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levodopa trial


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#1 trollo

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Posted 26 December 2012 - 11:35 AM

Hello Dr . I d like to ask you your opinion on a L-dopa trial i had . Despite my neurologist was skeptic i asked him to let me try l-dopa to see if my musician s dystonia could respond to it because i known a lady who is a french horn player with embouchure dystonia who founds out to be l-dopa responsive. I know that generally Dopa-responsive dystonia is considered different from musician s focal dystonia but i wanted to try. As expected after assumed 25 mg (is it possible??or maybe it was 100mg levodopa and 25 carbidopa??) of levodopa-carbidopa i didn't felt any improvements on my dystonia, but it s not this that i find strange...
What i find strange, and what i d like to have your opinion about, is that i didn't have any levodopa adverse effects that i heard are common during levodopa trial like low pressure, sleepiness, nausea etc... more considering that i generally suffer of mild low pressure, my average pressure is about 95-60 and i always suffered from vertigo when waking up from a sitting position... even the Dr was a bit scared about any possible problem with lowering of blood pressure due to my usual low pressure levels...

Well it was like having taken just a sugar pill for me.

Now i was wondering this: if my dopamine levels were normal, taking l-dopa shouldn't i have risen my dopamine levels over the normal range causing all those side effects due to dopamine and l-dopa like low pressure, fatigue and dizziness?? Consider that in these days i was also debilitated because i got fever and i suffered of insomnia during the last 2 nights... in fact i was a bit scared as well but i absolutely wanted to try l-dopa and didn't speak about that to the Dr....
I must say that i'm assuming daily 100 mg of vit b6, could vit b6 have impeded the levodopa being effective??? I read on the net that it usually does it...

#2 Dr. Okun

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Posted 26 December 2012 - 09:23 PM

It is not unusual for people without PD to report no side effects for low dose sine met or replacement therapy.

We generally monitor blood pressure and side effects and our trials go to 2.5-3 tablets of 25/100 3 or 4 times a day (we work up to this dose slowly and monitor side effects). Also we slowly taper off of sinemet as sudden discontinuation can result in issues.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#3 trollo

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Posted 27 December 2012 - 08:30 AM

It is not unusual for people without PD to report no side effects for low dose sine met or replacement therapy.

We generally monitor blood pressure and side effects and our trials go to 2.5-3 tablets of 25/100 3 or 4 times a day (we work up to this dose slowly and monitor side effects). Also we slowly taper off of sinemet as sudden discontinuation can result in issues.


Doctor, i have not Parkinson but musician's dystonia (also known as 'writer's cramp') who is a form of focal dystonia..

#4 Dr. Okun

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Posted 27 December 2012 - 05:25 PM

Yes I am aware. It is not uncommon to titrate up sinemet in muscian's dystonia and look for a response. Rarely it may help. Usually it does not.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#5 trollo

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Posted 27 December 2012 - 06:08 PM

But do you think than just one pill for a day is enough to determine if the l-dopa help or not??

#6 Dr. Okun

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Posted 28 December 2012 - 07:54 AM

definitely not. Our trials typically take 4-8 weeks and work up to 2.5-3 pills of 25/100 taken 3 or 4 times a day. Generally most experts like to get the total dose above 1000mg of levodopa a day, and 2.5-3 tablets per dose before giving up. Tablets are weaned slowly over many weeks if no effects (to prevent withdrawal).
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#7 trollo

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Posted 01 January 2013 - 05:37 PM

Oh. This is quite problematic then because i don't know how to ask my neurologist to try again, he sure will get offended that i bring into question his previous trial methodology, as he looked persuaded that just a pill would have been enough to exclude any doubt... and i can't get l-dopa without rx....
"Our trials typically take 4-8 weeks and work up to 2.5-3 pills of 25/100 taken 3 or 4 times a day." Is there any risk from this?? There is risk of side effects like tardive diskinesia or other long term harms with such a long trial????

#8 trollo

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Posted 01 January 2013 - 05:41 PM

And what about Pyridoxine?? Is it possible that such vit b6 high doses impede l-dopa effectiveness??

#9 Dr. Okun

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Posted 02 January 2013 - 09:21 PM

You should ask your neurologist about pyridoxine but I doubt it is playing into your issues.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#10 trollo

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Posted 13 January 2013 - 08:46 AM

Doctor i'm sorry if i go off topic, but i recently found out to have very low vitamin D (11,6 ng/mL) . Do you know if vit d deficiency could lead to dystonia issues???

#11 Dr. Okun

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Posted 13 January 2013 - 12:20 PM

It has not been carefully researched, however many patients with movement disorders are turning up with hormonal and vitamin deficiencies.

It would not hurt to see your primary care doc and to get replacement.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#12 trollo

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Posted 14 January 2013 - 10:06 AM

Thanks, i'm doing it

#13 Dr. Okun

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Posted 14 January 2013 - 11:40 AM

Keep us posted.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips




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