Hello All! I've been lurking here for a while on behalf of my mom who was diagnosed with PD about a year ago. This forum seems like a very friendly and helpful community and I'm grateful to have found it. So here goes my first post!
My mom's primary symptom is a tremor in her right hand, insomnia (mostly due to the tremor) ever-so-slight off balance moments, and a bit of low-grade depression which she doesn't report but I can see because I live with her. She is working with Dr. Laurie Mischley (as well as a neurologist) who I imagine some or many of you know of, and is on a host of supplements that she prescribed.
Recently my mom decided that she wanted to try C/L, mostly in hopes that it would help the tremor. She had been using Mucuna before, in doses prescribed by Dr. Mischley, but it didn't seem to do much. So now it's been a couple of weeks on the C/L, she started with half a tab 3x's a day, now is up to a full tab 3x's a day. She feels pretty awful, especially in the morning- nauseous, exhausted, not herself, out-of-it, weird in her head, or in her words 'like I'm coming on to acid' (she's a bonafide old hippie, went to Woodstock and all the rest Anyway she definitely doesn't feel any benefit yet, not in the tremor or anything else.
So my questions are: Is this normal in the beginning with CL? Are these side-effects that she can expect to last, or just an adjustment period? Should she ride it out? Have any of you had this sort of experience in the beginning with CL, but later received a lot of benefit? I would be really grateful for you insight!
Thanks in advance....
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mollydove77
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I started 6 mos ago on C/l. 1 tab did nothing for my tremor. Taking 1.5 3 times a day. Make sure she doesn’t eat protein before or aft. I’m sure Dr Mischley prob advised her. Took me a few months to help with tremors. Stress or concerted physical activity brings them on with or without C/l. Dx 4 years ago.
I have always been responsive to c/l.
Within 60 minutes of taking a dose, I get complete relief from tremors and bradykinesia...
I suggest that you ask you mother to one day take her first c/l dose on an empty stomach and see if she then sees any benefit. Within 60 minutes you will know. If she gets nauseous doing this, she can take her first dose with a few crackers.
Levod - this is my experience as well and I always avoid any food one hour before and one hour after my C/L dose. I take two pills 3 X a day. DX 4 years
I must add - I do not take the 2 pills together - I take them about twenty minutes apart as I get a little nauseous as well (and did not want to take any food with my C/L dose); this has worked well for me for 4 years
Likewise I respond to carbidopa levodopa within 60 minutes. That has always been the case.
One thing to watch out for is the immediate release version of C/L is usually prescribed by default, but that is best for severe Parkinson's with frequent, such as every two-hours, dosing. For infrequent dosing the time-released versions are usually better, such as carbidopa levodopa ER, Sinemet CR, Rytary, or Stalevo.
If the response isn’t immediate probably not the right Dx or treatment/amount. C/L works right away for rigidity. Not sure exactly for tremor . In fact it’s one of the confirmations for Parkinson’s Dx.
I noticed a marked difference within a week of starting C/L. I was dx for three years before I started to take it. I take 1 tab 3X a day and have almost no tremors now. It also gave a tremendous boost to my stamina.
I started C/L in November - same routine 3x day 25/100 with 1/2 dose for a week to start. That ramp-up is mostly to establish GI tolerance.
Now it is Jan - I have switched to 4x day. Symptoms are not under full abatement but now tolerable. Sleep is becoming more normal with 7-8 hrs most nights, It has been a gradual but steady improvement.
There is more bio-availability if your meds are taken .5 hr before or 2 hrs after eating a meal.
Been taking it since Feb/2019 and YES , started with that "out of it" feeling- which I still feel to this day.. This feeling can bring on anxiety.. To curb the out of it/ messed up feeling , I make sure to have a meal about 45 mins after taking the Levodopa and it seems to subside- I've tested this out over a year and it DOES work- Levodopa also can make me very tired , almost drifting off after lunch.. can be concerning when driving! but this isn't all the time.. Also yes it does make me feel nauseated.. So when I take it i eat with half a banana and swill it down with water.. There are def side effects with Levodopa.. but having taken them almost a year now- manageable.. What drug doesn't have side effects- and the last thing I want to do is take drugs...especially for a long time! I've always wondered about the alternative Mucuna but the Movement specialist advised against it because he said it's not always accurate as far as a "dose" goes.. so I'm listening to him on this one. The MOST important thing of all I have found through all this is EXERCISE. Do one good cardio such as: long fast walking / cycling (indoor, outdoor) for 40 mins/ day..OR whatever your mom can handle...but she needs to push her limits a bit.. I also weight life to get all my muscles & brain activated.. Meditation , like mindfulness - can be found on YouTube and it's great for the mind/body.. There are so much more she can do but can't list here... Hope this helps!
I also had an almost immediate response to C/L, for all symptoms including tremor.
That said, not everyone responds to C/L in the same way.
I have seen on this forum as well as other places that tremor can be particularly resistant to treatment. CAN be, although in many including myself the tremor resolves.
I would try to get an urgent message to her neurologist and Laurie, and ask her what the next step is. You don’t say how long she’s been on the increased dose (1/2 to 1 three times per day). It may need more time, maybe a larger dose, or a shift in food intake. But if the side effects are bad, definitely consult her doctors...
My neurologist (a professor) told me that if you have standard parkinsons that taking C/L is like turning a light on. . You suddenly feel normal again . That if it doesn't work that way then you have Parkinsonism (looks like PD but isnt ) we had this conversation because even low dose C/L makes me feel worse and walk funny with little effect on symptoms (mine are mainly tremor with a couple of minor extras like minimal arm swing, and a limp ). Parkinsonism can be treated with non C/L meds but natural things like Mannitol and Thiamine etc are a better place to start. I'm 5 years in and started meds 1 yr ago...an antispasmodic and a dopamine agonist. On doses so low the Professor says shouldn't make a difference but most definitely does!It is an individual path we take with this diagnosis so please try other approaches cause it's worth it! And remember...too much C/L increaases symptoms as well.
Hello Kdsea , would you mind telling m about the antispasmodic you take? I find spasms to be my worse symptom, sometimes so bad I need to just move, move and move no matter how tired or sleepy I am.
The antispasmodic i take is called Artane. It is used for PD. The standard dose is around 2mg or more x 3 a day (i believe) but I get an effect at 1mg x 2 a day. I understand that there are side effects if you're an older person too. Ive been taking it for 6 wks so still working to find best timing/food etc but seems to be if I take it on 1st thing on an empty stomach followed by high protein breakfast settles my tremor dramatically.
Kdsea,Which antispasmodic and dopamine agonist do you take? Thanks for the info on how to tell
if it's PD or Parkinsonism. When I take over a certain low dosage amount of C/L my heart rate speeds up 140+. My standing heart rate (in the 90s) is constantly higher than normal (use to be in the 70s). I wonder if that's from internal tremors. I unintentionally lost a lot of weight which is not normal for me either. Wondered if that's from the constant higher pulse rate? All the docs, but one, debunked this. For now, I stopped taking Azilect, Mirapex, C/L because of side effects.
I take Artane (antispasmodic) 1 mg x twice a day. Sometimes an extra 1mg in the pm on a bad day.and Sifrol ER (agonist-extended release ) at .750 mg at night.
The Professor said a negative response to C/L is how you tell if its not standard PD. Then its a journey finding what works for you.
Parkinsonism is an umbrella term basically meaning looks like PD but symptoms must be caused by something else, hence the body's response to to C/L...its doesn't need a flood of added in L-dopa.
My husband had nausea for at least 2 mos when starting C/L. He found a cracker type snack really helped. He really liked cheezits. His doctor said early on food with C/L was not as much an issue as it is later in Parkinson's. Now he doesn't get that queasy stomach feeling. Hopefully your mom can find a non protein snack that will help her. My husband was pretty miserable with the nausea.
Your post sounded like my own daughter wrote it!! 1 year in, right hand tremor, sleep issues, anxiety etc... I started C/L and felt dreadful for quite a while. Very nauseated especially with the morning pill. It got to the point that I was nauseated when I woke thinking I had to take it! I took it with or without food, and every other combination of food and drink. It was time that made the nausea pass. Months actually. I do feel after months that it has helped the tremor and anxiety. Hope that helps you... and your mom
Misssy0202 and Sharron2,I could not tolerate Sinemet, with nausea and gut problems and was changed to Madopar, at the same dose, and had no more problems. The Levodopa is the same. I am now on a high dose with no side effects. I do not take any supplements.
Hi Molly. Welcome to the forum. A word of caution. Parkinson's disease is a highly individual disease that affects each patient differently based on a huge number of factors which I am now learning through experience can range from physiological ones to psychological ones. Dr. Mischley is well respected in the PD community, however, she should not be your first line of defense. A movement disorders specialist (MDS) should be. I would urge you to find someone at the closest university hospital and get a consultation to get a proper baseline and proceed from there.
That being said, I am surprised that mucuna pruriens wasn't effective. If Parkinson's is the diagnosis, then Mucuna Pruriens (MP) even in small doses should have been effective. Question is though, which MP product was prescribed and in what strength. There's literally hundreds of variants out there and it can be confusing. I am not sure if you have given Dr. Mischley the opportunity to exhaust her options before giving up. Can you please share with us more details about the brand and product and strength prescribed?
A collaboration between a Neurologist and a Naturopath is like an attempt to find a common ground between your wife and your lover who both want to do right by you, but detest each other 😘😂 Things can get, well, shall we say,,"complicated"
Good luck to you and your mom. I am glad that you are there for her in this day and age and there to support her. May God bless you and your family.
Thanks so much RKM, I appreciate your thoughtful response. I forgot to say in my original post that my mom also has a wonderful neurologist. My mom was taking the Now brand mucuna, 2-3 capsules 3 times a day, as per Laurie Mischley. Really didn't notice much. She seems to be feeling a bit better at this point with the CL, so she's going to stick with it for a little while and see how it goes, and we just ordered some B-1 and feel hopeful about that. I'm grateful for the wonderful resource of this community.....thank you for the prayers and bless you as well!
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Anyway she definitely doesn't feel any benefit yet, not in the tremor or anything else.
Stopping Carbidopa-Levadopa abruptly, harmful?
Sinamet CR providing no relief
How long before levodopa starts working when first introduced?
