Gabapentin Fatigue: Hi, I've now been... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin Fatigue

elsie1920 profile image
27 Replies

Hi,

I've now been on Gabapentin for four weeks. I started at 300mg and now at 600mg. 500mg did nothing, but 600mg seems to work. My issue is fatigue. This is so beyond normal fatigue, even sleep deprivation isn't as bad. I feel nauseous and can hardly get out of bed at times. I sometimes feel better and have short bursts of energy, but basically, I'm too exhausted to do much of anything all day. I seem to just start feeling better at the time I'm due for my next dose.

I take 600mg at around 7pm. Sometimes I'll still get a bit of an 'attack' just after falling asleep at 10ish, but I'm able to resolve it with my rolling pin massager and a bit of lotion after.

But my mornings/days are awful!! Should this side-effect have worn off by now? Will it ever?? I really feel like GP is helping me and don't want to stop, but this is nearly intolerable.

Oh, I also have some severe urine retention, but only at night. Has anyone had this from GP? I didn't have it with Pregabalin. I didn't have this level of fatigue with it either. But I did have depression, depersonalization, and panic attack at 150mg, so I had to stop.

Thank you in advance.

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elsie1920
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27 Replies
SueJohnson profile image
SueJohnson

You could ask for a prescription for ritalin or adderall to counter your daytime fatigue. If you take it in the morning it will wear off by evening.

For nausea you could ask for zofran.

It might still wear off but by 4 weeks it should have.

elsie1920 profile image
elsie1920 in reply toSueJohnson

Thanks Sue. I actually take 300mg of Wellbutrin, and that was very over-activating for me for weeks. I finally adjusted to it. My psych doc said it's like Ritalin-lite. I'll keep that in mind, though.

Zofran makes me really sleepy! 😅

I don't know what I'm going to do, since no Dr will prescribe me an opiate (aside from co-codamol, which doesn't work well on it's own, at the max of two tablets) here in Belgium. I guess I will just have to deal with it and hope it eventually lessens.

Thank you.

SueJohnson profile image
SueJohnson in reply toelsie1920

Wellbutrin isn't Ritalin-lite. I'm not sure where your doctor got that idea.

Natural options like ginger supplements or teas are non-drowsy and may help with mild nausea

elsie1920 profile image
elsie1920 in reply toSueJohnson

I was diagnosed with ADHD and I also have depression. I've been on 150mg Wellbutrin for nearly 20 years. I'm trying to get off escitalopram (cuz of my RLS, down to 7mg) so he increased the WB to 300mg. He said it might help a bit with the ADHD too, but it would be very mild compared to the standard treatments. So that's all he meant. It's prescribed for it off-label. It works absolutely great for my mood, but probably doesn't do anything for the ADHD. It's hard to tell, though, since I have so many other things going on with sleep disorders, med increases, decreases, etc. I just want to feel semi-normal. Not even striving for normal anymore, lol!

Thanks for your help, Sue.

SueJohnson profile image
SueJohnson in reply toelsie1920

So the ritalin would help your ADHD and your tiredness. Wellbutrin is prescribed off label as you mention but they work in different ways.

elsie1920 profile image
elsie1920 in reply toSueJohnson

At this point, I'm just so afraid of adding more meds to the mix. My sleep is already so crap, not just from the RLS, even with the 600mg GP. I occasionally also use Lorazepam or Zopiclone, usually on the nights before workdays.

Joolsg profile image
Joolsg in reply toSueJohnson

sciencedirect.com/science/a...

Gabapentin is linked to urinary retention. So do keep an eye on it as retention leads to frequent UTIs. You can try rocking & massaging out the urine BUT that and the extreme fatigue need close monitoring.

Usually it takes around 3 months for your body to adjust to gabapentinoids.

If there's no improvement after 3 months- ask for a review. You may do better on opioids.

SueJohnson profile image
SueJohnson in reply toJoolsg

I think you meant this for elsie1920

Joolsg profile image
Joolsg in reply toSueJohnson

Sorry Sue. I thought I was replying to her. X

elsie1920 profile image
elsie1920 in reply toJoolsg

Thanks Jools.

I do rock and press on my bladder, and get a bit out at a time. Sometimes I nod off and nearly fall off the toilet, lol! I usually take about 10 min, I think. I've had urine retention for a lot of years from my SSRI and was looking forward to that going away as I get lower on my dose. But it was never this bad! I'm fine during the day, which I've always found strange.

The only opioid I can get from my neurologist is co-codamol, of which I can only take 2 every 4 hours, and I'm only prescribed 30 a month. And she is listed on the hospital site as specializing in RLS, sleep disorders. Sure. I'm in Belgium, and every doc and pharmacist says opiates are never prescribed for RLS. I actually have appointments booked with two new neuro docs in 3 and 4 months. In fact, my neuro keeps trying to push a DA on me, at every appt. And yes, I've shown her the treatment protocol. That's the only reason she agreed to the opiate.

I took some Tramadol (an old script of my husband's), and it was brilliant. I asked my neuro for a script and she said sure, since it's not an opiate. I opened my big mouth and said, 'of course it is', and she said, no, it's not'. I shut my mouth at that point. When I went to pick it up, it wasn't there. When I called her, I was told by her receptionist that I must have misremembered the conversation, because she would never prescribe that, as it is a very addictive opiate, lol! It's actually less addictive than codeine, but hey, they all know better than we do, right?

I'm so glad to hear that I still have some room for my body to adjust. So I'll hang on.

Thank you so much.

Joolsg profile image
Joolsg in reply toelsie1920

Belgium sounds as bad as the UK.The ignorance is widespread.

elsie1920 profile image
elsie1920 in reply toJoolsg

It's terrible. And sad. At least we have loud voices. I think of those, especially elderly folks, who don't question their doctors and don't know how to search for real help.😥

elsie1920 profile image
elsie1920 in reply toSueJohnson

Hi Sue, I'm doing better! For the moment, lol. Thanks for your help.😊

SueJohnson profile image
SueJohnson in reply toelsie1920

I hope it continues.🤞

elsie1920 profile image
elsie1920 in reply toSueJohnson

Thank you, Sue. At least I know if I have to, I can increase and the side effects will probably subside.

Joolsg profile image
Joolsg

See my response sent to SueJohnson by mistake in error about urinary retention.

_quantum profile image
_quantum

I understand you, I walk like a drunk after just 300mg of gabapentin lol. I have a light version RLS and I hope to stop taking it in the future after sufficient iron level

elsie1920 profile image
elsie1920

Thanks, I hope you get to stop taking it too!

Islay9 profile image
Islay9

hiya, I also have adhd and am on a high dose of pregabalin.

Since being on Lisdexamfetamine (Elvanse) its been great to counter the effects in the morning. (This was a happy surprise)

Anyway, Might be worth playing about with the time you take the gaba? And/or splitting the dose? I don’t know, but just a suggestion.

elsie1920 profile image
elsie1920 in reply toIslay9

Thank you for you suggestions. You know, I've actually been feeling better the last two days, so maybe I've gotten through it! The dose of 600mg hasn't been totally stopping the rl, but it's reduced the severity to the point I don't have to take any co codamol. Just a good massage with my 'rolling pin'.

Cefar profile image
Cefar

I am also going through starting and increasing Gabapentin . When you start a dose it will take 2 weeks to fully work the same when you increase it. For 12 days I suffered with similar side effects. It is in the literature. I am retired so I have stayed at home rested had a healthy diet and plenty of fluids. I worked in mental health and know doing this helps with side effects. I changed up again on Wednesday so I expect to start feeling the full effect about 23rd . I hope this helps

SueJohnson profile image
SueJohnson in reply toCefar

Welcome to the forum. You will find lots of help, support and understanding here.

Actually it take 3 weeks when you first start it to be effective but you can increase it by 100 mg every couple of days after that and you will know in that time frame whether it is effective. That's assuming you aren't withdrawing or have recently withdrawn from a dopamine agonist.

Take it 1 to 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.

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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium nor antacids within 2 hours for the same reason .

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 at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

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 and any other health conditions you have.

YoghurtLover2 profile image
YoghurtLover2 in reply toSueJohnson

Sue, I had my first ever iron infusion today (mono Ferron I think) How soon should I have bloodwork done to see if it is now 100 (mine was still 36 (ferritin) after months of oral iron supplement.

elsie1920 profile image
elsie1920 in reply toCefar

Thanks for your helpful words, Cefar. The last two days, the fatigue has greatly subsided, thank goodness. I, too, am a retired mental health worker (RN) and agree. I am not being healthy though, lol! My excuse is I've been too tired to eat healthy and exercise, but now that it seems to be improving, I'll get back on it. 😀

I tend to get easily dehydrated, despite drinking tons of non-caffeinated fluids, and I think Gabapentin is also dehydrating.

Cefar profile image
Cefar in reply toelsie1920

You are correct Elsie about dehydration. I have been drinking regularly plus eating jelly to increase fluids . By clearing the diary and staying home for 2 weeks this was easier. Public toilets are not always available. Take care

Cefar profile image
Cefar in reply toCefar

Ps There are plant based jelly available at supermarkets or on Amazon now if you are vegetarian or vegan

YoghurtLover2 profile image
YoghurtLover2

I’m very similar to you … extreme exhaustion. Also on 600 mg Gabapentin after I came off Pramipexole with horrible withdrawal symptoms ! Happy to have that behind me ! Hopefully it will get better for us … soon! I think that’s what they say . My ferritin is 36 after months of oral iron supplement . So today I had my first ever iron infusion as they say it helps 60% of people if ferritin is at 100 . Hopefully that will help. I do have to mention that I have RA as well and that can also lead to exhaustion . My main complaint atm is dizziness . I’ve been on 600 mg Gabapentin now for about 6 weeks . Hopefully dizziness will get better too! Good luck

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