Editing to add that I've also had dry and uncomfortable eyes and unusually blurry vision since starting Sinemet. Yuck! I have been diagnosed with EBMD, but that doesn't show up overnight, and the eye issues started within hours of the first Sinemet pill I took.
First of all, nothing else has changed in the past 7 1/2 weeks since I started taking Sinemet (started Jan. 16). It's my first Rx for PD, and I take no other meds. I've had essentially the same diet and supplements for the past year, no new stress, etc.
My hair is falling out in handfuls. It's not menopausal, as I'm already through menopause and only experienced mild menopausal hair loss that resolved as my hormones settled down again. I'm a "young" 55 years old, and I can't cope with being bald on top of having PD. I saw my stylist yesterday (she's been doing my hair for 10 years, and I last saw her 5 weeks ago), and she was shocked at how severely thin my hair has become in just over a month. I've also had a lot of bad headaches (very abnormal for me), fatigue, and a frequent burning/prickling sensation all over my torso, neck, and head ever since starting the Rx (told my neuro's nurse, but they didn't seem concerned).
I've read that mucuna can help with hair loss in addition to providing levodopa for PD, so I'm going to try it. I wanted to use mucuna in the first place, but Zandopa didn't seem to help me at all, and Nutrivita made me severely nauseous (I tried taking it with matcha green tea). My neurologist says he's fine with me using mucuna instead of Sinemet but can't really help me with dosing. He's also willing to prescribe carbidopa to take with it for nausea. He said he has another patient who has been using mucuna successfully for 15 years.
I bought some Barlowe's 40% brown but haven't tried it yet. There's so much confusing and conflicting information regarding "whole bean" and "extract" that I'm not sure what I should be buying. It sounds like whole bean gives the most neuroprotection, but you have to take really large doses to get enough levodopa. There are so many brands and formulations out there that I don't know where to start.
Taking 1 IR C/L 25/100 plus 1 carbidopa 25mg (added to help with nausea) 2x/day helps my mild rigidity, bradykinesia, and dystonia in my left arm/hand and lessens my tremor a little. My neurologist actually prescribed the C/L 3x/day, but 2x/day has seemed sufficient.
I started taking B1 in Nov. of 2018, and that resolved my other symptoms (i.e. no left arm swing, left leg drag, urinary urge incontinence, debilitating fatigue, depression, internal tremor, dizziness, and joint pain).
I'm hoping those of you who've used mucuna successfully (are there any?) will chime in and give me some advice regarding brand and dosing. I'd also appreciate any other insight re: Sinemet and hair loss and other side effects. Yes, I understand that levodopa is levodopa, and that mucuna isn't magic, but I'd like to give it a try since the Sinemet has been an epic fail.
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1LittleWillow
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The whole bean Mucuna avoids the nausea. That means you will not need to take carbidopa which may be what is causing the hair loss. Yes of course you will need more - a tablespoon or two to get a dose. However it is neutral tasting and mixes easily with other foodstuffs. When I was trying it I mixed it with almond milk. I do not take it because I tolerate Sinemet without trouble.
Park_bear, do you just aim for the same dose (based on the product percentage) as you would with Sinemet? That is, if 100 mg. of Sinemet twice a day controls my symptoms pretty well, then an equivalent dose of mucuna (aiming for approx. 100 mg. levodopa) would be the goal?
What brand do you use for whole bean mucuna ? Yesterday i tried to add 2 pills of BARLOW’s to one 62.5mg of Madopar and was so sick for hours, so i understand now that i have to use whole bean to avoid vomiting
@marcet, not trying to preempt my good friend @park_bear, but my favorite brand is Banyan Botanicals. They call it "Kapikachu" which I believe is the Ayurvedic / Sanskrit name for Mucuna Pruriens.
I'm taking Barlowe's Indian Brown 40% L-dopa. I take each dose mixed with a spoon of unsweetened organic applesauce. It doesn't make me nauseous at all. Nutrivita made me vomit even though I took it with green tea.
Hair loss is a major issue I have with Sinemet. I take 1.5 tablets of 25-100 Sinemet/day (900mg/day). Hair loss started within three weeks of increasing my dosage from 600 to 900mg/day. I just might try the Mucuna with, I hope, the blessing from the Neuro. With the exception of the violent Left Hand Shake off" , my PD symptoms, both cognizant and motor are pretty well controlled. The higher dosage tries to moderate the PM wakeups to a violent shaking left hand. Dystonia is an issue at night. In fact, four of my six/seven doses are in the PM. I can go u p to 6-7 hours "on" during the day but only about 3 hours in the PM????
I use THC (vape) almost every night to help get back to sleep. It moderates the shake to the bearable level. Neuro put me on 0.5mg Klonopin, which worked (Benzo), but the after rebounding effects kept me sleepy almost the whole next day. All it takes is a couple of 2-3 second puffs to do the job. NO Rebound the next morning.
Vaping does work very quickly, but I don't get the same results that I get with an edible, and it wears off too soon. Edibles help me to sleep a full 8 hours while also eliminating my PD symptoms.
This may be due to the schedule and content of your meals. If I have a meal with some proteins/fibers/fat I can be off for hours. They each interfere in their own way with L-dopa intestinal absorption/receptors. But not everyone has this problem.
So it seems that if you plan to continue Sinemet, you might ask your doctor to have your zinc levels tested as it can take 3 months to turn hair loss around and then even more time to return to its previous state.
You can also consider the addition of the collagen supplement that three of my friends have used two of whom are senior women who got very good hair growth and thickening from that supplement which is mentioned in this post :
Other supplements which may be helpful for hair loss are Biotin and Horsetail among others that are likely to be useful in helping with hair regrowth. The Hosretail supplement contains silica which is helpful. There are others, but the four above should be quite useful in reversing your hair condition!
I've been taking a biotin supplement for a few years, as well as collagen powder (currently using Dr. Axe brand multi-collagen). I started after experiencing some menopausal hair loss, and they both helped my hair regrow. I was actually quite happy with how it looked prior to starting the Sinemet. I didn't know about the zinc depletion! I haven't taken any extra zinc for a while, but I have some, so I'm going to add that back in starting today, and I'll look into the horsetail/silica as well. Thanks.
Thanks for all of those links... lots of helpful information!
I've also read that both mucuna pruriens, and sinemet can cause hair loss due to the dopa...and dopa use can create zinc loss...hence hair loss. So thanks for connecting the dots for me.
Interesting. I've been reading a lot about mucuna, and everything I've read says that it INCREASES hair growth. Maybe the difference in effect depends on whether you're taking the whole bean powder or the l-dopa extract.
I've been taking biotin and collagen for quite some time and have been very happy with my hair. In spite of that, it started falling out dramatically when I started the sinemet.
Levodopa use is associated with b6, b9, b12 deficiencies, so if you're not already supplementing a good B complex, definitely try adding it. I tend to recommend PE B Complex Plus for a good balance of methyl B's.
"...riboflavin, biotin, folate, and vitamin B12 deficiencies have been associated with hair loss."
If a good B complex, collagen, and zinc don't help along with a better diet containing silicon, you can try JarroSil (instead of $$BioSil) while monitoring your kidney function.
I've been taking a B-Complex for about a year. I switched to Klaire Labs active B complex about six months ago. I think I was taking the Pure Encapsulations brand prior to that, and at this point I can't remember why I switched. I'll have to compare the two. Maybe I should switch back.
I used to take liquid zinc and always used the taste test to determine whether I was low. I switched to capsules a while back because they're a little more convenient, but I think I'll go to go back to the liquid. I currently have some in the house because my daughter takes it too, and I just tried some. I'm definitely low right now--no taste at all.
The PE has a significantly higher B12 as well as P5P for b6. If staying on Klaire Labs, definitely try adding a sublingual methyl b12 in case you lack intrinsic factor (see below). If you can't taste zinc, you seem definitely deficient, not good during Covid days. I used to worry about over supplementing zinc, but I don't since Zinc Balance - I highly recommend it and I take it on top of my multi some days (total zinc below 35mg/day).
Lol me too! It seems vain and silly to be worried about my hair when I'm dealing with something as dramatic and life-altering as PD, and yet... it matters.
1LittleWillow, I have hairloss too. It's constantly falling out: on my clothes, in the shower, or when I gently pull on it. I barely comb or brush it for fear more will come out. Awful! You're not alone in this and please let me know if the mucuna helps. It's dismaying to lose it like this, ugh.
I've been taking zinc for years, but I'm switching to a different brand/form and will start taking a little bit extra as soon as I get it in the mail. 😁
I stopped the sinemet and started the mucuna this past Thursday. Today when I run my hand through my hair, I'm getting nothing at all. A week ago I was getting a clump of hair... could be a fluke though. I'm going to give it a couple more weeks, and then I'll post and let everyone know how it's going.
OK that’s great. I hope it does help. I don’t know if I can switch to mucuna but it’s really tempting if it helps you. It’s not fun for one’s hair to fall out. It’s just like you said you run your hand over it and pieces are coming out. Clumps. Ugh.
1LittleWillow, is there an update on your hair loss? I Started on c/l several months ago and my hair has been falling out also. I already take biotin. I don’t want to use collagen. I didn’t know about zinc deficiency with c/l. I am doing very well on c/l and not sure I want to upset the apple cart. But the hair loss is stressful. I see Dr. Laurie Mischley in a few weeks so will ask her about all this.
ConnieD, the short answer is no. I've been meaning to write a post about what I've been doing and how things have been going, and I would love some advice and feedback, but I just haven't had time to sit down and think about what I want to say.
I think my hair has definitely stopped falling out. I am not sure why. Perhaps I have my stress under control. I did start taking ashwagandha. I also started taking Life Extension Optimized Broccoli and Cruciferous Blend because I read somewhere sulforaphane can help with hair loss. I also take biotin. I dabbled with natural scalp oils but they were just too oily to use consistently. I just started using a bar shampoo containing burdock root that said it promoted hair growth. I also use doTerra Root-to-Tip serum.
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