PD sucks

[reefeye]

PD suspected by GP in November 2022. Confirmed by neurologist in January 2023. Tried different meds - now on rotigotine patches plus after research, I now take mucuna morning and afternoon. Supposed to provide 240mg L-Dopa each day. It helps with constipation.

What bothers me most is poor sleeping and aches through out my body, which fortunately does not occur often. Take pregabalin if bad. Find the best thing is to go to gym and have strong workout.

I take OTC sleep aid - it sort of helps. If anyone could tell me their experiences with getting good sleep, I would appreciate.

[Gymsack]

Good sleep ? No not really ,

For much of the last 20 years I go to bed around 10pm sleep about 3 hours then get up take a couple Leva Dopa have a pee maybe have a coffee and a bran muffin and look at this web site . Within two hours I am back in bed for 3 more hrs until 6 am take my first dose of the day and then I will nap if possible at 2 or 3 pm for an hour. If there is no opportunity to nap then I am exhausted . Repeat above

I find sleep aid medication just make matters worse. The world does not like me being on a different schedule from them . I live the way I can , and that is all I can do, close relatives and friends know that.

As they tell you at boot camp : If you dont have to march stand, If you dont have to stand then sit, If you dont have to sit then sleep. Be rested, ready and able at any time. If you are exhausted it is your own fault.

[pdpatient in reply to Gymsack]

Gymsack, well done and well said! I do something similar and I am happy so far also 😂😂

[Boscoejean]

tryptophan might be helpful with regard to sleep

[Boscoejean]

article suggests helpful supplements for pain but probably a good idea to make sure they don't conflict with the medication

utswmed.org/medblog/supplem...

"Does tart cherry interact with any medications?

Tart cherry juice may interact with some medications. For example, medications used to control blood pressure and cholesterol levels. Speak to your healthcare provider if you are concerned about medication interactions with tart cherry juice."

[pdpatient in reply to Boscoejean]

Maybe something to do with the tartness. Grapefruit juice is usually pretty much a no no for sure.

[Esperanto in reply to pdpatient]

That depends on the medication. For C/L grapefruit juice even highly recommended.

[LAJ12345]

melatonin try 3 or 5 mg. Natures bounty works.

[Hidden]

Regular strong exercise is the best thing you can do for yourself, help slow progression of PD.

[jeffmayer]

Firstly I believe exercise is the. best medicine and a positive attitude I am 10yesrs in you just having back

[Cherub-]

Hi, my husband was diagnosed May 22, he has found Magnesium L Threonate tablets help with his sleep and brain fog… He also exercises regularly, gym 3 times a week, cycling once a week, tai chi, Parkinson’s group table tennis and boxing, I think exercise is the key as it also lifts his mood. One thing that does keep him awake is restless legs so he tries to do some light exercise when he feels that coming on.. all the best and I hope you find a solution that suits you and try to remain positive

[TsaarPeter in reply to Cherub-]

for restless legs I use

Clonazepam 0,5mg tablet

Commonly known as: Rivotril

Take 1 tablet orally at night. 0.5 - 1 tablet at night against acting out

[Cherub- in reply to TsaarPeter]

Thank you I will get him to see about getting some, do you need it on prescription?

[PDsux_10]

Melatonin works for my husband and yeah PD does suck!

[Missy0202]

I found the anxiety associated with the diagnoses interrupted my sleep more than anything. In time, that should settle down. For sleep my regime is Magnesium L Threonate, CBD oil and time released Melatonin. 3-6mg does the trick if you wake in the middle of the night and can't fall back to sleep

[Dabaa]

Would you be willing to share more detail about how and when you take Mucuna, please? (I bought the British Supplements two a day but right now nothing seems to slow my increasing left-side tremor. I stopped C/L altogether, no benefit just worsening tremor.) For sleep, install f.lux or similar on your computer to gradually filter out blue light incrementally after dusk, install white noise (wind, waves, rain etc) generator app 'A Soft Murmur' on your phone and run it at low volume when you go to bed. Half an hour before turning in, take Magnesium-L-Threonate, melatonin precursor 5HTP and Lion's Mane. Get a black-out sleep mask for a fiver or so from Amazon and finally massage your mastoid process for a minute or so - works for me and others. Oh, and get on your knees and pray the Lord's Prayer - a clean conscience is the best soporific of them all. GBY.

[Daffy1]

I use THC Free CBD Oil, one eye dropper full when I retire for the night & have a restfull full night's sleep,. Currently using Extra Strength Full Spectrum 3000mg CBD Oil from Butler Hemp in Wichita, KS.

[koshca]

Gabapentin 600 mg + THC 10 mg

[Ctime]

It might be worth getting a sleep study to make sure you don't have central apnea. I use a CPAP, melatonin, magnesium lots of outdoor exercise and occasionally CBD (for stress).

I got through phases where everything is dialed and I get several weeks of GREAT sleep and then for whatever reason things fall apart and I have to tweak things and hopefully reset.