Rytary: Has anyone experienced insomnia... - Cure Parkinson's

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Rytary

Beckey profile image
23 Replies

Has anyone experienced insomnia, depression and intense anxiety with Rytary? Does it go away? I've been taking a "starter" dose for several days at bedtime.

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Beckey profile image
Beckey
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23 Replies
Pelley profile image
Pelley

Is this the first anti depressant you’ve been on? The same has been suggested a few times as well as offered to me. I am hesitant to start down that path. Trying everything I can think of to avoid it as a matter of fact.

Juliegrace profile image
Juliegrace in reply to Pelley

Rytary is not an antidepressant. It is a timed-release form of carbidopa/levodopa.

Pelley profile image
Pelley in reply to Juliegrace

That reply was a 16 yr PD fog...... sorry

Enidah profile image
Enidah

Hi Becky, I have never taken rytary but I did have that side effect from the generic extended-release C/L. It was very unpleasant and did not go away until I quit taking the meds. I'm very glad you brought this up because I've never heard of anybody else having that side effect and I was wanting to try Rytary at some point so now I will be prepared as it may affect me as the other one did.

in reply to Enidah

My wife has been on Rytary for over a year and has not experienced the side effects you mentioned. She takes 3 capsules every 7-8 hours and has very strong results in the morning but the afternoon dose results in about 60% energy level compared to the morning. She takes her last dose at bedtime and sleeps well, but on occasion she wakes up early needing her first dose sooner than normal. I have been told this can happen as Rytary is ER and sometimes gets released into the system on uneven timing. It has been a savior to us versus taking 25/100 sinemet every 2 hours. CL ER didn't work for her.

Pelley profile image
Pelley

Becky : sorry about my 16 yr PD “fog”. What I was thinking is my body’s response to The Sinimet CR which was far less than favorable for many reasons. I am so used to waking at 3AM and dosing with my normal 25/100’s X3. It’s a crap shoot as to getting back to sleep sometimes but it is what it is right?

LAJ12345 profile image
LAJ12345

My husband found Hardy’s daily essential nutrients stopped his chronic anxiety. Sorry to those who find me repetitive!

CaseyInsights profile image
CaseyInsights in reply to LAJ12345

I for one do not think you can over emphasize this!

BUSHPILOTS profile image
BUSHPILOTS

I've read elsewhere that Rytary can increase anxiety

etterus profile image
etterus

I have been on Rytary since it became available. Prior to that I had a miserable time taking C-l dopa every 2 hours which meant I was not having any time to eat a meal. The extended release was not effective. I now have 4 hours between doses. I don’t have anxiety issues with Rytary due to it’s ability to effectively manage meals.

JerMan22 profile image
JerMan22 in reply to etterus

I've had the same results.

lmtwa profile image
lmtwa

Hi Becky

I am PWP dx about 4 years ago (I morphed from ET to PD which most said couldn't happen :) - I tried everything with mixed (mostly negative - results) - I gave up trying - By a stroke of luck I was pointed to a Neuro in Bethesda (I live in FL) and he put me on Rytary - almost a years ago. My wife would tell you that the results have been significant! Coupled with being in Rock Steady Boxing - for Parkinsons - (a wonderful experience) and Rytary - 2x (36.25 - 145) 4 times a day plus Rasagaline 1x , Symptoms have gone to a minimum (some feel like they have reversed). Anxiety? No - Depression? No! Insomnia? - not usually - but dream activity has increased - and occasional nighttime "walking". BTW daytime exercise (fast walking 3 x a week - 2 miles) (RSB 2 or 3 x a week) is really important. And if you are not familiar with Rock Steady Boxing - find a group near you.

Davewt47 profile image
Davewt47

My husband was disgnosed with PD about five years ago. The last six months have been a downward spiral. He has been on Rytary for four years now. He’s not sleeping well, is very agitated early morning and evenings. He takes Rytary 4x a day . He’s freezing a lot and not able to walk for very long without sitting down! Anyone have any suggestions!

CaseyInsights profile image
CaseyInsights in reply to Davewt47

It’s impossible to give any suggestions with that limited background. But is definitely time to have a neurologist reassess his medication regime.

Ep0522 profile image
Ep0522

Haven’t experienced that Becky, but only took it a month and may be causing my tremors to be worse. Anyone had that experience?

Fenian5 profile image
Fenian5

I have been on Rytary for three years; 2 in the am, then 1 at noon and 1 around 5. I have not experienced the symptoms you are having. I also take Azilect and Mirapex ER, along with 1 low dose clonazapam at bedtime. I do act out my dreams and talk a lot , according to my husband, I do chair yoga and Rock Steady Boxing. I was diagnosed in 2007 and other than an unsteady gait, you wouldn’t know I have PD

SCT25 profile image
SCT25

F

PDGal4 profile image
PDGal4

Also on Rytary for almost 3 years. I take 2 x 95 mg, about every 4-4.5 hours, sometimes 5 hours, 4 times a day. Not a doctor either, but it sounds like your initial dosage may be too high. The first doc who put me on Rytary had me on the highest dosage capsule, can't recall dose, and it made me speedy crazy. I stopped after a few days. New doc started me on a lower dosage. He says it takes the body several weeks to adjust and to make changes slowly.

I take my last dosage around 9.00 p.m. and go to sleep around 11.30. I did find taking Rytary at bedtime kept me awake. Hang in there if you can; like others here, C/L was lasting me only 1.5-2 hours. I do supplement 1/2 C/L 3 times a day between Rytary dosages. I think I have a faster metabolism so my body processes levodopa faster.

Intrepid200 profile image
Intrepid200

I have been taking Rytary since 2018 and the only thing I noticed was it caused me to visit the ER as my heart was acting weird it kept my body loose and relaxed also affected my speech

It might be helpful to keep a food journal for a few days. The Rytary website will advise that fat and protein consumption may delay effects. As a result, you may have increased your carbohydrate consumption. Levodopa can raise blood sugar levels and if you eat sugar or carbohydrates, it raises even higher. If you were anxious anyway, sugar and levodopa seem to magnify it. Too much levodopa feels worse to me than not enough. Knowing when and what to eat is crucial.

Do you notice an increased sensitivity to sound and light? I can tell if I have too much sugar and levodopa because my ears start ringing and my eyes hurt.

Beckey profile image
Beckey in reply to

"Too much levodopa feels worse to me than not enough. " YES!

Bill55 profile image
Bill55

I have been on Rytary for 4 years. No adverse symptoms. Currently 4 times a day x 2 x 145 mg. Generally effective, but not always. Anything more and dyskinesia. I also work out 5 days a week- so important. Also take Amantadine 100 mg twice a day.

Best wishes

Beckey profile image
Beckey

I feel like I'm acclimating to Rytary. I had a bad response to Sinemet. I had a good response to Dopa Mucuna, although in recent months it seems like it has become much less effective. I'm feeling good about Rytary. Thanks everyone for your feedback -- super helpful as usual!

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