Gabapentin side effects

[Louless9]

I have been taking medication for my RLS for 11 years now. Initially pramipexol for 8 years then Ropinirole for two years and I’ve just started Gabapentin on top of the Ropinirole.

I’ve been increasing the Gabapentin to 600mg a day, 100mg in the morning, 200mg afternoon and 300mg at night.

I feel drained, sluggish, I can fall asleep in the middle of doing something in the morning or at home in the evening. Sometimes I feel like I have a huge weight on my body, just like it feels when you get out of a swimming pool. I can’t think straight either as I was going to say when I started it, probably February.

Although I felt RLS free and my sleep improved from under 4 hours a night to over 5 and sometimes 6, the RLS is creeping up again.

I don’t know whether I could cope with an increase in the Gabapentin considering how I feel.

My GP doesn’t know anything about RLS and I am seeing the consultant in August which is still a while to wait. Even then she wasn’t interested in the mayo clinic algorithm.

Does anyone else have any of these side effects?

[Joolsg]

You will NEVER be free of RLS until you stop Ropinirole. Have you started reducing it? Gabapentin will only help properly when you've been off Ropinirole for around a month.Gabapentin should be taken at night. Not during the day. Switch to nighttime, around 2 hours before bed.

And start reducing Ropinirole.

The sluggish, sleepiness will settle better if you only take gabapentin at night and will resolve over 2 or 3 months. Do not increase above 900mg while still on Ropinirole because the severe, increased RLS caused by augmentation will break through.

Wait until you take the last Ropinirole pill, then you can slowly increase gabapentin.

And ensure serum ferritin is above 100ųg, preferably 200ųg/L.

[SueJohnson]

I answered this 2 months ago when you basically asked the same question. I am glad to repeat if you want or you can find it by going to your profile and clicking on your post.

When you are finally ready to accept that you are augmenting, reply and I can give you some advice.

[Louless9 in reply to SueJohnson]

I know I am, I am following my UK practioners advice. I don’t know what else to do or why I am experiencing the effects with the Gabapentin, I just don’t feel right at all. They just don’t care about my ferritin levels.

I’ll contact my GP again in the week but as I’m not seeing consultant until August they may say to stay as I am.

I feel between a rock and a hard place.

I was only asking if other felt the same on Gabapentin?

[SueJohnson in reply to Louless9]

I will give you my full advice then.

First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

The beginning dose is usually 300 mg gabapentin [If you are over 65 and susceptible to falls beginning dose is 100 mg. Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

As Joolsg said you can take up to 900 mg but again it won't be very effective.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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, take the extra 6 hours before bedtime.

There is no reason to take it during the day as your symptoms will be at night and as you discovered, it makes you sleepy.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Insist that your doctor give you a full iron panel test to check for your ferritin !!! That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

Chris gave you instructions. Let me add a couple things. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before. Have your test in the morning before 9 am if possible. . If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[ChrisColumbus]

I know that this all sounds like a lecture, but UK GPs and most neurologists know next to nothing about RLS. It's not taught, and NHS and NICE are not up-to-date with latest research and expert advice. We're all just trying to help.

I appreciate that it can be difficult to argue with doctors (let alone neurologists) but it's your health - in all aspects - that is important.

Whatever they say, you need to wean VERY SLOWLY off ropinirole following advice from Jools and Sue: if you can't find that advice in previous replies ask for it again.

Gabapentin will not work properly until you've been off ropinirole for several weeks. Your doctors probably don't know this.

Then gabapentin for RLS needs - as Jools points out - to be taken at night time only, an hour or two before symptoms usually start - if your doctor is telling you to take it 3 times a day they are following guidance for treating neuropathic pain not RLS (NICE doesn't understand this). No wonder gabapentin taken this way on top of ropinirole leaves you feeling drained, sluggish and frankly crap.

And as for "They just don’t care about my ferritin levels"! While NICE guidance on RLS is patchy to poor to downright misleading in part, it does at least correctly say:

"Measure serum ferritin in all people with RLS. As anaemia is not a sufficiently sensitive marker for iron deficiency, which may precipitate or exacerbate RLS."

cks.nice.org.uk/topics/rest...

And:

"Address any underlying cause that may have precipitated or exacerbated restless legs syndrome (RLS). For example: Iron deficiency anaemia, or serum ferritin less than 50 to 75 micrograms/L — investigate to identify a cause of iron deficiency and prescribe iron supplements (if appropriate)."

cks.nice.org.uk/topics/rest...

They cannot be allowed to just ignore this guidance!

Insist on a fasting morning (water only over night, no iron supplementation for 48 hours prior) full panel iron test to include ferritin and transferrin saturation. Get the actual numbers, don't be fobbed off with "it's normal" because they won't know that RLS sufferers benefit from higher levels. Post the numbers back on the forum for advice - although I think you've previously been given that advice against previous posts.

Best wishes - and don't let the ******** grind you down!

[Louless9]

I have to admit I’m feeling mentally fragile here with the RLS. And side effects of the medication. I’m 58 F and live in the UK.

I take the following medication:

Ropinirole 0.5mg film coated tablets ( it does not state in the PIL that it is slow release so and does not have ER or XL after the name). Dosage 3am, 2pm and 3on.

Gabapentin 100 mg caps 1am, 1pm and 3on.

Both are taken during the day as I can get symptoms in the morning and afternoon.

Lansoprazole 30mg 1 am

Paroxetine 20mg 2 am

Loratadine 1am

Naproxen 500mg 1am and 1on

Evoril conti HRT patches

Also In the afternoon with lunch I take cod liver oil capsules, glucosamine and chondroitin tablets, Vit D3, multivitamins and iron.

At night I also take ferrous fumarate 210mg tablets with a 1000mg vitamin c drink

I have a magnesium spray and magnesium salts soak, I practice meditation but I’ve not noticed any help.

The things that help are stretching, walking up and down, shaking my arms, a lower back massager with heat (if it’s legs), distraction.

What makes it worse is exercise.

I do have a high sugar diet and eat carbs and probably don’t drink enough and have stress at work.

I have read the Mayo algorithm many times, I understand it well as I used to be a dispenser in my local pharmacy for 18 years. I used to have access to the BNF and Martindale.

My action plan:

Contact GP and beg for a full iron panel test.

I will tell them my intention to reduce the Ropinirole tablets slowly.

I’ll give the GP the printed out Mayo Clinic Algorithm

I will keep in contact with the GP to report on my progress on withdrawing the Ropinirole and ask for a low dose opioid. Fingers crossed they will oblige. I have found over the counter cocodamol has helped in the past. But withdrawal may require stronger opioids.

I need to lose weight, so shall undertake a low fat, low carb and low sugar diet (slimming world).

I can’t afford to purchase a weighted blanket but have compression socks that I wear on an aeroplane. I’ll get some bandages to try on my arms.

I know it’ll be an uphill struggle as I came of pramipexol before starting Ropinirole so I know how hard it is, then taking away my comfort food will be a well known struggle for me too. Hopefully I can find strength and support through this.

I’m most worried about the GP and consultant telling me what the hell am I doing?! And them refusing to treat me if I don’t follow their advice.

Final question regarding Gabapentin, I am taking it during the day as I get RLS symptoms then, should I take all 5 capsules at night now instead of the 2 I take in the day? I already take 300mg, how much can I increase it by and to what?

On page 17 of the Mayo clinic algorithm proceedings for refractory RLS figure 3 Approach to the management of refractory RLS it does state consider combination therapy of DA and A2D ligand, which is what I am taking. I do note that it suggests discontinuation of the DA due to severe augmentation.

Thank you for all of your advice.