't go back to it.
I have taken gabapentin for almost the last year but have discontinued it in favor of xyrem. I was unable to take it during the daytime because it made me unable to function due to sleepiness and nausea. It was great at night for sleeping but in the mornings I had trouble overcoming the grogginess unless i took adderal to help. I would just be careful because looking back it made my N symptoms worse.
I took gabapentin a couple years ago for shingles. This was before I got diagnosed with narcolepsy though. I did notice drowsiness, but nothing too bad. It's a pretty fantastic drug and I think it's worth it. Just my opinion
I slept for days on it. Which was great because it meant I wasn't in pain (which is what the gabapentin was for). The more I took it the less the sleepiness effected me. I don't need it for the pain now (had surgery) but keep it for when I am having one of those horrid insomnia cycles where you don't sleep for 3 days. I take 2 and am out to it
I took it for a couple months. It effected my vision, we couldn't stabilize it. I was extra tired, dizzy, motion sick for hours after I woke up. I could drive with in 16 hours after I took it. It didn't help my pain and made me feel disconnected from my loved ones, like I barely cared. It was not as bad as drastic as depicote, lyrica or topimax.
I've taken gabapentin for years off and on starting for Sciatica and it was the best medication I have ever taken for a lot of reasons. First, after a while on high doses of it (3600mg a day) my sciatica went away and never came back even during many years off the medication! I have twinges of sciatic type need to change positions but that's it it's gone and before gabapentin I was climbing out of my skin. I have Juvenile Rheumatoid Arthritis and it seems to help that a lot too. My Fibromyalgia is in remission more than not. I rarely have flares but my skin always hurts a bunch.
I also noticed that gabapentin balanced out my moods. Being tired and cranky all the time I wasn't having the ups and downs any more. It made me feel level.
Drawback....tired. Sleep a ton whenever I take it. I have recently started taking it again and I'm less irritable but sleeping more.
But I also have KLS (Kleine Levin Syndrome) which absolutely turns me into a totally different person and I will sleep for 5 weeks, sometime more, sometimes less. Usually 22 hours a day. I just came out of one of my comas and done feel right yet so I might be facing another one any day now.
I will say gabapentin got rid of my sciatica. And helps my moods and I have more great pros than cons.

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