Sleep

[12Maxwell3]

Does anyone get so tired and drained that by 7 or 8 pm you go to bed and go right to sleep. Then, wake up every morn between 11 and 1 am, and can't go back to sleep. I get up and play the organ, and at approx 3am go back to bed and right to sleep until 6-7 am. I know I'm going to bed early, but just can't stay awake

[aspergerian]

My pattern is much like yours.

[bcowart]

I wish! It's now 12:36 AM and I'm not the slightest bit tired. I only got about four hours of sleep last night and the night before. I wake up with tremors and depression about four hours after falling asleep take another Sinemet and wait for it to kick in. I have a hard time keeping weight on and I'm down to 120 pounds and I am a male, 64 years old and 5'10" tall. I eat like a horse. My theory is that the tremors burn off a lot of calories. Also, I am embarking on a ketogenic diet, so that may have something to do with the weight loss.

In any case, I don't tend to get tired except that about 3 o'clock in the afternoon, I can feel wiped out and will take a nap for maybe half an hour.

[aspergerian in reply to bcowart]

bcowart,

Similarity and differences. I too am often wide awake after 3-4 hours of sleep, after going to bed at ~8 pm. I don't have tremors at that time. I'm often tired soon after breakfast, and persistently through the afternoon. Methylphenidate (5 mg) before breakfast helps somewhat, usually ingested around 5 or 5:30 am with my morning L-dopa and (30-60 minutes later)100 mg amantadine with breakfast, but daytime tiredness remains.

[munrue52 in reply to bcowart]

I can relate to your life too! I have lost so much weight that about 6 years ago I was around 162 lbs. Now, the lowest I have been at the doctor's has now been 121 lbs. I am now up to 128 lbs. only because I stopped drinking those Ensure and other brand chocolate shakes because I think I was drinking too much of them and then not eating enough! I still feel and look like a skeleton! My friends tell me no you don't, but I am sure I look way too damn skinny!

[12Maxwell3 in reply to munrue52]

I am so sorry! I'm hoping to be able to drive after I see the Neurologist .. right now I can only drive short distances. We don't know why, but I can't back up at all. It's very frustrating

[asmckay]

Sleep can be hard with PD, and especially, getting good quality deep sleep so that we feel refreshed. Tremor, anxiety, challenges to the parasympathetic nervous system all make it harder. Something I think about a lot because a) I am co developer of a sleep device, and b) my ex partner and children's father has PD. May I suggest that you look at the sleep tips on my website, zeez.org.uk and email me if you would like Parkinson's specific advice. If you are interested in our device look at clips on youtube - search Zeez Pebble Linda for a clip of a lady with PD. Hope that you are and to improve it. Anna

[movinngroovin1 in reply to asmckay]

I am in he USA where can these be purchased for less money?

[bibsie in reply to asmckay]

I went to the website but I'm not familiar with the other recommendation: CBT therapy. I personally suffer from insomnia and have been using alprazolam (.5mg/nightly) because otherwise I simply never fall asleep and nothing else I've tried has worked. Thus, I'm tempted to try Zeez.

My sister suffers with rather advanced PD and her meds aren't working; most of them make her nauseous; she exercises when she can; and she naps perhaps 1 hours per day but at night she never sleeps more than 3 hours. I am so hopeful that Zeez could help.

Do you have a USA distributor? At least 35% of the people I know suffer from/with insomnia so if this works even half as well as described, the market is huge.

How does one purchase this in the US?

How does one put together a group? (My husband also has PD and we are part of two local dance and exercise PD groups.) Perhaps we could start a trial here?

[asmckay in reply to bibsie]

Hi. Thanks for this. You can buy the device form me here via paypal and I'll ship to the USA. No US distributor yet - we are not yet in full production. It is on sale / return so if you don't get a result , return. I'll give you a long enough period.

I'd love a group, formal or informal, to test it, especially if you had a friendly medic interested. And if you were able to get a group together, i'd do my best to given you a good discount. Would you like to talk? Anna

[bibsie in reply to asmckay]

Hi Anna,

I'm intrigued and, of course, probably unreasonably hopeful.

I'd like to try it and I'd definitely like to put a group together. I know a couple of people doing neuroscience researchand others who work in healthcare fields. Surely someone would be interested.

Please email me at [e-mail]..

Many thanks.

[RS313]

This is me every night

[guy1947]

I get that way,but it starts at 2/3 PM,I get so tired I can't walk using the walker,exercise makes it worse,before I was diagnosed with PD I was a trucker and it wasn't unusall to drive 16-18 hours out of 24.

[SeaThere]

Try eating some pasta (small amount) with your dinner and see if that doesn't help you sleep longer. It seems to help me- must be related to blood sugar levels at night. Just a thought for consideration.

[alexask]

I would always regularly wake up about 12:30 whatever time I went to sleep. At least you are getting a decent amount of sleep. Its waking up at 12:30 and not going back to sleep again before having to get up for work is the real pain...

Re: "playing the organ" assuming that's not a euphemism I like to think you play this:

(Toccata and Fugue in D Minor)

youtube.com/watch?v=ho9rZjl...(Not working as expected?)

Actually FWIW I think sleeplessness is a natural part of getting old, so it is best to embrace it. I have long thought that if you hark back to the tribal days there would always be some people who need to keep watch (against animals and other tribes) and it would better if it were the old guys - so if attacked they could raise the alarm and perhaps get it in the neck first.

[12Maxwell3 in reply to alexask]

I'm a church organist and that lol

[12Maxwell3 in reply to alexask]

You are too funny.. what organ did you think I meant

[Joanne_Joyce]

That is similar to my experience. I usually get 3 hours of sleep when I first go to bed. After that I sleep off and on not longer than an hour at a time and with vivid dreams. By 4 am at the latest I'm up for the day.

[12Maxwell3 in reply to Joanne_Joyce]

It is very hard.. but you have it so much worse then I do. At 4am I am able to sleep for a couple hrs. How long have you been diagnosed.

[Joanne_Joyce in reply to 12Maxwell3]

6 years now. By 3 or 4 am I feel so stiff and cramped I prefer to get up. I'm wide awake then anyway. Sometimes, like on weekends when I don't have to go to work I take a nap after breakfast. I always take an afternoon nap.

[12Maxwell3]

I'm up and really need to just chat.. anyone out there awake?

[munrue52]

OMG yes this happens to me everyday! I am usually so darn tired by like 500 or 600 pm that i just go right to bed. But, I have a hard time sleeping because I just cannot settle down. So, I take Trazodone every day or evening when i get into bed because this stuff does settle me down. Only then do I start to fall asleep anywhere from 10 min to an hour or more. Then, I am up at like between 1100 pm to around 100 am and I do try to go back to bed and sometimes this works but I will only sleep maybe a couple of hours. What I am trying to do is not take my Rytary until I absolutely have to because the earlier I take it the shorter my day will be. But I feel like a night owl and I have tried to stay awake longer, but I am usually so shaky by this time because of all of the Rytary that I have to take during the day. And I suppose because of the PD that the only thing that is comfortable for me to do at that point is just get into bed. I hope this makes sense! I have also had PD for 16 years and I hope to have my DBS surgery about one month from now!

[weekapaw]

Hi,

Fatigue &PD go together. For about 6 or more years before I was dxed (4 years ago) I would get bone crushing tired. Now that I know what I have, and I do exercise a great deal, I still get exhausted. Best thing I can recommend is take a nap, and if you have a dog, curl up with him. he will love it.