Medication side-effects

[danamias]

Hi all. I'm tripping over my words, as well as having difficulty in accessing words. Tongue feels strange. I'm on 2mg of Ropinirole and 900mg Gabapentin. Been taking this combination for over a year - definitely helping with the RLS. I don't think the symptoms I'm experiencing are typically associated with RLS but could they be a side effect? Has anyone else had these symptoms while on this medication? Thanks.

[SueJohnson]

They could be caused by the gabapentin, although it is strange that they are just now appearing since you have been taking it for over a year. Talk to your doctor about this but I would suggest coming off the gabapentin and see if the problem clears up. However you must come off it very slowly or you will have withdrawal symptoms. If you do it slowly enough, you won't have any. I remember I suggested you might switch to pregabalin as the side effects on gabapentin for some people don't affect them on pregabalin. You might want to try that first. 150 mg pregabalin is the equivalent of the 900 mg gabapentin you are taking and you can make the switch directly. Then give it a few weeks to see if you have the same side effects.

[danamias in reply to SueJohnson]

That's really helpful Sue. Interestingly enough, a neurologist told me that he preferred pregabalin to gabapentin. I'll run that idea by my doctor

[W0nk042 in reply to danamias]

Main reason to prefer pregabalin to gabpentin is that it‘s easier to take. With gabapentin the body can only absorb a certain amount at once, so larger doses need to be spread out over the day/evening. Pregabalin doesn‘t have that problem, hence docs prefer it. At least that‘s my impression after discussing it with a bunch of them.In terms of effect on RLS, they are very similar, which is part of why you can switch without tapering.

[SueJohnson]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

[danamias in reply to SueJohnson]

Had my iron and ferritin checked Sue. All fine.

[SueJohnson in reply to danamias]

Do you know what it was? Doctors will tell you it is fine, but what is fine for others is not fine for those of us with RLS.

[ChrisColumbus]

Dysphasia/aphasia have sometimes been linked to Gabapentin, but there are of course other possibilities. I suggest that you talk to your doctor.

healthline.com/health/dysph...

I had the problem briefly after a minor TIA (never taken any meds for RLS)

[Amrob]

I've read of people on this forum and another reporting difficulties in recalling words when on pregabalin (possibly gabapentin) but I've not heard of tripping over words.Although not typical, it is possible for new side effects to emerge after having been on a medication for some time.

Seconding ChrisColumbus, I'd encourage you to speak to your doctor about what you're experiencing.

[danamias in reply to Amrob]

Thanks Chris. Is your RLS mild? I'm wondering how you cope without meds.

[ChrisColumbus in reply to danamias]

There have been many times over the last 40 years when I would have said that it was anything but mild - unable to stay in bed, pacing around and around, stretching, lying on the floor etc. I worried that if I started on meds I might have to be on them for life/get addicted....

But now it's *mostly* under control, and when it does happen I can usually stop it fairly quickly. I started taking Magnesium Citrate a number of years ago - after trying oral iron and other oral and topical Magnesium without success - and that helped a lot. Many find that iron supplementation has the same effect.

And I found that too much or too little exercise, too much caffeine, too much sugar, and particularly artificial sweeteners in 'diet' drinks and food were all triggers for me. I believe there are many other dietary triggers. Sleeping on my back also tends to bring it on. As does being too warm. Avoiding these factors has also helped a lot.

I still had a bad patch 2+ years ago when after the TIA I was put on statins, which ruined my sleep for months. I had to argue myself off these. And there are many other prescription and OTC meds which trigger or exacerbate RLS. (See e.g. SueJohnson 's lists)

Medical professionals are mostly personally ignorant about RLS, are reliant on out-of-date and/or incomplete information sources, and many are dismissive of the condition. They really shouldn't be prescribing drugs for something that they don't understand - drugs which may or may not help for a while but ultimately worsen the situation and/or even damage the body.

I know that this doesn't help people who have already tried one or two (or more!) treatments, but I feel that drugs should be the very last treatment option for RLS: unfortunately ultimately unavoidable for just a minority.

[danamias in reply to Amrob]

Thanks Amrob. I'm hoping to speak to my doctor on Monday.

[Elsie77]

I’m on 1100 mg Gabapentin I have the same problem, my mouth/lips feel tight and I can struggle to start a conversation or stutter mid sentence. It’s happens less now but if I’m overtired I wake up with it and it can last till lunchtime.

[SueJohnson in reply to Elsie77]

I know I mentioned to you that you might want to switch to pregabalin to possibly get rid of this side effect. Did you ever try it?

[Elsie77 in reply to SueJohnson]

My GP knows very little about rls his response to the link to updated info was a) not relevant to uk and b) he can only prescribe what I’ve tried. I can’t get a face to face consultation, not even via face time on internet, will only discuss it via ask my gp emails. I struggle to get through either closed or open for very Ltd time which is often less than an hour. So I’m going to up the Gabapentin to 1200 mg and see if that will allow me to sleep through the night .

[SueJohnson in reply to Elsie77]

It sounds like you need to switch doctors or see if you can get a referral to a neurologist.

[Elsie77]

The rest in the practice are no better. He has referred me to a neurologist but have to go through phone triage first to be considered.

[W0nk042 in reply to Elsie77]

That‘s terrible. Which country do you live in? Fingers crossed that you‘ll get through triage. RLS can lead to suicide if intense and not treated. It‘s really messed up that so often our suffering is dismissed by those who should know better.

[Elsie77 in reply to W0nk042]

England

[Munroist]

Hi, it's a while since you posted this but I've just seen it. When I was on pregabalin I started getting an odd stutter or block when I was mid conversation or trying to initiate a conversation, often in company and in in busy social environment, a little like Elsie77 reported in this thread. I'd never had it before pregabalin. When I came off pregabalin it mostly went away but very occasionally I still get it which I find odd.