Worries about Gabapentin

[Muftah36]

I wrote here some time ago when my Tramadol and other interventions were failing me or my RLS was getting worse. My doctor had put me on Gabapentin 300 mg at night and I was very reluctant to take it due to the possible side effects . After reading all the responses from this wonderful group which I received , thank you to all who responded, I decided to give the GABA a try. After the initial feeling of being beside myself In the morning for the first few days ,I found some relief and had about a week of good nights and evenings . I am unfortunately now after several weeks that my sleep is once again deteriorating . Not nearly where it was , I could live with it , but I am worried it will go downhill as time goes by. What a dreadful condition this RLS is . I must struggle nightly to not let it get the better of me and try to convince myself that things could be much worse. There are many less desirable conditions to have I tell myself regularly. So Thank you again to all you warriors who responded with your anecdotes and advice . It helps to know you are there . I’ll carry on and hope for the best .

[Hidden]

Just to clarify, when you write "GABA" are you referring to gapapentin?

The reason I ask is that GABA is a neurotransmitter not a drug.

I can understand your reluctance in taking gabapentin. I'm glad it worked at first for you, but 300mg is only a starting dose which needs to be titrated up. An average effective dose is 900mg or more.

There are side effects, but as long as the benefits outweigh them it's best to continue.

[Muftah36 in reply to Hidden]

Thankyou for your response. Yes, I was referring to Gabapentin .so sorry about that .My frustrated mind and extreme fatigue cause many problems . So I have a really hard time in the early evenings. I’m often too tired to sit at the table for the evening meal at 6 p.m . But my legs won’t let me relax in the couch or chair. I don’t take my meds until 10 p.m. so that I can have a good chance at a nights sleep.Does anyone else have extreme fatigue like that? I am good in the morning but start to deteriorate at 4 p.m. and I long for the time to take my meds do I can get in bed for some relief. I’ve had blood work done and it seems to be in order except my ferritin which is In the normal range but lower than It should be for RLS . I am taking iron supplements . My doctor does not acknowledge the import of ferritin levels . I have been trying to get this fatigue under control for a year or more , and despite regular exercise ,and a good diet,I’ve had no success.

[Hidden in reply to Muftah36]

Sorry to read of this problem.

I'm afraid that I'm not clear about what you write. It seems you're saying you've only been taking gabapentin a few weeks, but you've been experiencing fatigue for a year. If that's correct, then it would appear that the fatigue is not due to the gabapentin.

If the fatigue only happened after starting the gabapentin then it is possibly due the gabapentin.

Can you clarify?

[Muftah36 in reply to Hidden]

Hi Manerva, I have been feeling fatigue for about a year . That was prior to starting the Gabapentin , which I’ve only been taking for 2-3 weeks. My doctor says it’s due to a combination of the meds I am taking for RLS which also include Tramadol 150 and codeine 60 nightly . My blood work is within normal range , but upon request of the report , I realized my ferritin is down at 60. He doesn’t seem to have a lot of knowledge or interest in RLS , and COVID has not helped matters. As well, we have a shortage of GPs here so I just can’t go and get another right now . So I’m left on my own really to research my symptoms and try to treat myself re diet , exercise and lifestyle to try and improve my quality of life . Sorry for the length of this , but it does help even to express it. Thanks for your interest .

[bobse in reply to Hidden]

Are you talking about 900 per dose or 900 a day. I am on 900 a day for rls and neuropain, and both are not that great at that dose. THC helps the nerve pain but I do not want to live in a fog in my older age like i did when i was young.

[Hidden in reply to bobse]

Yes I did mean 900mg a day, but that's usually a minimum. Often people need more. You could try increasing it, but then you might feel more in a fog. I'm afraid it's a balacing act between the side effects and the RLS symptoms.

[LotteM]

I agree with Manerva. I too find that often I have to adjust the dose of a new med after some 3-4 weeks. And, indeed, 300mg is still a low dose for gabapentin. I hope with a bit more it will continue to work for you.

[ijsgrandma]

Try CBD with with the Gabapentin of available where you live. CBD (I’ve worked up to 70mg) keep my legs calm and Gabapentin helps with sleep.

[joepublic]

I find that the Gabapentin makes you drop off to sleep immediately during the day if you just sit & do something passive like watching TV - one minute you are having a conversation then the next gone off to sleep.

[Muftah36 in reply to joepublic]

I have a tendency to drop off to sleep during the day with no notice . I find it frustrating and I thought I might have narcolepsy there for a while , but my doctor doesn’t think so , and on further research I don’t have other symptoms . Such a frustrating condition !

[joepublic in reply to Muftah36]

Yes so many facets to it.

[Pagan707]

I’m afraid gabapentin didn’t agree with me and after sticking with it for a month my GP agreed I should stop. I hope it works out for you.

[amdrew_m]

Hello Muftah36, I have also found this group to be a crucial support with this horrible condition. Not worth thinking how I might be coping alone. I am currently taking 600mg gabapentin. It’s been enough to manage the RLS although I similarly started on a lower dose and worked up to 900mg at one stage. I have alarms set on my phone to remind me to take the tablets. 300mg at 4.30pm and then another 300mg at 7.30. Sometimes these times slip but I try to stick with them. I try to get to bed for 10pm otherwise I do feel the RLS tingle; getting to bed early is important for me. Not sure what side effects you are worried about? I do feel fatigued but the tiredness is less of a problem than coping with RLS without the gabapentin... the fatigue feels normal to me now and part of the routine, not ideal but better than full RLS, your fatigue might be far worse. I was on 900mg gabapentin taking the 300mg throughout the day but found myself to be in a bit of a haze most of the time and wanted to reduce the dose. It was difficult to concentrate and I felt less committed to things... everything really... life in general that was a particular concern. I do think gabapentin impacts my work, even on the lower dose my brain doesn’t appear to function as well as it once did but it is far better (for me) than struggling with RLS without the gabapentin. Hope you can find some improvement Muftah36

[Muftah36 in reply to amdrew_m]

Thanks for your response . It’s the fog that concerns me and the dizziness. I have osteoporosis so I can’t be stumbling or I’ll end up with a fracture. And I hate the thought of feeling in a fog , not alert. I also have to retire to bed around 10 or 1030 due to fatigue . So tired of being tired,but it does beat the torment of RLS . So I guess we have to get used trade offs unfortunately . Good luck to us all .

[dickJones]

If the Gabapentin tolerance continues, you could try Pregabalin. It's a similarly constituted medication and might be similarly effective. I moved from the one to the other and it worked for me. We are, however, all very different in our makeup so you'd need to discuss the drug with your GP /Physician. Hopefully you have a good one who's prepared to do his/her research!

[Loopylegs]

I've had a similar experience to you regarding tramadol and gabapentin, I upped my dose from 300mg to 900mg and I just didn't feel like myself, so I stopped gabapentin, I had a blood test done and while my iron levels weren't low they weren't great so I started taking iron (under supervision from my GP) and I take 60mg of codeine phosphate, so far I get 6hrs uninterrupted sleep a night, which for me is a huge Improvement , I also take magnesium citrate, vit C and I avoid caffeine & alcohol, I'm 47 I've had rls since I was a teenager, over the years it got worse I had it in my arms, legs, shoulders back, basically everywhere, but this is what works for me, and we're all different, I really hope you find relief, it's a matter of trial and error, keep trying different things, u will land on something that works but it takes time, very best of luck to you x

[iloveclimbing]

Hi Muftah36,I agree, it is consoling to have this group and not feel alone with such a bizarre, debilitating and not spoken about condition. I'm constantly tired, and am around many mums who look at me like I have no idea about true tiredness (because I don't have kids) and I feel totally isolated (aside from everyone here!)

Anyway - to your post - I also tried Gapapentin for a few weeks, until I got to 900mg and a few KGs heavier, crying rivers every day for no reason and decided that was worse than nights on nights of wriggling.... Ugh

I'm now trying a quarter to half of a 0.5mg tablet of clonozepam which seems to be working for sleep, although still foggy in the mornings.

Time will tell and I wish you the best. Stay in touch - this group is a wonderful support

[Muftah36 in reply to iloveclimbing]

Hello Iloveclimbing the extreme fatigue, the isolation and stress of this condition , besides the sleepless nights is so draining and I too had an episode when I was coming off Ropinarole where I cried almost constantly for weeks. I couldn’t speak without crying. Thank goodness I’m past that . It was so distressing . I thought I was going insane . I was on Clonazepam as well , but I quickly became tolerant and it didn’t work anymore. Thanks for responding .