Stopping Azilect to change to Macuna? I need help.

[Little_apple]

Dopamine agonists worsen RLS over time (proven) and I believe in my case may have caused it. Finding this out has changed my opinion of Azilect. I was hopeful it might be Neuroprotective because of it being a Mao-B inhibitor but, it’s causing worsened RLS is the antithesis of Neuroprotective. (On a side note, natural MAOB inhibitors include Ku-Shen and Licorice)

I need help.

It’s hard to proclaim that especially on here. I have come and gone due to serious mental health distress.

I research a lot but I’m having a very hard time figuring out what to do regarding dealing with my RLS and trying to keep it from worsening. When I started Azilect I did not have RLS. Now I do and it is getting worse. I’m very fearful that it is going to be what pushes me over the edge in to a downward trajectory because RLS = poor or no sleep.

Aside from RLS, my symptoms are so mild I overly optimistically thought I could stop it. I was fine for 10 days and then WHAM it hit me hard. I was not sleep at night at all, not even a little. My RLS was so bad I was up walking around (and cleaning my basement) all night. And my internal tremors came back and were worse than I had been pre-Azilect. My internal tremors can feel deeply disturbing because they can feel like my brain is shaking and my internal organs are tremoring including my chest. I don’t know how that is even possible but it sure is.

So please, has anyone had success with macuna to increase dopamine and stop or reduce internal tremors and RLS?

quote

“Thus, for some, long-term use of dopamine agonists results in much worse RLS than before treatment, a condition referred to as RLS augmentation. These patients often need RLS treatment with nondopaminergic medications.”

ncbi.nlm.nih.gov/pmc/articl...

People also askDo dopamine antagonists worsen RLS?Dopaminergic agents: These drugs, including Sinemet -- a combination of levodopa and carbidopa -- increase the level of dopamine in the brain and may improve leg sensations in RLS. However, they may cause a worsening of symptoms for some people after daily use

webmd.com/brain/restless-le...

This article says that nicotine makes RLS worse. That is odd. I can see smoking making it worse but if nicotine makes it worse than dies niacin, NR and NMN make us worse?

I’m so sad that I can not recall any good advice I have ever received from a doctor regarding my PD symptoms both before and after diagnosis. At best they have echoed the obvious but having received such terrible advice over the years I have lost faith altogether and feel I must figure this out myself with the help of other citizen researchers.

[rescuema]

Start with HTMA to figure out what your mineral levels are.

Often low cellular potassium level can be the culprit for restless leg syndrome in addition to dysfunctions in iron metabolism. Medications also tend to deplete K and bioavailable copper - affects iron metabolism.

In the meanwhile - try this to start. Go buy unsweetened organic coconut water. I use Simple Truth Organic from Kroger's that you should have easy access to. Mix about 4oz (at least 400mg K) with 1/4 tsp real salt (Redmond, Celtic, etc) and drink the mixture twice a day away from meals. It's probably sweeter than you'd prefer although no sugar is added but burn it off with exercise. Also eat potassium rich vegetables in addition.

Avoid licorice - it helps raise BP for the short term but it'll deplete potassium.

[Little_apple in reply to rescuema]

Thank you so so much! I’m doing the HTMA test next month when my hair has grown out sufficiently. I have (disgusting) potassium powder that I will resume.

[rescuema in reply to Little_apple]

Avoid taking potassium supplements unless you have no other option. To improve cellular potassium level long-term, your best option is through foods high in potassium. Cook your vegetables lightly to help with digestion and the amount you can consume and rotate them as much as possible.

[rescuema in reply to Little_apple]

Also, watch this video and stop high-dose D3 supplementation while fighting low potassium/Mg. As discussed earlier, use raw cold-pressed cod liver oil instead.

youtu.be/GsomcvdT7Po(Not working as expected?)

[WinnieThePoo]

If that doesn't fix it consult an unqualified neuro researcher and try a couple of cc of lemonade

[Little_apple in reply to WinnieThePoo]

“They cannot empathize with, or take the perspective of, others.They have difficulty “reading a room” and tailoring their message to their audience.They possess an inflated opinion of their contributions and performance.They are hurtful to others without realizing it.They take credit for successes and blame others for failures.”

hbr.org/2018/10/working-wit...

Sarcasm is a coping mechanism of the weak.

“Because sarcasm is actually hostility disguised as humor. “

“when a person consistently acts sarcastically it may only serve to heighten his or her underlying hostility and insecurity. After all, when you come right down to it, sarcasm can be used as a subtle form of bullying—and most bullies are angry, insecure, or cowardly”

psychologytoday.com/us/blog...

[WinnieThePoo in reply to Little_apple]

Christine. This is a public forum, not a private support group for you as an individual, although in your (at least 4) phoenix manifestations you have plastered it with your "research". It's hard to be sure, but you give the impression that you have not received a diagnosis of Parkinsons disease - you were due for a DAT scan but skipped it, and you make no mention of any of the cardinal signs for a diagnosis (external tremor, bradykenesia , or rigidity). Just restless leg syndrome and internal tremors. No mention of loss of sense of smell. Whilst RLS may be an early indicator of Parkinsons Disease, it is more often a separate condition which does not develop into PD.

ninds.nih.gov/health-inform...

You have joined this forum 4 times under 4 different names, and for 3 of those have left melodramatically deleting your account. (Maybe only 2 departures and a re-brand?)This appears to be a need for affirmation and reassurance, but you are clearly uncomfortable with any criticism or contradiction (or just plain lack of adulation). I am not sure that is a good indicator of robust mental health.

"I’m so sad that I can not recall any good advice I have ever received from a doctor regarding my PD symptoms both before and after diagnosis. At best they have echoed the obvious but having received such terrible advice over the years I have lost faith altogether and feel I must figure this out myself with the help of other citizen researchers. "

What PD? What diagnosis? By whom? "over the years" - when did you first receive bad PD advice? What grounds do you have for believing it flawed? I don't think the "citizen researchers" are going to be the help you have identified that you need. But I think you should be aware that a public "sharing" and cry for help like this post, is just that. Public. And I don't think it's helping you. Many of us on this forum, especially those with PD, have managed to find good medical practitioners who have helped us. Not perfect. And not able to give us the cure we would really like. But helpful in improving the symptoms of our real illness. I would look to see if you can find that help, and not look to rely on affirmations from this forum as a substitute for it.

[Little_apple in reply to WinnieThePoo]

I see no need to explain myself to you.

But to alleviate confusion for others, yes, I have mental health issues, especially extreme anxiety and limited coping skills which some people like to use to their advantage. Yes I have left many times because of it bc I can not handle it.

I’m sure I’m not alone in feeling that online communication with strangers particularly about a painful personal subject is hard.

I’m here bc I want to learn. The cost is having to cope with unpleasant interactions.

My diagnosis started with Mount Sinai stating “most likely PD”. She offered CL and DAT scan. I declined both bc I was in shock. Later I was diagnosed with PD at Rutgers in NJ and he prescribed Azilect. My RLS did not start until after a year of taking Azilect for PD. The Rutgers neurologist also prescribed off label Bydureon bc he is optimistic about the PD trial. I only take it about twice a month.

So, back to attempting to learn in general and more specifically the subject of this post, getting off of a dopamine agonists and replacing it with macuna.

[SilentEchoes in reply to WinnieThePoo]

Hard stop.

[rescuema]

I could tell you've been keeping up with your exercise and you look amazing and fit. Your kids look exactly as I imagined from our discussions - like Botticelli angels! ❤️❤️❤️

[Little_apple in reply to rescuema]

thank you! ❤️. I erased due to the persistent weirdos ☺️

[Little_apple in reply to rescuema]

I’m very determined!

I just took this photo after hill sprints. This ugly watch was a great investment in forced accountability!

My heart rate

[rescuema in reply to Little_apple]

👍

[kevowpd]

There's only one way to find out, but I doubt that mucuna will be a particularly effective therapy for RLS.

[Little_apple in reply to kevowpd]

I appreciate your responding to the subject.

Maybe someone on this forum has encountered my situation. I rather doubt it is so rare that I’m the first.

I’ve read online that Macuna helps with RLS. But to what extent I do not know.

My doctor said to just stop Azilect stating “it doesn’t do much anyways”. As stated above, that went very poorly.

Anxiety is my worst symptom

[SilentEchoes]

Have you looked at Bolts stack?

[Moonwalker1967]

There is a restless legs group on here with lots of advice. I suggest joining and having a read for info and help

[Little_apple in reply to Moonwalker1967]

Why didn’t I think of that?! Thank you. I just joined. I’m learning a lot.

[Little_apple]

Wow! Will do!

How much glycinate does she take? Throughout the day or just at bed? I’ve read that Magnesium Malate is excellent for RLS because it enables the iron transfer from the blood to the brain.