Sleep: I don’t know how much longer I can... - Cure Parkinson's

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12Maxwell3 profile image
40 Replies

I don’t know how much longer I can go without sleep. The depression is so hard because of no sleep. The Neurologist is going to try another sleeping aid, if you are going thru this or have gone thru it and can now sleep, please share with me.

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12Maxwell3 profile image
12Maxwell3
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40 Replies
tid1 profile image
tid1

When I can't sleep I take 2 Benadryl. Then I am normally asleep in 20 - 30 minutes. You might want to ask your doctor about this because when I was seeing an allergist before you could buy Benadryl over the counter he had me taking twice this dosage.

Lynne1946 profile image
Lynne1946 in reply to tid1

Absolutely take 2 benadryl at bedtimes. It works great!

faridaro profile image
faridaro in reply to tid1

Benadryl is anticholinergic drug and has to be used cautiously by anybody with neurological issues. You may need to supplement with choline if using Benadryl on a regular basis - in any case it would be good to consult with your doctor.

park_bear profile image
park_bear

Yes no sleep one of the worst PD effects. Are you adequately medicated with some form of levodopa? That helped me. Valerian root is a non-prescription herb I have also found helpful (warning - has bad a smell when taking) . Benadryl also worth a try.

Miraculously I sleep well now after starting practicing Qigong. healthunlocked.com/parkinso... No guarantee it will help others though.

BUZZ1397 profile image
BUZZ1397 in reply to park_bear

Don't you have a tremor? That's one of my sleep obstacles, I awake when my body shakes. Is Qigong helpful, if you have tremor do you know?

park_bear profile image
park_bear in reply to BUZZ1397

I have some tremor in left arm and hand but not all the time. It's at its worst when I am talking to other people or at the keyboard. Fortunately it has not been happening at night so far. Qigong has helped with the tremor a little. The big deal for me is it seems to have quelled the day-night sleep reversal which is a separate matter from the tremor.

BUZZ1397 profile image
BUZZ1397 in reply to park_bear

thanks for the reply

alexask profile image
alexask

You have my deepest sympathy. I got a relaxing hypnosis download which sometimes works. Melatonin sometimes works. Exercise and sunlight during the day help. I got some hop extract, but I am not sure that helped. Mannitol helped my sleep too. Watching comedy then reading an absolutely grim book ( about world war one or a Roddy Doyle book) also strangely worked. Watch some meditation videos.

Beckey profile image
Beckey

It used to be a nightly struggle to get some sleep and I often lost the battle. Now, I sleep most every night, although I often don't actually get to sleep until the wee hours of the morning. So I sleep like a rock from, say, 3 or 4 a.m. to 9 or 10. Or I take "catnaps" all night. So be it! My daughter downloaded some guided relaxations for me from iTunes and that helped; so did melatonin. The days I do Rock Steady Boxing, I'm beat by 10 or 11 p.m. Benadryl made me feel jumpy and agitated all night.

GymBag profile image
GymBag in reply to Beckey

I agree with Beckey ( I usually do )

Naps ,then exercise, then naps

Forget about the rest of the world and their timetables. Music helps you exercise and helps you sleep. Its like the army, when you do not have to march, sit , when you do not have to be awake , sleep or rest. Good luck

Ruffinglgo profile image
Ruffinglgo in reply to Beckey

Benadryl has the same effect on me. I took one before MRI of spine and was so jumpy the technician had difficulty reading the results. The Rock Steady Boxing sounds both fun and therapeutic. Rock On!

faridaro profile image
faridaro

Have your vitamin D levels checked. See article:

blog.bulletproof.com/bullet...

hopeful88 profile image
hopeful88

Using Benadryl on rare occasions might be okay, but using it long term would be a VERY bad decision. Here is what the National Medical Director of the National Parkinson Foundation has to say about this

parkinson.org/Problems-with...

The body's most important neurotransmitter is called acetylcholine. And drugs like Benadryl are known as fairly strong anticholinergics, which means they block the release of this neurotransmitter. The more that you take anticholinergic drugs like Benadryl (cumulatively over your lifetime), the more likely you are to develop dementia. This is ESPECIALLY true of people with Parkinson's, because acetylcholine producing neurons are already under attack if you have Parkinson's.

The die-off of acetylcholine producing neurons plays a BIG part in determining whether you'll develop dementia or not. This issue gets worse with age.

Melatonin, getting decent exercise, and sticking to a regular sleep schedule all sound like good advice for help with sleeping.

Ruffinglgo profile image
Ruffinglgo in reply to hopeful88

This is an eye opener. Glad you posted this information.

jeeves19 profile image
jeeves19 in reply to hopeful88

Interesting. I have taken amitriptyline (Elavil? in the US) on and off for years to give me a guaranteed good night's sleep. I stopped taking it when I read some research declared - as you say - that it promoted dementia. But then we hear the news that this family of anti-depressants (tricyclics? which includes the latter as well as Nortriptyline) slows down PD and breaks up the alpha synucleain. What are we all to make of these ever conflicting bodies of research?! It's enough to make scream with frustration at times.

BUZZ1397 profile image
BUZZ1397 in reply to jeeves19

I know! Me too. I was once excited to read that it slowed PD. Then I reviewed the common adverse side-effects. Yikes!

Stodd profile image
Stodd

I would suggest getting a sleep study. The professionals will watch you and you just may have an unrelated issue that’s giving you insomnia. I have sleep apnea and it’s now under control.

Buy the chewable 5 - HTP. Take upon bedtime. It's natural and works like a charm.

Ruffinglgo profile image
Ruffinglgo in reply to

Is it safe to take with Azilect?

in reply to Ruffinglgo

My Mom takes been taking it for a year with no problems. It has been recommended by neurologists even for people taking Azilect. You can monitor it for yourself and see. It's been a God send for my mom who struggled with muscle cramps and tremors while trying to sleep even on her medication.

Ruffinglgo profile image
Ruffinglgo in reply to

Thank you. I will give it a try.

in reply to Ruffinglgo

I buy Mom the NOW brand 100mg chewable :). Hope it works for you as well. She loves it.

Ruffinglgo profile image
Ruffinglgo in reply to

I am familiar with that brand. I will let you know how it works for me. And I am so glad your mom is sleeping better. Sleep = Wellness

shellbinns67 profile image
shellbinns67

I suffered terribly from sleeplessness. My neurologist referred me to a sleep specialist to rule out any other conditions that might be causing insomnia. Bottom line, I had extreme anxiety likely brought on by the Parkinson's. After trying Sonata (sleeping pill) for several months, with mixed results that were not very good, my doctor gave me Paxil for the anxiety. I was concerned because of all the negative things I heard about taking it with Azilect, which I do. But I checked with the pharmacy, and they confirmed it was no longer considered an issue. That is over a year ago and I have never had any bad effects. And, I am not exaggerating, I have slept well ever since the second dose, taken at bedtime, without any other sleep aids. Hopefully, I will be able to continue it. Good luck.

AmyLindy profile image
AmyLindy in reply to shellbinns67

What dosage of Azilect & Paxil is working for you? All things considered of course ...

shellbinns67 profile image
shellbinns67 in reply to AmyLindy

1 mg Azilect a day, and 20 mg of paroxetine (Paxil) at bedtime. I also take Rytary and a few other things for blood pressure and such.

adrienneb profile image
adrienneb

I take 50 mg of trazodone and fall asleep within 30 minutes. I can't seem to sleep more than 5 to 6 hours, so time the trazodone so I sleep from midnight to about 6 am. That is a good night's sleep for me, and I have come to accept it. Trazodone is an old antidepressant (brand name Desyrel) , which is now often used as a sleep aid, as one seems to never develop tolerance to the drowsiness effect. I hope this helps!

Mariltn profile image
Mariltn

Up until a few weeks ago my husband suffered with this and his doctor has put him on an antidepressant at night now he sleeps throughout the night like a baby, it is the first time in many years. You might ask your neurologist.

asmckay profile image
asmckay

The suggestions made seem to me to be sensible and responsible. I know that you have written about pro sleep before, and that I referred to the sleep tips on my website, zeez.org.uk and to people with PD using our device (search "Linda Zeez Sleep" on youtube). Other things you might try are increasing root vegetables and decreasing sugar, a high fat snack before bed (tablespoon of coconut oil will do), and possibly the herb American Skullcap (tea). And magnesium, either as a supplement (magnesium citrate)( or in the form of epsom salts in the baths (2 ci ups) or both. As much daylight as possible. If you are interested in our device please ask for a discount. It's expensive but we will do all we can to help. On sale / return. Good Luck

jackedmonston profile image
jackedmonston

I tried valerian, melatonin and Advil PM. No luck. Then doc suggested dissolvable levadopa/cardidopa at night just before bedtime. Much better. Sleep in hour-long chunks, but get back to sleep pretty quickly most (not all) of the time.

BUZZ1397 profile image
BUZZ1397 in reply to jackedmonston

Dissolvable? That's sort of one of the things that I do. I chew half a tab of carbidopa/levodopa with about 250 mg of chewable vitamin C when I wear off and awaken and want to quickly get back to sleep.

Donzim profile image
Donzim

First, absolutely get tested for sleep apnea...easy finger monitor test done at home. Breathing requires muscular function and that function is impaired in Parkies.

Then consider your meds which may need to be taken on a different schedule if they are excitatory and interfere with sleep times.

Third, remember that although Benedryl works putting one to sleep, it interferes with neuro meds. Not a good idea.

Fourth, the sleeplessness may be associated with the depression/ anxiety mechanism that often accompanies PD. Sleep problems/depression are often early warning signs of PD.

This is what we used: C-pap apnea mask, valerian, melatonin 9mg time released, oral lavender from Integrative Therapeutics, magnesium citrate. My husband had a terrible time sleeping. It was late in the game that we realized what a huge effect the apnea had, both on PD and his athrosclerosis. Suggest you read my other posts.

rhenry45 profile image
rhenry45

Take 15 - 20 mg of Mirtazapine at night and it will cure your depression, anxiety and also gives you great sleep. Since it is a tricyclic antidepressant it will also breakdown alpha synuclien which is a win-win for all of us. I use it and it works great. Highly recommend it.

SKCW profile image
SKCW

Hi,

Although I am still in the research/understanding phase, as my mom has been recently diagnosed, she has experienced great relief from Zoloft (sertraline). She was having these wake-up runs of anxiety which she had never experienced before. After 4 to 6 weeks on Zoloft, she's sleeping consistently well every night and dreaming a lot too. It is my understanding that you cannot take 5 HTP and Zoloft at the same time for fear of serotonin overload. But wonder about that relationship between dopamine and serotonin, does one deficiency automatically skew the other? Wishing you good sleep.

Warm Regards,

Sarah

arwenmark profile image
arwenmark

Last year for whatever reason I went without any sleep at all for four days when I started to have Hallucinations and ended up in the hospital for more than a week. Still took two more days till I finally fell a sleep. As you know going without sleep can be very dangerous

12Maxwell3 profile image
12Maxwell3 in reply to arwenmark

I agree.. it’s awful. What did they do in the hospital

arwenmark profile image
arwenmark

Mostly they did a LOT of tests, I was also assigned a babysitter around the clock They did give me various drugs on top of the MANY that I already take, but not sure exactly what they were. I was very upset at the way I was being treated and did not understand it until one of the nurses let slip that I was considered in a confused state and was on the Mental floor.

I was told going in that I was going for an open MRI and a few other tests related to a possible stroke.

12Maxwell3 profile image
12Maxwell3 in reply to arwenmark

Sure makes a person feel like they’ve done something wrong.

12Maxwell3 profile image
12Maxwell3

Why didn’t they tell you where you were

12Maxwell3 profile image
12Maxwell3

In mental health

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