Insomnia

[Fed1000]

About seven years after diagnosis, insomnia begins to arise. In my opinion due to the difficulty in turning over and therefore finding the ideal position for falling asleep. My neurologist only prescribes sleeping pills, while I intend to try modified-Levodopa. Has anyone tried it? Did he benefit from it? Thank you very much

[Smittybear7]

Following

[Zella23]

My HWP takes an extended release Levadopa 100/25 at night to help with sleep/backache and trying to reduce dyskinesia by not going for over 12 hours without meds. He still wakes up a few times but on the whole seems less uncomfortable and the dyskinesia is reduced during the day. It’s taken a while to reach this point though. He takes 300 mgs levadopa during the day. Diagnosed 9 years.

[Fed1000 in reply to Zella23]

Thanks Zella, great information.

[Michel0220]

Hi Fed, I've had personal experience of severe insomnia, leaving me with no more than 3 to 4 hours sleep per night. I would feel very uncomfortable in bed and would be turning and tossing continuously. This was truly debilitating.

I tried various types of sleeping pills but some of them contained antihistamines that were making my symptoms worse, and those that worked could not be used in the long run because of addiction issues.

In the end I found that a combination of CBD and particularly THC, together with small doses of levodopa (25mg of regular Sinemet 2 or 3 times during the night), helped me regain control of my sleep.

The THC knocks me out and the levodopa takes care of the restlessness caused by lack of dopamine.

I still wake up briefly around three times per night, but manage to get seven hours sleep during most nights.

[Fed1000 in reply to Michel0220]

Thanks Michel, but did you bild the combination you're talking about yourself?

[Michel0220 in reply to Fed1000]

The CBD THC combination was recommended by a specialised clinic in the UK (curaleafclinic.com/) that uses medical cannabis for a variety of conditions, including Parkinsons.

Taking levodopa during the night was recommended by my neurologist. He recommended 100 mg of controlled release levodopa but I found this to be too much for me. I switched to small doses of 25 mg immediate release during the night with his approval and I found this to be effective.

This is just me sharing my personal experience and of course you should consult with your medical team.

[Fed1000 in reply to Michel0220]

Perfect Michel, I will activate with my doctor. Do you happen to be planning a further meeting with Dott. Tass?

[Michel0220 in reply to Fed1000]

Not at the moment. I had the opportunity to listen to him during a webinar for a different PD organisation and I did not detected major changes compared to what he had told us.

As soon as there is progress on his side we will be delighted to have him again.

Our next webinar in October will be on mucuna. Stay tuned for more details soon!

[Fed1000 in reply to Michel0220]

Thank you very much, very kind.

[Buckholt]

Yes CBD helped me as well. Although I avoid the cheap, weak stuff which from all accounts, doesn’t do anything

[Jmellano]

i have found the prpducts from comfortlinen.com/ To be extremely helpful. I have pajamas, contour sheets from tjem. The fabrics they use greatly reduce friction when rolling over. I glide when i turnover now. I dont dread going to bed any more.

[Fed1000 in reply to Jmellano]

Thanks, very useful information. It's a step forward. However, the problem of rigidity remains and only Levodopa solves it.

[Jmellano in reply to Fed1000]

As if we d ont. have enough things to ‘fix’

[healthabc]

I am 9 yrs in, and have had significant, awful sleep problems for the last few years. I had tried everything. But I am happy to say that since the last 2 months, I have found my sweet spot, by adding 2 macuna extract at bedtime

[Fed1000]

Thanks for the information. Unfortunately it's still Levodopa that you add to what you are already taking on the day.