For nine years I have suffered horrendous insomnia, relieved only by Zopiclone, Temazepam, Phenegan and Amitriptyline (not all at once I hasten to add!). It was akin to torture. Having Parkinson's some people would have you believe that you can do nothing about it. Whilst I do not get 6 to 8 hours sleep a night, I achieve 4 hours which an adequate amount and together with an afternoon nap can function OK. In my opinion, it is not the number of hours you sleep but the quality of what get that is important. Also, I have eliminated, entirely, the sleep medications which whilst giving me sleep I did not feel well when taking them.
How did I do it? Well I used cognitive behavioural therapy, which sounds grand, but you do have to be consistent. There are one or two other things that I will gladly write about if I get asked questions. I will stop there as I do not want this blog to be too long and put people off reading it...............
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Norton1
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Norton, my sleep problems are due to slight addiction to being on line.
However I am fascinated and pleased that you have had such success. As well as the technique you used do you think the sense of being active and taking charge had an additional positive effect? Look forward to the next installment.
Hello Hikoi, thank you for your response. Yes, I do believe that being online till late at night has a stimulating effect. Why not draw a line and make a firm rule to stop surfing at 9pm and keep rigidly to it? In answer to your second point, in my opinion your body needs routine; why not give that? I go to bed at 11.30pm and get up at 6am seven days a week. It was this regime that improved my sleep around, even though I do not get as much as some people, but it is a lot better than before when I have gone three days without any sleep at all. The clincher for me was that getting up at 6am makes me tired later at night and can get to sleep fairly quickly. Also, there is something rather pleasant in getting up early, making myself a cup of tea and reading quietly before going for a walk at 7am. I love my routine now and clearly my body does too.
I seem to remember that you were a nurse. If that is true, it probably meant that you worked irregular hours which contributed to where you are now with your sleep. It has taken me a long time to realise that virtually everything is cyclical and your body's need for routine is important. I believe if you get and maintain a routine such as I have suggested, you will be giving your body what it needs. Do you follow any particular diet?
I found your initial post fascinating and was going to follow it up (as a Zopiclone addict) but your response to Norton gave so many answers and has inspired me to kick this particular dependency - I too love the early mornings (today is a particularly beautiful one with frost on the ground)
One question though if I may - did you choose a particular period in your life to start kicking the Zopiclone? I had been thinking of trying it when we go to Spain for 4 weeks this June / July but without your Post I doubt if I would have the nerve
Hello froggatt55, Norton here. I am confused as to who you were actually addressing your post above to, anyway, since I posted the blog initially, I decided to reply.
Firstly, I think it is a great intention to kick the sleeping tablet into touch, but until you put it into practice that is all it will be, an intention. Unless there is a prevailing reason to wait until you go to Spain in June/July, why wait until then? As I see it, this thread will be long gone by then and you may not have us around at that time to encourage you and answer any questions you may have. Whenever you start the CBT it is essential that you ask your GP for advice on how to come off the Zopiclone and remember that during the withdrawal you are likely to experience a 'rebound effect', but stick to your guns and follow through, for it is worth it. It is worth repeating that initially, at least, you need to stick rigidly to the routine of going to bed late, getting up and out of bed early. This must be done for seven days a week for several weeks. May I suggest you read all the posts in this thread to get an overview of all that it entails? I hope that you achieve genuine, natural sleep whenever you try it out and please remember, we are here to support and encourage you if needs be.
Thanks Norton - the post was for you, thanks for replying. As regards my delaying, I'll try my excuse on you!
I have so many commitments each week that I dread to think what I may be like in the first few weeks of reducing / coming off Zopiclone (for example, I did not sleep last night because my partner was in such pain with sickness etc, that I had to call the Out of Hours GP Service at 04,30 this morning - I feel and act like a zombie today)
My thinking was that we are planning a relaxing 4 weeks in a remote mountain villa with a pool so I have no commitments to worry about
Thank you for getting back to me. I hope your good lady is feeling better today and that you emerge from your Zombie state quickly, as I know the effect that missed nights sleep(s) has on one. Please know that whenever you try the CBT out, you only have to email me if you need any encouragement to see it through. Better still, why don't you invite me out to your remote mountain villa in Spain to supervise your achieving natural sleep!
I have just realised that I did not answer your question about me finding an appropriate window free of commitments to turn my sleep Around. It was difficult as I have an 89yrs old mother with dementia. She is in a home, but I feel guilty if I do not see her frequently. I have other things going on in my life as well, but I decided that my health was a higher priority than nearly all of my commitments and it was keeping them that we're contributing to where I was with my sleeping. I, like you, am blessed with a good wife who took the lead whilst I was addressing my poor sleep. She also kept up with me late at night until we went to bed in support, but I got up at 6am myself every morning just as I still do.
Bob, just ask yourself as I had to, "am I putting others ahead of my own reasonable health, with the consequence that I may not eventually be able to fulfil my commitments later on". I hope that in this reply I have not come across as patronising. I have tried to give you an insight into my thinking before I commenced my CBT.
Norton,what have you done to help you sleep as my husband has real problems getting to sleep and staying asleep any help and advice would be much appreciated.
I have just read up your husbands PD history. I did not realise he has had DBS. This is outside my experience, but please do not despair, it is well worthwhile trying the CBT that I have outlined in my reply to Hikoi above. After all, your husbands body still functions in many ways and the idea is to build on it regarding sleep improvement. May I suggest that you do not let him sleep or nap, even once, during the day time, then keep him awake until midnight then go to bed. Get him up at 6am whether he likes it or not and remember do not let him sleep until midnight again. Try this for one week at least and see what happens. Clearly, you are a supportive wife, just like mine and you need to lead the way in this exercise. Once his body adjusts to the new routine, hopefully he will see the benefits himself and will go to bed and get up himself without any input from you. With a bit of luck he may bring you in a cup of tea at 8.30am!
Please keep us informed, but only do any of the above with the consent of your GP beforehand.
Did you have cognitive behavior therapy with a therapist or did you do it on your own. It makes a lot a sense and I believe I will turn off my laptop at 9, although hard to put down the blackberry which goes everywhere I go! I'd like to find a CBT therapist who could also help me with PD related IBS-C and PAIN! What are the one or two things you wanted to mention, please? Thanks, Norton
Hello PatV, thank you for your response, which I will attempt to answer the questions you asked. Firstly, you do not need a therapist to carry out CBT to turn your sleep around. May I suggest that once you have cleared it with your doctor and get the OK, start by going to bed at midnight and get up at 6am every morning. Do this seven days a week without fail for a few weeks, then as you get your sleep into a pattern, consider bringing your bedtime forward by 15 minutes and so on. For the first several weeks at least, do not sleep during the day, including naps. You did not say if you are taking sleeping pills, if so, you need advice from your doctor on how to wean yourself off them. Tell him/her what you are attempting. What is IBS-C exactly and what causes your pain? I ask out of interest, but remember I am not a doctor. They may need other forms of treatment. Are you following a particular diet? You may need to build up your levels of serotonin at tea time which is helpful for inducing sleep; I did this by eating a bowlful of rice for my last meal of the day. Before starting any form of treatment, may I repeat that you should ask your doctor for advice as all the above has worked for me and you may have special considerations to take into account before embarking on this treatment.
Hi Norton, Like yourself my sleep, or lack of sleep has been a major pain in my life, also I to have tried every sleeping tablet known to man, also like you I fought with this pill and that pill, no one seem to care if they were clashing with my list of Pd meds. so I stopped taking the sleeping/ antidepressants pain killers what ever the name, and gradually my brain liked, wakening up from a heavy head first thing in the morning, and I don't believe the 8 hour golden rule, I get by on 2 hours 1 night, 3 hours, 4 hours my brain, doesn't seem to like sleeping, but I suppose we are all different in our needs, just like our Pd meds, in my local Pd group of about 40 to50 none of us have the exact same dossage, I sometimes wonder if we are all on a giant world wide Pd trial.???
PS Norton, I will try again the CBT, I find it very hard to stay in bed, If I'm not tired enough, it is mental torture, that 99% of the time, i just have to deal with. but I'm pleased it works for you, and I hope it works for any of our Pd friends.
This reply is out of sequence, but I have a suggestion for you to consider when you lay in bed hopefully after improving your sleep. It is this, get yourself a £1 radio from Poundland and plug the phones in and tune into Radio4. There are some interesting programmes on. I get four hours sleep every night, but find that if I decide to lay in bed after I wake up and listen to the radio I sometimes drift off again.
Hi Norton, thanks for the kind thoughts, I like your go, I will try CBT, as I have nothing to lose, and i will be robotic with my times. early to bed, early to rise. getting up isn't the problem, as my wife rises every morning at 6am. i usually make her a cup of tea, and she gets out and I get in. but thanks again, I hope a bit of your enthusiasm rubs of on me.
Good man, but one major correction; it's not early to bed, early to rise. Instead it is late to bed (suggest midnight) early to rise (say, 6am). From my experience, this regime will show results within a few days and try not to nap in the afternoon for the first few days also. Stick with it and hopefully you will see the benefit.
To help you further, consider increasing the serotonin level in your brain which is another neurotransmitter and important for sleep, by making your last last meal of the day a 100% carbohydrate meal, say porridge or rice for several days. Whatever you do, never eat protein at this meal, it used to have a stimulating effect on me.
Finally, remember that I have been three days without any sleep on a few occasions previously and if I can turn that around so can you. Good luck.
Hi Norton, Thanks again, I think your correction is spot on, because even the thought of going to bed before 12 midnight, would drive me mad, I have to admit I'm sleeping really well this week, I got 5 hours last night, which for me is like a PB.
Thank you for your positive news about improved sleep time this week Danny. I hope that it will continue, but don't despair if you have a bad night occasionally. It appears to me that you are a good subject for this exercise, inspirational even. I hope that we hear from you again with your experiences.
Read with interest your "blog". One of my real problems with PD is my lack of sleep. 5 hours would be wonderful and on a few occasions I achieve 5 hrs. My PD is made worse by nocturia so recently I have tried Trazodone for sleep aid and it helps somewhat.I would love to receive any suggestion you might offer. I am a 66 year old retired judge in Virginia. Thanks.
First, please be aware that I am not a doctor and these comments stem from my own experiences. You will know that nocturia can be a symptom of a neurological condition such as Parkinson's. In fact, many people of your age have to visit the toilet during the night, my neighbour for instance does so at least four times and he does not have Parkinson's. Presumably, you have tried not drinking after 6pm which I do. From my memory, Trazodone is sometimes prescribed to PwP for two reasons, the first is to help delay the need for emptying the bladder, the second is to extend the time asleep. I was taking Amitriptyline for the same reasons which was fairly successful but I did not like the side effects such as tendency towards constipation, gaining weight and mild cognitive impairment. So, I stopped taking it. I feel much happier now that I am off that medication and the others which I tried too. Even after I have improved my sleep with CBT I do not get a straight five hours but after waking at around 4am I frequently drift off again until I get up and out of bed at 6am which I do seven days a week. I now go to bed at 11.30pm, but started off at going at midnight initially. I accept that I will probably never get 6-8 hours of sleep like so many experts advise, but I can function during the day quite happily with what I do get and in addition, I frequently have a nap in the afternoon. I have found that my body needs routine and probably most people are the same as me. In my opinion, there is often a disparity in what people think they should be getting and what they can acheive through the effort of CBT. I used to think like that, but now accept what i get through drug free, natural sleep and much happier for it. I hope this helps, please come back to me if you have any further questions.
Thanks for the info---my sleep schedule sounds like yours. I want to set up a routine similar to yours as I can exist on 5 hrs sleep but it has been years since I slept for 5 consecutive hours. Right now I rely on the Trazodone to get me through the night but hope to titrae off it soon. Also, I routinely eat a banana and/or a kiwi as I sometimes get leg cramps in the early morning. I am beginning to study CBT as I want to be conversant with all aspects of the drill. I plan to keep you apprised of my progress. Thank you for sharing your experiences.
Good to hear from you. About your leg cramps, I am unsure that they are always related to Parkinson's and in my opinion many things are attributed but they may have some other cause. As part of your search may I suggest that you read up about Magnesium which as you will know is a macro mineral, but you may not know that up to 80% of us in the west are short of this mineral and one of the symptoms of a deficiency can be leg cramps. So, why not spend a short while looking up the website of a doctor/naturapath Carolyn Dean (magnesium), you will be amazed at the importance of magnesium in our bodies, including helping with insomnia!
Hello Norton,thanks for sharing.I agree with you its not the amount of sleep you get but the guality.I have had problems with sleep for as long as I can remember.Tried everything there is out there and do not like the side efects etc. I sleep for as long as my body lets me,than get up and start my day Most days are good and for that I am thankful!!
Thank you for your input re it's quality, not length of time you sleep that's important. Having said that, have you tried CBT to improve on the quality of sleep that you normally get? If not, it may be worth a try.
Thanks for the postings. Now I know I'm not alone in being unable to sleep. For a year and a half after PD diagnosis, I was only getting 4 hours (if that) a night. I woud wake up, wide awake, actually feeling rested. But it would be 4 a.m. So I would go to my computer and work on a memoir I'm writing. Then it caught up with me, and I am dragged out and exhausted. My doctor gave me Klonopin (aka Clonazepam) for tremor and it also helps with sleep. Plus omitted a second dose of Selegeline (which seemed to act a bit like speed.) Finally am sleeping. Having a regular schedule really helps, and doing something relaxing while in bed--like reading or games on iPad helps me (though I could see it not helping if you are really caught up in it). Thanks for sharing everybody. [I just joined.]
Thank you for your input which is very welcome sharing with us how you cope. For anyone wanting to embark on CBT there is another step to take after you get into a core time sleep pattern, say, go to bed at midnight and get up at 6am seven days a week. Once that is achieved, bring forward your bedtime 15 minutes earlier or conversely get up 15 minutes later and so on. That way you can extend your sleep time somewhat. You are right, I could not use my iPad (aren't they great) in bed for I find using mine stimulating. If I wake up early I plug myself into a £1 radio and tune in on a talk band which gives a 10 minute shipping broadcast (I can not think of anything less stimulating).
Now that I am off all sleeping medications and getting adequate sleep to cope the following day, I am beginning to research the influence of diet on our sleep and Parkinson's. if I think that there is anything that I can contribute in the future, I shall write a blog about it. In the meantime Maybeme, keep on posting, I like what you have to speak about.
Good morning Norton, once again its 3-30 in the morning after having 4 hours sleep so please please can you pass on your MAGICK.formular for sleeping i would love to know it , and i am sure there are others who would welcome it THANKS B
Dear me Barbie18, I can feel the distress of your poor sleep coming through in your posting. Presumably, you have consulted your GP with your situation? He needs to be kept appraised of what I am about to say. Firstly, it is well known that many
PwP have sleep problems, but there are still many who can sleep 6-7or even 8 hours. I ask my self Why, but I don't know the answer. Speaking for myself, I often wonder if mine was a 'learned behaviour' because my insomnia started about two years before my tremor became obvious and I received my Parkinson's diagnosis. During the period of insomnia preceding diagnosis we had a family trauma that kept me awake night after night. Many of us I feel sure have upsets that can affect sleep, so if it is a 'learned behaviour' then surely we can improve matters by 'learning to increase our sleep'.
So, this is the drill. Initially, do not sleep during the day.
Go to bed at midnight, every night and get up and out of bed at 6am every morning, seven days a week whether you slept or not. Read that again Barbie18.
I seem to recall that you do crosswords when you wake up, but I would think it far too stimulating. I know that laying in bed when you cannot sleep is torturous, but I plugged myself into a cheap £1 scan radio from Poundland, tuned myself into the BBC World radio which made it bearable for me. At 5.20am the shipping forecast comes on, the the weather forecast for the mainland and then Farming today. After a few days I found myself drifting off. The idea for me was that when I awoke early I wanted something to distract me from the torture of laying there, but was sufficiently boring so as not to stimulate me either.
After a few days of going to bed at midnight and getting up at six in the morning and not napping in the daytime, you should start to improve your quality of sleep. Notice that I say quality, first and then the quantity should improve too. However, I am nowhere near achieving 6-7 hours a night, but my sleep has improved to the point that I can function well the next day AND I have dropped all my sleeping medication!
Sorry Barbie18 that this has been a long reply, but I want to say more to you as I feel you need encouragement. Understand, there is no magick formulae as you say, your sleep will improve only by hard, consistent application of the principles outlined above.
Sorry to hear of your lack of sleep problem. I know only too well the effect it can exert on your life. If you have not tried the method outlined in this thread then I urge you to try. My sleep is far from what is considered good by a person without Parkinson's, but significantly better than it was and I am now not taking sleep medication of any sort. If you think I can be of more help than contained in this thread, then please contact me again.
i am 73yrs, have been dx for thre years. early last year dr increased my med (CARBIDOPA/LEVO TO 50/200 TB CR) AN INCREASE OF twice the dose had me start taking in 4x daily in stead of once daily. i told him on my next visit i could not sleep more than 2hr at a time and it took me three hrs to go to sleep. that didn't seem to phasee him. so i visited my gp and got sleeing pill and tried for three mos. no help. the gp changed the med to another, same results nothing. In Dec 2012 i saw pd nurse pract, she said it sometimes takes several mos for sleeping pill to work. at that time i started taking the pd med once in the am only. I now get to sleep 5-7 hrs and feel rested. i think the pd meds are the culpret. on my next visit to the pd dr if will discuss with him and find out how interested in my condition he really is?
Good to hear from you. In reply to your thoughts that it is the carbidopa/Levadopa that stopped you sleeping properly. I find that interesting, but can not comment, because I was sleeping extremely poorly even before I was diagnosed as having PD, just as I was before and after starting Sinemet. I can not see why Your Parkinson's nurse said it takes months for sleeping tablets to work. That is not my experience at all. The Zopiclone I was prescribed worked from the first tablet, but the Amitripyline I had to start with 10mg and build up to 30mg over a couple of weeks. Both were effective in getting me to sleep.
One thing that struck me as unusual about your Parkinson's medication is that you take it once only in the morning. May I ask, is it called Azilect in case others reading your post want to know and is it controlling your PD well? Whatever, I am delighted to read that you are now getting 5-7 hours sleep a night on this regime.
MED IS generic for sinemet(carbidopal/levo 50/200 tb cr) i first reduced dosage to one time daily after 6 weeks reduced further to 1/2 tablet daily. I now have no pain in arms and legs and feel much better overall. my sleep is not good at this time. i will try your sleep regeimen starting today. The med seems to controll pd, i am not so weak now and the shaking is sporadic, my only concern is i am unable to consistantly get off my duff to exercise or walk, as i recently retired have not gotten into a routine as when if was working. will comment after i have tried the sleep reg. for a week or so.
Sorry to read that your sleep is not good at this time. The regime I adopted and explained in this thread takes some doing and is worth it if you do it properly. It is virtually the same system recommended by doctors at sleep centres and in books. May I suggest that you go to bed at midnight tonight and get up at 6am at the latest. Get up at that time even if you didn't get even one seconds sleep during the night. If that is the case, do not cat nap at all during the day. Repeat the schedule tomorrow and the next night and so on. If you do this, I suspect that very soon, you will go to sleep not long after you go to bed. You may not sleep the full six hours but always et up at 6am, seven days a week. I still do this and have come to enjoy a quiet read with a mug of tea whilst my wife is still asleep in bed. At 7am I meet a couple of friends who are out with their dogs and we walk for three quarters of an hour. Remember this Spideaux, even though you have Parkinson's, your body still needs sleep, help it! OK, you will probably never sleep as well as you did when you were younger, but it is the quality of your sleep that is important and not the length of time.
Tremor keeps me awake at night I have a Tremor 24/7 a bad one I take no PD meds. And don't want to I read more bad about them then good. I take melatonin at night which doesn't seem to help any longer and I take mucuna in the daytime
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Most days are good and for that I am thankful!!
Why do so many people with PD have trouble sleeping?
Just thinking about MJF and his new show.
