Polymiositis similar treatment carbolevadopa

Hi everyone

My name is Diane and I was diagnosed with polymiositis

7 years ago following a head injury due to a bicycle accident. I have been on carbolevadopa 50 200 cr 2 tablets and carbolevadopa 25 100 twice daily total or 4 doses daily mornings 6am 12pm 4 or 430 pm 730 or 8 pm. My problem is the wearing off and down time I cannot plan any activities because I am useless until it kicks in. I am a music teacher, in 2 groups at night, meeting start at 10 am, nyssma judging March through June piano and voice starts at 9.my 6 am is excellent. I take the next dose with no down time. My 11 am dose is very good,lasts about 31/2 hrs 45 minutes to kick in, 3 pm is the same but the night time dose doesn't kick in for 2 hours. I am very uncomfortable at choir rehearsal, no breath control and it lasts only 2 hrs. I am also a basket case waiting for the dose to kick in.when I go to sleep I wake up 2 hrs later Vera uncomfortable, stiffness and tremors in my right side which is my stronger side.I have tried taking another dose at bedtime seems to help. I have a very good neurologist. He added entacapone 6 weeks ago and it doesn't seem to help. Any suggestions on how to deal with night time successfully? Thanks

Diane

4 Replies

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  • I take C/L CR 50/200 3x daily and that keeps me covered. So you could try one more dose of the C/L CR 50/200 and hold off on the C/L 25/100 immediate release unless you need it.

  • Thanks willooking try

  • The following tool allows you to visualize levodopa levels:

    parkinsonsmeasurement.org/t...

    You enter details of your doses, and the program draws a graph of expected plasma levels over time.

    You may also look at your diet: protein in your food competes with levodopa.

    John

  • Including a couple benign but useful natural supps in your nighttime med regimen may lead to better sleep i.e., 5mg of 'controlled-release' melatonin (I use 10mg), 150mg of L-Theanine ('Suntheanine' may be best if available), and 100mg of 5-htp. All of these serve to facilitate sound sleep (works wonders for me).

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