Levodopa : Has anyone tried this to... - Functional Neurol...

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Levodopa

MONIREN profile image
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Has anyone tried this to manage FND symptoms? My gp gave me a 7 day trial, by 3rd day my jerks had decreased, which was my main concern. Just not sure of adding another med to my long list of medications. Or whether more symptoms will decrease. Would like to hear from others who had success. Take care. Moni

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Van604 profile image
Van604

Hi Moni. I was put on it at the beginning, when they thought I might have Parkinson's or dopa-responsive dystonia. I had a severe head tremour and it completely went away. It has never come back, even though they took me off it 3 years ago, when they changed my diagnosis to FND. I do still have other FND symptoms now though, weakness, fatigue, dystonia, speaking/swallowing problems and occasional paralysis. Maybe I would have been better to stay on it.

MONIREN profile image
MONIREN in reply toVan604

Thank you for your fast response, just helps with my decision. I've been doing some research, but it helps hearing from others.

Brokendeer profile image
Brokendeer

Hi I was on a 2 week trial of Sinemet Plus (same as Levodopa) , for suspected Dopamine- Responsive Dystonia DRD (before my FND diagnosis).I had marked improvement of movement symptoms i.e none, for about 6 hours a day, but got told if not 24 hrs a day then not diagnosis of DRD? So was taken off those meds.

The FND disorder I still have though did change in format from that point; so changing the brain chemistry briefly was beneficial - I got to identify triggers better rather than total full on daily random issues. Other FND Sufferers on this forum have said that dopamine drugs had benefited them too.

What I will say is both Sinemet Plus and Levodopa are very dangerous long term drugs, which are ill advised if not essential treatment. These drugs can cause terrible side effects eventually, and lose their effectiveness too. Parkinson's patients use them as late in their condition as possible.

Good luck, look for the calm in the Storm!

MONIREN profile image
MONIREN in reply toBrokendeer

I don't have Parkinsons, but on low dose, will discuss levodopa with gp tomorrow, whether my improvement warrants the risks. I've noticed my walking has improved as well. Thank you for your response. Take care. Moni

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FND_PartnerAdministratorFND Hope AustraliaFND Hope UKGroup AdminFND InternationalVolunteerFND Hope

Others have mentioned Sinemet as being helpful. Along those same lines, Ropinirole (Also known as Mirapex) commonly used for restless leg has helped some patients in an extended-release dose. Others have not had a favorable response.

MONIREN profile image
MONIREN in reply toFND_

I left decision to gp, as I have other health problems and on a lot of medication. She was happy it has helped already, she will not increase the dosage and leave it on low dose. See how long I benefit, hoping to see a different neurologist in the new year.

MONIREN profile image
MONIREN

Just an update. Saw another neurologist, she seemed doubtful that I couldn't control my jerking. She recommended stopping Levodopa and offered no solution, just handle it. The Levodopa had started to lose its power, the very much hated jerking came back. This was after only 3 months, but I'm on lowest dose. I was very upset when I saw my gp, she has left the decision to go off Levodopa to me. She did suggest pausing Levodopa for 2 weeks, during that time, it wasn't markedly different. But going back on it, I feel less like I'm a wound up spring. Being on so much other medication for other health problems I think I will stop and try more relaxation. Thank you for listening to me . The support here is amazing. Take care. Moni

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