C/L question : I have read many times that... - Cure Parkinson's

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C/L question

MomoP profile image

I have read many times that C/L is the gold standard for PD. I have also read many times on this forum, others remarking that they feel wonderful, normal again and that they have their life back after taking it. I want to feel normal and have my life back too ☹️ So, I bit the bullet and started C/L immediate release ( the doctor wouldn’t prescribe extended release). I was diagnosed in March of this year. No tremors, although I am now getting an occasional “twitch “ in my affected left foot. Left side only affected so far. No Cognitive issues. I can still smell fine. Mainly motor symptoms, slow, stiff movement. My left foot drags sometimes. I am slower and my dexterity on my left side is lacking. I started on Azilect, then Selegiline, which was of no help. I stayed on Selegiline hoping it was somehow helping my brain. My initial experience with c/l (25/100), 3 half tablets a day, was nothing short of frightening. After the 3rd dose, I couldn’t walk. I was speaking slow and I felt everything was going in slow motion. The dr backed it off, and restarted with 1 half tab once a day for a week, 2nd week added a second half tab and so on. I was back up to 3 half tabs a day. I was quite tired a lot and nauseous. It wasn’t as bad as the first time, but I didn’t feel normal again. I felt worse taking it than not. I remained at this dose for a month, with no improvement in symptoms. My question is, is c/l an all or nothing med? I know it was a low dose, but I would think if it was helping at all, maybe it would halfway improve my symptoms? I felt nothing positive, only negative. I requested to go off and revisit at another time. The dr ok’d it, but added, that the usual dose is a whole tab 3x a day. If I felt bad on a 1/2, I figured a whole would make me feel even worse. I had hoped even minor improvement on 1/2? I truly hope this is PD and not something worse 😩 Never thought I’d be hoping for PD. I know meds have side effects, and I could try to deal with them if they were working. I’d like to stay independent and feel somewhat normal and get my life back like many of you. Some of you have had PD for over 10 years. I feel like I’m in real trouble if I can’t get my mobility back after such a short time. I’m nervous and scared

58 Replies

I’ve stopped the Selegiline temporarily as well as all supplements. I need minor surgery and need to be off most for a few weeks prior. Also, my neurologist said anesthesia can make my PD symptoms worse. It seems there is only bad news ☹️ It’s like a double edge sword. You need minor surgery to fix one issue and risk making PD worse. Has anyone had this experience or advise?

Baron1 profile image
Baron1 in reply to MomoP

Good Morning, I have researched this subject; "Anesthetic" for patients extensively. The overwhelming discussion is that it will effect peoples cognition at varying degrees. Those with neurological disorders and those over 65 years of age should be advised of the long-term consequences. Here in Australia, the Australian and New Zealand College of Anaesthetists, have documented information that states:

"There is evidence that if you are elderly and suffer from a neurological disorder and proceed with surgery with an anaesthetic, you do get a measurable change in cognition".

This also depends on the type and strength of the anesthetic and therefore should be discussed with all patients and those with the above circumstances should be made aware of the possible long-term, and in many cases irreversible damage to their cognition, and memory loss.

The Doctors will normally never tell you this, because it is in their best interests for people to have surgery; money is one big carrot dangling in front of them. They do not think that the memory impairment is significant enough to tell people, however you may find some will be honest and explain the above to you.

MomoP profile image
MomoP in reply to Baron1

Hi Baron, thank you so much for this information. I will bring up this to the Dr and ask to speak to the anesthesiologist. Have a great day!

amykp profile image
amykp in reply to MomoP

My DH is an anesthesiologist and is rolling his eyes as he reads this. First of all, he gets a salary, is not paid per case, gets no bonus for convincing hapless patients to go under (has NEVER felt any pressure from any boss either) so he does not care if you go to sleep or not. There are no carrots.

He's read evidence of cognition changes in very young children who undergo multiple surgeries, which is terribly sad, because usually those very young children have horrible problems (like cancers) and there is not a lot of choice.

He says it's entirely possible that folks with extremely advanced PD might suffer problems as well, especially if they need multiple surgeries or have very very long procedures. Early/mid PD? Very doubtful. There are some particular medications that should be avoided in folks with PD but, knowing which ones those are? That's his JOB.

Of COURSE bring it up. Your anesthesiologist cannot know to treat you properly if he/she doesn't know.

BTW, there is one anesthetic called ketamine which is actually in trials now because it's been shown to improve PD symptoms. Kinda interesting, eh?

MomoP profile image
MomoP in reply to amykp

Amy, thank you and your husband for your advice. I will be sure to speak to the anesthesiologist.

RBan profile image
RBan in reply to MomoP

I’ve heard of Anaesthesia being a trigger for Parkinson’s or Alzheimer’s, or that it just makes it worse sometimes. It was A couple of months after my gallbladder removal surgery that I noticed my Parkinson’s symptoms. Looking back I had unnoticeable symptoms before that but the surgery definitely Accelerated things.

MomoP profile image
MomoP in reply to RBan

Hope you are doing well and better now

rebtar profile image
rebtar in reply to MomoP

I had minor surgery recently and no effect on PD symptoms. Anesthesia has improved so much since my last surgery 25 years ago. Ask for the "lightest" anesthesia possible. The anesthesiologist I had said that is the standard for surgery now. Of course major surgery requires a deeper anesthesia and breathing support.

I had a plate placed on my humerus because of a double fracture of the head with displacement. The surgery lasted less than an hour and I believe they used Propofol. If the surgery is minor and you are breathing on your own, you should be OK. I did feel a bit groggy waking up, for maybe 30 mnutes, but no cognitive or other issues afterwards.

MomoP profile image
MomoP in reply to rebtar

Thank you rebtar. Hope you are healing well. Thank you for sharing your experience

I can only say that I had a minor procedure a couple of years after my diagnosis and neither the propofol nor the premed (glycopyrrolate) had any lasting effects. I benefit from C/L, but I have a good friend who does not benefit at all from it, yet his movement disorder specialist has no doubt that he truly has PD. I can understand your frustration with finding an effective treatment, but I think it's too early to panic that you either don't have PD or will never experience any improvement in your symptoms. I saw that you've had the Eric Ahlskog book recommended to you. I found that very helpful also.

😊thank you so much for sharing and sensibility

Hi MomoP,

My understanding, and it matches my experience, is that you need to reach a therapeutic level of levodopa, in order to get relief from the C/L, and if your dose is below this level you will likely feel worse (ie, "it is c/l an all or nothing med").

So, it could be the case that you are taking an insufficient dose (i doubt this if you are newly diagnosed and tried 3 tabs a day), or it could be the case that you are one of the PWP who don't respond to C/L, or it could be you don't have PD.

MomoP profile image
MomoP in reply to Levod

Hi Levod, thank you for your reply! In the past, I tried mucuna too without improvement so I wonder if I just don’t respond to it, which is what scares me. I read about MSA patients not responding to C/L and I pray that is not what it is. Luckily so far, I have not recognized any symptoms of that in myself, although I am early in this PD journey. I also read where others have had PD symptoms for years, sometimes over 10 before being diagnosed. It was only late summer/ early Fall 2020 that I started to notice my gait changing. I started having restless leg 2 years ago, so maybe that was the start of changes in my brain/ dopamine? This is so confusing and the trial and error discourages and disappoints me. I try to stay positive hoping something will eventually help me. Thanks again! 😊

Coling profile image
Coling in reply to MomoP

Hi I have the same problem, 3 low dose tablets a day make me feel drowsy with no improvement in symptoms. So I will try an upped dose but not feeling optimistic

MomoP profile image
MomoP in reply to Coling

I know how you feel Coling. Let me know how it goes. Good luck to you!

Hi momoP

You have increased the effect of the c/l by continuing on selegiline. Maybe double i dont know but i wouldnt take both to begin. I might give up for 2-3 months then try again. It will work out, just a bit early i guess. Are you still on Azilect as well?

Try not to worry, it will work out eventally and when you do restart go as slow as you need. Ginger helps nausea.

MomoP profile image
MomoP in reply to Hikoi

No, I stopped the Azilect before starting Selegiline. It made me exhausted and dizzy every day. I had no quality of life

Hikoi profile image
Hikoi in reply to MomoP

That’s good as i was unclear whether you added selegine to azilect or replaced it with selegiline. Selegiline was developed for major depression. It was found to have a potentiating effect on carb/lev by blocking an enzyme that breaks down levadopa so though it is taken as a stand alone treatment it is more common to take it to extend the action of carb/lev.

MomoP profile image
MomoP in reply to Hikoi

Thank you Hikoi 😊 I’m sorry if I was unclear. Thanks for the info.

" After the 3rd dose, I couldn’t walk.":

This is exactly what happens to me if I have too much levodopa. My affected leg gets stiff and does not want to move. When this has happened on the upswing of medication while I am out hiking, I find I am able to force a run even though I cannot walk.

This kind of thing is especially prone to happen with the immediate release version which has an especially high peak plasma concentration. As you are probably aware, extended release versions provide a much more even plasma level and are usually better for infrequent dosing - particularly three times a day or less. See chart here:

healthunlocked.com/cure-par...

In my opinion any doctor who refuses to prescribe extended release under this circumstance needs to be replaced with a doctor who will.

It is also possible you are intolerant of C/L. Other patients have reported this. If you are reacting badly to a low dosage I would not try to go higher.

Here is a list of nonprescription interventions that some of us have found to be helpful.

Thiamine and cinnamon particularly have helped me:

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

MomoP profile image
MomoP in reply to park_bear

Thanks for reaching out Bear! Our experiences have been very similar. I had been taking 1 TBS of Mannitol in morning coffee. I didn’t notice a difference but continued to take it. I’m always hopeful even when I don’t notice a difference, it is still providing a benefit in my body. TMI 😊 I liked it too because it helped keep me regular. I recently stopped though because it was having a diuretic effect, which was fine but I think it caused extreme urgency. And I started having severe charley horses during the night. I assume all the urinating was depleting vitamins and minerals. I have been taking Ambroxol for about 2 months now. I’m not taking the research amounts though, usually around 10 tablets a day, spaced out. I see the neurologist in December and will ask her again about the extended release c/l. I think she said the immediate release is what they prefer to try first ( I did ask for extended because our experiences are very similar and you said that is what you take) Have you needed anesthesia since being diagnosed? If so, what was your experience? Did your PD symptoms worsen? I will seriously look into thiamine and ceylon cinnamon. First I will make sure they won’t interfere in any way with minor surgery. Thanks again so much! Your advice is always welcome!

park_bear profile image
park_bear in reply to MomoP

My discussion of remedies for Parkinson's constipation here:

healthunlocked.com/cure-par...

The only anesthesia I have had since diagnosis has been local dental anesthesia which has had no effect on my symptoms.

I presume you are using the whole Mucuna bean type powder. That has a low concentration of levodopa. If one tablespoon is having no effect, I believe you could try two tablespoons safely.

The cinnamon and thiamine interventions are long-term projects. Plan on many weeks or several months to see an effect. If there is any concern about interference with the surgery they can wait.

Thanks for your kind words!

1LittleWillow profile image
1LittleWillow in reply to MomoP

I have been taking Mannitol for about a year. For the first six months or so, I was taking a tablespoon at bedtime, but now I take a teaspoon in the morning and a teaspoon in the afternoon. It helps so much with my energy levels and mood! I have experimented with four different brands, and I find that they each work a little differently for me.

MomoP profile image
MomoP in reply to 1LittleWillow

I may add Mannitol back, but take a multi vitamin or trace minerals and see if that stops me from getting excruciating charley horses at night. I was never prone to them, and haven’t had one since stopping the Mannitol. I think I was losing too much fluid.

I am YOPD 6 years post Dx and 7 after motor symptoms started and for me C/L was a lifesaver. Turning me on the first time I took it I didn’t have issue with it other than diskinesia. And that it slowly stops working on me.

MomoP profile image
MomoP in reply to mishod

Thank you for your reply mishod. I’m not familiar with the abbreviation YOPD. I am glad c/l worked so well for you. I think I had high expectations of relief after reading so many positive things. I will keep trying to find something that works for me 😊

RBan profile image
RBan in reply to MomoP

YOPD is young onset Parkinson’s disease

You could ask to try Kemadrin (procyclidine) to see if it helps counteract the side effects. As it has side effects itself start very slow 1/4 once per day for a few days incr to 1/4 x2 per day etc. you may not need to get up to the prescribed dose. My husband takes 1/4 x2. It seemed to help with agitation at least.

MomoP profile image
MomoP in reply to LAJ12345

Thank you LA, I will look into this

Momo, keep the faith: it’s difficult when you’ve had a tough start but build your knowledge and use the experience of the stalwarts on this site. I would also urge you to read The New Parkinson’s Disease Treatment Book by J Eric Ahlskog (Amazon). It is a veritable bible and he is recognised the world over for his work with Parkinson’s (he is very pro C/L but with good reason I think). He wrote this for people like us to better understand the disease, its progression and the medications available, along with the dosage strategy. It’s very important to keep your meals separate from the pills too. Good luck and here’s to a happier outcome for you.

MomoP profile image
MomoP in reply to Wonky-Bride

Hi Wonky, Thanks for taking the time to reply and you words of encouragement. There is much to learn! This site and the people on it have been a Godsend and wealth of information, super helpful and friendly I might add too! I will definitely read the book! Take care!

I would give C/L more time. It took me months to got relief from it. The nausea was unbearable even at half dose but I persevered and can say I feel “normal” most of the time. I do get periods where my leg feels heavy and wants to drag, which could be as PB states too much C/L but my neurologist didn’t think so. That feeling passes after some time. I also concur with PB’s other recommendations. Good luck. I hope things change for you soon.

MomoP profile image
MomoP in reply to Missy0202

Thank you Missy! I will speak with my neurologist in December and will most likely revisit at some point. Thanks for you well wishes

I have been on C/L for approximately 12 years and it works pretty good for me. I'm also taking Azilect and Amantadine. I have had anesthesia 3 times. It exaggerated my symptoms for 2-3 weeks but they eventually went back to "normal".Good luck and keep fighting! 🥊

MomoP profile image
MomoP in reply to laglag

Thank you Lag! I will keep on fighting 😊 thank you for sharing your experience

It didn’t really do much for me to begin either. I think that this was because my symptoms weren’t really bad at this point. But when they got considerably worse it really helped and I couldn’t be without it now.

MomoP profile image
MomoP in reply to jeeves19

Thank you Jeeves! Maybe that could be why it didn’t work for me? I am a 60 year old female in the US

jeeves19 profile image
jeeves19 in reply to MomoP

I asked because I thought I had MSA then found out a symptom that virtually all men have leading up to this beauty. But as you’re a woman, it’s irrelevant I guess 🤔

Are you male or female? It doesn’t seem to be included in your bio.

You are not alone with how you feel when on C/L- Sounds like ur doc didn't start u gradually on it?? You just cut right in to the 3 tabs/day (which is actually quite a low dose) I know some guys on up to 18 tabs/a day!YES when I started , even on half tabs, I was feeling "out of it", anxious, doped, sluggish.... eventually it subsided , but I still get anxious and out of it feeling..

From what I read everyone reacts differently to the drug. Yes it's scary thinking how much am I gonna have to increase this pill as the symptoms get worse! I try not to focus on the negative things that may or may not happen in the future as they are not factual now..

C/L is supposed to be the "Gold Standard" .. There are times I take it and I DO feel better..

I believe we need to look after ourselves on many levels----> Drugs, Exercise, Diet, Supplements, Rest, Meditation, etc....

I take lots of supplements daily and eat less carbs, more veggies and fruit and fish/chicken..little red meat. But the one thing that helps to greatly diminish the symptoms of pd.. anxiety, stiffness, balance.. and even shakiness in my left hand is

: Exercise.

I speed walk ala John Pepper. (check him out on this site.)

Also lift weights daily. The combination of ALL these things take me back to feeling like my Normal self again..

As soon as I stop with the exercise the symptoms creep back again. I strongly recommend you do as much exercise as u can.. and continue experimenting with the C/L.

Good Luck!

MomoP profile image
MomoP in reply to gginto

Gg, thank you for your reply and wisdom. It is good advice!

Hi Greg. Hope you’re ok my man?

gginto profile image
gginto in reply to jeeves19

Hey- good to hear from you..Just messaged you!

😊👍

Momo......With some surgeries you can get a nerve block instead of stronger anesthesia. I had a nerve block for a plate/screws in a broken finger last year.

As far as c/l, it enabled me to play competitive basketball at 7AM today with 14 years of this joyful condition and faster progression the last 2 years.

Revisit c/l at some point and try meditating/deep breathing to calm down, anxiety and stress make us worse. You and doctor will figure it out even if it takes a little time.

Thank you eschneid! You give me hope! Thank you for your experience and advice! 😊

Thank you ALL for taking the time to share your experiences and advice. I am truly thankful I found this site. And I am grateful for your posts to this forum. I have learned so much from reading through numerous posts. ❤️

I was diagnosed in August of 2018, but had unrecognized symptoms for at least a couple of years before that. I didn't take any meds or mucuna (only tried it a few times) until January of this year (2021), but I do take supplements, including high-dose B1 which has been a lifesaver for me.

This January I saw my MDS. I decided to try Sinemet IR 25/100 because the tremor and dystonia were progressing to the point that I was uncomfortable all of the time. My assumption was that it would make me feel much better and would control my symptoms--I thought it would either work or not work, and I didn't really look into potential side effects. After trying it for two months (started with 1/2 pill per day and worked up gradually), I was never able to take more than two pills per day, and I felt like I was dying. I was nauseous all the time, I developed temporary anorexia/aversion to food and lost 10 lbs (which I couldn't really spare), I had constant headaches and terrible fatigue, dry eyes / pain in my eyes, severe depression, and my hair was falling out in clumps (my stylist of 10 years confirmed that I lost about half of my hair in just a few months). The only benefit was a small improvement in dystonia, and a VERY small improvement in tremor.

*Editing to add that my MDS tried adding additional Carbidopa to curb the nausea, but it didn't help at all.

I stopped taking the Sinemet after 2 months and started experimenting with mucuna. The overall improvement in my health and state of mind after stopping Sinemet was dramatic. I ended up taking a break from everything (including mucuna) for a few months because I wanted to give my body a rest, and then started mucuna again about a month ago.

I seem to be doing okay with the Barlowe's Indian Brown 40% mucuna capsules (two per day currently). It doesn't help dramatically, but it relieves enough of the dystonia and tremor that I can function much more comfortably. I don't have any of the side effects that I had with the Sinemet other than occasional very mild nausea with my first dose in the morning. I'm going to experiment with a slightly larger dose, and possibly three doses per day, but I'm working my way up to that. FYI, my MDS at Northwestern in Chicago is supportive of both the mucuna and B1.

MomoP profile image
MomoP in reply to 1LittleWillow

Hi Willow, thank you so much for taking the time to reply! When I stopped taking the C/L lat month, I immediately felt better. I had more energy, no fatigue or nausea. Of course my symptoms were still there, but they were when I was taking it. I bought too much mucuna, lol. Probably 3-4 different brands of pills, and 2 different powders. Barlowes made me sick. The others had no effect. I am taking a break from everything at the moment. I bought anything and everything anyone recommended, hoping for relief. I did buy B1 hcl too. I was taking a variety of supplements while initially trying the B1, never reaching a high dose. Now that I’ve stopped everything, I may try only the B1 again. While taking c/l and Selegiline, I developed a cough and back aches. It’s so hard to tell what aches and pains may be side effects or from PD itself. I decided today to ask my Dr for more testing, DAT? PET? I have a feeling she’ll say no. At my initial appointment with her, I asked about a DAT, and she said it wasn’t needed. She only recommends it when the diagnosis is questionable. I think after trying different meds, I’d like to ask again. Good luck to you. Thanks again

1LittleWillow profile image
1LittleWillow in reply to MomoP

Momo, did you try the Barlowe's white or the Indian brown? I tried the white, and it made me VERY nauseous. I tried Zandu Zandopa, but I didn't like all of the additives that are included in it. I also tried Nutrivita 99%, and the nausea was instantly overwhelming. It seems like all of this is just trial and error, and it's different for each person, which can be pretty frustrating.

Someone (can't remember who) suggested taking ascorbic acid (vitamin C) with mucuna to prevent nausea. I tried it, and it didn't seem to work, but what I've been doing very recently has been working really well. I eat about 1/3 banana and drink a glass of water as soon as I get up in the morning. I wait about 10 minutes, and then I take one capsule of Barlowe's Indian Brown along with 1g vitamin C (ascorbic acid, specifically), and another small glass of water with a little bit of lemon. As long as I do that, I'm not having any nausea. I wait about an hour after that to have protein.

I would absolutely give the high-dose B1 a trial while you aren't taking any other meds. It took about two months for me to start seeing improvements, and the improvements leveled off around the 7-8 month mark, but it is, along with magnesium glycinate at bedtime, and Mannitol, a supplement that I absolutely cannot do without. It eliminated all of my symptoms other than tremor, dystonia, and bradykinesia. I was experiencing debilitating fatigue, word recall issues, urinary urge incontinence, no left arm swing, left leg drag, and several other things that I can't even recall at this point. I was amazed at all of the improvements, and none of those symptoms have returned.

MomoP profile image
MomoP in reply to 1LittleWillow

Thank you again for your extensive reply. I just checked. I tried the white. It was unbearable. I was so nauseous I had to lay down. I saved your post to refer back to. I have left foot drag, no left arm swing, bradykinesia, urinary urge incontinence started recently ☹️ . My mind is sharp. Thanks for sharing. I will try what you ave done and see if it helps me too 😊

You need a second neurologist opinion. You likely do not have PD.

MomoP profile image
MomoP in reply to nsehar

Hi nsehar, thank you for your advice. I’ve had 2 say Parkinsons but I was ( and technically still am) early in this journey. But as time goes on, I wonder

kevowpd profile image
kevowpd in reply to MomoP

Bradykinesia is a pretty strong differentiator for PD. It is the cardinal PD symptom. Or, at least, it is the required symptom.

MomoP profile image
MomoP in reply to kevowpd

Thanks for replying kevowpd! One thing that concerns me is, I noticed a difference in my gait in the Fall 2020 ( no one else did, but I am pretty aware of myself). I went to my pcp in November and told him “ I’m not saying I have Parkinsons, but researching gait issues, it comes up a lot”. He watched me walk, did some minor tests in the office and said “ I have many PD patients, and you don’t have PD, no tremors, you did well on my tests,etc. but referred me to a neurologist. The first neurologist couldn’t diagnose me. She saw no problem minus a left arm swing, and wanted to wait 6 months to see if more symptoms arose. Here we are in October, and I walk unsteady and slow. I actually bought a cane. I don’t use it every day or around the house ( I’ll touch a wall or furniture sometimes)But I need it for stability sometimes when I am out with no hand to hold. It seems to be progressing too quickly in my mind. I know everyone is different, but from reading many accounts here, many people take years to diagnosis, or progression. Not being dramatic or paranoid at all. Just concerned

Juliegrace profile image
Juliegrace in reply to MomoP

That does seem like rapid progression for PD.

I'm on day 4 no improvement, have had some nausea,agitated, a little increase in tremors, a little lightheaded and dizzy getting up to quickly. Going to give it a few more days at this dosage. I'm scared also if they up the dosage. Just want some answers as to what is wrong and try to deal with the diagnosis. Still have to get a MRI of the brain to see if I had a stroke and compare it to the one from 2017 Good luck. I'll keep you in my prayers. .

MomoP profile image
MomoP in reply to Smittybear7

You too Smitty 😊 I had an mri last December. They were looking for signs of a stroke or structural abnormalities. At the time, obviously I didn’t want them to find anything wrong. It might sound bad but at one point in this journey I had wished they found a sign of a small stroke. Then I could take medication, blood thinner, eat right, etc and hopefully prevent one from ever happening again instead of being diagnosed with a progressive disease with no cure ☹️ How crazy is that! I am going to ask for additional testing. Good luck to you. Keep in touch

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