[Laurie]

I had sleep problems for years before getting PD. I started using Clonazepam over a year ago, 1/2 mg. Then I found myself waking up in the middle of the night and not being able to get back to sleep, so my doctor was OK with me taking another 1/2 mg then. But I was then so fatigued during the day, I’d take long naps in the day time. Then I fell and broke my hip. I wasn’t able to take pain meds after the surgery because they made me nauseous, so I toughed it out with ice, rest, and clonazepam for three months. Now I’m over the pain of that and with the help of physical therapy, able to walk and move better. What I didn’t realize was that the clonazepam was building up in my body to the point where I was like a zombie. One day I was unresponsive to my husband and he thought I might have had a stroke. He took me to the hospital. My eyes were glazed over and I couldn’t speak. But a CT scan, and other tests showed nothing so we figured I over medicated myself, may have taken more drug than I intended in the middle of the night. Now I’m weaning off slowly on 1/4 mg nightly and use CBD oil in the middle of the night if needed. My doctor will monitor the amounts I’m going to take to wean off completely. He said it is one of the hardest drugs to get off of, easy to build tolerance. It was really scary. Friends and family were worried about me because I was so out of it and I didn’t realize it. I’m sleeping better and glad I’m going off of it!

[Laurie]

I’ve had chronic insomnia for years before I was diagnosed with PD. Then when I got the diagnosis I was very anxious and never had that level of anxiety before. I fell off my bed one time and landed on the floor while dreaming I was running (another PD symptom). I started taking Temazepam but my Dr said that Clonazepan would work better for me as it helps support GABA neurotransmitter and it helps with the jerky movements and falling when sleeping. So I started with .5 mg. That has worked well but after awhile my body adjusts to the amount and now I’m on 1 mg. So you build tolerance and it is addictive. I don’t feel groggy, and I’m no longer falling off the bed, and I don’t have anxiety. I just hope I don’t have to keep taking more.

[Laurie]

My neurologist gave me this recipe that is totally natural and works like a charm:

prune juice, applesauce, bran or flax seed

mix in equal amounts or to your taste – you can play with the amounts

take twice a day

After a lifetime of constipation this is the only remedy that’s worked!

[Laurie]

This is not one of the most challenging but I wanted to share it because it works. Every time I would yawn, a muscle in my throat would cramp up. I thought I was getting a heart attack. My Doctor said it was dystonia. I rub magnesium cream on my throat every day and it takes care of it, including if I get cramps in my legs in the middle of the night then I get up and rub my legs with it. It works, so I’m sharing!

[Laurie]

Hi Omer,
Any stress of any kind will make my PD symptoms worse so I can relate to what you are saying. Surely Covid is a stress on the system. As for his mood, getting on a L-Dopa drug could help him with more energy and that would help with less napping eventually and a better mood, but he probably needs to nap and heal now. I was on Azilect at first and it didn’t help much (it circulates the dopamine one has in the brain, but if you don’t have much of it to start then it doesn’t do much) so when I started L-dopa (in the form of Rytary) along with the Azilect, I felt more energy, less fatigue. But I’m 72 and still have to keep it simple. FYI, I was afraid to take L-dopa because the research says that when you keep getting used to it, eventually it won’t work any more and you have to keep increasing it. But my neurologist said that is old recycled research from the 80’s and 90’s that it will only work for 3 – 7 years and wishes we would all stop researching on the internet which doesn’t have the most accurate, up to date information. He says it depends on how it’s delivered now and people will respond better for a longer period of time.

[Laurie]

I’m on a low dose of Rytary for a month now combined with Azilect that I’ve taken for 10 months after I was first diagnosed. I have itchy skin, a dry cough, runny nose (could be pollen allergies), more constipation than I originally had. It didn’t help my tremors, but has helped me with improving my energy level which was terrible before.

[Laurie]

Ron and all,
Addendum….My hand tremors calm down when I deeply rest, even with slow breathing/meditating and at night in bed when I sleep. Other times I’m tremoring, and I just got on Rytary last week so I hope it will help. So far not much for tremors but I do have a little more energy and better mood.

I would be interested in others’ experience with Rytary and how long it took to get into your system and help the symptoms, keeping in mind we are all different. Gerald, it sounds like you are on it because the dose you take is 5 hours part, like what I have to do.

[Laurie]

Hi Ron, thanks for mentioning Taopatch. I never heard of it and looked it up. Wow, really pricey. What level are you using? Anyone else have any experience with it?

As for melatonin, I used it for years after having breast cancer and it is supposed to be good for cancer prevention. I haven’t had a recurrence and it did help with sleep, but I often had a hangover from it. You are only supposed to use the lowest dose (1 – 3 mg for best results). But when I started getting PD symptoms (last Fall) it made my tremors worse as does any caffeine. But that’s just me and everyone is different. A doctor said I probably became allergic to it because I used it for so long. So I stopped using it and use Clonazepam for sleep and that works great for me.

[Laurie]

Thank you, Barbara..  That sounds like a good study.  What were the symptoms that indicated it was time to start on the medication? Was 18 months the length of time for everyone?

[Laurie]

As a doctor, maybe you can shed light on my dilemma. See my note below. I become tolerant to one amount and then I have to increase. Now I’m on 1 mg after starting on 1/2 mg. months ago. It’s very helpful for my anxiety, sleep and movements, but I’m afraid I’ll have to keep taking more eventually.