insomnia/sleep
 

I am asking for some help for a friend who, as well as my husband, has Parkinsons His symptoms although similar to my husband, in some ways differ in others.For six years my friend has had no more than four hours sleep a night and frequently gone three successive nights without any sleep at all. He was diagnosed with 'parkinson's two and a half years ago and it appears that his insomnia is one of the symptoms, the other main one being a right sided tremor. Up to now he has elected not to take any medication from the doctor for his Parkinson's but is now seriously considering starting it OR the alternative Mucuna Pruriens in the hope this will improve his insomnia and lessen his tremor. Has anyone else had similar symptoms to his and experienced significant improvements through taking allopathic medications or Mucuna Pruriens? Does anyone have any advice regarding the insomnia.

my experience
 

I am nearly 4 years after diagnosis. I had sleep problems about 2 years back which was due to right arm stiffness. After some search I sarted taking magnesium, melatonin and velarion root before sleep which I found helpful and I continue taking them up to now.
But what was more helpful: exercise. I do 45 mins twice a day ..very strict regime of yoga, taichi and home padelling. This almost solved the stiffness problem which in turn made my sleep much better.
I still have the annoying tremor! most difficult to resolve :(
I wish your friend sound sleep
Imad

making informed decisions.......
 

Hello ECD,
You ask about medications and/or alternatives and their effect on inability to sleep associated with Parkinsons. Obviously I am unable to offer anything as medical advice, but can anecdotally tell you of my experience of going onto medication.

Prior to diagnosis I was freelancing and handling many projects at the same time, probably more than I should sensibly have taken on, and I was able to handle it all for more than a few years with very little sleep, on average about 4 hours per night, but often going two or three nights without sleep.

Despite the fact that health wise I was really deteriorating, two things made me think I was better off than I was - my muscles felt tight and toned, and I had this phenomenal ability to stay awake. As I had loads of work this felt like a real bonus. Away from my computer I was a wreck, very slow, and in a lot of difficulty.

Once on l-dopa this ability to stay awake for long periods of time disappeared and revealed itself to be what it actually was, a symptom of PD.

I believe that this kind chronic inability to sleep must be damaging to our dodgy neurons. Though I often 'feel' better on less sleep, objectively I just get so tired I grind to a halt, and am simply awake doing nothing that justifies not sleeping.... Practically this feeling better without sleep does not translate, I no longer am able to go 2 and 3 days without, though occasionally I do miss a night. I have always treated insomnia as 'extra time' rather than seeing it as a problem, I am not sure whether this is a good or bad thing!

Medications did not 'cure' insomnia, they just brought it into a more normal range. I am still nocturnal, but do get enough sleep.

If it is a conscious choice not to take medication, then it is difficult to reverse that decision, but it may well be time to think about it, if sleep has become such a concern. It is a matter of deciding on balance what is best for the here and now, rather than relying on what WAS a best decision in the past.

I wish your friend good luck either way. If I had known about mucuna at the right time, I would probably have tried it, or an alternative that included it, as it is I knew nothing about PD, and went with the decisions my doctors made for me. Your friend may have more knowledge than I had - if not then now is the time to find out more....

Best wishes
Lindy

Help for sleep
 

I used to be a world class 10 hour a night sleeper but since PD, I am a 4 hour at a time sleeper. Nothing seems to fix the problem completely but, I have found a few things that help. I bought an over the counter Ibuprophin PM. The PM part is Benadryl. The instructions say to take two, but I only take one. It seems to get me a couple of extra hours of sleep without being groggy in the morning as I was when I tried prescription sleeping pills. I got a memory foam 4" topper for my bed. I got extra pillows to prop up sore and stiff joints. I got an air purifier for my bedroom. Lastly, I examined my bedclothes. I found that certain styles of bedclothes seemed to get uncomfortably balled up as I tossed and turned, causing me to wake up. Everyone to his own choice but, I found that sleeping without bedclothes was the best for me.
Finally, I must say that there is no doubt in my mind that stress is a huge factor. All I can say is that when I am on vacation in a peaceful place, I get a great night's sleep.

Thanks
 

Thank you for your answers. Do you think that any of the medications such as Madopar or Sinemet or any of the agonists have made any difference to your sleep,or lack of it?

When I was on Mirapex, I was so compulsive that I would wake up at 2:30 and HAVE TO do needlework. I couldn't stop, so I was getting about 3-4 hours of sleep per night. When I switched to ReQuip XL some of the compulsion slowed down but I was still only getting 4-5 hours per night. Then I was diagnosed with REM sleep behavior disorder and given .5 mg. of Clonazepam. I have 7-8 hours of sleep each night now and no horrid dreams. The REM stuff was scary and even dangerous.

I hear ya!
 

One word: KLONOPIN

Thank you
 

Thank you everyone.There has been some very helpful replies.will now reaearch REM sleep disorders. Already on Wikapedia I see it is associated with Parkinson's. Barbara

another vote for benadryl
 

a single benadryl works wonders for me. and the generic form is very inexpensive. if i wake up during the night my tremor is very mild, and i can usually fall back to sleep quickly. plus it doesn't seem to interfere with rem.

jon

mirapex and insomnia
 

When i was on Mirapex, my sleep patterns or lack there of were very similar to what you mentioned. I could go without sleep for a couple days. I just got off Mirapex and switched to Requip XL. I see a major change in my sleep patterns. It is so wonderful to feel sleepy and actually sleep for 5-6hrs every night. Mirapex-induced insomnia and other compulsive behaviors are almost gone within a month of switching to Requip. However, does anyone know what Requip XL is capable of doing????

Girija