Levodopa Induced Dystonia

[Parkie-]

Anyone ever experienced Levodopa induced dystonia? (NOT dyskinesia)

If you experienced it first hand, how did you get relief from this specific kind of dystonia?

I am on cl 25/100. Dystonia appeared on affected side a couple of days after starting cl in Feb.

It is different from my "regular" PD rigidity: hand curling up in a closed fixed position as opposed to flexed joints and stiff finger with my regular PD.

I had the same effect first time on cl in 2017 and had abandoned after 1 1/2 month.

Unlike 2017, now taking it with low dose B1 (high dose induced overdose, tried for months) and really wish I could carry on with cl to test B1 longer.

I am non tremor dominant, female, diagnosed in 2017 at age 55. Rigidity mostly on left side.

Thank you

[jeffreyn]

There's also something called dystonic dyskinesia. I'll describe my experience, for those not familiar with this type of dyskinesia.

I was taking one Madopar 125 tablet (similar to cl 25/100) 5 times per day. About half an hour after taking a tablet, my right foot would "arch" up and then flatten out again. This would go on for about one hour. I changed my dosage to three quarters of a tablet, seven times per day, and the dystonic dyskinesia stopped happening.

"What an onerous remedy!" I hear you say. Well, with a couple of adjustments, it is working out fine. I bought a 7-compartment pill container, and I do all the pill cutting at one go (in the evening). It takes less than 5 minutes. It also helps that my Madopar 125 tablets are double-scored, and that I have a good quality pill cutter. Also, using a multi-compartment pill container virtually eliminates the occurrence of missed doses or double doses. I also have 7 alarms set up on my phone.

Whenever I go out, I take a bum bag containing a small plastic bottle of water and my pill container.

I hope that this is of some interest to someone!

[Hidden in reply to jeffreyn]

Thanks, Jeffreyn. Just like the both of you I am having the same issues. Going to see my movement disorders specialist on Monday to get prescribed Rytary.

[TL500 in reply to jeffreyn]

Good idea and it works.

[Parkie- in reply to jeffreyn]

Hi Jeffreyn

Thank you for sharing.

My levodopa induced dystonia does not appear after taking a dose. It appeared a couple of days after starting cl in Feb and doesn't go away, though it may vary intensity during the day.

I had the same in 2017: started a few days after taking the first dose of cl and ended only a few days after I took the last dose, a month and a half later.

Does anyone else out there experience that?

[Motal in reply to jeffreyn]

Jeff. Thanks for putting a name to that constant clenching of my left arm. My neuro prescribed amantadine which takes some of the edge off- but increasingly less.

When you take the sinemet in smaller doses but more frequently, how does that work with your protein intake?

[jeffreyn in reply to Motal]

If you follow the rule that says to take levodopa at least half an hour before a meal, or at least one hour after a meal, then of course this becomes more difficult to achieve when you increase your number of doses per day.

I'm lucky in that I don't seem to be very sensitive to this problem. My dosing schedule obeys the rule, but whenever I've deviated from it, I haven't noticed any negative effect.

[Hidden]

Hi Parkie, I too have the hand curling issues so much so that my brother in law became concerned that I had a stroke! I have given up on trying to manage the dosage like Jefferyn and hopefully Rytary might help. Going to see my doctor for the prescription on Monday.

[Parkie- in reply to Hidden]

Hi Malayappan

Good luck with Rytary. Please let us know if it helps with dystonia.

[Hidden in reply to Parkie-]

Taking Rytary now but results are iffy. In desperation I tried Mucuna Pruriens and it is working great. Need to see if I can combine with Rytary.

Banyan Botanicals Kapikacchu... amazon.com/dp/B00DV00MIQ?re...

[Bluewater123 in reply to Hidden]

I am trying to get my mom on mucana and rytary. I would like to eventually lower her rytary dose while replacing mucana. What dose of rytary and how often were you taking? Through the night too? Have you replaced with mucana? Use in conjunctions?

[verahardiman]

I suffer from very annoying dystonia in my legs. My neurologist claims it is associated with my levodopa levels..both when they are low or high. It is very much exacerbated by any level of stress. After telling you all that, I have found no relief. I am so sorry that I am not the bearer of any good news. It does help to be able to confide in people, who understand

[Parkie- in reply to verahardiman]

Hi Vera

Thank you for sharing. If you ever find relief, please post for us here.

Kind regards

[amykp]

I have dystonia too, not from medication, just because...but my point is: my dr. says it can be helped (a lot?) by botox injections, like every six months or so. Any of you know about that? Mine isn't bad or painful enough to need it yet, but he reassures me that it can be taken care of if that ever happens...

[Agirlandherella in reply to amykp]

I get botox injections for my foot dystonia every 3 months. I found it's not the ideal treatment it's often described to be... it really depends on the skill of the doctor giving you the shots. Even with a skilled doctor, it takes about 2 weeks to really have an effect, and then wears off weeks before the next treatment. Also, when at its peak effect, it can be like dragging a wooden leg around. I'd love some other way of dealing with this.... trying Carbidopa/Levodopa now and it just seems to make it worse!

[Parkie- in reply to Agirlandherella]

Thank you for this info about botox. I was thinking of request it... now , not so sure.

[HeartSong]

I have foot dystonia. It appeared 3 months after beginning c/l. It does stop after my current dose of c/l takes effect. So, I assume it is not levodopa induced. Who knows. The only other thing I have found that helps (temporarily) is when the foot is still and relaxed, I take off my shoes, sit in a chair, and one foot at a time, put it under the chair so that the tops of my toes are resting on the floor. I sit and relax like this for a few seconds then do the other foot. This gives a nice stretch to the tops of the toes, top of the foot and front of the leg. I'm gentle with it and don't over do it. And, I make sure I have something to hold on to so I don't fall out of the chair.

[Parkie- in reply to HeartSong]

Thank you HeartSong.

[Bridielena]

Left foot within 10 minutes of first getting out of bed.

Now disappeared. I have an injection of Exenatide once a week and feel better all over including the disappearance of Dystonia and Dyskenesia .

However I shake more and stuttering has arrived .

I have had PD since

Have been on Madopar since then including 2 capsules of Madopar ER only at night. I feel I have definitely improved even the Black Dog I can keep on the leach.

Disturbingly, I’m finding my spelling of words difficult. Always a good speller but not any more. I recognise the correct way more than knowing it.

I don’t rely on spell check.

If I don’t get any worse I will cope with this interloper. My dosage of Madopar has also declined.

Dystonia was awful. I knew once Madopar kicked in I would be OKbut those first 10 minutes of the start of the day was horrible and dangerous as falling over was there, ready and willing.

[ktbate]

I have dyskinesia in my head and neck area and dystonia in my left leg and foot. The dystonia gets better with c/l however the dyskinesia gets worse with c/l. I am going to Mayo to have DBS to stop the tremors, dyskinesia, and dystonia. Neuro-surgeon tells me it will help with all three. There is hope!

[Parkie- in reply to ktbate]

Thank you ktbate. Good luck with DBS. My neurologist tells me I am not a good candidate for DBS because I don’t respond well to levodopa...

[Agirlandherella]

Hello - my first symptom of Parkinson's was foot dystonia, back in 2017. I was on dopamine agonists until recently, when my doc thought it was time to switch to Carbidopa/Levodopa. Soon after I started taking it, I my dystonia really started bothering me even more than it had been.

I realized the dystonia spasms were getting stronger, and asked my doctor if this could be a side effect of the C/L. He replied that on the contrary, C/L should help the dystonia, and advised me to take a stronger dose. However it's just gotten worse. The only thing that seems to help is a gin and tonic at the end of the day :)... It's good to know others have the same experience and it's not my imagination!

[Parkie- in reply to Agirlandherella]

No, not your imagination...

[Phero in reply to Agirlandherella]

Hi, just out of interest what brand are your C/L and what colour are they?