Increased dose Rotigotine - side effects.

[MylovedhasPd]

MybelovedhasPD has upped his dose by 1mg and is hallucinating - result is he is expending masses of energy holding on tight to the bedrail. He is exhausted!

[Enidah]

Lower his dose.

[MylovedhasPd in reply to Enidah]

I could alternate lower and higher dose for a few days; on the higher he does have improved movement. Maybe the system takes time to adjust. By the way, he has also manifested extreme tremor as a result of the stress - something that never normally happens, e.g. he always drinks his own drinks and today there was a spill, so unusual

[Enidah in reply to MylovedhasPd]

I'm sorry to hear that. Stress is so bad for those of us with PD and yet so very very hard to avoid in this world. I take Lexapro for depression and anxiety and also have Xanax when I need it. Like so many of us I'm a person who seldom even took aspirin in my earlier life, but now...

[Juliegrace in reply to MylovedhasPd]

The extreme tremor may be dyskinesia. I have no tremor but sometimes my dyskinesia causes me to be unable to easily drink or pour liquids.

[MylovedhasPd in reply to Juliegrace]

I'm grateful to you for making the distinction between extreme tremor dyskinesia and no tremor dyskinesia. I think my beloved has the latter.

[parkie13]

Have you tried niacin for his hallucinations? There's a lot of information on this site about it, people say it stops them cold.

[MylovedhasPd in reply to parkie13]

I mostly talk him out of them.

[parkie13 in reply to MylovedhasPd]

I know that your husband needs you and really appreciates what you are doing for him. Removing the hallucinations would be great for both of you. Niacin, one of the B vitamins is cheap and safe. I'm going to see if I can find some of the past posts and repost them here. Sending good thoughts your way Mary

[parkie13]

healthunlocked.com/parkinso...

Here are the last posts about hallucinations and niacin hopefully that will help, Mary

[MylovedhasPd in reply to parkie13]

Many thanks, Mary. I've also heard that the energy of a medication carried in the pocket can help. Sounds extra-ordinary, but I feel at this time that taking/carrying niacin might indeed be options to choose from.

[parkie13 in reply to MylovedhasPd]

It can't hurt to try you can always stop it if it doesn't work.

[Motherfather]

hi mam tell me what else hes taking, some of theses rotigotine patches you can take 8mg patches but a lot of people find them hard to take.what other meds is he taking.as rotigotine might not be the problem.regards john.

[MylovedhasPd in reply to Motherfather]

Hi John. Interesting. I have also been wondering about the side effects of madopar (longterm use already) as distinguished from those of rotigotine. Thanks!

[Motherfather in reply to MylovedhasPd]

well for me and most people madopar is the best thing to take as theres not much more out there thats better you can try cannibis oil ill send you a video im not sure if you can get it were you are.and as for rotigotine if it dont help dont take it try other things.regards john.

[Motherfather in reply to MylovedhasPd]

youtu.be/VMIBgptTEKI(Not working as expected?)

[Hidden]

We are going threw a little of the same at this time also. My husband who has PD has been on Sinemet for 5 years 25/100 and was taking six a day. His hallucinations started last year and our GP suggested lowers the dose but we did it to fast and he developed Capgras Syndrome. Now that’s not nice to deal with. The neurologist said to go back on the 6 pills which we did and as of The beginning of Jan have been slowly reducing the pills 1/2 every two weeks. Hallucinations hadn’t stopped and we are now down, as of yesterday to 4 1/2. I also have been reading info on this site and have started him on B1 as I’d Saturday. To soon to really tel if there are any differences but he was seeing the small children and they have subsided it seems. We are still dealing with two of me and another house he thinks we live in also. No new symptoms re reduction of Sinemet which makes me wonder sometimes if he really needed them. We’ll see. Sorry to be so long winded.

[MylovedhasPd in reply to Hidden]

Fascinating! When I simply see what I see and don't have a label (this is the first time Capgras comes to me) I just respond the best I can to what happens. In what you say there are slight, gentler, similarities and we just laugh afterwards when I say you thought i was A, or in another house. These moments pass so fast, we are okay. I feel for you though. When Beloved was on longterm pramipexole he was so unmanageable, unhappy and thoroughly sorely tried....he took independent decision to wean off. That led to looking dreadful but feeling great! Then rotigotine was prescribed and things have been moderately brilliant as a result.

[Alex2004]

My Mum has been on the Niacin for about a month now (500mg a day) and the hallucinations are still around and so is the Capgras syndrome. It seems to be less severe and a bit more manageable but this may have been helped by the Thiamine that she has been taken for longer. I am wondering if it is worth trying the other types of Niacin (we are using Niacinamide Powder, flush free) and whether these would be more beneficial. I am sticking with the Thiamine and really hope it is slowing the degeneration of neurons.

Others have mentioned CBD oil, coconut oil and antidepressants for hallucinations.

[parkie13 in reply to Alex2004]

For hallucinations is supposed to be niacin not niacinamide.

[Alex2004 in reply to parkie13]

Thank you! I can see the difference now. The one I need has to contain the Nicotinic Acid which is what causes the flush. I can also see “No-Flush Niacin (Inositol hexanicotinate): This "niacin" is a form of inositol (vitamin B8) and niacin (vitamin B3) that eliminates the “niacin flush.” Inositol hexanicotinate is a form of nicotinic acid that releases over a longer period of time than standard niacin supplements. “ I might try this one as I’m sure my Mum will be unhappy to suffer the flushes. Although maybe the slow release won’t make it effective, trial and error I suppose!

[parkie13 in reply to Alex2004]

Yes, I don't know, just what I read. The niacin should be started slowly so your body gets used to it and you get used to it. As long as you know what to expect I think it's going to be okay.

[Vawomann]

My husband takes 50mg of Seroquel at night. Makes him very sleepy. It stopped his hallucinations thank goodness. They were so bad he had to go to a behavioral hospital for a week. ( This was in April 2018). He did stop taking it due to the dizziness he was feeling which might have not even been caused by the Seroquel in Dec. BIG MISTAKE!! Was confused between reality & dreaming & personality changed not for the better. So much better now. Takes it earlier in the evening & sleeps through the night. Be careful getting off meds. You’re taking them for a reason, we learned that the hard way. Does not take PD meds. Diagnosed in 2015. Only his left hand tremors but he’s very stiff. Taking B1.