question for Sue re: gabapentin

[frothymilk]

question for Sue Johnson: Sue you have been very helpful in the past and I'd like to ask you about my Gabapentin. I have been taking increasing dosages of it but have been waking up about 30 minutes to 1 hour after falling asleep with RLS. Last night I took 3 tablets (300 mg per tablet) at 4 pm, 3 tablets at 5 pm, 2 tablets at 7 pm. When I woke 30 minutes after falling asleep I took another tablet at 11:00 pm and waited to try to sleep about 90 minutes later. Woke again and made some bread then slept for about 3 hours. Some nights I sleep through but the pattern I described for last night is very common. My questions are: I'm I taking the tablet at the right time and should I take more before going to bed instead of waiting till I wake up? Many thanks for your help, Linda

[SueJohnson]

You are taking way too much gabapentin - 2700 mg - and you are not sleeping because it won't help you much until you are off neupro. You shouldn't have gone over 900 mg. total until you were off neupro for several weeks and your symptoms have settled.

You need to reduce the gabapentin. If you have just started taking the 300 mg at 11:00, stop taking it. Then ask your doctor for 100 mg tablets and reduce by 100 mg every couple of weeks. Keep up this reduction schedule until either you are off neupro for several weeks or you reach 1200 mg.

It is not well absorbed above 600 mg and the peak plasma level is 2 hours so The proper way to take it is 600 mg 1 to 2 hours before bed, then 600 mg 2 hours before that, then 600 mg 2 hours before that etc. So if your bedtime is 10:30, take 600 mg at 9:30, 600 mg at 7:30, 600 mg at 5:30, 600 mg at 3:30. You start reducing the earliest dose.

What size neupro are you using? Have you started reducing it?

[frothymilk in reply to SueJohnson]

Thank you so much for your quick reply. Yes I have been reducing the neupro. I'm down to 1 mg per 24 hr and in a few days will have it all stoppped.

I started taking the gabapentin at 4 as you said if we take more than 1200 mg we should start at 4. Sometimes my RL starts around 6:30 or 7:00 even taking all that I do! So if I go down in my gab. dosage this will be a challenge. Mind you, even when I take the extra 300 mg in the night it sometimes doesn't stop the RL. I guess I'll just do a lot of walking in the nights! and i do a lot of baking! Lots of fun! But i'll definitely try what you are recommending. Thank you!

[Madlegs1 in reply to frothymilk]

Do you use raising agents in your baking?

They are a potent trigger for me.

[SueJohnson in reply to frothymilk]

You are also reducing the neupro much too fast. You should draw lines on it dividing it into 6th and reduce 1/6 every 2 weeks. This should take you at least 12 weeks to come off it. Once you are off neupro following this schedule and your symptoms have settled, you will only have RLS at night. You won't have it at 6:30 or 7:00.

I assume you were on 2 mg which means you reduced to 1 mg too fast since you weren't even reducing at all 29 days ago. I would strongly suggest you go back up again cutting it into sixths to a level where your symptoms weren't too bad before reducing.

Please take your time and follow this schedule. You may need a low dose opioid temporarily to help with your symptoms.

[frothymilk in reply to SueJohnson]

I was actually on 4 mg. The neurologist whom I saw in Toronto, Ontario, Canada (I live in Sault Ste. Marie, Ontario which is 8 hours north of Toronto by automobile) told me I could just go off the neupro more quickly but my GP told me 7 days on 2 mg , then 7 days on 1 mg. When I asked my pharmacist about cutting the patches he said it wouldn't work as the medication in the patch isn't evenly distributed. But I have several left of each dosage. So I can take longer withdrawing. Should I start the lower doses of gabapentin right away or gradually change that too?

[frothymilk in reply to frothymilk]

And my day symptoms are no different since I've been withdrawing from the 4mg dosage. So I could just continue with the 1 mg for longer. My GP would probably be fine with that. I am 77 years old with no other health problems.

[SueJohnson in reply to frothymilk]

You shouldn't give your full name as we are not supposed to. I am surprised the administrator hasn't blanked it out. I suggest you edit your reply.

[frothymilk in reply to SueJohnson]

I deleted it. Sorry! I'm new to this group and didn't realize that. Thanks for pointing it out.

[SueJohnson in reply to frothymilk]

Your doctor and your pharmacist are wrong. You can cut them. And I am amazed you don't have a lot more daytime symptoms from dropping from 4 mg so fast. But were you previously able to sleep on 4 mg? If so then reducing so fast is why you can't sleep now.

Reduce the gabapentin as I gave you above. Drop the 11 pm dose now and ask for 100 mg doses and when you have them then you can start reducing as I outlined above.

[frothymilk in reply to SueJohnson]

I often didn’t sleep when I was using the 4 mg patches. A couple nights not sleeping then a couple nights with about 6 hours

[frothymilk]

many thankyous!

[frothymilk in reply to frothymilk]

sue, I broke my ankle in 3 places on Oct 14 had to wait 9 days for the surgery. Very very painful. Non weight bearing on the fractured side. RL has made it more painful and difficult to sleep. I gradually went off neupro as you had suggested. When I was on large doses of dilaudid right after the surgery the RLS was more controlled and I was able to sleep. I’ve almost come off the dilaudid and am taking high amounts of gabepentin to control the RLS. I take 900 mg at 4:00 (sometimes 3 pm if RLS has started and of course I can’t get up and walk), 900 mg at 5 and 600 mg at 7ish. The RL is often so severe I can’t get it to stop. It even goes up to my groin and feels like mills orgasms. When I was in a convalescent place after surgery my daughter was able to give me a hot shower on a stool which stopped the RLS enough for me to sleep but there was a COVID outbreak so she brought me home where there is no shower on the first floor. Do you think I should ask for a renewal of dilaudid (low dose) for the next 5 weeks when I will be unable to walk due to being non weight bearing on the injured ankle?