Sleep

[Enidah]

I have been taking .25 mg clonazepam every night to prevent REM behavior disorder for a couple years. I also take .25 mg Xanax if I wake up at two or three or four in the morning and can't go back to sleep. My problem is I want to quit taking them and that's not a problem because I don't seem to have withdrawal symptoms from the low dosage and I can wean myself off them, but how do I get enough sleep? The benzos are not good for our memory and cognitive function, especially as we age. I can replace clonazepam with melatonin and although it's not easy, I will drop off to sleep eventually. Last night I woke up at 2 a.m. and at 5 a.m. I was still awake and finally broke down and took some Xanax. I'm feeling defeated and frustrated. I don't want to be stuck taking these things because I'd rather have as much of my mental function as possible but of course if I don't sleep I'm not mentally sharp and I just generally feel worse. I would love to hear from people who have found a way to deal with this.

[park_bear]

Valerian root works for me. Note - has bad smell before you get it down.

[Enidah in reply to park_bear]

Thank you for the reminder. I ordered some and it should be in the mail today. I'll give it a go.

[Enidah in reply to park_bear]

The valerian root came in the mail and I took 2 last night and slept much better. Didn't wake up until 6! Amazing! I never count on anything working consistently but that was pretty good. Also I used ear plugs which I think helps.

[park_bear in reply to Enidah]

Excellent!

[Cjbro2000 in reply to park_bear]

@park_bear is this valerian root in capsule form, or tea, or what? Where do you get yours?

[park_bear in reply to Cjbro2000]

Capsule form, online from any vendor.

[jeeves19]

I feel like I’m repeating myself here but Amitryptaline. Not sure if it’s called the same in US?

[Enidah in reply to jeeves19]

Thank you Jeeves. I just looked it up and reading about it it sounds like it could be a big help. Good for a lot of things. I will ask my neurologist about it when I see him.

[jeeves19 in reply to Enidah]

Not so good for the over 70s I’m told but then again neither is sleep depravation!

[Xenos in reply to Enidah]

It is. It helps me :

- against pain

- with sleep (fantastic)

- it's a candidate as a molecule able to curb or even stop progression of Parkinson's

- against depression (good)

[movinngroovin]

Xanax last a very short time. Instead, try time release Melatonin (NutriBulk) 10 mgm 2 plus CBD oil -both capsule and oil. That's my magic combo!

[Enidah in reply to movinngroovin]

I didn't realize melatonin came in time release. Thank you for info . I'll check it out. Unfortunately CBD oil causes me to be wide awake.

[Cjbro2000 in reply to movinngroovin]

Just a warning to those considering melatonin. It can be very effective, but very dangerous to anyone taking a blood thinner/anticoagulant (such as Plavix or Clopidogrel for arterial disease), as it has blood thinning properties also. So make sure your doctor knows your full medical background before making a recommendation.

[closer43]

My husband is 64 years old and has had REM Sleep Disorder since he was 52. He hasn't been diagnosed with Parkinson's but we are aware of the percentage of people who have REM Sleep Disorder that go on to develop Parkinson's.

When the REM Sleep Disorder started to get worse 4 years ago he was prescribed Clonazepam. He took this for almost a year and seemed to work pretty good. The problem was the effect the Clonazepam was having on him. He would wake up the next morning lethargic, had increasing loss of balance, and slurred speech. After a physical we were told that the Clonazepam was also affecting his kidneys and he had to get off the medicine.

The next two months were awful. We moved him to the floor surrounded by pillows. This was after he fell out of bed into the night stand and had to get stitches. He punched me in the face and the list goes on and on.

I started to research what we could do. I found out that there was a study sometime ago in which they gave Parkinson's patients in Brazil "CBD Hemp Oil". The oil is a neuroprotection and calms the brain and they started giving this to children in the US that have seizure disorders. This "CBD Hemp Oil" was created by Stanley Brothers in Colorado specifically for the seizure's. They named it "Charlotte's Web" after a little girl who suffered and medicine wasn't working.

This is sold as a dietary supplement and can be shipped anywhere in the United States. I ordered the strongest "CBD Hemp Oil" they make to try. It is costly $250.00 for a bottle that last us a month. Immediately after taking the oil the first night he was calm. After two weeks things got even better. Albeit not perfect my husband sleeps most nights. He still has episodes but not like before. He takes the oil in the afternoon and then again at 9 and 12 before he goes to bed.

He also smokes marijuana oil which helps as well. He never smoked before but we were told this helps as well. We live in Florida and they have medical marijuana which also covers this. Not sure what state you live in?

Please don't be confused by buying the "CBD Hemp Oil" they sell in the stores this is not strong enough. The "CBD Hemp Oil" we get is strong. If you have any questions please write me back. I encourage you to do research about "CBD Hemp Oil" and the brain. Just like you said being on Clonazepam for a long period of time causes so many side effects. I understand how the "REM Sleep Disorder" disrupts your life and that of your spouse or partner.

Laura

[Jenzo in reply to closer43]

Have you ever tried making tea? I do not smoke nor vape but have had great success with medical marijuana tea. It takes longer to absorb but it lasts longer so I'm sleeping full night's, not waking up and waking refreshed.

[Pants10]

My dad has REM sleep disorder and due to concerns about long term damage caused by clonazapam, he takes timed release Melatonin. He also is pretty active & he is convinced that sugar makes his head spin and enhances his RBD so tries to keep sugary foods to a minimum. Also, he has a bed alarm which triggers if you sit up & it has helped stop injuries during the night. Thanks to person who mentioned CBD oil - will look into this. All the best.

[Enidah]

2nd vote for time release melatonin, I'm going to order some. I also read that it's safe to take it with valerian root in the right dosage. I'm going to try it. Thank you both for info!

[Jenzo]

Medical marijuana - high CBD strain. Indica oil again high CBD strain low THC. Some THC is good for sleep - you don't need much. Indica bud form again lower THC take half gram ground finely, boil 3 cups water with 2 tablespoons coconut oil to make tea - boil 30 mins. This makes two servings. Set one aside for the next evening. All natural.

[SELFMeder]

Here is my two cents on PD and sleeping, which was a "nightmare" until I assembled the following routine starting about 1 hr before bedtime:

1 cap Tylenol

1time released Natrol Melatonin 5mg

1Hydroxyzine HCL 50mg (for anxiety) - prescribed by my internist MD

Then, wait until I feel drowzy ... before bedding down in the bedroom at 72 degrees F with one sheet as cover (to minimize tactile sensivity)

By that time, my wife has been asleep an hour or so and does not awake when I slide under the covers...

I usually awake refreshed 7-8 hrs later, sometimes punctuated by a mid-night bio break.

Hope some of this is helpful...

[Enidah]

Good suggestions you guys. I'm taking notes.

[Enidah]

Last night I took 500mg capsule of valerian root, 5 mg of melatonin and no clonazepam at all and slept solid 7 hours. Wonderful! I should get the time release melatonin today or tomorrow in the mail. I really appreciate all the great ideas!