Good morning everyone,
I'm a 36 year old woman with a 3 year old daughter and a few years of RLS.
I suffered with excessive daytime tiredness for years before having sleep studies at st Thomas hospital in London and was given a diagnosis of obstructive sleep apnoea. They couldn't believe a slim woman in her 20s had such sever OSA and they were excited about my case study. I had the UVPP operation which was horrific but cured my apnoea immediately. Although I was left with PLMD throughout the night. They gave me Valium at night and melatonin with a stimulant for the day but it didn't really work. Then I got pregnant had my daughter and breast fed for 13 months so abandoned feeling rested and of course didn't take meds. However I seemed to have mild RLS which bothered me. However the RLS has gotten worse and spread to my arms along with spasmy jerky legs. My GP prescribed valium and I self medicated co codmol but my husband suggested I ask to go to a specialist. I saw a Neurologist who gave me ropinirole in July last year and it was like a miracle. I loved the sedative effect too and increased to 1.25mg which was perfect. However the side effects were immediate - a totally blocked nose (so stuffy I couldn't sleep ironically), extreme nausea and - I realise now - compulsive impulse/behaviour. I have gained a stone in weight which is so upsetting for me and £1000 on a credit card.
After speaking to two neurologists finally they agreed that the side effects are not ok for me. So I tried to come off. Oh. My. God. Now I understand why my symptoms were starting earlier in the day. The ropinirole treats my RLS but makes the symptoms earlier and so much worse without it!
Has anyone tried to come off ropinirol/had a similar experience/have any advice or guidance? I have all options available to me now as my GP and neurologist are good. Will other dopamine agonists have the same side effects? Has the ropinirole made my RLS worse for ever?
Thanks for reading,