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  • Relief for Parkinson's insomnia?

    Posted by natalia on November 14, 2019 at 12:13 pm

    My dad was diagnosed with Parkinson’s disease 11 years ago at age 58 but most of his symptoms were fairly manageable until recently. He’s always had some trouble sleeping (even before PD) but the last several months he’s lucky if he gets 2-3 hours of sleep per night. He’s tried several prescription and over the counter sleeping pills, melatonin, etc. but nothing has helped. It’s really starting to affect his quality of life so I’m desperate to find something that might work for him. Does anyone have any recommendations for something that has helped them manage PD insomnia?

    cap-sage replied 4 years, 5 months ago 8 Members · 12 Replies
  • 12 Replies
  • Deleted User

    Deleted User
    November 14, 2019 at 2:49 pm

    Here are some things others have recommended to me:

    1.  room darkening curtains

    2. no watching tv, doing smart phone/tablet/ computer work for at least an hour before bed.

    3, try not to eat after 6pm or exercise too close to bed time.

    I have found meditation and/or deep breathing to be helpful sometimes.  here is one i sometimes use on my ipad:  https://www.youtube.com/watch?v=8TDcGYmEgyM

    good luck..

  • andrew-l

    Member
    November 15, 2019 at 4:34 pm

    Here are some things others recommended to me and/or have used myself.

    First off agree with everything Jean wrote.

    Would add

    1)insight timer meditation app with help to induce relaxation state. Thousands of guided meditations on it.

    2) Try to optimize night time dopamine levels with meds taken before bed and/ or in  middle of night (speak to neurologist about it.)

    3) Have found the 3 mcg time release melatonin (made by life extension) to be helpful. Was recommended to me on this site and it worked for me.

    4) can consider cannabis sublingual in night. Long story about what to use and which is best.

    5) aerobic daytime exercise if possible

    6) Limit daytime napping

    7) A good massage chair to be used at night as needed, if can afford.

    8) Night time herbal teas an hour before bed,  organic and with herbal sleep inducing supplements, perhaps high in certain sleep inducing terpenes.  Best while reading before bed.

    Note: none of this is meant as medical advice, just my opinion.

    Then there are things like sleep studies, etc. best discussed with doctor if needed. Hope that  helps a little.

     

  • andrew-l

    Member
    November 15, 2019 at 4:46 pm

    Also certain antidepressants help with sleep , if depression is an issue. Again a question for doc.

  • jo-s

    Member
    November 17, 2019 at 6:09 am

    Hi, Natalia,

    Sleep (whether insomnia or fractured sleep) is an enormous problem with PD and a very common symptom. I’m still trying to find the “cure” (even though I’ve tried and use all the suggestions above). If your dad tries these and still suffers from insomnia, I’d suggest that he talks with his PCP or MDS, as prescription meds might be needed (or the doc might have additional non-med suggestions).

    Anyone who suffers severely from insomnia or RLS (I have both) may need additional help beyond the natural solutions. I’m getting close to that breaking point.

    It’s very kind of you to care so deeply about your father and want to help him. You’re a very special daughter (and he must be a very special dad)!

    ~Jo

  • gail-dons

    Member
    November 17, 2019 at 6:48 pm

    I have had serious problems with insomnia, both fractured sleep and getting little sleep. I also have sleep apnea, and need to sleep with a full face style mask. My sleep doctor, bless him, let me have a sample of a new mask that had just come out, which reduced my awakenings somewhat, but the getting to sleep and staying asleep was still a big problem. My doc referred me to a sleep psychologist(!) and I started CBT No, it is NOT cannabis – Cognitive Behavioral Therapy, It is currently the gold standard for insomnia treatment, and it really helped me. My sleep pattern is still fragile and gets destabilized by jet lag (I just arrived in Pakistan for a month and right now I’m listening to the 0530 mosque call to prayer because I’ve been awake since 0215. The +11 hrs is difficult!) But I know if I get back to the basic sleep titration I’ve been taught, I can get back on track. There are online CBT programs, but I knew I’d do better if I had someone to whom I was accountable. Plus, when I get off base, I can email him for help.

  • natalia

    Member
    November 18, 2019 at 12:04 am

    Thank you all for the suggestions! I’m hopeful some of this might help and will definitely bring some of these up at his next appointment.

  • melba-w-benson

    Member
    November 19, 2019 at 10:12 am

    My doctor has prescribed Temazepam for insomnia, and it works great for me.

  • debra-l-bomaster

    Member
    November 19, 2019 at 2:50 pm

    I recently participated in a bright light study at Mass General for PD sleep disturbances.  I felt it was very successful.   I am using a Happy light 10,000 Lumens for 30-45 minutes a day now since completing the study and find my sleep is better. I still get interrupted sleep due to needing to use the restroom but I fall asleep faster and have a deeper sleep.

    I decided this more natural way…the light also helps to improve my mood.

  • Deleted User

    Deleted User
    November 19, 2019 at 2:51 pm

    drbra, any time we can find something to help us that doesnt involve drugs is a beautiful thing! I am glad you found your Happy Light 🙂

  • Deleted User

    Deleted User
    November 19, 2019 at 2:51 pm

    drbra, any time we can find something to help us that doesnt involve drugs is a beautiful thing! I am glad you found your Happy Light 🙂

  • michael-r-scott

    Member
    November 20, 2019 at 11:10 am

    Natalia,

    My Neuro suggested I was taking too much Melatonin and had me order a bottle of smaller 300 mcg melatonin tablets. She even recommended the Sundown Naturals in the 120 tablet bottle. I found them cheapest on Amazon, They have worked better than anything else I have tried. She instructed me to take one pill about an hour before I went to bed. She also instructed me to take my nightime Lebo/Carbo dose just as I went to bed. That combination has given me a good nights sleep ever since her recommendation about eight months ago…

    Mike

  • cap-sage

    Member
    November 20, 2019 at 3:57 pm

    Dear Natalia,

    I too have had increased insomnia with PD, and have tried many remedies to find what works best for me. I have, and will continue to avoid drugs and seek the most natural solutions. Before finding workable natural remedies, it was at times impossible to sleep at all, all night. One time in particular occasioned me to have my wife drive me to the ER at 6 am, and for me that signals a very serious situation.
    Here are some of the remedies and supplements I have used to help my insomnia:
    For sleep, I tried MANY supplements, exercises, etc. and currently use the following for sleep:

    1. I take “Calm” by Natural Vitality. This was developed by Peter Gilliam and later sold to Natural Vitality in Texas. I buy it from Vitacost at below retail. This helps with sleep, AND with constipation. (it’s the magnesium) If elimination slows down, I just take an extra teaspoon at dinner, then my regular heaping teaspoon in hot water before bed.

    2. I found that with PD, the same, repeated supplement-cocktail would only work once, ie. that “Parky” would negate it if repeated…so…I alternate between my best two cocktails every other night, and that has proven the best. Besides Calm, I take: B1, B5, Tryptophan, Valerian root, melatonin in varied amounts of each. I substitute the amounts of Valerian and Tryptophan every other night, 3 of one, 1 of the other.

    3. I try to avoid strenuous exercise, and sources of light (computer screens, TV, cell phone screens) before bed, but I do do stretching for my lower back, and I do “Jumper Cabling” as taught by Howard Shifke at: https://www.fightingparkinsonsdrugfree.com/

    4. I wake up several times each night to use the restroom, and after 5 a.m. I put on a sleeping mask like Desi and Lucy used to wear on the Lucy Show on TV. This helps avoid morning light. I also use room darkening shades and keep the bedroom as dark as possible.

    5. I also do dexterity and nerve exercises before getting out of bed, then do jogging and strength exercises each day.

    6. ASEA water has also helped my insomnia. For researching for PD, I use Health Unlocked also. I found it by researching ASEA water for PD. It was one of the many sites where I found ASEA mentioned by people who had tried it. In fact, the testimonial(s) I found about ASEA on Health Unlocked helped me decide to try it. It did help. In that it’s pricey, I became a distributor to help defray my cost, and to help my friends try it at my cost.
    It’s backed-up by some pretty sound science, and I found many friends, some with MAJOR medical conditions who were using it with stellar success. Part of that science is that dealing with cellular level healing takes some time (like the time it takes for major illnesses like PD to manifest), so using it for the long term is the best bet as I see it because it helps the body heal on a cellular level. I’ve been using it at my current dosage since 28mar19.

    If you’re interested, there is a short video explaining the basic cellular tech at: https://vimeo.com/64465323

    And my web-site for ASEA is at: https://1800242709.myasealive.com/ Here one can find success stories of people using ASEA and info on distributorships. [NOTE: I DO NOT PROMOTE THIS FOR INCOME, NOR DID I BECOME A DISTRIBUTOR TO PROFIT OFF OF IT. I HAVE A INVESTMENT BUSINESS FOR MY INCOME THAT I HAVE RUN SINCE 1975. I ONLY MENTION THIS BECAUSE IT HAS HELPED ME WITH MY PARKINSON’S AND IT HAS HELPED MANY PEOPLE I KNOW WITH MAJOR MEDICAL CONDITIONS.] I also have access to specific success stories available upon request, and grouped by medical condition.

    So, these are a few things I’ve found helpful for PD insomnia.

    I wish you and your dad the very best, and will do what I can to help.

    Best Regards,
    Cap

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