23 replies to this topic

[woodbee]

I may have to go completly off requip due to compulsive bbehavior. I have noticed already that as I reduce my dosage I have come to a threshold if I stay above that threshold I can fall asleep with no problems when I go below that threshol I lay awake for hours. What to do ?
I want my sleep and would like to also get off the requip.

What do you do or take to get to sleep or do you lay wide awake for hours ???

Eileen

[Jeff S Griffith]

Hi Eileen,

I have had sleep issues for years, Stay away from the over the counter stuff like excedrin pm ect. I became addicted to the stuff and was taking really high doses each night ..seems this is a common problem with the OTC stuff. Now I am on Ambien and lunesta. my doctor has me alternating each night..seems to work best for me

Good luck

[jb49]

Hi Eileen,

Timing is funny for you to start this thread. This week after being on 24 mg of requip a day for a month, I decided that I wasn't happy with the way I was feeing and sleepiness. I have an appointmnt with mds next month, but in the meantime, I talked to my drug store and I am going to back off the requip a bit.

I will then have to find the Net Gypsy and stand there with hat in hand apologising. Remember back on YOPD, I used to argue with him about promoting Sinemet and dissing mirapex and requip.

So,I sleep fine still Eileen, too easily. That is why I need to back off it somewhat. Good luck to you with finding the balance that you need.

[Stargazer]

I could not resist this topic I have had trouble with sleeping prior to my dx of PD. I only got as far as buying the Tylenol for sleep never took them. The lack of sleep was my biggest problem when I was first dx so many sleep meds but nothing seemed to work until I got fully adjusted but now back to the old haunts during the night.

I am on Mirapex and feel the same way as you all do that I am going to drop it and do not want to go on anything else except the Sinemet. I have tried in the past to get the Dr. consent to go off the Mirapex but he will ask me why would I want to go off something that is doing so good for me. I really wonder how good and what trouble is yet to come.

I do think I am getting the confused thinking seems I leave a trail of unfinished jobs behind me I am not organized as I would like to be. Is it the Mirapex, the lack of stronger dose of Sinemet, age or PD progression? I guess I shall see today have an appt. with the Dr. I truly get sicker with the thought of going to the Dr. Woe is me! I am tired of this game.

Thanks for listening,
Deeann

[MarciaJ]

I know this sounds really silly but it works for me. When I can't sleep I get up drink a glass of cold milk and go back to bed and go right to sleep. I'm not on meds. I read somewhere that milk contains a chemical that promotes sleep. I'd be interested to know if this works for anyone else.

[Capa]

I have had really good luck with over-the-counter Melatonin. If I forget to take it then I typically have trouble staying asleep.

Insomnia is a very frustrating problem. My heart goes out to all of you!

[gazelle66]

hello Eileen,

I have been completely off Requip for a month now. It is more my compulsion to be on the internet that kept me awake...and still does sometimes.....

I wanted to answer this post, not because I can be of any real help...when I allow myself to sleep, I do sleep....but I can hear the frustration and tiredness here...I just want to say i'm sorry you are feeling like this....

Deeann, if it makes you feel any better, I get very confused and several people my age (ish)...also tell me tales of their dreadful memories...the silly things they do or forget to do....the lists they have to make...the notes they have to write for themselves.

I think we are ultra-sensitive to this sort of behaviour because of the parkinsons, but I find, when talking to people, it is much more common than you may think. Does that help? Maybe not....I wish I could wave a magic wand and make things better, but I've a feeling Dee that you are made of stern stuff and will feel better for your 'venting' and will pick yourself up and carry on, because that is what you do. It's the only thing to do...

My sincere best wishes and hopes that you find solutions to your problems

Sue

[woodbee]

Jeff thanks for the OTC warnings and lunesta/ambien suggestions and Marcia...thanks for the milk suggestion. It might work if I could have cookies with it (lol), unfortunately I can't drink cow milk. Capa ...Melatonin sounds like a possibility....I' will look into that one. Deeann...I hate to fiddle with my meds just now. They are working well at the moment in most ways but 2 (behavior and sleep). Sometimes the daily "little" fears are the craps but are what can make a difference if they are confronted. Like I'm afraid of what will happen to my nightly sleep if I completely go off the requip and I'm afraid of the behavior issues if I continue with even a low dose of requip.....accck. Dam! Caught between another rock and a hard spot.... though I certainly have nothing else to complain about and in fact, otherwise feel pretty well. Jb...you're right, it's all about finding the right balance. Sue..thanks for your comments... are you getting any relief from your back pain yet? You sounded like you really enjoyed swimming recently. Can you do that more?

Thanks everyone...will try some of these suggestions

Eileen

[Jenette]

I, too, have sleep problems. I'm so tired but can't sleep....12:00, 1:00, 2:00, 3:00. I tried OTC sleep aid but it didn't work. By the way - did you know that OTC sleeping pills are just Benadryl but with a different label. My doctor once told me that so I looked at the label for a sleep aid and the Benadryl label and lo and behold, they were the same.

I find the more I use my brain during the day, say, from my job, the harder it is to sleep. I occasionally just give up and drink a couple swigs of Jagermeister. It works lol

[Stargazer]

Sue Thank you for your kind words, would stern have the same meaning as stubborn, some how I don't think so but I like to be refered to as being stern it sounds better. It just made me feel better to have talked to you Sue especially. You sound really good keep it up.

Eileen I asked my reg family Dr. about going off of Mirapex and he really shocked me he said as long as it was working so well for me why go off in fact he said use it as long as you have no side effects. Difference between Drs. I guess as a rule he is rather strict on the use of some meds. He does not agree that Mirapex causes some edema, but he does not take Mirapex I do.

Thank you both and I hope you will both get a good nights sleep I get 4 hours in that I call good and then am up and go back for a cat nap bad sleeping habits but then what I created I will live with.

Bye now, enjoy reading your postings .
Deeann

[gazelle66]

Hello Eileen, thank you for asking, yes, my back has improved to a point. And yes, I absolutely loved the swimming trip...the problem at the moment is the 'getting there and back'....but I do hope to go again.

And hi Dee....is stern the same as subborn? Well, I think when the word 'stern' is used with the word 'stuff' its meaning changes slightly...a stern person I think of as quite austere...but you being made of 'sterner stuff' (which is an expression here)...I think stubborn doesn't quite cover it....there is a measure of fortitude and 'bolster' in the meaning that I don't think exists in the word stubborn.

Anyway...I am not made of sterner stuff and need to get some sleep!

goodnight
x

[Delta]

I had horrbile insomnia when I started pramipexole. It lasted exactly 6 weeks and disappeared (YEAH!!) So it might just be waiting it out everytime our meds are changed. But in the meantime here's what worked for me. I tried ambien generic, but I got really, really bad nightmares from it and had to quit. So I would stay up until midnight. No matter what I had to stay in bed until 4am and sleep or just rest. If I was still awake at 4 I would get up and watch a 1 hour episode of a tv show. If I got tired I went to bed after that. If I was still awake I would watch 1 more 1 hour episode. But I had to be back in bed by 6am at the latest. I could always fall asleep after that until my alarm went off at 7:30. Not a ton of sleep but I was never tired. My plan works best if you have a ton of tv recorded on a DVR or if you have On Demand programming.

The key for me was that after 6 weeks of this routine, I no longer have sleep issues.

[jb49]

Evening everyone, My drug status presently is 24 mg a day of requip. or was, I am titrating back down to at least 18 mg . I realized a couple weeks ago that 24 was too much and I was too foggy in my head. Backing off a bit has made a difference and I feel a lot better. But what I wanted to say is it is still ironic that the dose makes me sleepy but I can still ony sleep a 4 hour block of time. That is a good sleep. I think that I would like to stay on requip for another year before the sinemet. JB

[carol42]

hi Eileen and all,i take clonazepam 3 times a day its a mild strenght,ive read some ppl terake 1 at night to help them sleep,i cud sleep all the time tho but i take 3 per day.. it also helps with muscle spasims and anxiety,maybe you cud ask your MDS about it think its called klinopin over your way....

[netgypsy]

Hi guys

regarding sleep - I was "sleep and dopey" on requip but no problems sleeping on sinemet either.

Remember that sinemet is not the enemy and does not cause PD to progress faster. It's like insulin for a diabetic - a natural substance we don't have enough of.

BUT IF the agonist work well for you, great. They never did for me and I just kept on taking more and more and they did not help the symptoms and turned me into a zombie - a nonperson. I wish I had known what I know now, three years earlier. Losing three years of your life is not a good thing.

That said, your drugs are your personal choice. If they are not keeping you normal then SPEAK UP because sinemet can keep you normal. There are other choices like DBS and the stimulation that the pharmacist had is most interesting also.

Now regarding reducing requip - anxiety is common and can get much worse when you do this. I had major panic attacks when I finally stopped taking it. I tried the neupro patch also but again had terrible panic attacks and it took me a year to get switched over from agonists to an opitmal dosage of sinemet. It takes time and a lot of experimenting because getting right dosage is the problem, not the actual drug working. If you have PD it will work. The question is how much do you need, how often should you take it, what foods keep it from being absorbed, does sinemet CR work well for you or do you overdose as I did in the afternoon. You can and will get the dosage right and get your life back as I did but it's not fun when you let yourself get to the point where you can barely function before changing.

I now take only sinemet, vitamins B12, folic acid, D, minerals calcium, magnesium and use the nitroglycerin patch and a short acting calcium channel blocker to keep my blood pressure low when I lie down. so only one PD med. I get the best results from taking 2 50/200 sinemet CR tablets every six hours but again it's your body and you have to experiment with your docs to get the best possible dosage, frequency and decide whether CR or regular work best for you. And also decide if you wish to mix agonists with sinemet.

You might try provigil or caffeine or both to be a bit more alert. I didn't use them until I was on sinemet when they do work well for me. Don't know how they'd do with the agonists - ask the DOC

Good luck getting the right meds. Don't settle for being shaky, dopey and sleepy as I did for far too long. You can do a LOT better than that. Try the different choices and use what works. Don't let the docs tell you you are doing great when you know you aren't. There are a lot of misinformed neurologists out there. I know - I've met a few who were really ignorant about PD.

Edited by netgypsy, 02 May 2011 - 12:08 AM.

[jb49]

Mr. Net Gypsy, I do value your opinion cause you are some kind of scientist, you have been there and done that and you have horses. Tell me about manganese. Some people take it as a supplement. Other people wonder if it caused thier PD in the first place. have a good day jb

[woodbee]

jb,

Read this article for info on manganese. smiles,

Eileen

http://www.suite101....nganese-a287416

[woodbee]

jb,

and one more...

http://www.scienceda...10406161028.htm

Eileen

[netgypsy]

Manganese, among other things like rotenone, supposedly can cause PD. Magnesium on the other hand is an essential mineral which many of us are deficient in. BUT milk of magnesium which is a magnesium salt, is not readily absorbed, especially by PWP so if you think you are deficient in magnesium, get checked and I think you can get magnesium citrate as a supplement. But milk of magnesium just keeps the gut wet enough so your food doesn't turn in to concrete as it does with me if I don't take sinemet.

[newbob10]

I wanted to ask a related question. I've had trouble sleeping latey, mostly because my body feels "jittery", and often because my limbs are "jerking" (my legs will suddenly flex, or my head will jerk to the left, and I'm sensitive to touch). This is the restless body syndrome others have discussed here I think. The other night my head kept jerking to the left every ten to twenty seconds or so for over an hour and a half. Fortunately, Clonazapam has helped me when I really need it to settle the spasms. I usually won't take it though it it's past midnight or so, so I can get up in the morning without feeling drowsy.

I'm curious - has the insomnia any of you have experienced been due to feelings similar to this, or just inability to get to sleep for other reasons.

Thanks - Bob