Hi Graham sorry not replied sooner only I had an appointment to see my PD nurse, when I arrived she had a mask on and her eyes were all red and runny. Two days later I had the same condition every have I felt so ill. Any way it turned out to be the flu? It is just going but me being me I wonder what I had missed on our Forum, So in answer to your question G I have to take my Madopar one hour before bed and have to take all 3 together the CR stands for slow release so they work all night? or they are supposed too. Do they work well it is now 4-29 am and I am sending you this answer, so I will leave the ball in your court. x
Hello mary1947,
Thank you for getting back to me.
I can’t understand why your nurse turned up whilst she was ill and infectious. Dedication to the job isn’t always sensible.
I’ve been told that the CR capsules start working after an hour. My daily Modopar has 100 mg lasting about 2 hours, so if the same applies to CR, then 3 capsules should last 6 hours approximately.
I spoke to my NHS consultant this week as my Madopar doses aren’t lasting as long as they used to, and tremors are affecting me during daytime and also night time sleep.
Instead of increasing my Madopar, he has prescribed Rasagiline in the hope that it will boost the effect of my existing Madopar dose.
Interesting times ahead.
Graham
Hi GPD21 sorry I did not reply sooner. You have just hit the nail on the head as I myself find that somtimes either an hour before or one hours afterwards. I find that my meds are not working as well as they should, I was also put on Rasagiline nut it did not suite me. There is a new gdruh on the market do in March when I see the PD doctor my nurse is going to be in the roomas well. so watch this space,
Graham and I go back a long way, I have had PD since 2010 and I can count on my 2 hands how many times that I have had a goods nights. sleep?
So Aquacureman What whould you recomend.???
Well, the 30 days of Rasagiline had no effect whatsoever.
On the plus side, I’m currently getting 4 hours of sleep until approx 3 am…I then take 2 capsules of Madopar CR 100mg (after usual toilet visit), and then sleep on until approx 7 am.
After the Rasagiline ran out I experimented.
Once a day for a couple of days spaced apart…I took 4 x 50/12.5 Madopar capsules…the 3 other doses that day were my usual 3 x 50/12.5 capsules.
That extra capsule made a big difference and basically did what the Rasagiline was suppposed to do.
I’ll be asking my Consultant to increase my prescription during my annual February visit.
I hear you Aidan! Same deal. Didn,'t sleep too badly for quite a while, but I am now down to 1-2 hrs a night. It’s hard to get up and do something bc I still feel tired and have.little focus, I just can’t sleep. I am reading heaps of testimonials to try and figure out an answer but everyone is so different. Hard to know where to start and yes, what is happening to our sleep deprived bodies…
Hi Dusty68. Not sure if this is helpful bc I live in Australia where we also need scripts for Melatonin AND it is hugely expensive - but I found you can order them thro the app iherb much cheaper and no script.
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I am 62 and was diagnosed with PD about 18months ago, it took me 6month to get over the shock , I started Levadopa about 3 month ago and it does seem to help with walking,
I have self medicated with cannabis for PTSD for many years,
I now get my Cannbis legally with a private prescription from Consultant Neurologist who specialty is PD, I sleep very well with Cannabis, My PD nurse asks every time if I have nightmares and hallucinations, I think the Cannabis must stop me having them.
I don’t know if I could cope with hallucinations and nightmares.
It seems to me I have hell waiting for me as it slowly progresses but hopefully the Cannabis continues to make life a bit easier
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I live in the UK and use 5-HTP which is a precursor for melatonin , I buy it from Amazon.
I have a similar problem in that I just can’t seem to get enough good quality sleep at night. On occasion I only manage four hours but fine that I am able to catch up in the afternoon which is fairly essential due to my symptoms being so much worse when tired and exhausted. So far though I have been unable to find something that helps.
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Hi Dusty, just 5 hours eh? Im lucky if I get more than an hour. The problem sounds like your meds are wearing off and you’re waking up. If you’re not taking them, you could ask your consultant to prescribe a slow release PD medication like Sinimet CR (controlled release), or I could send you a picture of two places on your ear that, when massaged, will relax and de-stress you. I could also show you a point on your wrist to enhance the relaxation. I would also suggest that you do a search on Google for a guy called ‘Lee Pulos’. An American psychologist who has produced some self help courses. Lastly, I would suggest that you avoid foods high in protein like: beans, fish, ice cream,etc.
Hope this helps.
Dave.
If you could please DaveW.
To be honest, I was prescribed CR Caramet some time ago which has helped with restless leg syndrome. I take 25mg before bed time. I will say, my sleep has improved a lot. On a good night I’ll get maybe 7 hours albeit broken sleep. Usually in bed around 10.30pm but wake around 4am ish. However, rather than needing to get out of bed due to being ‘fidgety’, I tend to roll back over and doze off until 6am ish. I’m not sure why things have improved, but I’ll take it.
Cheers
D
Hi Dusty. I have attached a picture of the two points in question. I consider them to be part of the most powerful points on the ear. They are part of NADA points (National Acupuncture Detoxification Association). I always include them when treating my grandkids or friends. OK, you can purchase an ear probe from any of the Chinese Medicine sites on eBay or Amazon. This is just a metal bar with a ball at the end BUT I have found that I can achieve the same effect with some simple ear buds, the ones that women seem to enjoy shoving into their ears. Try Point Zero first, manipulating gently at first then with a little more pressure. The longer and harder you massage these points, the more affect you will feel. Massage the other side then move onto Shen Men. This point is on a part of the ear called the ‘Triangular Fossa’ and is located under the outer rim of the ear, in this area. Same type of massage. You would push towards the head. I hope this helps you.
