Dyskinesia control

[GalinaBlanca]

Hello! Could you please give ideas how to control dyskinesia from long term levodopa usage?

[Juliegrace]

Do you have dyskinesia or are you concerned about getting it?

[GalinaBlanca in reply to Juliegrace]

My father has been using madopar for a couple of years but it’s now that dyskinesia is starting to develop really fast..

[condor39]

As Parkinson’s progresses, it becomes a balancing act. Increase the Levodopa and get the side effects. Reduce the dose and the Parkinson’s symptoms are worse.

Levodopa has been blamed, but I suspect it is the progression of symptoms which the Levodopa cannot control..

This is important as a lot of patients delay starting Levodopa as they think it will only work for a time.

[PDGal4]

I have found meditation and yoga to be somewhat helpful. Always a balancing act between med dosage alleviating symptoms and causing dyskinesia. I am at my worst when my body is still too long, like driving, sitting at my desk and working on my computer.

[OREOLU]

Hi GalinaBlanca,

Some doctors recommend DBS to control the symptoms of PD,while you reduce the drug,Levodopa.

[ladypeanut]

About a week ago, my husband started to work with Dr. Laurie Mischley of Seattle Integrative Medicine. She has him starting on a protocol to tackle his dyskenesia, which is very difficult to watch much less feel, and we also discussed his dosing with C/L. Perhaps reach out to them to learn more as each person's expression of the disease is just as individual as the person. There may be more you can do with diet, supplements and dosing before moving to DBS - at least this is our hope..

[GalinaBlanca in reply to ladypeanut]

Yes, Dsb is not in our list..Is your husband getting improvement?

[ladypeanut in reply to GalinaBlanca]

It is still very early to tell, since we just began working with Laurie . It was clear to her that my husband was over-medicated, as the motion of his head and his facial expressions denoted dyskenesia, which we did not even realize, along with daytime sleepiness and extreme fatigue. He was not functioning to say the very least. We went to her because of the crazy and strong dyskenesia in his arms an legs - very disturbing to watch much less feel. With an adjustment in diet, spacing out his C/L to no more than 2 tabs four times a day at 4 hours intervals and the introduction of liquid DHA, he felt much better for the previous 5 days. However, on the sixth day, he was back to not functioning.. Today, we were told to revisit the dosing again, since the daytime sleepiness has returned, along with the extreme fatigue. We will try to cut down the dosing to 1.5 tabs beginning this evening and see if there is an improvement. I can keep you posted if you would like.

[kuchee in reply to ladypeanut]

Hi!

DBS is new in my list. I would appreciate to have its updates.

Thanks in advance.

[ladypeanut in reply to kuchee]

At this time, we are leaving DBS as a last resort. The rewards have not been so clear cut and with my husband's enormous sensitvity to changes in any modality, the risk far outweighs the rewards for us at this time. It appears to be another way to manage symptoms and not yet a cure so we will sit tight for now and continue to watch...

[GalinaBlanca in reply to ladypeanut]

That’s how we feel too! Please, let’s keep updated!

[rhyspeace12 in reply to ladypeanut]

A woman in my husband's PD support group had DBS. She has had a horrible time since them with increased tremor. It turned out that she is ambidextrous and because she uses both sides of her brain, the DBS hasn't worked correctly. Just a very strange complication to be aware of.

[Srvaughn in reply to ladypeanut]

If dbs is considered to. Be performed a little sugestion is to get a brain surgeon whom has done like 500 to 1000 pwp for better results! Take care, srvaughn

[GalinaBlanca in reply to ladypeanut]

Thank you! Please do!

[ladypeanut in reply to GalinaBlanca]

Will do! All the best to you!

[Srvaughn in reply to GalinaBlanca]

I used to juggle with a lot of dyskinesias n I just wanted to say I found thattaking a full 8 or more ounces of water ,all at once, very helpful with my dyskinesias, hope this helps someone else with pd! Sincerely

[rhyspeace12]

My husbands facial dyskinisia improved on Rytary.

[GalinaBlanca in reply to rhyspeace12]

Hi, did he replace another frug with Rytary?

[rhyspeace12 in reply to GalinaBlanca]

Yes, he had been using generic Sinemet.

[rhyspeace12]

Yes, he replaced generic Sinemet. This one works ore smoothly with less off time. Sometimes when he has just taken he still makes funny facial movements (purses his lips and looks upward) but it passes. It is expensive but I can give you a assistance number to call if you need it.

[GalinaBlanca in reply to rhyspeace12]

Yes, please! Thanks!

[rhyspeace12 in reply to GalinaBlanca]

Go to The Assistance Fund 1 855-421-4608 TAFcares.org . They have limited amount of funds and you need to apply before January 1. My husband had his $100 a month co pay covered. They will send you a program card to show to the pharmacist.

[honeycombe3 in reply to rhyspeace12]

I cannot tolerate generic Sinemet either. I am a fan of generics most of the time but this is terrible.

[GymBag]

Amantadine

[GalinaBlanca in reply to GymBag]

What about it?

[GymBag in reply to GalinaBlanca]

look it up

it only has two purposes

[GalinaBlanca in reply to GymBag]

Did you try it? I read it’s only approved in USA, do you know of similar drug in Europe? Thanks!

[GymBag in reply to GalinaBlanca]

I have been taking Amantadine for 10 years. Now 3 times a day.

My wife makes up my med dispensers with meds for PD, heart, and some other stuff but ran out and forgot to pickup and did not include any Amantadine. At that time i did not check every dose. First day everything was shaking, second day my arms and fingers ached, 3rd day I was ready to call quits, it took 2 more days of restarting to take it before I was back to bearable. Like any PD med you start slowly and get used to it and never stop fast, you must ween off. This is extremely important (one side effect listed for not doing that -death) . Ask your doctor. PS I am in Canada and there are many people in Europe taking it

By the way, you will be taking one drug to counter the side effects of another drug. You may have issue with that. But if a person truly needs it they will eventually take it.

[GalinaBlanca in reply to GymBag]

So, amantadine controls your dyskinesia, right? My father has the rigid ness kind of PD so the dyskinesia comes from madopar and the levodopa in it.. Do you get levodopa and what drug and quantity you use?

[rhyspeace12]

The Assistance Fund 855 421 4608 TAFcares.org

[GymBag]

APO-Levocarb 5 doses x 1 tablet (25 mg - 250 mg each)

Carbidopa / Levodopa 7am, 11am, 3pm, 7pm, 11pm

[maier1959]

Try DBS. One week of uncomfort and 10 years of better therapie facilities. There are not so many drugs in therapeutic focus as thougt.

1. Levodopa, usual dose 1 00mg,increased in 50mg steps. carbidopa for stronger effect in the brain.

2. Dopamin agonist slow increase, up to ten mg per hour as s.c.

3. dopa lengthener like stalevo, (yellow piss) better and ceaper oņgentys m.ehanism comt inhibition

4. Selegelegin and similar drugs inhibit dopa defģradation. First sold for symptom improvmennt, later for àn reduced progress of Parkinson. One positive study

5.different drugs mainly for spezial problems.

The rest of the pills are generic and combination. Only three types of drugs increase the dopa level. DBS IS another possibility to get more dopa effect into the brain, without extra pill. The DBS effect inmy brain is in combination with pills good.if you have further questioñs, ask me.

[Srvaughn in reply to maier1959]

You seem to know a lot about drugs I’ve having trouble getting the best balance of pd ddrugs after Dbs surgery can I ask u how or is there a guide thatvu can reccomend nn if so email me at [e-mail] because I’m new to this site n not computer savvy. Been trying so long my dr says we’re taking baby steps so frustrating ……thks

[maier1959 in reply to Srvaughn]

After DBS surgery the dose of the parkinson Pillen can often be reduced. You caan

[lenamm]

Consider one of the FUS surgeries. I had horrid dyskinesia last year and since FUS I have almost none and am much less meds. From my research this is the best of the surgeries but only done in Switzerland sonimodul.ch/home/parkinson/

[Srvaughn in reply to lenamm]

What=is fus surgery in Switzerland?

[lenamm in reply to Srvaughn]

Read the link I have above

[Srvaughn in reply to lenamm]

Ok ty