Parkinson's Movement
13,240 members11,837 posts

No sleep!

About 8 months ago, rather suddenly, my husband started have sleep issues. He is able to sleep only for stretches of about an hour and a half at a time. He can't get comfortable ... everything bothers him, the sheets, his clothing, can't find a comfortable position, etc. He is terrible fatigued and miserable. His quality of life, cognition and movement is so negatively affected. He has a movement disorder neurologist and a neurologist who specializes in sleep issues. He has used Klonopin, Ambien, Trazadone, Neurotin, Melatonin, CBD, THC, herbs, vitamin supplements etc. Nothing helps. We are so discouraged.

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My neuro prescribed me Amitriptyline, a tricyclic used against pain in low doses, and an antidepressant at higher doses.

It is also under testing as a Parkinson's retardant.

Does wonders for me.

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Thank you. He has had low dose amitriptyline, without success. But so far, no one has talked about or ordered an antidepressant. A lot of folks on this site have indicated that Paxil, Zoloft and Remeron have been helpful. I would reeally like to have him try one. I will bring that up to his doc again. Which one do you take, and what is the dosage? Many thanks for taking the time to respond. It's nice to know someone cares!

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I take Laroxyl (Amitrityline). Began very slowly, 1 more mg each day. It worked at 70 mg.

My neuro wanted me to go over 75 mg (the pain killer dose) up to 150 mg (the antidepressant dose) but I am satisfied with the present dose.

By the way, I tried Zoloft and Prozac in the past and had to stop within a week, due to unbearable side effects, headaches mainly.

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He has 25 mg amitriptyline... he took 1 tablet at bedtime. Didn't seem to help after using for about 10 days. What dose did you start at? Maybe we should be more persistent and work up slowly to a higher dosage? Give me an example of the time frame to get to an effective dose. That will help me to address it with our neurologist. Thank you for caring.

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No problem Mjm, as far as you ask a real doctor. I was started at 1 drop (= 1mg) and one more drop until 30 drops, taken at bedtime. Then I was prescribed 25 mg tablets, plus my usual "ladder" i.e. one more drop each night until 50 mg. I stopped at 65 mg (two tablets + 15 drops each night. He wanted to go higher but he acknowledged when I told him I was OK.

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I'm sure all of us here care. You and your husband are in my thoughts and my prayers, Mjm012649

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What are his current medications?

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For sleep, 150mg Trazadone and 6mg Melatonin. Others, Sinemet, Lithium and 400 mg magnesium supplement.

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You may try higher dose magnesium. With me MagneMarine works perfectly..

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Get tested for Borrelia (Lyme) and coinfections Bartonella and Babesia. These infections can affect the brain. They sure did it to me. I couldn't sleep either. Pounding heart, anxiety, etc. etc. It took two years to be diagnosed. You will need to find a Lyme-literate doctor (LLMD). It is a specialty and few MDs are well trained on the subject. Go to lymedisease.org as a starting point. You will find all the links you need there. There is no simple blood test for these infections, yet. Diagnosis involves medical history, symptoms, where you live, testing of blood and/or cerebral spinal fluid. Seach the web for the movie called "Under Our Skin".

Once I was treated with antibiotics, my sleep came back. It took a while. Oh, there was something else happening, too. A friend heard me snoring and gasping one night. She said I should get tested for sleep apnea. I don't fit the typical profile for apnea (overweight) but she said her dad had it and she knows what it sounds like. So I went to Stanford University's sleep center and lo and behold - apnea. I ended up with an Rx for a CPAP machine which I hated wearing at night so eventually, I got an 'oral appliance' which is a specialized kind of retainer or bite plate that repositions my jaw so that my tongue doesn't fall back into my air passage-way and block it.

I have a dual diagnosis of Chronic Lyme Disease and Parkinson's Disease. The two seem to be interconnected. I know of people who have had chronic, untreated Lyme morph into another neurodegenerative disease such as MS, ALS or Alzheimer's or some auto-immune disorder. After about 15 years of my own research, facilitating two Lyme support groups in the SF Bay Area and working with about 10 doctors and many specialists, I think it's likely that there is a connection between chronic inflammation / infection and PD. After all, PD is 'ideopathic', which means they don't know what causes it. And, if left untreated Lyme disease can get into the nervous system and start causing it irreparable harm. Late stage, neurologic Lyme often has the hallmark signs of PD: tremor, anxiety, neuropathic pain, speech issues, 'brain fog', etc. I have a blog which is mostly about neurodegenerative diseases and Lyme disease if you are interested in some more reading: bobcowart.blogspot.com

-Bob

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The appliance for stabilizing your jaw. Tanner appliance?

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HiMj

I have exactly the same sleep problems.

I take all the prescription drugs .like you no good.

I don't want to encourage anyone but the only thing that does me good is a bottle of wine or a few beers.

I sleep all night. End of chat!!!

What am I gonna do affect my health?

As if .

m-h1

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Hi. Sometimes quetiapine can be very helpful. He can give it a try.

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Hi, my wife has same problem and very bad leg cramps. Can not adjust pillow or turn in bed by her self. We are up many nights all night long. I give her magnesium and calcium seems to help. Docs have given various sleep pills with no help. We take enough drugs and do not want more. It has been viscous circle. Has low blood pressure from sparky drugs, carbo Levo and pramipexol. Takes thyroid med, depression med, 2 low bp meds and hit d 3. I know what you go through, hope gets better.

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If it helps, I have not been able to sleep for an average of three to four hours a night since 1974, without taking sleeping pills. Whatever sleeping pills I took ceased to work after a few weeks.

What I have done is, in order to avoid the stress of tossing and turning, I get up and either read a dull book or work on my computer. When I get tired I go back to bed and sleep for a little longer.

Try it!

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