Sharing my recent journey with Parkinson's-induced insomnia

[Michel0220]

Hello everyone,

Parkinson's-induced insomnia is a very common problem. I just wanted to share my recent experience, in the hope that it might help others

I was diagnosed 4 years ago (symptomatic for 6 years) and, until recently, I would wake up a few times at night, but a few mg of melatonin would help me fall back asleep.

Lately, though, I've been struggling to sleep for hours after waking up in the middle of the night. This limited my sleep to just 2-4 hours per night, which led to a substantial worsening of my symptoms.

I tried higher doses of melatonin (10 and even 20mg), but no luck.

My neurologist suggested 100mg controlled-release levodopa, but it made me too hyperactive.

Next, my GP prescribed various sleeping pills, but some of them worsened my symptoms (they contained antihistamines) while others could only be used for a few weeks maximum.

Finally, I found relief at a specialized clinic with CBD and THC oils (medical marijuana has been legal in the UK since 2018). Combined with taking very low doses of levodopa during the night (25mg), my sleep, and my symptoms, have now improved significantly!

[SusanRenee]

Thank you. May need to pursue this soon.

[gaga1958]

wish we could get the name of your product and take it to a different dispensary and get it, but it doesn't work like that. we all have to hunt and peck on our own.

[Michel0220 in reply to gaga1958]

For those based in the UK, it is Curaleaf Clinic. They also have a pharmacy that has the same name. I was prescribed CBD and THC.

[TanteJ in reply to Michel0220]

I, too, found CBD oil prescribed by Curaleaf Clinic to be beneficial in helping with anxiety and PD related insomnia. Even though I had a discounted price via Drug Science’s T21 project, I struggled to afford it and reluctantly stopped using it. (Drug Science was founded by Professor David Nutt as a science-led drugs charity which allows patients to access certain qualifying medical cannabis products at a discounted price while collecting data to build up evidence on the effects of Cannabis-Based Medicinal Products. Drug Science used the data from T21 to provide evidence for NHS funding of medical cannabis treatment.) drugscience.org.uk/t21/

I think T21 is still operational (at least I hope so!).

Now I have a lot of excruciating pain that I know would be helped by CBD/THC but again cost is the only barrier.

[Michel0220 in reply to TanteJ]

I’m very sorry about this. I paid £80 for 2 10ml bottles of CBD and THC when I started. This lasted me 20 days based on my current consumption. I just now paid £80 for a larger 30ml bottle of THC. I agree this not cheap (but cheaper than agonist patches for instance…).

I wish you all the best and hope you find a way to manage your symptoms.

[Happy21a in reply to Michel0220]

ThAnk you very much for that x

[Oceanflow]

Hello Michel, What perfect timing for your post because I’m going mad trying to figure out how to get my sleep back! Besides constipation, this is my biggest problem in Parkyland. I, too, have tried various things that have not succeeded that seem to work for others on this form. For example, melatonin makes me feel like I’ve had 3 cups of espresso coffee. I don’t understand why my body is so different! Do you by chance know what percentage of THC versus CBD is in the formula that you use?

[Michel0220 in reply to Oceanflow]

Sure. I am currently taking 2 x 0.2ml CBD and once 0.5 THC each day. I am planning to increase it slightly over the next few weeks.

Please private message me your email address and I can send you a copy of the labels.

[djresd in reply to Oceanflow]

FYI,My PD partner wife has started taking magnesium glycinate for her constipation and adds Colace and Senna when necessary. The magnesium has made a dramatic difference. Unfortunately she is hypersensitive to THC.

[Hidden]

Michael, we live near a CURALEAF dispensary. My husband has insomnia at times , I’ve hesitated giving him CBD or THC . I’m wondering if it affects your balance at all ? Our neuro has prescribed a sleeping pill which works most of the time, but I’d prefer to use CBD/THC. Can you tell me the brand name?

[Michel0220 in reply to Hidden]

Hi Finn. It does affect my balance if I get up in the middle of the night so you are raising an important point. The oils I am using are Curaleaf branded.

[MarionP in reply to Hidden]

Hi Finn, what's the name and dose of the sleeping pill?

[Hidden in reply to MarionP]

Temazapam 15 mg cap.

[Righteousness]

That's quite interesting, a lady on the Michael j fox buddy network told me that magnesium done exactly the thing

[Righteousness in reply to Righteousness]

Opps same thing

[freefallmode]

Hi Michel. Thanks for sharing that.In case it can help anyone else I found for me that any amount of coffee during the day wakes me up for hours at night. Even 1 espresso early morning will have an effect up to 20 hours later. So does dark chocolate.I get away with a mug of decaf but no more (yes even decaf has a small amount of caffeine too.)

Stopping coffee also almost completely eliminated my levodopa-induced dyskinesias.

My neurologist was amazed.

[LindaP50 in reply to freefallmode]

Very interesting!

[Michel0220 in reply to freefallmode]

That's really good to know, thank you very much for sharing.

[MarionP in reply to freefallmode]

This part of what you said I thought was worth repeating, for what it's worth: "Stopping coffee also almost completely eliminated my levodopa-induced dyskinesias."

[Chillla in reply to freefallmode]

My hand stopped shaking quite a few years ago and I never could figure out how that happened. I'm most grateful of course. Now that you mention it I did quit drinking the one cup of decaffeinated I used to have in the morning. Seems rather minimal but perhaps it's significant.

[jeeves19]

I’m fine on Mirtazapine 15mg evrry night.

[BeedieBird]

I'm surprised the antihistamines worsened your symptoms. They help mine. I'll take an occasional Benadryl at night to help me sleep if I have issues. I have a fast COMT gene. Antihistamines slow it down. I think similar action to entacapone which is a COMT inhibitor.

[Michel0220 in reply to BeedieBird]

There is quite a bit of research on the web on this with some research pointing at potential benefits of antihistamines (e.g. diphenhydramine) for PD patients and other articles (e.g. from APDA) claiming that antihistamines are associated to an increased risk of blurred vision, confusion, constipation, urinary retention, and dry mouth. I guess it probably depends on which ones and what doses.

[MarionP]

I've done well with diphenhydramine (benadryl). We have somebody who does well with mirtazapine. Another does well with avoiding coffee. My neurologist suggested quetiapine (Seroquel). Those who can get CBD and/or THC seem to get benefit. Melatonin help not at all 8n my case.

Has anyone tried CBD edibles with the very miniscule amount of THC extracted from hemp rather than marijuana? That's all we can get without a doctor prescription in our state and many states. Production is not quality controlled, but available by mail/online order, whereas we cannot get actual marijuana for the higher doses of CBD or THC. These are like the commercial brands you buy from Cheech and Chong or Woody Harrelson's brother (yes for real but I have never tried to get any of that stuff but I'm curious about it, mostly I use Benadryl but as some have mentioned antihistamines are associated with contributing to dementia over time). But from what I know those too are very expensive.

[mk2002wi]

I had trouble with vivid dreams with physical manifestation and waking many times during the night. I started taking Hemp derived THC gummies, 15mg and that has improved sleep and brought my dreams back to normal.

[Metalovinshaker13]

@Mirapex works for me. I was off of it for a few months due to insurance changes and I couldn't sleep for almost 5 days, with horrible anxiety! Went back on it and back to original sleep cycle almost immediately

[Prakash1]

I have the same issue, I start off sleeping very well, but while changing sides I wake up and am up for a long time. NEED HELP !!

[1LittleWillow]

I use 10 mg indica THC edibles for sleep. They work very well. I've tried many other things, but nothing else has helped significantly. Without them, I usually go a couple of days with no sleep at all, then I'll sleep 3-4 hours in one night, then back to no sleep again.

[Godourtruehealer in reply to 1LittleWillow]

May I ask which brand it is from? And does THC not result in dry mouth?

[1LittleWillow in reply to Godourtruehealer]

I just buy whatever brand of indica edibles they have in stock at the store. They all work the same for me. The only thing I have to avoid is artificial sweeteners. I'm extremely sensitive to those, and unfortunately many brands of edibles contain them.

I do get dry mouth but it's not that bad.

[Gallowglass]

do you get the munchies?

[1LittleWillow in reply to Gallowglass]

Lol occasionally yes, but I'm too sleepy to get up and eat something. I think I'm usually asleep before the munchies hit. 😅

[Michel0220]

No, I don’t.

[realk]

I have also good experience with warm milk with curcuma and honey before sleeping..

[CuriousMe12]

Hì Michael I was talking to a naturalist supplier of CBD. His product was twice as expensive as for the same size bottle from the supermarket.

He claimed the supermarket stuff was inferior as it's produced in a lab whereas his was produced from original leaf. Do you have a view on this?

[Michel0220 in reply to CuriousMe12]

Hello CuriousMe

I cannot say for sure, but I would not be surprised if that was the case. My limited experience of CBD oil until recently was that it was ineffective and expensive, but that was with CBD that I had been buying via traditional online platforms.

The CBD/THC oil that I have been using now is not available without prescription, and is something entirely different (and I am happy to report that I have just had the best night sleep for a long time!).

Still, I would rather go through a well established clinic and pharmacy than use the services of an “independent producer”.

[MarionP in reply to CuriousMe12]

Trial each for a week and then you decide as it applies to your own body. Put a few days in between trials so you can clear it out of your adipose tissue. Then reverse the order and trial each another week once again. Keep a written record of your result for each night (make daily entry every morning-after... And if you want to see if there's any carryover effect, make an additional entry every afternoon).

[NRyan]

I listened to a podcast where they talked about celebrating insomnia. This means to look at it with the same peace and enjoyment as every other present moment you have. I was looking at it as something negative and to avoid. I have realized it is the perfect time to meditate. Monks can go days without sleeping as meditation can provide relaxation/rest of the brain as well. Plus you get to work on your posture. win/win!

[MarionP in reply to NRyan]

Yes and that is in respect of the tendency for older people to sleep less and less as they get older, and the idea that they sleep less because they need less.. so sometimes being upset about it is really the problem and you just have been talking yourself into thinking that you are deficient and need more sleep, when maybe it's your mindset that needs to adjust to needing less sleep as you get older, which you can resolve by finding things to do and realize that maybe it's really a gift. That's the approach of this anyway. I don't think it's wrong, it's one of the reasons we naturally produce less melatonin for example as we age.

Also there is something to be said for sleeping and napping during the day which can make it a little harder to sleep at night...if it applies in your case.

My FP often asks how much sleep I get, All things considered... If I answer six then he is not concerned. If I qualify it that I don't get six all at one time but I probably get six to eight in a 24-hour period, then he is also fine. For me, if I am able to do that and in the process have some REM sleep and have some non-rem sleep, I am satisfied, and if I can't sleep I find something to do until I fall asleep or ready to sleep.

[scotta]

Thank you for your post, Michel. I have also been struggling with insomnia. I read a book by Eric Ahlskog of the Mayo Clinic where he suggests levodopa doses at bedtime for better sleep, but I have never been able to make it work for me. Can you tell me when you are taking your 25 mg dose of levodopa and what other doses of levodopa you take during the day?

[Michel0220 in reply to scotta]

Hi Scotta

I take 75mg Sinemet at 7am, 50 at 11am, 75 at 3pm and 75 at 7pm or slightly later (depending on what time I have dinner).

In addition to this , I tend to take 2 times 25mg Sinemet when I wake up at night. It is not so much that levodopa makes me sleep (I dont think it does) but small doses during the night help keep my symptoms under control and help me be more comfortable in bed.

Together with CBD and THC, this has helped me overcome insomnia (for now at least).

Of course, I can’t guarantee that this will work for everyone, but it has been very helpful to me.

[scotta in reply to Michel0220]

Thanks, Michel. Your levodopa dose per day is similar to mine, except over 4 doses instead of my 3 doses. I'll try that in case it helps, if not for insomnia, then maybe the lower doses will help my dyskinesia.

Scott

[Michel0220 in reply to scotta]

Thank you Scott. I hope it helps you.

[MarionP in reply to scotta]

Hi, I did a comment just above and maybe that is of relevance too.

[Propertytyphoon]

Michel, is it true that since taking it, you have grown dreadlocks and now listen to a lot of Bob Marley 😉🙂

[Michel0220]

… yes, there are mild side effects… 😅😅😅

[ZebraDoodle]

Hi Michel, any advice on getting melatonin in the UK please ? Thanks

[Michel0220]

Hi Zebra, I am using carelineage.com/

Regards

Michel