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Opicapone - anyone had this new COMT type treatment

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elegant fowl

Hi all

I'm interested to read about reactions to Opicapone. I have been using it for 18 days now and I'm loving it. I was struggling with wearing off both during the day and at night. This was disrupting both work and sleep. It has really made a difference to me.

I'm sorry to hear that your GP won't prescribe it GG. If my experience is anything to go by it's well worth it

EF

Jules77

Hi EF,

Just an update on Opicapone. It's definiely reducing switch-off time and severity of switch-offs. But there is no change or maybe a slight increase in painful Distonia. 

The worst thing is these headaches, they seem to be getting worse. I describe them as narcoleptic, because they make feel as if I'm just about to go under from an anaesthetic. They can last up to two hours. I'm don't think it's anything directly to do with the Opicapone as they have been gradually getting worse over the last two years as Madopar has increased. I wonder if its something to do with increased dopamine in the brain causing overactivity. I just can't to seem to shut down. It was so bad early afternoon I seriously considered A and E..

Have you  had any problems with headaches EF?

Am seeing PD/Elderley Person specialist on Tuesday and I'm going to ask for a scan. He is not a Neurologiist. My Identical twin died from a massive stroke two years ago caused by Cerebral Amyloid Angiopathy, and I'm just wondering (as an average male hypochondriac) about that. That's why I'd I like a scan.

Would appreciate informed views.

Regards,

Jules77

elegant fowl

Hi Jules

Thanks for  your very detailed reports on your experience with Opicapone. I have been lucky not to have suffered many side effects from any of my meds apart from a dopamine agonist induced impulse control problems. I'm happy to say that  I don't suffer from headaches. The most significant effect I notice is the massive reduction in wearing off and a kind of euphoria which is consistent with lots more dopamine sloshing around.

I hope you find some relief from the headaches.

EF 

Jules77

Hi all,

just a brief report to say that for me Opicapone has definitely reduced switch-off time.

Downsides are a slight increase in dyskinesia and severe headaches which may not be linked.

Jules77

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