The fateful "off" moment.

[Fed1000]

When they arrive it's like hitting a wall. You become a non-person. It's as if all the symptoms , which until then had remained compressed inside you thanks to Levodopa, as if by magic they come out to shout all their strenght and turn you into a zombie. There is no gradualness. It is necessary to become good strategists of oneself. Does anyone feel the same way?

[ws50]

Yes it sucks - how long do yours last? how do you get through them?

[b5p10 in reply to ws50]

I have heard about “off” times and wondered what this meant but I think recently I have, much to my frustration, discovered. Within four hours of taking the prescribed Madopar of 100/25mg I feel totally exhausted, trembling and near to tears. Is this what is meant by “off” times?

In the past my neurologist chided me for taking an extra Madopar in the night (he has subsequently changed it to a slow release version) so I have tried to contact him to ask permission to increase but he is a busy man and I am still waiting for his response and therefore taken matters into my own hands and increased the day time dose.

[Gallowglass in reply to b5p10]

Be a polite but squeaky wheel. Maybe another person in the practice (nurse) can help?

[Fed1000 in reply to ws50]

Hi, at the moment my "offs" last up to 25'/30' after taking the next dose of levodopa. How do you overcome them? Only with levodopa (in my humble opinion, I'm not a doctor) as long as it works.

[Pivouanne]

Bonjour , c est exactement ça , et vous le dites très très bien . C est pour cela que j ai du mal à supporter qu on me dise :" oh , mais cela ne se voit pas " ....., on le sent ,on le sait que la bête est tapie en nous et guette le moment .Dans le même ordre d'idée, le 1er comprimé du matin me donne l impression d être une poupée dans laquelle on met des piles pour la faire exister

[Gallowglass]

For me the Carbidopa Levidopa plus entcapone works for 2 hours, starting about one hour after taking it. So most of my day is off periods

[realk in reply to Gallowglass]

just understand properly - you have to wait for levodopa to kick in 1 hour and after it works for you for 2 hours? so you take a pill @9 am it starts working @10 am till 12 midday -you go off, take @12,.next dose wait till it works @ 1pm..etc?should definitely incrase the frequency from every '3'hours to every 2....there is no point to use the levodopa and stay off most of day... try to disolve CL in water to kick in faster and have more control over it ....no medical advice.....

[Gallowglass in reply to realk]

It was way worse before adding entcapone, about 50 minutes on. I’ve actually dissolved CL in my mouth with no improvement. My latest strategy is no food (except meds and supplements) till 4 pm. It seems to help extend the on time.

[realk in reply to Gallowglass]

disolve it in the 100 ml of warm(not hot)water ideally with table spoon of apple cider vinegar

[LagLag37 in reply to realk]

Be careful taking too much though. I’ve found less is better sometimes. During a very stressful time in my life I was taking 13+ C/L and it put me in bed for almost 4 months. I’m now down to 5/day. 🥊

[LagLag37 in reply to Gallowglass]

Everyone is different but Entacapone made me worse . It worked a little but dyskinesia and balance were a lot worse. 🥊

[Nuthatcher]

Absolutely.

[enjoy2013]

Hello,

I recommend to try opicapone, a once-daily entacapone. For me it makes a significant difference. I used to think it didn’t, but when I stopped it was like opening the gate of hell. I also recommend you have a bottle of mardopar orally dispersible and sinemet CR (controlled-release). The 3 drugs I named are on prescription only. So you have to ask your doctor. If your doctor is not helpful, are you able to change doctor?

It is cruel to leave a patient like this!

Other ideas:

- exercise, exercise, exercise: it improves your response to L-dopa

-go out, no matter how hard it is, even artificial, fake good mood helps

- B1 therapy: check on this forum

- mannitol: check this forum

- do you sleep properly? Tackle any lack of sleep

- lookout for food interference

- Sleep and slow ineffective stomach are the biggest killers in terms of fluctuations

- tips: acid gazous drinks help to absorb L-dopa but for many reasons it’s not a long-term solution because it literally will melt your tees and you need them to eat. In addition, they usually come with sugar. Healthier solutions are vitamin c and vinegar…