Has any PwP improved their insomnia using cognitive behavioural therapy?

[Norton1]

I wonder if the insomnia experienced by some PwP's is ever caused by learned behaviour as opposed to the Parkinson's itself. If so, has anyone improved their insomnia using cognitive behavioural therapy (going to bed late, getting up early 7 days a week).

[jillannf6]

HI

RELAXATION IS V BENEFICIAL OT SLEEP AND STAYIGN ASLEEP

CDS CAN HELP WITH THIS

LOL jiLL

[Norton1 in reply to jillannf6]

Thank you Jill. I have to admit that my insomnia has not improved after using relaxation CDs. I keep putting off the difficult option of cognitive behavioural therapy, but I would like to know if others have had any significant improvements using this method.

[Rlp1 in reply to Norton1]

I use Headspace.com and calm.com

[jillannf6]

i had CBT A LONG ITME AGO AND IT DEFINITELY HELPED EM SEE THE WOOD FOR THE TREES

AND HELPED IWHT MY SLEEPGIN PATTERNS

BUT SINC EI HAVE HAD THE PSP MY SLEEP HAS BEEN MUCH WORSE I AM RESTLESS AND CANNBOT RELAX

STIL SMILIGN THO

LOL jILL

[Norton1]

Hello again Jill,

you say that you 'had' CBT a long time ago, but CBT is something you do yourself possibly under the guidance of a sleep specialist. Was it hypnotherapy you had instead of CBT?

[Court]

I have sleep problems. I go to sleep quickly, but wake thinking I have had a good night's sleep only to find that I have been asleep for a couple of hours. My GP suggested that I try going to bed at different times to see if I could break this pattern. I was waking at 1.30 am on the dot.I tried this but changing the times did not help me. However, everyone is different and I believe this has helped others. I now take half Sinemet CR at night, together with an over the counter herbal medicine, as suggested by my Nurse. Don't think Sinemet helps, but will continue until I speak to my Nurse. Good luck.

[Norton1 in reply to Court]

hello Court,

thank you for your reply. when you say that your gp told you to change bed times, did he mean go to bed late and get up early to try and concentrate your sleeping time? if so, how long did you do this for?

Norton

[Court in reply to Norton1]

Yes. I was advised to try going to bed later for a few days to see what happened. I still woke at the same time! When I wake during the night I always get up and find something to do. Was told to stay in bed on waking. Tried this, but couldn't settle. Tried changing times of taking meds and added Sinemet CR at night. Nothing. The nurse asked if I had tried herbal sleep aids. I had not. Someone said that they have found Valerian Root helpful so at the moment I am trying a preparation, in drop form, containing this and hops. Not sure what is helping, but am sleeping a bit longer, still getting up, but not up for as long. Though my tremor seems worse during the night. Will have to watch this. I must add that I researched Valerian Root thoroughly before taking it as I did not want to upset my already fragile meds. Also followed advice from Nurse.

[Norton1 in reply to Court]

Thank you Court, but as well as going to bed later, did you complement that with consistently getting up earlier in the mornings, seven days a week. Also, when you were awake for longer than 15 minutes, did you get up and out of bed and do something else such as read a non stimulating book until you became tires again and went back to bed? this is true CBT.

Regards

Norton

[Court in reply to Norton1]

I did not really get up earlier, as most mornings I am up at 6am as I have commitments. I never stay in bed longer than 15mins after waking as I know from experience this is not helpful. When I get up I usually knit, read a book or go on my laptop. This is just something I do and not related to CBT.

[Norton1 in reply to Court]

Thank you Court,

May i ask you what time do you usually get to bed? For me, i find going on my laptop extremely stimulating.

Norton

[Court in reply to Norton1]

Depends on what time I have to be up next morning and how I feel, but usually about 10pm.

Have not found laptop too stimulating so far.

[Hidden]

I think eventually one just accepts it. I suspect it is all part of the condition.

trouble is if you take anything how will it affect the next day.

Pain and sleep are two problems but if one goes to the GP it is always drugs they prescribe, which cause side effects then more drugs to counteract them.

[Norton1 in reply to Hidden]

hello oldtyke,

thank you for your reply. my point is that there is another way to increase time asleep other than taking drugs. it is cognitive behavioural therapy and shows a lot of promise. presumably you have not tried this way?

Norton

[Hidden in reply to Norton1]

Cognitive Therapy is more difficult to get than digging for Diamonds. unless one can pay privately.

I have seen Pshychiatric patients wait years for cognitive therapy the waiting lists are so long.

if you managed to get it your were pretty lucky.

[Norton1 in reply to Hidden]

Hello Oldtyke,

My understanding is this, that CBT is something you carry out in your own home and bed. there are several excellant books outlining how to do it. However, it would take some serious application on anyone's part who wants to achieve natural sleep as opposed to barely surviving on a couple of hours sleep a night or taking drugs for the rest of their life.

Norton

[Hidden in reply to Norton1]

I can quite understand their are books on many subjects.

It can be quite difficult to learn a procedure by reading a book in fact in the case of CBT very difficult indeed, often patients are stressed and trying to fathom a book by someone who is basically giving written advice and you can't ask a question.

One would not expect a Neurosurgeon to do DBS by reading a book on it, i.e. One has to have experience of it,

A person giving CBT can talk through problems and needs to know the person, books can only guide that is where they fall down.

[Norton1 in reply to Hidden]

Hello Oldtyke,

Thank you for your reply. my GPs answer to insomnia is sleep medication and that is something i do not want to do for the rest of my life and as you have said before, one medication leads to another often. i have read a couple of books on persistent insomnia neither were difficult to understand, but applying their principles consistently is the hard part and require a lot of determination.

Norton

[PatV]

I find if I don't take the sinimet CR at bedtime, my digestion stops sometime during the night and the pressure wakes me up. Like last night I also take klonopin, valerian and melatonin for a solid 6 hours maybe 7. Since I've stopped taking xanax during the day, I'm much more alert and energetic.

[PatV in reply to PatV]

my current meds 100/25 sinimet 5x a day plus 2 or 3 half sinimet CR

[Norton1 in reply to PatV]

hello PatV,

in my time i have tried all the herbal stuff and had no success at all. lately, i have tried Zopiclone an am now on Phenegan. i do not want to take these drugs forever and want to try CBT which will take some doing, but will at least give me natural sleep.

Norton

[PatV]

I hear ya! and follow your experience with interest. Let me know how it works. I'm seeking same for insomnia and constipation. My daughter is in CBT for her traumatic brain injury. Since it was not covered by insurance, they had to submit claims calling it psychological therapy. But it seems to be working for her.

[Norton1 in reply to PatV]

hello PatV,

thank you for your interest in CBT and relaying your daughters experience.

i was hoping that some other people with parkinsons insomnia problems had tried CBT and if successful would give me encouragement to try. i wonder how many people would benefit from CBT, but have taken the sleep medication route for years on end?

Norton.

[Barbie18 in reply to Norton1]

Hi i am a new kid on the block as i have just been diagnosed that i have PARKY,What is C B T ?

[Norton1 in reply to Barbie18]

Hello Barbie18,

pleased you asked this question. Many of us PwP have terrible sleeping problems (insomnia). we can either do nothing about it, or take sleep medication or carry out Cognitive Behavioural Therapy (CBT). CBT means concentrating your sleep by going to bed late and getting up early seven days a week. if, when you go to bed or you wake up during the night and can not get to sleep again within 15 minutes, get up and go into another room and say read something non stimulating until you feel tired again and go to bed again. It is no use laying in when you have a bad night, this regime must be kept up for some time until you get consistent, quality sleep.

That is a brief outline.

Norton

[Barbie18 in reply to Norton1]

Well i never i dont believe it.. I have been doing something similar to this for years,I have had sleep problems for quite a while now, one of the things i like to do is Puzzles it is good therapy. Well thanks Norton for the reply i will have a go at doing the regime you mentioned starting this morning as it is 1 AM now and i dont feel tired.BARBIE

[Norton1 in reply to Barbie18]

Hello Barbie18'

Your reply makes this thread worthwhile fo me. Please get up early after going to bed late, seven days a week to concentrate your sleep into a smaller, quality time 'window'.

One other point, do you eat a low carbohydrate diet? If so, that can affect some people's getting to sleep in that it can keep them awake. Ideally, you should have a complex carbohydrate meal at tea time if that is your last meal of he day. It generates the neurotransmitter serotonin which helps keep you calm and is beneficial for sleep. It is thought that many PwP have a deficiency of serotonin in addition to dopamine.

Please keep us informed of your progress.

Best wishes

Norton

[Hikoi]

Norton

In regard to your original statement, I think that our condition combined with meds is at the root cause of our sleep problems. However I also think this gets overlaid with poor sleep behaviour as a response, so for instance we may indulge our obsessive behaviours like internet use till they become a pattern that is hard to break. For this reason i think behaviour modification such as CBT techniques would be worth trying.

I'm interested to read your outline of how this is done. Have you tried it yet? It reminds me of sleep hygiene ideas and maybe incorporates this into the treatment.

i believe that CBT is favoured by the NHS because it has measurable outcomes as opposed to psychotherapy, gestalt etc. It is likely that all NHS counsellors are expected to work this way now but im not sure. If so that means it should be possible to get a GP referral to a counsellor for support to follow the programme if we want to.

[Norton1]

Hello again Hikoi,

I have just answered your post to another question of mine. I agree with you to a certain extent about medications and the condition being a possible cause of insomnia, but everyone has to have sleep, no matter how little and CBT tries to build on that. At times I have gone 3days without any sleep at all! So, fed up with taking at various times, Zopiclone, Amitriptyline, melatonin and phenegan I decided there must be a better way. Yes, I am in the early stages of the CBT and when I am satisfied that it works for me I shall be writing up about my experiences and findings on this forum.

Incidentally, it is my opinion that diet is important too if you want to improve your sleep, not only eating the right foods, but also at the right time too. I shall include this aspect as well.

Thank you for your post.

Norton

[Hikoi]

How aweful Norton. I cannot imagine being that sleep deprived. In your situation sleep issues must sometimes take over your life. My brother who has parkinsons too has REM sleep disorder, i just stay up far too late reading posts on forums. I look forward to reading of your experience with CBT and also nutrition as it relates to sleep -interesting.

[Norton1]

Hello Hikoi once again,

Thank you for your empathy in mine and others chronic sleep problems. You have probably heard it said that insomnia is like torture. I intend experimenting with CBT for about four weeks to give me the confidence that I am on the right track.

Regards

Norton

[Hidden]

Dear Norton, I am a yoga teacher with PD and have found great results by a practice called, "Yoga Nidra". I practice it myself along with my traditional yoga and have truly remarkable results. Look in your area for registered yoga teachers and they may be able to help. Sleeping like a baby.

[Norton1 in reply to Hidden]

Hello Girl,

Thank you for your suggestion to take up 'yoga nindra' to improve my sleep. It is something I will research whilst I am still practicing cognitive behavioural therapy which I am half way through a one month experiment.

Regards

Norton

[Hidden]

Yoga Nidra is the correct spelling. Best of luck and Happy Merry Holidays to you.

[Norton1 in reply to Hidden]

Sorry Girl, thank you for the correction. I will definitely be researching 'Yoga Nidra' over the next couple of days. Thank you for your Christmas Greetings and I send mine to you from the UK.

[Rlp1]

I use 6 mg Melatonin and 15 mg Remeron. I also drink Tulsi Tea sometimes.