Hi! My mom was diagnosed with Parkinson's 10 years ago and has been doing okayish. But recently she's having these episodes which last about 20-30 minutes where she's unable to control her movement. During these episodes she's moving frantically, is breathless and sweating. Almost like she's doing a workout. It's very hard to see her like this. She's get so tired after these episodes.
Could you please provide any insight into what could be causing this? And how to make it better?
Here's a video of Parkinson's dyskinesia. Is it anything like this?
youtube.com/watch?v=V9q_-rq...
If so , reduce her levodopa dosage if possible
It’s somewhat like this. She’s really hyperactive during those times. Moving her whole body and unable to be still. She’s still able to think and speak clearly during those episodes but she’s just out of breath. It’s really like she’s doing a cardio session.
I’ve noticed this happens later on in the day around her 3rd and 4th dose and towards the end of the dose and beginning of the next dose.
Her levodopa dose is not that high. We are using a combination of levodopa (200-250 mg per day) and mucuna (she gets about 200-250 levodopa from mucuna). Plus 2 doses of agnostics Parmirole.
I don’t think she’ll able to reduce the dose. This is necessary for her to give her ample on periods through out the day.
Do you think it’s dyskinesia? Any other ways to reduce it?
She’s started taking DHA fish oil about 10 days ago
True her dosage is not all that high, but I do not know what else it could be. Perhaps someone else will have additional insight.
There are disease modifying interventions that could reduce her dosage, but these typically take months to take effect.
Do you think this started after starting DHA?
You can try splitting the suspected doses further and see if it helps. e.g. instead of 1 tab of 25/100, give only half the tab. Monitor closely.
Thanks for getting back to me. She was having these episodes before starting DHA. I don’t think we can split the doses any further. She’s taking half of 25/100 + mucuna (equivalent 60mg levodopa) at ever dose. If we remove the mucuna then she’s on for less than 1.5 hours which is not enough. With mucuna on time is about 3-3.5 hours.
I think the problem is not the total quantity but if mucuna and the levodopa are taken at the same time it all comes through at once, is quickly used up. Can you try staggering the levodopa and mucuna so they peak at different times.
BTW the way the dha works is to make the levodopa go further I think, so it is perhaps over dosing her even more so. Can you take a break from that for a week and see if it’s any better?
Hi! That makes total sense. My mom already gives 20 mins between levodopa and mucuna. Now I’ve asked her to try increasing it to 30 mins.
And she took a break from DHA yesterday, and today she was much more stable. Thanks for suggesting it. Now we will monitor it for a few days and if she stays stable.
Though I really want her to keep DHA in her regimen given all the benefits. What would be the best way for her to keep taking it without the adverse side effects?
Dha is helpful I think for people that are deficient. Has she has always eaten fish each week even canned ? She might not be as deficient as others. Or is she a tiny elderly women (I don’t know her age) she might just need less.
I believe dr Laurie mischley the Parkinson’s expert suggests taking it for a few months then going down to a few capsules a day. So I think you just need to refill the tank so to speak then go to maintenance level.
What brand are you using? We use Carson elite dha and my husband seems to be doing well on that.
Here is my scruffy picture that I think explains what happens with doses of levodopa.
Also if she wakes in the morning and can move quite well I believe dopamine is made naturally in the body so the natural cycle underlays the medicines so can make things worse in the later doses of the day. Is she worse in the evening?
ps if she can give it 90 minutes it might be even better.
See how the 30 minutes goes but if still no good try 90. You could try mixing it into low protein meals if it gets too onerous taking meds every 90 minutes although the effect might be reduced if the levodopa is lost in the food.
And though people are saying don’t do anything without consulting a doctor we have found dr does not always know best. In fact our Parkinson’s expert and a psychiatrist have each nearly made my husband commit suicide the doses they gave him were so strong. And their advice was take more. I didn’t believe they were right and reduced his dose and he is now really well again. You and your mum know her reactions to drugs better than them as you see them every day and know something isn’t right.
The most important thing is take notice of any worsening symptom after adding or changing dose of a medication or supplement. If it makes you start getting worse then it is more than likely the change she just made. You can’t just cold Turkey the meds so slowly reduce them making small changes once a week or longer. That gives the body time to adjust to the changes.
Hi! Thanks so much for taking the time to help me with this. I really appreciate it. 🙏
My wedding is coming up this month so that’s why I was so anxious to get this under control. I really can’t have her miss out on any of it. And it’s an Indian wedding so parents are a huge part of it and the celebration lasts for a week.
My mom is in her mid-60s and she was diagnosed a decade ago. She’s okayish in the morning meaning she can move around on her own and do stuff but slowly. Some days she might need my dad’s help. So it varies.
She has been a pure vegetarian all her life. Never had eggs either. Just dairy. That’s why I felt she could benefit from DHA. I was giving her Carlson Med Omega Liquid. It’s been two days and she’s been more stable off it.
Regarding the timing of Levodopa and mucuna, my mom has noticed that the mucuna doesn’t work to alleviate her symptoms if there’s too much gap between it and levodopa. Maybe I’ll try pushing it to 45 mins but don’t think she can do more than that.
And you’re right. After a decade of dealing with this condition, she doesn't trust the doctors very much. Their solution for everything was to increase the dosage plus they are not open to alternative solutions like supplements. We feel she has benefitted from mucuna in slowing the progression. So I have adjusted her dosage accordingly. She’s been on it for almost 4 years now. The doc would never have been open to that. She sometimes changes her dosage depending upon how active she needs to be. So some days it can be a little more and some days a little less. It’s been working for her. I don’t know if it’s the right thing. I just know that this disease affects everyone so differently. Therefore, you just have to do what works for you. There’s a lot of trial and error involved.
It’s good she is feeling a bit better.
Are you able to get hold of the Carlson elite dha ? It’s the high dha that Laurie mischley recommends .
Can you get any 50/12.5 tablets of the meds? It’s easier than cutting the stronger ones smaller. If the larger gap doesn’t work try taking 1/2 her current dose with the mucuna then the other 1/2 Dose of meds 90 minutes later by itself.
Congratulations on your wedding. Do you think the excitement and stress from that might be contributing? My husband gets worse symptoms if something is making him anxious but also for irrational things that he worries about. Maybe she is worrying about guests or family she hasn’t seen for ages and worrying about what they will think of her symptoms. My husband had loose tooth plate for months that was falling down when he was speaking and that made him feel very anxious and withdrawn as he was embarrassed to talk to people and he got quite bad again. Now it’s fixed he is much better.
Is she sleeping ok? If anxiety is keeping her awake she could try melatonin.
Or if she is worrying about the wedding you could try low dose clonazapam. My husband tales 0.5 mg each day cut into quarters. It keeps him calmer. Or if you don’t like drugs GABA can work for some people to calm them.
It sounds like your mom is experiencing shaking and tremors throughout her body. This happens to many people who take Levodopa (a Parkinson's medication) for a long time. I get these shakes too, and sometimes my toes and feet curl up. It's really unpleasant to experience and to watch.
This usually happens when there's too much medication in your system. Think of it like overfilling a cup - when there's too much Levodopa, your body shows it through these movements.
Here are some things that might help:
Take less Levodopa with each dose
Try a special medication called Gocovri that helps control these movements
Consider asking your mom's doctor whether slowly and gradually reducing one of the medications (probably best to gradually reduce the Mucuna might help since it's harder to know exactly how much you're getting). Do not do anything without consulting your mom's doctor.
But here's the most important part: Don't make any changes without talking to your mom's doctor first. Make sure to tell them about ALL the medications she's taking, including the Mucuna. Suddenly stopping or reducing Levodopa can be dangerous, so you need a doctor's guidance.
Hope this is helpful.
This is mostly okay but never advise anyone to simply stop taking a levodopa medication. This can cause really serious problems requiring hospitalization. Levodopa medication must be tapered gradually.
Thanks for the reminder that suddenly stopping Levodopa, even if it's Mucuna Pruriens in any form is dangerous and possibly life threatening. It cannot be stressed enough.
I thought that I had covered it in my last paragraph, but I understand your concern about the serious nature of the consequences of abrupt withdrawal of C/L, known as Neuroleptic Malignant Syndrome or NMS.
I wish that this was more widely recognized and discussed. Thank you again for the call out
EDIT : I have made corrections to the original response to the OP's question to emphasize the importance of communication and consultation with the doctor. Most doctors are these days aware of Mucuna Pruriens. I have also made changes to this response as well.
Thanks a lot for your responses. I really appreciate the advice. We won’t be reducing the Levodopa because we are already at the minimum that she needs to be active for 12-14 hours a day. All I can think of is to increase the time between doses by 15-20 mins and see how that goes.
After years and years for going to the neurologist, my mom has lost faith in the doctors so I try my best to research and see if something new works for her.
This is my first time posting on this forum but I’ve been following along for a couple of years now. I’m learning so much about supplements and detailed information for her condition. Thank you all for everything!
Apart from dyskinesia, I am thinking dystonia maybe. Beyond that I have no idea. Is she due to see her MDS or neurologist soon. It sounds very stressful for both of you.
It’s definitely very stressful. I really want to help her but I don’t know how. She was diagnosed in her mid-50s a decade ago. Can you please help me understand the difference between dyskinesia and dystonia?
Dyskinesia is unintended movement that is not tremor, and typically caused by levodopa.
Dystonia is muscle tightness. This is typically a Parkinson's symptom, but can be caused by high levels of levodopa.
Thanks for the explanation! I think it alternates between dyskinesia and dystopia for her.
It seems like she experiences Dystonia in her foot based on her description that her foot just closes up and feels so tight making it difficult to walk.
Yes, that alternating of symptoms is a clear sign to me her doses are too high and spaced too far apart. She might be one of the people with the super speedy dopamine breakdown enzyme like my husband.
I had his genetics done and it says he has a very fast dopamine beta hydroxylase (DBH) . I can’t find much about this and doctors don’t seem to know about it, but I wouldn’t be surprised if it is the reason there is a big group of people on this site who seem to have the same reaction to drugs as your mum and my husband. But maybe out of all pd patients it is a low number that a single doctor sees so they don’t recognise it. Anyway that is my theory.
Yes that is dystonia and I get that too. The best way I have found to treat this is to stretch out those toes - put the foot flat on the floor and lift the heel until the toes get a good stretch.
... and maybe for her B1 therapy can helps.
She’s taking b-complex injections a couple of times a month and she’s also taking oral b-complex fairly regularly. Is that enough? Or should I look into upping the dose?
too much vitamin B6 reduces the effect of l-dopa.
Thank you! I’ll look into this
Ask for the exact breakdown of each of the injections . Are they the natural form of the b vitamins?
The high dose thiamine protocol takes very high doses of thiamine so I imagine the injection and complex aren’t high enough in thiamine. There are lots of posts on here on the high dose protocol.
Can you post a photo or name of the multi she is using?
B6 with the levodopa drugs interact . They both destroy the other although I’m not sure what happens if the vitamin is injected.
Hi abrd I have same issue, my whole body shakes for 20 to 30 minutes , its Dyskinesia, I find stretching help, I hold on to any bar or beam and stretch whole body or sleep on bed and stretch every part of the body, try and see if it helps
Thanks for your advice. I’ll definitely ask her to try that from tomorrow. Her movements are more dance-like like twisting her feet, skipping steps, head bobbing, body swaying. She’s unable to be still. And she’s really fast. It leaves her breathless and sweaty. Do you have similar symptoms?
can she cut her pill in half and take twice as often? Or is it a capsule.
with madopar you can get a 50/12.5 dose tablet which can be easily cut or broken in half.
Hi! Why doesn't she tries AMANTADINE? Could be the solution. Regards
Honestly, I’m a bit worried about the side effects of Amantadine. But she is yet to see a new doctor so all new treatments are on hold till then but I’ll definitely bring this up with them .
I get these..they are horrible! I sympathize for anyone who gets these episodes especially the elder as it really beats up the body. In my case it's definitely tremors and not dyskinesia. It looks like I'm having a seizure. I hope your mother is able to find a resolution.
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