Night

[Teafor22]

Hi. Why after 4pm it’s the hardest. During day is fine. Night time hard.

Sick of it

Dot

[e-mail]

[bassofspades]

Exactly the opposite for me. Im worst in the am. Perfectly fine after about 2pm. Best in the evening and through the night. No idea why.

[Teafor22 in reply to bassofspades]

Hi. I feel something come over me and it’s my legs

It comes too

You think I nuts

Dot

[Donzim in reply to Teafor22]

No you are not nuts. Everybody has a body rhythm.. some are up early in the day and down later. Others the opposite. My husband started down about 3:30-4 in the late afternoon. He did this most of his life but because he was healthy before PD, he just kept going. It was his adrenal function which affected his thyroid function which affected his glucose function and on and on. Don’t know which cane first but they are all connected. We had to go to a naturopath to get his cortisol tested and tracked. A spit test 4x during the day.The 4 pm tim e was the time cortisol dropped. Cortisol is what makes adrenals work It’s supposed to be high on waking up and start gradually during the day in preparation for sleep but his just crashed in mid afternoon...exactly the time he had sinking spells. He was given supplements and it helped keep him healthy aside from the PD. You have to keep every system going...not everything is PD but PD causes a lot of things to go wrong. And things that are already wrong get worse.

He took AdrenoVive to help reset his system. It a PD cure but it helped. If your legs are getting heavy, your body has run out of energy. You might try using coconut oil for energy. Start small and work up to 2 T beginning when you get up and every four hours after. Don’t put it in the fridge. Keep at room temp. Put a little in a paper cup and stick in microwave for just a few seconds...just til it melts...you don’t want it hot. Down the hatch. Don’t try to mix it with anything cold..it gets like a rock you could put it in warm applesauce or oatmeal.

Hope this helps.

[Bridielena in reply to bassofspades]

Do you take Meds through the night..?

My nights are hell. Can’t move once in bed.....I mean it’s extremly difficult. I fall asleep easily but wake about 1.30 ......it varies but once awake I simply have to get up.....takes everything I have just to move legs from under the sheets then heave my torso over until feet hit the floor, hanging onto walls shuffle my way to bathroom. Then shuffle my way again to chair in sitting room hanging onto walking frame. Usually fall asleep again for 2/3 hours wait till 5.30/6.00 to begin my Meds. They take roughly 45 mins to kick in and so it goes/went.

45 hours ago I had my first shot of Byetta......once a week injection into stomach.....no problem......pharmacist helped . Not sure if I can do it myself as it has to be mixed by shaking module for a long time.....I ran out of steam so he took over. Once injected count to 10 and remove.

I have to say I have been ‘on’ much longer than before starting Byetta.......6 hours between doses.......less Dyskenesia.....which was so uncomfortable.

It’s not on the PBS scheme here in Australia so I have to pay $x for it.......my Neurologist said ‘go for it’ so I did and can’t believe the outcome so quickly.

We weren’t sure if it was going to work even.....probably a bit more nausea but that should abate the longer I’m on it. I believe it’s being trialed in the US for PD.

I need to plan the timing of Meds so that my last dose is closer to

bedtime which should then give me the best rest in years.

This is my PD story which started 2005 and wish it could be yours.

[Bailey_Texas in reply to Bridielena]

I take meds 24/7 every 4 hours. It works great for me. I have had PD for 12 years.

[Teafor22 in reply to Bailey_Texas]

Hi. You take meds 24/7. What’s the time schedule please e mail me [e-mail].

[GymBag]

See a medical doctor

[Cbgs]

My day yesterday after I was up 2:30am-6 am the previous night

Keep in mind I work so I was pretty much off all day yesterday ....

ER Cl = ext rls c/l 50/200

Ir Cl = immediate rls c/l 25/100

Friday 10/20: bad day !

5:15 am ER Cl

8:46 ir Cl

11:06 ER Cl ... finally on 1:25 smh

3:01 ER Cl ... 5:20 still off

5:45 on..6:15 neck is killin me from meds

7:30 neck is better:.. usual foot & upper body movements

8 wearing off has begun

8:15 ir Cl

9:30 sore neck ... some movement

2 hits CBD

10 heating pad on neck in bed

10:05 best I've felt all day

10:20 uncomfortable sitting in bed

Feet feel hot , toes feel thick , hard to move

10:49 lower back aching

10:52 1/2 ir Cl

11:30 melatonin & cortisol quiet

11:40 can not lay down

Can not move

I hate this !!

I hate the way I feel

11:50 10 minutes @ 2.5 mph on tread mill

Pelvis lifts

Stretches

12:30 ice-packing

Sitting & stretching neck

Falling asleep

12:40 Gonna go to bed 🙏🏻

10/21

Up at 4,6, 6:41

Pramipexole 7:15

And that's how my nights go....

[Maxkas in reply to Cbgs]

Hi I take mega magnesium for pd neck pain

[Pelley]

I've (meaning my body ) has become accustomed to taking meds 24/7 many years ago. Automatically wake up at 3AM for sinimet. If for some very unusual reason I sleep thru that dosage, I pay hell for it the next morning. It is sometimes hard to get back to sleep so I just stay up those times...... At this point it's a small price to pay to keep functioning as well as I am. 11 years and counting since dx. dBS has helped considerably. There are a lot of snake oil salesmen and the world is full of smoke and mirrors.

[Teafor22 in reply to Pelley]

Hi. What your time schedule

[Teafor22 in reply to Pelley]

What dbs? What do. E mail me. Teafor22 @msn.com

[Teafor22 in reply to Pelley]

What your time schedule

[rhyspeace12 in reply to Pelley]

My husband has started taking Sinemet ER (generic) ER stands for extended released. It is released into his system all night long so he doesn't run out in the middle of the night.. He takes his regular Sinemet during the day as needed. This is helping him sleep better as his body clock is a mess.

[Teafor22 in reply to rhyspeace12]

Hi. I take sinemet 8. 12 5 10 3

I need it or I get very sick

[rhyspeace12 in reply to Teafor22]

The nice part for you is that with an ER release that 10pm and 3am dose are automatically covered, it might even last until 8am. You can take doses of regular if you feel being sick coming on. My husband gets very agitated without his doses given correctly and this is working well from around 8 pm to 7 am with the Extended release. You can actually take one ER in the morning when you get up, and one before you go to bed, and a little regular Sinemet during the day if there is off time between doses.

He's been on Sinemet for at least 5 years, and until last week, the neurologist never even mentioned there was an ER version.

[Teafor22 in reply to rhyspeace12]

Hi. I was told it for people who has pd really bad. Told it can get use too and don’t work

So confused

Dot

[Teafor22 in reply to Teafor22]

What is he schedule for taking pills. I am 8am. 12pm 5pm 10am 3am

[rhyspeace12 in reply to Teafor22]

We have heard that too, but, it has never stopped working for my husband over the last 5 years. It is better to take it until it could possibly stop working, than to go without help , when you still could have a better quality of life NOW. Now, rather than that day when it could possibly stop working.Don't put off Sinemet now thinking that will help you need less of it in the future

[mollybrowe in reply to Pelley]

DO YOU TAKE MEDS EVERY 4 HOURS? 6 OR 8 HOURS?

[Teafor22 in reply to mollybrowe]

8am. 1230pm. 5pm. 10pm. 3am. Hi

[Teafor22 in reply to Teafor22]

Half and three fourths works for me

[Teafor22 in reply to Teafor22]

C/d

[Bailey_Texas]

Hello Teafor22

How long have you had PD. I was having bad nights mostly sadness and depression. For 9 years i was taking AZILECT and i stopped taking it and my nights got better no more sadness and depression. What meds are you taking how much and when every one has differant reactions to them. Are you getting any exercise it is a must that you do it helps alot.

[Teafor22 in reply to Bailey_Texas]

Hi. Since. June. I take c/l half pill and 3/4ths. Yes walk mall. Or outside. My hours are 8. 1230 5. 10. 3. My Doctor tired. Of me. Which talk to some one one to one on phone. Any ideas?

[Bailey_Texas in reply to Teafor22]

What country and language do you speak

[Beverly2017]

You probably need some dopamine. Try a macuna puriens capsule.