I've just started my transition to Gabapentin. Today is my 3rd day. Perhaps I need to give it more time, but my immediate reaction to it is really not good. I am super dizzy, can barely get out of bed, and I feel very very low in mood. I have an internal sense of not so much anxiety, but panic/despair combined with apathy and brain fog. I also am not able to take a proper breath.
Is this normal? Should I just wait it out?
Was curious about the experience of others starting this drug.
The thought of doubling the dose in 4 days time is unbearable and then tripling it the week after that.
I'm on the standard protocol of 300 mg of gabapentin alongside my 2 mg dose of Ropinerole, and then I'm meant too boost up to 600 ms of gaba followed by 900 mg at which point I'll start tapering off the Ropinerole.
Any thoughts much appreciated. 😊
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Hi @islay9 Thanks for your message. Yes, am taking the gabapent at night as prescribed. 1 hour before bed. It does help with my sleep! So I guess that’s a silver lining.
When are you taking the gabapentin? First, you should take it at night only, around 2 hours before bed.
Second, it does NOT stop withdrawal symptoms and it's pointless to start it until you have dropped down to 0.5mg Ropinirole.
The withdrawal schedule is set out on the RLS-UK website under useful resources.
You should start the Ropinirole withdrawal before you add gabapentin. Codeine would be much better to settle the Ropinirole withdrawal symptoms when they start.
The dizziness/brain fog etc are common symptoms and will settle after around 2 months.
But if you're experiencing anxiety/panic despair you should discuss now with GP and consider switching to pregabalin. It's the same class of meds but has different side effects for some people.
And ensure serum ferritin is above 200ųg/L as per the RLSUK iron therapy page- also on the website under Useful Resources.
Hi Joolsg I'm taking the drug an hour prior to bed.
This drug is definitley not for me. I feel exceptionally unwell mentally. I will go back to Professor Leschziner with the RLS-UK protocol. I would have thought he would have know all of that already? I just trusted him and his take on how to deal with coming off Ropinerole. Many thanks as always!
Many neurologists suggest adding gabapentin FIRST before tapering off dopamine agonists. But we know from the thousands of posts on here that gabapentinoids don't help until the patient is completely OFF dopamine agonists. Many neurologists only see a few RLS patients so don't have the anecdotal evidence to see what meds work or don't work during withdrawal. And most have NO idea how brutal and hellish withdrawal can be.And even then, Gabapentinoids often do NOT work- quite a few studies confirm this.But the anxiety/panic side effects sound concerning.
Sounds like you will need to switch to pregabalin and also ask about low dose opioids to settle the hellish withdrawal when you start the reduction of Ropinirole.
In the event it's of use/interest, here is what Prof Leschziner recommended:
She should be started on gabapentin. This should be initiated at 300 mg at night, increasing everyweek by 300 mg until she is on 900 mg at night. If this has significantly improved her sleep and her RLS symptoms, then the ropinirole should be gradually reduced by 0.25 mg every two to three weeks.
So, quite a different protocol from what is recommended on the RLS-UK site, which I am sending to him now.
As stated above, many neurologists add gabapentinoids first in the mistaken belief they will completely cover withdrawal symptoms. They don't.Just look at any post over the last 10 years headed Ropinirole/Pramipexole or augmentation.
It's simply a matter of UK neurologists not seeing thousands of RLS patients a year- only those who see thousands ( the top US doctors) can see what helps and what doesn't during withdrawal.
Thank you Joolsg. It's so disheartening. Prof Leschziner responded today (he's quick with a response, and I'm at least grateful for that!) with the following:
I have prescribed gabapentin to thousands of patients, and your experience is not at all representative. The shortness of breath in particular would be very odd indeed. I do think it worth you seeing your GP to make sure there is no alternative explanation, and I would strongly encourage you to make an urgent appointment with your GP to review matters.
Given that you have only had 3 nights of gabapentin 300 mg, it is absolutely fine to just stop it. There should be no withdrawal effects.
With regard to RLS-UK and buprenorphine, I am aware of their recommendations, but this remains somewhat controversial, and I have indeed recently met with them regarding this. Very few clinicians in the UK will prescribe buprenorphine, although I do sometimes. Opiates would not be used as first or even second line treatments, and would not be used prior to gabapentin or pregabalin by most doctors, either here or in the US.
However, have tried gabapentin and apparently not being able to tolerate it, we can certainly consider opiate based treatment. I would however suggest we discuss this in a bit of detail. For the next few nights, you could consider using codeine 15-30 mg at night, which is a good temporary solution.
So, I'll pay my money and book in to see him again to see about trying something different. It is my hope that he considers opioids. I know they are not without their own side effects, but it does seem to me that many on this forum have experienced much more success with them.
This has been a very difficult day, and I look forward to getting on the other side of this.
He is absolutely correct. Gabapentinoids are now first line treatment in Mayo Clinic Algorithm and AASM guidance. And they should be tried before opioids. Low dose opioids are then available for refractory RLS or where there is a bad reaction to Gabapentinoids.Codeine is a good option for settling withdrawal symptoms AND it works well for many people.
And he's also correct about Buprenorphine. Most GPs cannot or will not prescribe it because it's red listed in many areas and UK doctors are unfamiliar with prescribing it.
Do ask him to prescribe pregabalin so you can try it because if you don't have bad side effects it will be better than the side effects you might have with opioids keeping in mind it won't help much until you are off ropinirole.
You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. You can directly switch to 50 mg of pregabalin which is equal to the 300 mg of gabapentin. However your doctor was wrong on increasing it. Stay on the 25 mg dose for 3 weeks (you can increase it to 75 mg which is the usual starting dose) as it takes 3 weeks to be fully effective.
BUT as Joolsg pointed out and I told you before it won't help you very much if at all until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 25 mg pregabalin every couple of days until you find the dose that works for you.
Thank you Sue. I have written to Prof Leschziner to explain what has happened to me on Gabapentin. I have suggested to him that I need better support coming off of Ropinerole and have recommended that he take a look at the protocol outlined on RLS-UK. I don't imagine he will be impressed by that, as my sense is that, as an expert in his field, he's not terribly open to be instructed by his patients. However, we shall see. Thank you also for repeating this info - I sometimes have trouble making sense of things with my current combo of ADHD and menopause + RLS. So I appreciate your patience with re-pointing me in the direction of DA withdrawal and how it is all meant to work.
My mum has similar side effects from Pregabalin, whereas I took up to 600mg without any problems at all. Tbh I don’t think you’ll find much difference between Pregabalin and Gabapentin, in terms of how well they manage the RLS symptoms.
After coming off Ropinirole in 2023, I had almost a year with only Pregabalin to help with the severe RLS. I don’t think it did more than take the edge offs, and that year was utter hell.
I really thought Guy Leschziner would be more open to Buprenorphine in situations like yours, although I can see why he wants to at least try this approach before moving to opioids.
Personally I came to the end of the road with both Guy and his colleague Dr David O’Regan, who would both only go as far as prescribing Targinact, which I had the most horrific reaction to. Jools took it for years without much success I believe.
Everything changed when I travelled to Bath to see Dr Robin Fackrell at the Sulis Hospital. He listened to my story, which admittedly had involved a year of Pregabalin not helping, and immediately agreed to trial Buprenorphine. Of course then my GP refused to take over, but as you probably know I was able to register as an out-of-area patient in another borough, where they have been only too happy to comply.
If it were me, I might not waste any more money on your current consultant, and go straight to Dr Fackrell. He asks for a GP referral letter before the initial consultation, which I found not to be a problem.
It’s such a pity Prof Leschziner is still not entirely convinced that Buprenorphine is the solution for people with refractory RLS caused by far too long on DAs. It changed my life overnight, and I continue to be beyond grateful to Sue, Jools and everyone on this forum who helped me through this bloody horrible maze of obstacles that RLS patients are forced to deal with. It’s so horribly unfair.
So lovely to hear another success story about Buprenorphine , its a real life changer. Like you I was prescribed privately and then the fun began finding a new gp that would prescribe it but I got there in the end ! Good luck!
Some of us just can't tolerate gabapentin. I took ONE 100 mg. pill, and had blurry vision the next morning, and was so dizzy I could barely make it to the bathroom, let alone get dressed and go to work. Glad it works for many with RLS. Alas, it's not for all of us.
Thank you for sharing Nocturne! I'm so sorry you had that reaction, but it's also good to know we are not alone as regards how we metabolise these meds. For me, there's always this little voice in the back of my head wondering "am i just making this up? Maybe I'm over reacting?" But no. These drugs are quite intense, and it makes sense that some of us with therefore have intense reactions to them.
No, we're not making it up, but I know what you mean about doubting ourselves. I always feel like a hypochondriac when I have to tell a doctor that the meds prescribed to me made me sick. dizzy, break out in hives. etc. , which is often. I'm grateful to have docs who are sympathetic and believe me. Hang in there; you will find another remedy that agrees more with your unique body. Best wishes to you, too!
Except for the difficulty with breathing, these are common side effects. I had the same reaction to Gabapentin and then Pregabalin. I also became severely depressed to the point I was unable to work for 4 months as I came off them and started Buproprion. I’ve been told to stay away from that class of drugs because of that.
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