Morning dystonia

[Connie18]

Does anyone have a solution for morning dystonia caused by levodopa. Someone suggested nepro patch can help. I have to wait to take Sinemet which although causes it also stops it. So I have to wait an,hour or two every morning with this awful till I can take first Sinemet. I was looking for non med solutions people might have found

[park_bear]

What leads you to believe your dystonia is caused by levodopa?

[Connie18 in reply to park_bear]

As well as being told it it is a common problem of long term use of levodopa. Just google it

[Enidah]

It sounds more like the sinemet helps your dystonia. I know that is true for me. When I get that ache in my back where I have the dystonia I know I've waited a bit too long to take my meds.

[M_rosew]

My alarm rings one hour before I need to get up, and I take my first Sinemet tablet (and 1 Rasagiline) . I snooze for another hour by which time I'm ok to get going.

[Connie18]

My neurologist said so

[Bridielena]

Yes. Simply place a pillow between legs.....awkward to begin with but really works.

[jujulini]

are you sure youre not confusing dystonia with dykinesia. long term use of levodopa will cause dykinesias. but levodopa will alleviate dystonia.

[Hikoi]

Connie why do you have to wait an hour or two before you can take your morning sinemet? What are you waiting for?

[Jlloy5]

I wish I had some advice for you, because I have the exact same problem. I cannot tolerate the carb/levadopa all day long, so I also have to wait. I’m on the Neupro patch as well and I still have the dystonia. When I detox from the carb/levodopa, it does go away by day 2.

[Connie18 in reply to Jlloy5]

What do you mean by detox from c/l

[Jlloy5]

Once a week, I dedicate myself to staying home and not taking any c/l except one dose at bed time. Sometimes I can stretch it out to 3 days. I also take a long bath with essential oils and Epsom salt. If I don’t do this, the dyskinesia gets out of control and the c/l requires more to work. After a detox the c/l works much more efficiently and with less at a time. There’s days that I have to take 2 50/100 every 1.5 hours to prevent severe dyskinesia. After my weekly detox, I only need 1 every 2 hours.

[Connie18 in reply to Jlloy5]

You sound abit like me in that you need more Sinemet stop the dsykinisea so you don't have peak dose version but dsykinisea when you are kicking on and off. Have you never been offfered entacapone or the new version opicapone which extends the life of the Sinemet. You sound like you are taking a lot of Sinemet how long have you been diagonosed

How do you manage to cope with - 3 day holiday from c/l can you move ok

[Jlloy5 in reply to Connie18]

You are exactly right. The dyskinesia occurs when kicking in and wearing off. The holiday from it definitely has its struggles, but it’s well worth it. Plus I don’t have to worry about what I eat affecting my medication those days, so I definitely indulge. The Neupro has helped immensely with my movement. I was offered Entacapone last year, but decided on the Neupro patch instead.

[Jlloy5 in reply to Jlloy5]

I’m going on 11 years now and I’m only 44.

[Connie18 in reply to Jlloy5]

I tried the patch but I started to see face in fabrics no it freaked me out. What size patch to you wear and how much Sinemet do you take. I take 100cr every 3 hours with a 50 standard release but its not enough and I take extra 50s all the time. I h ave be en diagonosed 5 years

I so know what you mean about the food thing . I can hardly eat anything and it effects the meds I've lost so much weight. I dream of eating anything I want.

[Connie18 in reply to Connie18]

Oh you have had it much longer than me I am now 57. Though this condition makes me feel about 87!!! You got it much younger than me though when I look back I had symptoms, from my mid 30s

[Jlloy5 in reply to Connie18]

If you ver find a secret to the morning dystonia, please share and I will do the same!

[Connie18 in reply to Jlloy5]

I will definately

[Connie18 in reply to Jlloy5]

Is there any particular reason why you choose neuro patch over entacapone ? Have you ever thought of asking for opicapone now. I know it's yet another med and I'm trying to find a natural way but it only has to been taken once a day so I am going to ask about it with my neuro.

How much Sinemet do you take in a day and do you not find if you have a holiday you want to wee all the time and can you swallow ok not being on or do you find the neuro gets you through. I have tried to have a day off Sinemet but what happens apart from the the movement I find I have a problem with swallowing but a lot of that is dystonia from Sinemet my early morning dystonia starts in the legs and feet but I can walk or shuffle most of it out in an hour or two my problem is more my arms shoulders neck and face, also my stomach which makes it difficult to eat. As it is mainly due to the Sinemet I'm sure if I was to try and stick it out it would disappear but I can't take the sensations I have to go through. Do you find that too much Sinemet effects your voice and do you go off a lot in the day . That is my problem I know I take too much Sinemet but if I need to be somewhere I make sure I take meds before I gonof each time otherwise if I go off i cant get back on for at least an hour.. but then it effects my voice and no one can understand me. Also I just feel crap inside if I take to much Sinemet it's hard to explain. Do you take any meds to get you through the night ? I sleep very poorly as soon as my last cr wears off I'm awake .

I found a way to sort of help dystonia this morning when I woke at 5? I took something very hard in my case my hair dryer and I put it between my knees so it digs in and it hurts a bit. It seemed to take away the the dystonia by distraction and i was able to sleep of and on for another couple of hours . It didn't stop the dystonia but it took it away for a couple of hours

[Sleeplessparki]

Hi Connie, I used to go bare foot in the morning and I would get severe dystopia in my left foot only in the morning. I started putting on shoes to walk around in the AM and I don’t seem to have the problem much anymore. Not very scientific but it worked for me