Ropinerole and Hallucinations

[jerky]

I read on the effects of ropinerole that it could cause hallucinations. I have been on requip and now ropinerole for about 10 years. I get very little sleep especially when I experience hallucinations. Mostly two to three hours a night with no cat naps during the day. I have never seen anyone on posts that have this trouble. My Dr. said she didn't believe that changing the meds would make any difference as they all cause this defect. Any suggestions.

[badnights]

Maybe ask your doctor if you understood her correctly. It is my understanding that a different medication, even of the same class, will not necessarily produce the same side effects, even if those are listed as potential side effects of the new med. In fact, there is no way to tell what side effects, if any, you will get except to try it. And it's not the same for everyone.

Hallucinations on ropinirole does not necessarily mean hallucinations on pramipexole, so it IS worth giving pramipxole a try. That's my understanding of it. So maybe ask her, is there any chance I WON'T get hallucinations if I switch to pramipexole? She will have to say yes, there is a chance. So then ask to switch.

Ropinirole is the generic name of the drug, and Requip is one of the brand names it is marketed under, so they're basically the same thing: they;ve got the same active ingredient (but may have different fillers and other additives). Mirapex is one of the brand names for pramipexole. Both ropinirole/Requip and pramipexole/Mirapex are dopamine agonists also used for Parkinson's disease.

[badnights]

PS I or one of the other moderators will move your post and the replies to a new thread, probably in teh Pharma section, and probably with its own title such as "Hallucinations on ropinirole", so that your topic is separated from the Quality of Life topic. If we leave it here, it will be harder for others to find the information about hallucinating etc., since your posts will be hidden in a thread about something else.

[majoraward]

I read on the effects of ropinerole that it could cause hallucinations. I have been on requip and now ropinerole for about 10 years. I get very little sleep especially when I experience hallucinations. Mostly two to three hours a night with no cat naps during the day. I have never seen anyone on posts that have this trouble. My Dr. said she didn't believe that changing the meds would make any difference as they all cause this defect. Any suggestions.

If I may ask, what do you mean by hallucinations?

I'm wondering also if the cause and effect might be reversed. You said "I get very little sleep especially when I experience hallucinations." Could it be that because you get very little sleep that you get hallucinations? I am asking because my RLS/WED is so severe that when I have no medications I stay up 7 days a week 24 hours a day until I passout. I have been on many medications, I couldn't take ropinerole though, but I have been on Mirapex on and off for years, yet I don't think it was the drugs that caused me hallucinations but the lack of sleep.

The hallucinations I had were hearing something that hadn't been said or a noise that wasn't there, or seeing something out the corner of my eye that wasn't there. After awhile I would just ignore all of it, except a loud bang or something like that and I would ask my wife about it if she were around and I would immediately know that she hadn't heard anything by her reaction. Are the hallucinations something that you can't ignore, like a nightmare? I have had some very disturbing dreams and they have been caused by medications, they sure weren't caused by lack of sleep cause I wasn't dreaming at the time

[rthom]

[quote][/I don't think it was the drugs that caused me hallucinations but the lack of sleep.

quote]

Hey guys I also get hallucinations fron extreme sleep deprevation--takes a long time but I have seen things while awake a few times and after I get sleep it no longer happens. I saw what looked like a demon coming up the wall and accross the ceiling at me. I knew immediately it was't likely real and just had a momentary start. Once again sleep stopped it from continuing.
Hope that helps some.

[ViewsAskew]

Hallucination is a side effect for both Requip and Mirapex. Kinda scary, huh?

[badnights]

Yes, scary. Argh. Ten years?? These hallucinations occur during wakefulness?

[jerky]

Thank you all for responding to my problem. From that information I conclude that the sleeplessness has caused my hallucinations. I am so glad to be assured that I am not the only one suffering from this sleep robber. My Dr. would not change the medication (robinerole .05 mg three times a day) but did prescribe a sleeping pill Lorazepam. 0.5mg to take as needed. Since taking it, I have not had any hallucinations. So have concluded that the sleep depravation has caused the problem. Now I have another problem as the medicine prescribed is addictive. I do not want to be dependent on any more medication as I am sure that I am dependent on Robinerole. I would rather die than to give up the one thing that does take away the rls. I will ask my Dr. if we could change to Mirapex as that seems to be the medication that most take and with good results.

The hallucinations I had were friendly ones. Some one would gently wake with a touch but no one was there. It progressed until I heard music and the telephone would ring in the middle of the night, with no one there. Then unknown people would appear but said nothing and would disappear. I thought I was losing my mind. I am much relieved to hear from you sufferers. Thank you so much, all of you.

[Polar Bear]

I have used ropinerole for about 7 years. About 5 years ago when I was working full time having just had perhaps 3 hours sleep, there were occasions while in work when I heard someone say my name and I'd look over my shoulder. No-one there. Perhaps at the photocopier... I'd look around to see who spoke to me as they passed by. It was a soft voice, not loud but louder than a whisper. it hasn't happened in a long time, indeed not since I've left work.

I think that's because I am not under the same pressure of paid employment while sleep deprived. Or else there is still an entity floating around the photocopier ... lol.

[majoraward]

I would rather die than to give up the one thing that does take away the rls. I will ask my Dr. if we could change to Mirapex as that seems to be the medication that most take and with good results.

If Mirapex doesn't work you might try Neupro. It can take awhile to get things working again and the doctor may have to try combinations of medications. I have to put up with taking Methadone, Lyrica, and Mirapex everyday plus Ambien if it gets really bad, also Oxycodone. Recently I was even given an Iron Infusion. Last time one of my meds stopped working I got very little sleep for 6 weeks. It can be a very serious desease. You wouldn't believe me if I told you how long I have had to endure this without the medications working, but I did because I knew eventually things would get better. Saturday before last we took our 2 grandkids to a Santa breakfast and I had a great time. I live for things like that! You have to remember the good times, look towards more of them, and hope for the future. One of these days there will be a cure and in the meantime new medications like Neupro are coming out that are helping loads of sufferers.

[ViewsAskew]

Jerky, do make sure you have your doctor test your serum ferritin levels if it hasn't been done. Whether you take ropinerole or pramipexole, serum ferritin should be at least 100. It's often much lower than that. Having it this high helps prevent a potential condition caused by the medication where the symptoms get worse/start earlier. It's NOT fun!!! The condition is called augmentation. Many doctors are not familiar with the research about augmentation as it's relatively new. So, we often have to help them learn about it and make sure that we're not taking this drug until our serum ferritin is high enough.

[badnights]

Ditto on the ferritin test!

Also - if the hallucinations are gone and you are not experiencing problems, why do you want to switch from ropinirole to Mirapex/pramipexole?

[rthom]

I would rather die than to give up the one thing that does take away the rls. I will ask my Dr. if we could change to Mirapex as that seems to be the medication that most take and with good results.

Saturday before last we took our 2 grandkids to a Santa breakfast and I had a great time. I live for things like that! You have to remember the good times, look towards more of them, and hope for the future. One of these days there will be a cure and in the meantime new medications like Neupro are coming out that are helping loads of sufferers.

This is the key to the best quaality of life anyone can have isn't it. To recognise the truely worthwhile and make them the central focus in your mind. Good reminder for all of us!

[jerky]

Ditto on the ferritin test!

Also - if the hallucinations are gone and you are not experiencing problems, why do you want to switch from ropinirole to Mirapex/pramipexole?

The hallucinations are still appearing and even taking the ropinirole the rls starts before the next dose is due. I can start walking and be relieved but it cuts down on my sleep. I need to know if the medicine is causing the hallucinations or if it is caused by lack of sleep. I get about 2 to 4 hours sleep a night. On the next Dr. visit I will ask her to test the ferritin level, and to try another medicine. She was reluctant and gave a sleeping med.Lorazepam to be used as needed. I need it most of the time but only writing the prescription for 30 days and the next visit in 3 months. It doesn't make sense.

[rthom]

Jerky hw much sllep are you getting? Has it changed alot recently?