Pregabalin

[SilverEvie]

just started journey to come off Ropinirole after 18 years. Still currently taking 4 x 0.5 mg through the day and then at 4.30pm. Just started on Pregabalin 75mg at night which is due to be increase end of this week to 150mg. Problem is I am so dizzy during the night when i get up to use the toilet and very fuzzy/dizzy until at least mid day. Goodness knows what i will be like when the increase happens later this week. Has anyone else experienced this - do i need to ride it out as such early days? Thanks

[SueJohnson]

I wouldn't increase it yet since you are having side effects. Give it several weeks to see if it resolves since if it doesn't you might want to come off it, which will be easier at the lower dose. If you do need to come off it, do so slowly to avoid withdrawal effects, reducing by 25 mg at a time.

[SilverEvie in reply to SueJohnson]

Thank you Sue again!

[Joolsg]

Pregabalin causes dizziness and double vision so don't increase to 150mg until the side effects settle. They usually settle within 4 weeks.You can then concentrate on reducing the Ropinirole. Ask for lower dose pills- they do 0.25mg. Then reduce Ropinirole by 0.25mg every 2 to 3 weeks.

You may need an opioid to help with withdrawal .

You should also ask for 25mg pregabalin pills and once the dizziness has settled, increase pregalin by 25mg every 2 to 3 days until you get to 150mg.

Hopefully the pregabalin will then cover your RLS when you're completely off Ropinirole.

[Qalba]

Same here. I could not take it. I finally ended up on opioids and I have no side effects from them.

[SueJohnson in reply to Qalba]

Have you had your ferritin checked?

[joker826]

I cannot take it. Nausea was my worst symptom. Being thatI could not eat or drink but little, I became dehydrated and needed fluids intravenously administered.

[SueJohnson in reply to joker826]

Have you had your ferritin checked?

[m1946]

Wow! You are on a very Ropinirole prescription. Not sure whether you are in the uk?I weaned of just 0.50gm and I do understand what you are going thru.

I was also taking 50gm of Tramadol so when it was decided that Ropinirole was a definite no no I slowly reduced the Ropinirole by cutting the 0.25 tablets into two over a period of 4 weeks BUT I increased the Tramadol by another 50mg capsule

For me the 100mg Tramadol was sufficient to allow me to sleep at nights (mostly) but after I think 5 years the Tramadol on their own seems not now to be working! It is 2am and my legs are

Jerking so I guess I will have to try another way!!!

Its a terrible condition

[SueJohnson in reply to m1946]

Have you tried gabapentin?

[Wiggler]

Hi SilverEvie,

Here is my story for what it's worth. I have only touched on other previous unsuccessful routes I have tried to manage this dibilatating illness that I have had since a toddler & now 48. This is where I am at now and feeling a million $'s!!

I'm on 50mg AM, 50mg lunchtime & 175mg at bed time of Pregabalin, without any symptoms of dizziness etc but getting 7-8 hrs sleep a night & at long last no RLS symptoms which were day & night and killing me after numerous other approaches from medical cannabis trial, anti-depressants, & all the other main stream medicines mentioned all over this forum. I titrated up slowly though & also take 2mg of diazepam with each 50mg of pregabalin & 5mg of diazepam at night. Also 300mg of Lamotrigine split between AM & PM, but this is for a separate issue. Take it slowly and the relief will come. Caveat -- Read all about augmentation on the forum and really watch out for this. I have read up a lot on it so keeping a VERY mindful eye on it!

My hero has been a consultant called Dr Wayne Kampers based at The Priory, Roehampton & Harley Street. All appointments are via Zoom, so very easy. Initially I had to pay for my meds privately but once on stable levels my GP surgery have taken over prescribing. I check-in with him once a month. Google his name and you'll find his web site & a very interesting talk he gave on pain management. Luckily BUPA have covered most of my costs but you may be able to see him via the NHS for UK based suffer's without medical insurance.

I wish you all well and hope this may help someone, but I know all of our stories & pain are individual and not one size fits all! Be well....!