Well I tried my first dose of carbidopa levodopa last night and I only took a half a tab of a controlled dose to try it out and all I can tell you is I still feel the after affects. I’m not sure if this is normal or not but I feel like I’ve been smoking pot all night. As soon as I took the dose within 30 seconds I immediately felt like I had taken a giant bong hit and was completely stoned the whole night. Went to bed normal woke up with a little bit of a tremor have more of a tremor now and I immediately called the doctors office because she said that it should only last 4 to 6 hours and I said well the after effects are very odd. She’s thinking about giving me something else to counteract the tremor because that’s really the only thing that I have right now in terms of bodily issues.
Any information on this would be greatly helpful. I do know that everybody’s different and every body is different so we shall see what happens. Thanks in advance for any information!
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MissRita
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I think it is very unusual that you would feel a side effect after 30 seconds. Are you extremely anxious about taking c/l? If so, it may be psychosomatic...
Btw, were you diagnosed with Parkinson's by a neurologist? Do you have a resting tremor or an action tremor?
Yes by a neuro, it did help with nausea, more resting, and some action (but it depends on the day), I am not anxious about taking c/l, plus I had a massive headache for three hours after I took it last night. I also know that I could not drive if I took it again.
Thanks so much. The worst part for me has been that the tremor makes my anxiety much worse. I typically don’t have anxiety but the tremor really kicks it into overdrive and it’s a pain in the ass LOL
Additionally, the tremor also gets even much worse if I have to have a BM because the body starts to tremor like crazy! It’s nuts...
which version CR or IR of C/L are you taking and which strength 25/100 or 50/200? ( CR = Controlled Release, IR is Immediate, usually a Yellow pill). I do believe there is something out of balance.
CR but the Dr said BC it was half a tab it probably became immediate. Plus I took it at 9:45 last night and when I went to work out this morning (9 hours later) I still felt like I was still stoned and still feeling the effects which she said was not correct because typically it only lasts 4-6 hours. I did wake up with some tremors and it was a little bit worse and have been worse today so I haven’t even taken Mucuna at this point for fear of throwing that up because that has been the pattern of that lately so I had to stop that.
25/100, 1/2 tab 3x day for the first week and then one whole pill three times a day after that. But at this point the doctor is not keeping me on it until we figure out what’s going on.
They’re going to suggest some other alternatives for the tremor because that’s what’s the most debilitating at this point.
All I know is that I felt heavily medicated last night like tranquilizer medicated and I don’t do drugs to begin with so for me it was a bit scary.
Time line is correct at max should be 6 hrs but depending on how much Dopamine you use, ie reading and not walking, it could last longer, ,maybe a few hrs longer, you should 'KNOW' when it wears off.
Are you taking any things like your Mucuna as well?, it sounds like you are not needing very much CV/L at all.
Yeah I was thinking the same thing. I don’t think I need very much at all. I also think it overwhelmed my system considerably. Didn’t take any Mokuna yesterday except in the very early morning so I figured by the night time it was fully wore off.
Additionally, my tongue sort of felt numb at the tip and I also had a metallic taste. Not sure what to make of that. It’s still kind of numb today and still has a slight metallic taste.
Just as a sidebar I’m also wondering if it’s a serotonin issue as opposed to a dopamine but who knows.
But Rita, I think you are tolerating the med OK. If we expect something to work like stopping a tremor then its not going to be some piddling little drug, it is going to have effects we feel. Personally I wouldnt start taking the drug at night. It is to help movement and i would start during the day. I dont think it is clear if it helps tremor either because you woke with tremor but do you usually.? I think controlled release isnt good for you either at this stage. You would have much clearer idea with immediate release. You sound overdosed, as though you really dont need c/l yet except for tremor. My three pennies worth!
PS i always get about 10 mins or more of tremors after medication.
Typically every morning I do wake up with a tremor, I don’t tremor during the night so says my partner but you might have a point with the IR. I also think I was overdosed even though I took a half a tab the doctor maybe wants me to take a quarter tab but I don’t know how to get a quarter tab because they don’t make them that way.
I did not have any avocado last night or bananas. I’m not really sure but it makes me very nervous to even take it again because I surely don’t want to feel heavily medicated.
Me too! Now as I type this, I am having full-on action tremors - as I type my legs are bouncing etc.,. So I am wondering if this is essential tremor, but I am unsure as I do not know too much about that. The other areas that I think about are my serotonin levels and the syndrome for that. The odd thing is that I have a TON of energy, I sleep fine, eating, writing etc., are fine, and it has been 6 years so I am not sure if it is slow-moving PD or something else. I do notice digestively when taking anything that requires digestion, I do tremor until it is digested or at least settled in the stomach. Oy Vey! lol
If you are typing that means you are probably sitting intending for your legs to be at rest. If so what they are doing would be a resting tremor. Nonetheless it is unusual to have tremors on both sides in early Parkinson's. Also I think predominant leg tremors are unusual. In myself and others as far as I know tremors have been mostly in the arms. On the other hand, Parkinson's is notorious for being highly variable. Then again you are having an atypical response to levodopa. All very unclear. I suppose you could make a list of your atypical symptoms and let your neurologist puzzle over it.
Variable is correct! lol I am awaiting a phone call from the neuro. SO unclear and odd. The other area I worry about and something I keep hearing about is MSA There is not much out there in terms of research, unfortunately.
Worse drug for me ever, caused 100% insomnia and mania. I'm not allow. About half of the people I know who tried it had bad side effects. Usually that is only added on for dyskinesia.
MissRita, Lenamm is correct. Amantadine is the only tool that they have really have for dyskinesia. That being said, I tolerate it well except for some feet swelling some days. That goes away quickly. The only caution that my MDS doctor gave me is to not take the drug after 4pm. If you do, then you get insomnia and restlessness.
Are you sensetive to green tea as well? You might have a slow COMT enzyme (gene ) that controls converting dopamine to epinephrine and norepinephrine. COMT is also responsible for getting rid of Estrogen. When COMT is slow it will take time to convert dopamine to epinephrine and that’s why you were feeling euphoric for such a long time.
If this is the case, then your slow COMT might be a reason for your PD.
Green tea makes me rev because of the caffeine so I do not touch it.
Wow interesting! The last time I had my Estrogen checked it was extremely high and my progesterone/testosterone were extremely low. I menopaused July of 2020, so I’m clear there.
How do I get my COMT checked? I have never heard of it and I would like to read more.
Dear Ms Rita, I may have missed some important info but if you have any doubts about your neurologist's skill in treating P.D. and especially if you're not seeing a movement specialist, do yourself an important favor and get an evaluation and an opinion from a subspecialist.Just my two cents but I will never understand why many of the neurologists immediately start the long acting version of carbi/levo when it's time to start since it's much more difficult to titrate the dose and tailor it to your exact needs. Everything you describe as a possible after effect can be attributed to the drug. The dose was definitely too high. It's much better to start with a tiny dose of this stuff and work your way upward as long as there is no emergent reason to ramp up more quickly. Fatigue, sleepiness, nausea, metallic taste, can all be attributed to the drug. One really good fact however is that the nausea definitely will go away over a period of a couple of weeks as long as you start low. I'm referring to the immediate release form which I think is preferable when starting patients on this drug for the first time.
Hang in there, talk to your doc, there are definitely some adjustments that can be made that should smooth out your symptoms. Don't despair, seriously . If PD is the correct diagnosis, then carbi/levo will absolutely help you when it's time to initiate the drug.
It is difficult not to wonder whether your pd diagnosis is something else. I wondered that for months clinging to other possible explanations for my tremor and anxiety. I went on an ssri which helped a bit but my movement disorder specialist felt the anxiety was more about the dopamine and recommended C/l 25/100 3 x a day starting slow with half tabs for a while. The nausea was the worst side effect. It took months for me to finally believe the meds were working. My tremor and anxiety has dramatically decreased But I remember those days when the anxiety took over and I felt every symptom and wondered about every other diagnosis. I agree with seeing a movement disorder specialist if you are doubting your current neurologist. They don’t communicate very well sometimes but I think they see more than we think they do in an exam. I hope youGet some needed relief soon!
I agree that the movement specialist see more than we think they do. When I was first diagnosed the neurologist had an intern with him and was pointing out a ton of things he could see me doing to her and explaining to her what there significance was. I felt like a specimen on a Petri dish; but it was interesting.
MissRita, it's a very good possibility that it's psychosomatic/psychological as someone else pointed out here. Happens to me exactly as you described to me quite often and flummoxes the hell out of me and my wife🙂. I too start wondering if I have been wrongly diagnosed with Parkinson's instead of Essential Tremor. The answer becomes clear when I start getting the other classic PD symptoms like Bradykinesia etc.
Welcome to the world of Parkinson's🤣 I am not sure how recently you have been diagnosed, but if it is quite recent, trust me, it will get better as you learn to adapt to the disease. I am 8 years in and still learning.
One thing is true... the thin line between reality and imagination begins to blur soon after diagnosis.
Thank you. I had my first tremor in 2015 and I was formally diagnosed with mild Parkinson’s in 2017 but the doctor is still confused because after six years from the onset of a tremor I don’t have any classic symptoms of Parkinson’s meaning no Bradykinesia no dyskinesia no dystonia etc. I mean I’m grateful but it just makes me wonder.
My meds, or my mind, reacts within 30 seconds, most of the time when taking C/L. It normally causes me to tremor a lot more right after I take it. Usually in my off times I have a little tremor in my hand, but this is more of a shake on both sides in my upper body, including my mouth/head. When my meds kick in, I have very little movement accept a little dsykensia. Strange what the mind can do.
I went through all this when I started .. after the first 1/2 tab I was just waiting for all the bad side effects to hit. What I noticed fairly quickly was after about a half hour taking it was an "out of it" feeling.. detached from my body - that feeling made me anxious. YES It was like I was on drugs. Usually from all that I have heard and read , you don't feel side effects till about half hour after taking C/L- maybe you are having anxiety waiting for the side effects to hit?I also get some nausea so I started taking the Levodopa with half a banana and water- this seemed to help with the sick feeling.. I learned to have lunch about half hour after taking the C/L and that drugged feeling would dissipate - I guess because of the protein in the sandwich?
Another thing I noticed and still do is after lunch I get very sleepy which isn't good when I'm driving etc.. I feel I need to really push through this drowsiness or I drift off.. This isn't every day though. I have a left hand tremor and find the C/L actually make it worse sometimes.
I find the BEST thing altogether to manage the side effects of the drug as well as the symptoms is EXERCISE daily- I speed walk at least 45mins, as well as lift some weights...and stretch as well. If u can meditate that's also great.
I can't stress how important this is - If I don't exercise, then everything : drug side effects, pd symptoms, anxiety, shaky hand, tight legs- all this crap... are magnified. I also take lots of supplements. Try to have a nap in the afternoon- even 30 mins...
Thank you so much. I work out three days a week with a trainer but to be honest it makes it difficult because too much stress to the body brings about more tremors and so I always have to cut things somewhat short.
Your reaction to c/l seems unusual, especially having a reaction after only 30 seconds after ingestion. At 30 seconds the medication hasn’t even reached your stomach/abdomen. To be absorbed into your. bloodstream it has to go through theemulsification process in your stomach and then it has to be absorbed into the small intestine and reach the duodenum. From there it moves through your bloodstream where the medication passes through barriers till it floods the brain. This whole process takes about 20 to 30 minutes. Many, if not all PD patients, have a slowed Gastrointestinal motility (leading to a big problem with constipation). The slowed motility slows the movement of the c/l through the gut complicating and increasing the response to the medication. What you experienced may have been related to something else you injested or a medication you took 30 minutes to hours before you injested the c/l. It may have been to some anxiety about the medication, etc. In my experience, when I first took Sinemet (the same medication as c/l) I had an uncomfortable asthe first few days with nausea that lasted severeal weeks to months. I no longer havethis reaction to this miraculous medication./
I know and this is why it’s all confusing to me as well. The night that I took the dose I didn’t take anything else and it just seems so odd that it hit my system so quickly.
I'm sorry your first experience with CD/LD was not the best. However I have a few questions based on your post Why were you started in CR first? Was the dosage and integrating into your body fully explained before you got it? Since this was your first dose of it, you do realize the your body (blood brain barrier especially), has to get used to the "new " introduction of dopamine. It takes a few days up to a week to "even" out. However, that's with the normal dose, NOT CR. I can imagine you felt like you'd been on a drug high... I'm essence you were. Unless you showed signs of Parkinsonism, not isolated to Parkinson's, it's a question for your Dr why not start you on the "regular," CD/LD. That is introduced into your body by swallowing, goes into your gut before it fully dissolves then travels up to the brain. This can take upward of 45 minutes to 1 hour. But the effects from it aren't as drastic as the CR. The half life is less, therefore either a higher dose, or closer dose times are warrantee.
But, IMHO, IF you need to stay on the CR (because of your particular diagnosis), make sure you eat a much organic, plant based foods as you can, and fruits and nuts and protein and drink LOTS of water to help with flushing your body. Write down the dose times, reaction, length of reaction, exactly how you felt and report that back to your Dr. The drastic reaction you had needs to be reported ASAP, as your said you did.
If you can start on a regular CD/LD, it will, hopefully be a totally different experience.
Everyone has to find the right blend, dose, combination. It's a trial and error process, but you'll get there.
Be gradual in adding what you think might help as opposed what could help. Supplements, additional drugs might all come in process, but one thing at a time.
I am sorry that you had this reaction. I am a relatively new user(started in December) with half a tablet and gradually increased to 3 full tablets a day. I have a lot to learn about PD but I found this forum to be very helpful. Good luck!
these pictures may help you visualize what happens inside you ans=d the amount of C/L at any moment.
your body has a minimum level and a max level, where strong headaches occur, the CR will keep you in the Sweet Spot/zone better than the IR especially if you need multiple tablets to get out of the basement zone.
It’s not in my hands it’s in my feet typically both feet and at times if I’m standing up I can start to jiggle like my legs are too jiggle back-and-forth but in yet I can walk, run, go to the gym etc. This is what’s so frustrating. The doctor put me on CR because they wanted it to be long lasting I guess. First tremor 2015 officially diagnosed with mild Parkinson’s 2017.
From what I have read in your posts I seriously question whether you have Parkinsons. Tremor begins one side and in the hand. Leg tremor is a later stage. I don't think you have progressed significantly enough since diagnosis. In UK doctors protocols are to begin on IR. CR is not advised. Is your neuro a movement disorder specialist? I would get a second opinion and not take c/l. It’s not helping.
Where I go in New York State the person that I work with is a neurologist and he’s known as the tremor guy but I’m not quite sure how much of a movement disorder specialist he is? I’m pretty sure that he is and he’s been there for quite some time and I was referred to him by many other people.
I mean if it definitely is PD then maybe I just have a unique form of it? I’m not quite sure. All I know is that c/l made me feel extremely medicated and that’s not something that I want to feel.
I’m hoping he can give me a paired down prescription of carbidopa /levodopa (12.5/50) and maybe begin on the IR instead of CR.
OK. It is always difficult to give opinions without seeing the person and asking lots of questions. There are no unique forms of PD, though everyone likes to say we are all different which is true but there are some commonalities. To be diagnosed you need some or all of rigidity, stiffness, tremor and postural instability. It is progressive though people may slow this (controversial) but nothing as yet reverses it. There are many non movement problems as the autonomic nervous system is involved and all the muscles in the body are affected. It is common for instance to have trouble turning in bed, you lose your sense of smell, your arm on the affected side does not swing and you drag the leg on the affected side. That is just the beginning and nothing you wrote sounded like that to me. It will be interesting to hear your progress. Good luck.
Thank you so much for your feedback. Fortunately for me the only thing I have had since 2015 onset; 2017 dx, when I had my first tremor is exactly that tremors. I go to the gym three days a week, I have no problems turning in bed, my sense of smell is fine and my arm swings and I don’t drag my leg on the affected side. I too am very confused by it all but we shall see where we can go from here. I do know the tremors do get worse if I’m anxious or if I’m nervous.
Tremors get worse for anybody anxious or nervous, not unique to PD. Happens in essential tremor too. 99% of people with PD would have those other symptoms at diagnosis.
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There is not much out there in terms of research, unfortunately. 
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