PD. Sleep Issues - Any Advise

Hi. I was diagnosed with PD in June 2012 I am currently on 100/25 Co-careldopa, x3 per day, 2.62mg Mirapexin & 10mg Seligiline. My issues are that I am constantly tired. I tend to grab 4-5 hours sleep at night but wake at around 0400. I'm struggling to stay awake at work throughout the day at the computer. I'm then frustratingly failing to stay awake throughout the course of the evenings. I have been known to fall asleep at social gatherings rather embarrassingly. I regularly exercise by either cycling, jogging or yoga. Any suggestions please?

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  • I just tried cannabis and if nothing else, it makes food more enjoyable and sleep a lot longer, which are already known as its two biggest side effects.

  • Sounds interesting.

  • My dads been addicted to sleeping pills for years. Hes off them now and takes cannabis oil in a capsule every night. 6x rice grain size. Works a treat and he isn't a space cadet the next morning.

  • Yea well here is the thing about that its complicated , you are probably expecting a short quick solution to eliminate the problem and you CAN make it a lot better but um how do I say this, you and the others around you need to adapt and this can be more important than you might think. It means you can not make some things entirely go away. I suspect by the medication levels that you have not been diagnosed more than a few years. I do not know how old you are, can you start planning for early retirement. Please evaluate your driving ability and monitor it closely. You should contact your Movement Disorder Specialist and tell him. (your Neurologist is not an MDS ? Change nuro.) Some Parkinsons drugs, No most of them cause drozyness and you have to take them. There are medications that counteract some of the side effects of medications. Yes I do know how stupid that sounds. Sometimes it can come on suddenly out of the blue like at a stop light while driving. while talking to your wife siting at the table ,while standing at the top of the stairs. You need to evaluate a lot of things like do I qualify as a baby sitter any more . Is it good enough if I am the one watching out for their safety say around the pool. Should I climb that ladder and walk on the roof. The answer of course is NO. There will no doubt be lots of answers here from people who will tell you the many things that they have done to sleep better at night and they probably very much know what they are talking about and will be very help full, but you and your family may have to accept that you can not always live to suit their schedule (or the rest of the world's schedule either) and that in the middle of that family party or friends over for dinner that you have to go for a nap. They must understand that that is just the way it is and that you will be back in 20 minutes or so. Talk to doctors, try the things about to be suggested Exercise, exercise , and then more exercise. This PD is life changing , you will need to change a lot of things. You can however be happy if you have a mind to.

  • Bit early for retirement. (52). Am looking to stay working with a normal of lifestyle as much as possible. Have already had to adapt various concepts eg. Driving lòoking after grandchildren etc. Just need to sllep at night on occassions. Many thanks for your feedback.

  • Dear WJohn;

    I am learning the truth of which GymBag talks.

    And it is hard.

    I was diagnosed in 2010. I was doing just fine up until now, and now I am having to reconsider what I can and can't do. The symptoms come and go. PD is a very strange illness.

    I took myself off the road after two caraccidents. I was not going to hurt nor kill others nor myself.

    Many decisions are hard.

    I had invited a friend and her little boy to an easteregg hunt. I was having a not so good day, and had to cancel. Broke my heart!

    It all has to do with being good to yoursef!!

    This is not a life or death sentence. And after a while you begin to appreciate life in all its complexitities :)

    Go for a 5-10 min walk when you don't feel like it.

    Stay in touch with us here on this site.

    I have received so many good suggestions for dealing with symptoms from my ''parkie' friends.

    Love and hugs and good cheer to you from Eva G.

    :)

  • Hi 12stargate. Many thanks for your words. I have all but given up driving apart from short local journeys. The feedback I've received so far from people on this site is indispensable and I can't everyone enough and will for sure be staying in touch.

  • About the sleeping pattern: since diagnosed a year ago, my mother has been on Madopar 100/25, x3 per day. She started waking up at 2 or 4 in the morning -- before the medication, she was sleeping well. She has recently replaced some of the synthetic Levodopa with natural one from Mucuna Pruriens (capsules). She is still trying to work out the proportions and amount that work best for her stiffness, but there have been two visible effects sofar: less tremor, and improved sleeping. She might still wake up briefly at night, but she falls back to sleep and is regularly able to sleep until 6 or even 8 in the morning.

  • This is something I'm going to speak to my PD nurse about. Valuable advise. Many thanks.

  • Yes you have little control over your sleep patterns so use the change with sleep to your advantage. When you wake up at 4 am, get up and dressed and use this time before everyone else wakes up to do those jobs that can't easily be done later, Stuff like correspondence or organising things, or whatever you have in your in tray. Your mind will organise your sleep time automatically as it always has. Its just a different pattern that you are not familiar with. I have all this sleep trouble. Quite often only a couple of hours. Sometimes I stay up all night. So what?

  • This is what I'm generally found I'm doing now. Many thanks

  • Pete, I agree, so what? If you are not working.

    I wake up at 4 am now. I get up, and do what I enjoy. I go back to bed when i am tired again.

    But then I am retired, so I am lucky that way:)

    Love and Hugs, Eva

    :)

  • Yes indeed or any other time when you are obliged to keep to someone else's timetable.

  • Try taking magnesium at bed time.

  • Will look into this. Many thanks.

  • I urge everyone to read the magnesium miracle. Lots of good info in there.

  • In terms of possible solutions, I can only speak for myself. Like you, I was sleeping for only about 4 hours before waking up - only to feel ready to crash again a couple hours later. A tab of melatonin 10mg and a capsule of l-tryptophan 1000mg enable me to sleep a through a normal cycle.

  • Will speak to PD nurse reference this. Many thanks for your help.

  • At nite I take:

    1 25 mgm Benadryl

    1 Time Release Melatonin

    1 .5 mgm Klonopin

    2 Sleep Thru by Giam Herbs

    1 Low Dose Naltrexone

    1 500 mgm Tryptophan

    1 Tumeric for pain

    Also useful when having pain & tension is Formula 303 - it is a natural muscle relaxant

    I go daily to the gym too-sooo important!

    A mix is best I find...good luck & many blessings

    Nansy (PD for almost 20 years & still kickin')

    PS--I sleep on a Sleep Number Bed

  • Wow. That's some cocktail. Will look into this. Best wishes.

  • Selegiline can affect sleep. The advice is to take by midday.

    Agonists in particular can make you sleepy. Over time your body adjusts to some degree.

  • Thank you. I take this at 0800.

  • Wjohn as soon as you find yourself falling asleep while eg watching tv, stand up and walk around the room a few times. Have someone shout at you.

    I know what 0400 feels like. I'm there quite frequently and my tremor can be quit disturbing. I have a small walkman which I use listen to. I might switch on the light and read. (My wife sleeps in the spare room.)

    Another thing is to get up, go downstairs and have some ongoing activity like drawing or doing a jigsaw, crossword, sudoku, which I know engross me.

    I would avoid switching on the computer. I was told by my Parkindon's nurse to switch the computer off at 8.00 pm.

  • Have someone shout at you! I'd do ok there. The Mrs is an expert! I must admit I tend to switch on the computer which I shall avoid going forward. I think it's just habit. Many thanks.

  • WJohn;

    The computer is an individual thing.

    I am a computer nut!! I do my best to turn it off around 9 pm.

    But if I wake up too early, I turn it back on because I do puzzles, brain games and other thing that are nurturing like staying in touch with friends far and near.

    Experiment John.

    Hugs and love from Eva

    :)

  • Hi WJohn. I am sure that other readers of this blog are tired of hearing me tell the story that I was diagnosed with Pd in 1992, having suffered Pd symptoms since 1963. In 2002 I was able to come off all Pd medication and have lived medication free since then. I am now 80 years of age and am still walking 6 kilometres every 2nd day and, although I still have many other Pd symptoms, I am able to control most of my movements properly and I live a normal life.

    If you would like to read my story you can find it on my website - reverseparkinsons.net. My book is titled, "Reverse Parkinson's Disease". I am not a doctor but I have found a way, which costs NOTHING by which I am able to do all these things. Other than my book, I am not selling anything and don't make w living out of It. My book sales barely cover the cost of maintaining the website and posting the books.

    Good luck

    John Pepper

  • I will certainly have a read. Many thanks.

  • Hi Wjohn. I also have had sleep issues with my Pd. It is one thing I can do nothing about. I don't let it bug me, because it used to bug the hell out of me. I decided that if I could not sleep I would read or work on my computer until I got sleepy again. Most times I just stay up and continue working. Sometimes I get back to bed before 5am. But I don't let it get me down.

    Wit my late wife, who died 4 years ago, I was able to switch on the light, which did not shine in her eyes and she was able to get back to sleep.

    Now, because my new wife is unable to sleep with the light on, I just get up and put something warm on and go to my study and work. W hen I get tired again I go and lay down.

    I hope this helps.

    Kind regards

    John Pepper

  • Many thanks for sharing your experience. I'm lucky in that a search light wouldn't wake her.😊

  • Hi Wjohn. Go for it. See how it works for you.

    Do you think you will be able to stop being anxious about not sleeping?

    It is terribly important to have the right attitude with Pd. Pd must be a challenge and not the enemy. We must treat our accidents lightly and laugh about them.

    When I spill wine on somebody's clothes, it is not funny, but I try to make light of it and help the person, whose clothes I may have ruined, understand what has happened and why I have this problem. I do everything to avoid this sort of thing happening, and try not to embarrass my friends.

    We all make light of the problems and take measures to avoid them.

    Kind regards

    John

  • Your right in about staying positive about life. I don't look about having PD a massive issue in life but maybe it's because I'm in its infancy. I do consider it being a challenge as a-posed to an issue. I look upon myself being unique or privalidged which is maybe a weird outlook but it works for me. My close family & I find it amusing when I suddenly awake from a sleep on the sofa and joult whilst scaring everyone! Im good at rocking the grandchildren to sleep. Lol. I can and will put to one side any stigmas about sleepness nights and having listened & corresponded to other parkies (1st time) it has helped and somthing i have enjoyed. Maybe I'm destined to be a night owl!

    Best wishes

    John

  • Hi John. Where do you live?

    John Pepper

  • Weymouth , UK.

  • Hi John. I was born in London, before World War II. I often went to Weymouth as a teenager. I remember camping at Lulworth Cove, it has always been a fond memory of mine.

    Why I asked you, is that I am considering going to Sweden to make a video at a meeting where I will show patients how they can walk properly and bring food to their mouth without spilling it. I would have to go via England, either on the way to Sweden or on the way back. If you wanted to set up a meeting with Pd patients to see me do this, I would be happy to do so.

    Kind regards

    John

  • Hi. Thanks for the offer however this isnt something I would consider at this moment in time. Good luck with the Sweden trip.

  • C.D.Marsden provides info re-Slowness of movement in Parkinsons Disease in 1989. It is interesting. Movement disorders vol.4, suppl.1,1989,pp.S26-S37.

    I have mentioned before re.yoga and the dangers. See today's copy Daily Mail. Pilates and the position Plank. You have Parkinson's avoid extreme movements, such as side bends, backbends, forward bends etc. Please ensure you are being taught by someone who knows exactly what should be safe for you. Avoid alternate nostril breathing, Ujai.

    I was told many years ago that yoga would cure migraine, it did not, open heart surgery to repair the PFO cure that. There are different types of migraine, Please ensure you are not putting yourself at risk.

  • Take 10mg of Melatonin then a hot bath with about a half cup to a cup of Epsom Salt.. As hot as you can comfortably tolerate. Soak for around a half hour and you'll sleep like a baby.

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