final days of Requip

[Opie__]

I only took 1mg of Requip for a couple of years. Doctor said I could take 2-1 mg a day. Something told me not to do it so I only seldom took over the 1 mg. Recently I did take 1/2 because of taking care of a family member and her dementia didn't allow her to understand me walking around. I have given up the 1/2mg I took 2/3 days a week a while back. I am down to .5 at night and have been 'surviving so far". The .5 doesn't seem to make me sleepy or help me sleep much better.

The last few nights, still at .5 but decided to try something because I didn't thnk I had anything to lose. Sometimes I can't fall asleep for an hour or more, so I started reorganizing cabinets, closets and just about anything. Usually after an hour or so, I will stop and lay down and my RL seem to be gone. I will wake up usually in a couple of hours and start cleaning again. Again I can go to sleep after an hour or so and sleep til morning. It is so much better than just walking around the house.

Just wondered if anyone else had tried this? In a few more weeks, my house will be spotless lol.

[SueJohnson]

It's distraction and that often works as you found out with the benefit of a spotless house.

[Joolsg]

Yes. My house was immaculate when going through augmentation. I washed down skirting boards and door frames and ironed everything! Distraction helped. I'd sleep from 6am to midday. Didn't work so well during the 2 week's withdrawal though.Take it slowly and you'll manage to get off that last 0. 5mg. Have a plan ready for when to start replacement meds and ensure you get full panel fasting blood tests to ensure serum ferritin and serum iron are above the recommended levels for RLS.

[Opie__ in reply to Joolsg]

My new neurologist is testing me at 8 week increments to check ferritin levels. My ferritin was 11 at first check a couple of months ago. I am currently taking oral iron to see if that raising numbers. Thanks

[Joolsg in reply to Opie__]

That is incredibly low for RLS and would qualify you for an IV Injectafer infusion.There are several research papers showing that taking iron once every other day raises levels faster than several times every day so it might be worth showing to your neurologist. Taking ferrous bisglycinate at night, rather than in the day, seems to work better as well because that's when the brain needs the iron.

pubmed.ncbi.nlm.nih.gov/314...

It took me over 18 months to raise ferritin from 45 to 145 using ferrous bisglycinate every other night. I did manage to persuade my local NHS hospital to give me an infusion 'off licence' on 'compassionate grounds' here in the UK where they don't accept the link to low brain iron.

You should ask your neurologist if he or she would consider an infusion as it would raise levels quickly.

The Mayo algorithm does say to use oral iron if levels are below 75 but many doctors will arrange the infusion. 60% of RLS patients see a dramatic improvement from infusions.

You might be able to be medication free if you raise levels above 100, preferably 200.

Wishing you strength to get off that last 0 .5mg.

[Opie__ in reply to Joolsg]

the neurologist did talk about infusion but wanted to try oral iron for a few months. My neurologist and primary care doctor are working together really well. Neurologist is 2 hrs away and I really appreciate them both for doing so. If I have infusion, hopefully it can be done locally as well

[Johan10]

Yes definitely identify with this. I use jigsaws. Highly effective at distraction and quite satisfying to do without winding me up. Usually once or twice a night for about 20 minutes gives me at least a half hour window each time RL free to get back to sleep. But now hoping gabapentin will see me through 8 hours. So if there's no more cleaning to do try the jigsaw!

[Opie__ in reply to Johan10]

Thanks

[Munroist]

I always save unloading the dishwasher for one of my nightly wakings, takes about 15 minutes and I normally go straight back to sleep after. It also makes me bend and stretch while putting things away so good for easing stiff back. There are often two or three little jobs or things to check after every day which normally get forgotten like watering plants or looking stuff up on the internet and you can do those too.

[Opie__ in reply to Munroist]

thanks, I will check out some of them on line. Last night was the best night yet since lowering Requip. I only stretched and did light job for 15/20 minutes. Then able to sleep til morning.

[Reba1]

I often get up and get muffins all made to be baked in the morning. Same for a coffee cake or pancakes. Will also empty the dishwasher, and spiff up the kitchen a bit. By then I’m pretty tired and fall asleep easily for several hours.

I have taken 1.25 mg ropinerole for over 5 hrs and pray everyday that I won’t have to go through the augmentation. After this long, I’d like to think I won’t but I’ve heard enough stories here that I know it could still happen. On tough nights I also take .5 mg xanax. Is this a definite “no-no”. It hasn’t bothered me at all and definitely italy helps me sleep.

I’d appreciate any input. Thanks

[SueJohnson in reply to Reba1]

Xanax is fine.