PD symptoms first appeared about five years ago. Officially diagnosed last fall. Not taking any allopathic meds or mucuna so far.
My sleep is terrible, typically 3-5 hours per night. The problem is not physical stiffness or pain. Just difficulty falling asleep and staying asleep. I am not particularly stressed out or anxious.
Have tried many different angles to improve sleep, including very careful control of diet and introduction of numerous sleep aids. I have tried up to 90 mg of melatonin, GABA, tryptophan, magnesium glycinate, 200 mg of Zen and Valerian Root. No improvement.
I’ve been using HDT therapy for more than six months.
Any suggestions?
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Another possibility - which is not for everybody - is what I do - after 4-6 hours of sleep I get up and abide in divine bliss with Qigong meditation: healthunlocked.com/parkinso...
Melatonin does it for me. However I take Sinemet and I have noticed that if I skip my night dose I have hard time sleeping because if the rigidity. Is there a PD symptom that keeps you awake?
There is a particular symptom, but it is hard to describe it. I would call it the effect of inflammation. A "tingly" feeling throughout my body. It's almost always subsides after 5 AM.
Melatonin worked for me until I needed to reduce it because of daytime grogginess and low mood. I've heard it's not dose dependent regarding sleep, not sure if that's true. I now use cannabis and a smaller dose of melatonin at bedtime. Cannabis works well for a lot of people for sleep, but not everyone. Part if this is finding the right product for you. I had a consult with an excellent cannabis doc who guided me to find the preparation that works for me. If you want to go this route, I would recommend such a consult since there are many different cannabis products with different quality and effects. Glad to share the name if you pvt msg me.
I would agree with Park_Bear -- it might be time to try levodopa. Whatever the reason you're not taking it now, is it worth the effects of so little sleep? I put off trying levodopa for three years, my most bothersome symptom was depression and anxiety, which went away when I started C/L, along with my minor physical symptoms.
If you're having fear of not sleeping (I had insomnia for a long time, and it's really common to develop a fear of not sleeping that becomes a major obstacle to sleep in addition to whatever caused the insomnia in the first place), cognitive behavioral therapy for insomnia is actually very effective. You can find out a lot about it online. Worked for me, that was before PD.
It cbdMD.com I use the 300mg. They run specials often.I add a tiny bite of chocolate with THC in it. I heard it enhances the CBD, I don't know if it really makes a difference. I make the THC chocolate with weed my son grows legally. Please let me know if it the CBD helps you .Their phone number is 800 973 3984
Do you get blue daylight in the morning and have a screen filter or glasses blocking blue and green light at night. It is supposed to help. Also do you eat any sugary snacks late afternoon or evening? That always keeps me awake at night.
Sorry for your problem. I can understand your suffering. I had a very similar situation.
But, thank God, I have Mg-threonate -much superior to glycinate- and lavender oil. Both helped tremendously. Lemon balm is also useful. I sleep much better now.
I also avoid coffee and Coke in the evening.
BTW, meditation, yoga and acupuncture are said to help many to sleep better. I've had two acupuncture sessions and, yes, it led to further improvement.
Before all of these, I could only sleep with zolpidem (Ambien).
Hope one or more of them could be helpful for you.
For sure , take a total break and you see in 3 day .
If your sleep improves, you may need to take a break from time to time to make up for the excess that sometimes happens, then resume the dose as before. You will then become an expert in the use of B1.
I had terrible sleep from 36 years old till about 55. I am 60 now and sleeping like a teenager, amazingly. I feel like I am reversing my PD symptoms some. It has been a process and the solution for others may take a different path. But here is what I have done....(Note: recently, I very rarely use the top 2.)
1) I am a side sleeper, so I put an earphone in the ear that’s free. I turn on a meaningless talk show for me that is TMZLive. This is to stop my brain from looping about personal stuff.
2) I use the above method anytime I wake in the night. I fall back within minutes instead of tossing and turning and being wakeful for hours. If I want to switch sides I switch earphones quickly.
3) I worked out my meds with consult with my neuro. This has been a process and with experimentation and lots of reading. I dynamic dose following my needs and circadian rhythms. I take my first dose at 10am 2 100/25 l/c, 2 gabapentin 300mg, 2pm same, 8:30pm cut the l/c to 1&half and then 11pm same as 8:30 dose. These last two set up my sleep cycle to start at 11:30pm and waking at 8:30 to 9am.
4) Primary importance, I walk, golf or exercise at least 1 hour/ day.
5) I eliminated Azilect (rasagiline). It was the most expensive med, did very little for my symptoms and I have read many varying reports on it possibly delaying symptom progression? Some people feel this med was responsible for brain foggyness?
Everyone has their own personal journey, body type, needs and just thought I’d weigh in because I want to give you hope! This is where my journey led me and I feel like a new person! Sleep is crucial for healing! Good luck!
If I am particularly stress, I take half of a .125 Xanax half an hour before bed. But every night I apply lavender body butter has directed by Lina body butters.com. I am not affiliated with the company in anyway but it really helps me sleep.
The magnesium L threonate helps my husband sleep without legs and such jerking every few minutes as they had been before. Also, I used to use a CD player with ear buds playing a disc like Palm Springs mentioned helped her, only I had a disc which was designed for helping to sleep. I dont have access to it right now and cant remember the name but I bought the set years ago from Dr. Mercola. Praying that you can find some relief.
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