Pregabalin side-effects? Or something else?

[Rachelp1]

Dear fellow sufferers

I wonder if I could get your advice and feedback on side affects I appear to be having from taking pregabalin. In Feb this year I managed to get an appointment with a neurologist who agreed to let me start on pregabalin to help me reduce my Ropinerol. Initially I wasn’t sure whether I was getting any benefit from the pregabalin, I started on 25mg and went up to 150, whilst successfully managing to reduce Ropinerole. In the past few months I’ve noticed some side-effects which are having a serious affect on my life. Worst side-effect is that they have significantly impacted my speech, I find it very hard to articulate myself, to the extent that I sound drunk, in my line of work as a retail manager, good communication is a necessity and work has become really difficult for me. Certain specific actions are also very different life brushing my teeth and washing my hair, Writing and typing have become impossible (this message produced using dictation on my phone).

My question is, is this due to pregabalin? Has anyone had similar side-effects? my concern is that there is actually a totally separate issue, but I have Blood tests last week that came back negative. I’d be grateful for any help and advice anyone can offer please, obviously I’m going to continue reducing the pregabalin, which will leave me back at square one so any advice on other drugs to try would also be gratefully received.

[Joolsg]

Are you completely off Ropinirole now? When do you take pregabalin? It should only be taken at night as it causes drowsiness & loss of balance & a similar sensation to being drunk.

[RayP67 in reply to Joolsg]

I have reduced Ropinirole by a 3rd, i take Pregabalin after dinner before bed only. I have shakes and tremors all day and speech slurring seems to get worse as the day goes on.

[Joolsg in reply to RayP67]

Hi RayP67

Are you the same person as Rachelp1?

If so, and you’re reducing Ropinirole, the shakes and tremors sound like withdrawal symptoms from reducing Ropinirole.

What dose were you on and how are you reducing it? Pregabalin won’t help RLS while you’re still on Ropinirole so it may be better to ask for a strong painkiller like tramadol or codeine or OxyContin to deal with Ropinirole withdrawal symptoms.

Reduce very slowly- 10% every 2/3 weeks and wait until symptoms settle before reducing further.

Pregabalin can cause daytime drowsiness and so keep to a lower dose until you’re off the Ropinirole.

[PramAddict]

Last year my neuro wanted me off ropinirole. I had to ween off, which took me 3 months. Was horrible. Then she stopped corresponding with me which left me devastated. I spent a couple months trying to find a neuro that knows about rls. Well I was put on pregabalin and carpidopa/levadopa. I am worse off that I was last year. Ended up begging old doctor to help. Find out the carpidopa/levadopa is thr same type of med as ropinirole..ugh. also need to ween off. Coming off pregabalin now which has taken me several months. Please reduce slowly.. it has made me so sick.

My rls has me so depressed thought of ending my life at times.. see therapist now.

I wish you luck. ..I do not know what to do anymore.

[Heatherlss in reply to PramAddict]

That is so sad to hear. I feel really sorry for you. Can you please mention which country you live in ? Perhaps someone could help you out by recommending a neurologist.

[rls-insomniac in reply to PramAddict]

Hi Pram-Addict. I'm sorry to hear that you are suffering so much and that you are experiencing such inadequate help from your doctors. I see from you previous posts that you live in the US. There is an RLS specialist a Dr. Mark Buchfuhrer in South California. He also has a website under rlshelp.org which may be of use to you. This also provides his contact details. Maybe you could contact him to help you.

Out of interest why are you weaning off pregabalin? This medication does help some people with their RLS. However, you probably won't get much benefit from it whilst you are weaning off a DA. Dr Buckfurhrer should also be able to help you with this as well.

[PramAddict in reply to rls-insomniac]

Thank you for the info. I dont see where the pregabalin had done anything and the original doctor that had me ween off the pramipexole is having me ween off this before I ween off the da.

[rls-insomniac in reply to PramAddict]

I wonder why your doctor has chosen to do this. So far as I am aware, pregabalin does not cause augmentation unlike DA's. When I was weaning off ropinirole, (another DA), my consultant prescribed me gabapentin (which is similar to pregabalin) to take at the same time. I can see from the forum that it is quite common for someone to take a gaba whilst weaning off a DA. My GP also prescribed me an opioid to help with the withdrawal symptoms as RLS symptoms will probably be exacerbated whilst you are going through withdrawal.

I would urge you to read through the various letters and replies given by Dr Buckfuhrer on his website as they are most informative and would give you an idea of how he treats individuals in your situation.

In addition, there is a lot of information on this forum regarding withdrawing from DA's and details of which drugs have been prescribed to help as well as some drug free options. (Although the drug free options didn't really help me as an individual).

It might be an idea to do the above first and then go back to your doctor so that you are better informed and hopefully they may be more receptive.

Unfortunately there are few consultants and doctors who have experience in helping someone with RLS and therefore the more knowledge you have the better for you.

[PramAddict in reply to rls-insomniac]

I have definitely found out that not all neurologist know a lot about rls. Yes they can treat, but not really understanding the disease.

I see a doctor from johns Hopkins sleep center and restless leg center.. she put me on gabapentin when first weened off pramipexole.. didn't seem to help and when I contacted her about it she just stopped corresponding.. so I had to see other doctors that put me on the other meds.

I'll look at the website.. thank you

[rls-insomniac in reply to PramAddict]

Is there any way you could telephone your consultant or speak with her secretary or team. To be honest, I'm experiencing the same thing with my consultant and have now gone down the complaints route,

It does take 3/4 weeks for pregabalin to fully work and also the dose that you were taking may not have been enough to help. The dose is usually between 150mg - 300mgs.

I wish you luck and hope you can find some help,