I'm hoping for some advice from long-term sufferers. I am now 67 and I've had pd for 8 years. Managed to keep off drugs for first 3 years, then 'progressed' via dopamine agonists to my current dosage which is mainly Stalevo. I take 200/50/200 Stalevo plus Requip XL 8mg at 8 a.m., then 150/37.5/200 Stalevo at 12, then 100/25/200 Stalevo at 3.30 followed by 100/25/200 Stalevo at 7. Finally another Requip XL 8mg at 9 pm.
Lately I've had big sleeping problems, often getting 2/3 hours per night, so have reluctantly used Zopiclone 7.5 mg to get 3/4 hours. I've also started 'writhing' in the last 3 months - never previously a problem.
My specialist is only concerned about the amount of levodopa I consume (the first figure in Stalevo) so this is currently 550 mg.
The question I'm hopefully asking the forum is, wouldn't it be better for my body if I took 100/25/200 Stalevo at, say, 8 am, 12 noon, 4 pm, 8 pm, 12 midnight and 4 am?
This may help me to sleep better and also to avoid the awful frozen, speechless state I currently wake up in? Does anyone agree that it seems crazy to have no medication for 11 hours at night?
Please please reply with your own experiences as I'm trying to avoid boosting my specialist's retirement pension to the extent of £150 for a 20-minute chat!
I think you should check every dose change with your consultant.
But here's what I think.
I think that the night time is often overlooked by the medical team. It is really important to get some rest. I take my Stalevo almost on a as-and-when basis. When I feel off I have one. That means I often have some available for the night-time. I sleep better if I take one at 12 midnight, and again at 4 am. I regard them as a treatment for the symnptoms of PD, not like antibiotics. Try it!
But I am not a doctor
I am hopig I have 'cracked' the sleep problem. Like you I was only gettting 3/4 hours and had run out of anything to take wthout increasing my dose. I am on sinimet, ropinerole and mapopar I dont think the doses and times matter. I also have zopiclone 7.5 but have been advised to take it only twice a week. I found that if I went to bed at say 11pm and took my last dose of whatever, I would wake around 2am and often couldn't get back to sleep. What I do now is not take any thing at bedtime - I am tired so will get off to sleep anyway. I then take my last dose of the day when I wake up at 2am and find I then sleep for another 4 hours. When I take zopiclone, again I take it when I wake at 2am and can then guarantee another 5 or 6 hours.
Hope this helps
Dosage and times can make a huge difference. Our PSN has instituted, after monitoring dosage, timing and effects over many weeks, a strict regime which has helped improve off times.
Madopar disperible has been added on, as an as needs basis for late at night, middle of the night or early before first meds are due. The new regime though finds that this is hardly ever needed.
Hi Spam95 and thanks very much for posting a reply. Could I ask you how much Stalevo you take during the day and the size of the night-time top-ups? As I said previously I take 200/150/100/100 during the day for a total of 550mg levodopa. I would prefer to reduce the initial morning 'hit' of 200mg and feel that if I had some during the night I could achieve this. Dont worry, I'd just like your opinion and always check with my pd nurse and/or specialist before implementing any changes.
Hi JaneyS and thanks for taking the trouble to reply. I'd be grateful if you could let me know the size of the doses you take morning/night. I have been sleeping so badly that I've been taking 7.5 mg Zopiclone each night for the last couple of months but I feel I could reduced this by judicious use of Stalevo? Many thanks.
Good morning John,here goes!
I start the day with a Madopar dispersable (12.5/50.) normally about 6am. I am a morning person so I tend to leave the other half to sleep and get on with the chores. At around 7 I take one and a half sinimet 12.5'50. I know cutting tablets in half is not ideal but I dont feel I need any more yet. After breakfast, 9am I take 6mg ropinerole. (I tried the one a day ones but they didn't suit me - didn't seem to stay in my system as they should) At around 11am I take another one and half sinimet and after lunch another 6mg ropinerole. If I am going out walking or cycling in the afternoon I probably take another madopar just to make sure I dont get caught out and then another one and half sinimet at 5ish.(I try to allow an hour before food with this.)The rest depends on what I am doing in the evening - if I have people coming round or am going out then I take another 6mg ropinerole after supper, otherwise I leave it till about 9. I then go to bed at around 10.30-11 and take the final sinimet whenever I wake up. Last night I did take the sinimet before I went to sleep and a zopiclone at 1am - the slept will 6 which was 7 hours sleep and I feel great this morning. Within reason both my PD Nurse and my GP are happy for me to tweak my meds myself as long as there are no drastic changes.
I am 63 and was diagnosed 11 years ago. I am retired and lead what I consider to be a normal, acive life - walking, cycling, driving, shopping, travelling around the world etc
Good luck and have a great christmas
I used to have terrible trouble sleeping at night, often ironing at 3 in the morning. The problem was solved for me by taking slow release Sinemet before I go to bed. This usually lags over into the morning so I have enough movement to get up and make a drink before I take my first meds of the day.
I take 2 x sinemet plus every 4 hrs through the day, thats 800mg of Levodopa and then 1 1/2 sinemet cr at night, that's another 300mg. I sleep 6-7 hrs per night. I also take 1mg rasagiline and have rotigotine patches 12mg/day.
This seems a lot more medication than you are on. I'm 54 and have been dx for abut 6 years.
Hope his is of interest
Thanks for all the replies, I,m very touched that people who have many problems of their own are kind enough to help others.
Had a tough time over Christmas - finally phoned my specialist and - guess what?- if I went private my nhs appointment scheduled for September 2013 could be brought forward to?.........this afternoon! The NHS is a disgrace! Duly paid my £160 and met him to discuss alternatives. Finally agreed to increase the current dose of 550mg Stalevo/day to a whacking 800mg/day. Still gave me no peace at night so yet another
FREE meeting with my GP produced a solution of 0.5 mg Clonazepam So now my total dose is Stalevo 200mg + Requip XL 8 mg at 8 a.m. then 3 doses of 150 mg Stalevo at noon, 3.30 pm and 7 pm. I take Requip XL 8mg + 0.5 mg Clonazepam at 9 and a final
150 mg Stalevo + 7.5 mg Zopiclone at 10 pm. My specialist reckoned that I'm trying to manually correct a tiny intuitive difference in the original brain - and success is virtually impossible: too much sinemet and I fidget, too little and I freeze.
Many thanks for all replies, very very interested in peoples experiences with Stalevo and also any effects associated with Zopiclone and Clonazepam.
HAPPY NEW YEAR EVERYBODY - We cant beat this disease (nobody gets out of here alive) - BUT WE CAN HAVE A DAMNED GOOD TRY!!!
Hi John3419 I was dx 12 years ago and during that time my meds have been tweeked numerous times. Not enough Ldopa and I shake, stiff, sore, you know how it goes! Then too much Ldopa and my body squirms around like a blooming octopus. I think that we have finally have come to a dosage that is ok (at the moment) for my body and which allows me to sleep at least until 5-6am.
My dosage is currently at :
225mg Venlofaxine ( pd depression)
500mg naproxen ( arthritis)
2pm ..150mg Stalevo
bedtime 1 Sinemet CR
If I do wake too early I will often take a half tablet of Naturesleep which are available in most stores, this usually does it for me.
I hope this may be of use to you?
Many many thanks for the details of your doses, Glen . I do get very worried about all the pills I have to take but I'm in real trouble if I'm even 20 minutes late with a doseage.