High-dose DHA and dyskinesia (my experience so far)

[1LittleWillow]

I'm always too busy lately to find time to write more than a sentence or two, but since Park Bear posted the info about Dr. Mischley's DHA protocol for dyskinesia, I decided I should make time to share my experience.

I've been using mucuna plus Rx'd carbidopa since the end of September 2022 (and mucuna alone for some time prior to that with inconsistent results). The combo works really well for me (with some exceptions that I'll cover in a separate post), but this past spring (2023), I started to get wearing-off dyskinesia near the end of some doses of mucuna. It took me a while to realize it was dyskinesia and not just tremor-related. At first it was barely noticeable--just a slightly strange feeling in my left foot (my affected side). That progressed to a rolling-inward movement of my foot, and then my left arm became involved, swinging involuntarily up behind my back. Recently, I started to get some cramping in my left leg that made walking difficult. I tried decreasing my mucuna dose, but it didn't help much. The dyskinesia wasn't too severe and usually only lasted about 10 minutes, but occasionally lasted as long as 20 minutes, and I was getting worried. When it first started it was just an occasional annoyance, but it's been getting worse and more consistent over the past few months. I did try increasing the mucuna because I read that wearing-off or diphasic dyskinesia might improve with higher doses, but that just made it worse.

I stumbled across Dr. Mischley's DHA protocol while watching one of her PD School videos (in the "Dopamine Repletion" section). I immediately purchased the Super DHA Forte Liquid and started taking 2 teaspoons per day on December 15, 2023. She recommends this high dose for a month or two. I'm almost 3 weeks in, and as of this week I'm definitely seeing improvement in the dyskinesia. My arm has stopped swinging back, and I'm not having any leg cramping. My foot it still twitching a bit, but it's only lasting about 5-10 minutes.

I plan to continue with the high dose for a total of 60 days (I bought 2 bottles of the oil). After that, I'll switch to the lower-dose fish oil and add the CDP choline that she recommends and see if I need to decrease my mucuna dose. I'm keeping an eye on my BP (I've always had low BP), but so far I'm not having any issues.

I'll post again if the dyskinesia continues to get better... or gets worse. I hope it isn't just a placebo effect.

[LAJ12345]

how much dha is in a tsp?

[1LittleWillow in reply to LAJ12345]

Here's the label:

Picture of Super DHA Forte Liquid supplement facts label

[LAJ12345 in reply to 1LittleWillow]

Thanks. Gosh, very expensive.

[Allypally49 in reply to 1LittleWillow]

Any chance of a front pic of the bottle to keep me on the right track on the purchase as there's a few available Thank in advance.

[1LittleWillow in reply to Allypally49]

This is the one I bought

Brown bottle with white and green label, Super DHA Forte Liquid

[Tayogi]

what brand of mucuna do you take? How long have you had the mucuna you are taking? I’ve always gotten dikinesia in my feet about an hour or so before wear off, nothing too bad, just the toes moving by themselves, I’m kind of grateful for that actually, because it lets me know when the mucuna effect is ending.

Doctor Rafael Gomez Maldonado ( mucuna researcher and expert) recommended that I don’t overlap doses to try and prevent diskinesia, so that’s what I’ve always done, I let the dose wear off and wait some time 20-30 min, sometimes more to take my second dose, I smoke cannabis in between doses which works really well and for the perfect amount of time.

I ask about how long you’ve had the mucuna you are taking because last year I was starting to get dikinesia in my spine and head, slight but noticeable, I use barlowes brown mucuna and I had purchased a lot of bottles one time that they had decided they weren’t gonna sell it anymore, so is stocked up.

I had been taking that mucuna for over a year and it occurred to me that maybe the dikinesia was a result of the mucuna being too old, so I ordered a new bottle and guess what? I was right! I don’t get that diskinesia in my head and spine anymore! 🙂

Ps. Taking too much mucuna also gives me diskinesia, that’s how I know I need to adjust the dose.

[1LittleWillow in reply to Tayogi]

I use Barlowe's brown.

When I finally realized that what I had been experiencing was definitely dyskinesia (I talked to my MDS), I thought it was simply caused by an overdose of mucuna because it was only happening occasionally, but it quickly became a regular occurrence. I tried decreasing the dose (I always remove some from each capsule anyway), which didn't help, then tried ordering new bottles from Barlowe's, thinking that there was possibly a problem with the L-dopa content in the bottles I had. That didn't make a difference. I even checked the lot numbers on the bottles to make sure they were different.

I often take only one dose of mucuna per day (each dose lasts about 5-6 hours for me), so overlapping isn't the problem.

I had fallen off the wagon a year or more ago when it comes to taking fish oil supplements, so I probably really need the DHA. I had been buying krill oil from Costco for quite a while, but they started putting sorbitol in it, which I can't tolerate, so I stopped buying it and never bothered to find an alternative.

We are all so unique in our responses to supplements and meds!

[Tayogi in reply to 1LittleWillow]

What if you gave a different brand of mucuna a try? I’ve been taking 1/16 tsp of brown barlowes (making my own capsules) but I recently realized that 1 capsule of Now mucuna contains about the same amount of l-dopa as the capsules I make ( it’s more mucuna material with a less l-dopa concentration but still the same amount of levodopa I’ve been taking), so for the past 4 days I’ve been taking Now mucuna, and so far so good! It seems to be giving me the same relief as barlowes, but now I don’t have to worry about making capsules. Just an idea!

[1LittleWillow in reply to Tayogi]

I tried the NOW brand, but even at a very small dose, it gave me a lot of nausea.

Also, since the DHA seems to be helping, I don't want to change anything else at this point, but I'll keep that in mind. Thanks!

[greenenergy37 in reply to Tayogi]

Hello, may I know if you are also taking pharmaceutical C/L on top of the Now mucuna capsules? How much Now supplements you are taking in a day? Thank you

[Tayogi in reply to greenenergy37]

I tried the Now capsules and I found that even though it is the same amount of l-dopa as my dose of Barlowe's, it doesn't work the same, so I went back to making my own Barlowe's capsules. I don't take c/l, but I do take 1/8 of a 25mg carbidopa pill with my dose of mucuna.

[1LittleWillow in reply to Tayogi]

I meant to add that my dyskinesia also happens about 45 minutes to an hour before my dose wears off.

[greenenergy37 in reply to Tayogi]

Do you take CL also?

[1LittleWillow in reply to greenenergy37]

I only take mucuna plus Rx'd carbidopa.

[greenenergy37 in reply to 1LittleWillow]

Thank you so much for your prompt reply. Did you took CL before and what were the dosages and how did you weaned off from CL to mucuna? Do you have any side effects of mucuna like dyskinesia? I really need to come off CL due to horrible side effects. Thank you so much for your help.

[1LittleWillow in reply to greenenergy37]

I tried C/L for a few months, couldn't tolerate it, stopped it completely, then eventually started mucuna. I didn't have to wean off or switch over. I do have mild dyskinesia from mucuna. This high-DHA fish oil regimen recommended by Dr. Mischley has helped me significantly with the dyskinesia.

[staceysack]

I am very interested in this. I encountered stomach issues after taking 1 tsp of regular fish oil from pharmax. Have you had any stomach issues?

[1LittleWillow in reply to staceysack]

I take 1 tsp. in the morning and one in the evening, and I haven't had any stomach problems. I usually take it with some carbs--a cracker, a bite of banana. The DHA Forte liquid isn't fishy--it's pretty neutral. It also has orange oil.

[ssrs]

Hi,

I am so happy to read your experience with the DHA. I just ordered it for my Hwp last night. I do have a question, I know on the bottle it says to take the 1 teaspoon in the am and 1 teaspoon in the pm. I swear I thought heard Dr. Mischley say that she gives her patients 1 Tablespoon per day. But if you are seeing the results in 3 weeks that is wonderful. I am excited to get my Hwp on this to see if it helps him.

[1LittleWillow in reply to ssrs]

She did say 1 tablespoon; however, she also said that the actual dose was 4 grams of DHA per day, and the oil I purchased has about 2 grams per teaspoon. Listen to the video right at the 1:40 mark. Maybe the oil she used at that time was a different concentration.

[Rufous2 in reply to 1LittleWillow]

There are three different fish oil formulations produced by Pharmax. There's a detailed discussion about this here; healthunlocked.com/cure-par...

[Allypally49]

Im getting confused now is the 4gm of fish oil from Pharmac that Dr Mischley is referring to 4gm of DHA or 4gm of fish oil with a EPA and DHA but having a high DHA content?

[1LittleWillow in reply to Allypally49]

It's one teaspoon of oil that contains two grams of DHA (and only 425 mg EPA), and you take two servings per day for a total of four grams of DHA per day.

[Allypally49]

My WWP is into her first week of the high DHA fishoil quest.Last year she developed a ' cramp/ache' on her left leg, where she had to stop a few times when out with me and do a bit of stretch her leg.

In the last 8 weeks it has disappeared, this occurred by coincidence as I had her on 1000mg of B3 (nicotinamide) and 100gm of coq10 to try improve her overall brain function.

I've now left out the B3 when starting the DHA fish oil but still use the coq10

( 300mg as I couldn't resource the 100mg) and the cramp/ ache has not reoccurred.

[chartist]

That was 5 months ago. Care to update on your high dose DHA testing?

Art

[1LittleWillow in reply to chartist]

As usual, I'm pressed for time lol, but the quick answer is that I am just continuing to take 2 tsp per week of the same high-DHA oil that I started with... not because I think it's the best choice, but just because I haven't had time to do the research and decide what I want to take on a daily basis. The dyskinesia has remained very mild. It's more of an annoying sensation at this point and doesn't usually involve noticeable movements. It's much, much better than prior to starting the DHA oil. I think I commented in another thread that I've been dealing with some big issues related to the estrogen patch I started about fourteen months ago. I completely stopped that a few weeks ago. That seems to have been negatively influencing a LOT of things (primarily my B1 dose). As I continue to work on all of this over the next few months, I will try to post and explain what's been happening because it's pretty interesting.