i've been taking c/l 25/100 started with 2, dr. kept raising dosage to finally 5 a day. got horribly ill. couldn't keep anything down. lost 8 pounds in 7 days (don't need to lose weight). started again with 2 a day then 2 1/2 a day-back to terrible nausea. dr gave me hydroxyzine for nausea. helps somewhat with nausea but so sedating i hate it. i have fibro/chronic fatigue, adrenal insufficiency and a number of other health issues that require a vast number of meds. was functioning for a few hours a day until pd diagnosis. don't know what to do???
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nadine111
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i've been in it for three months but seems like forever. initially i had no problems until i did so stopped completely. waited for a week to start again at 2 c/l a day. immediate terrible nausea. husband suggested i reduce to 1/2 a pill twice a day. not sure what to do. any advise very welcomed.
Hi Nadine, I am assuming you're taking the immediate release form of C / l. I am taking the Carbidopa levodopa ER which is generic, have never gotten sick from that, however when I was taking the immediate-release I was awfully sick. The ER stands for extended release you could call the doctor and ask him to change you to that kind of medication. That's awful losing all that weight especially since you don't need to lose the weight. Good luck hope you're going to be feeling better Mary.
I also use med cannabis for sleep, works about 50% of the time, sometimes it even makes anxiety and tremor levels worse, crazy... there's no rhyme or reason cant even enjoy a few cocktails like I use to do in the evening, alcohol shoots up my anxiety level big time...ohh ya and almost forgot, my sex drive is off the charts and I have no where to go with it, and ya ya ya I know what someone is going to say "What about masturbation?" well to be truthful the orgasm feels ten times better then when I didn't have PD but with a little surprise right after peeking, tremors and anxiety level go into overdrive and I feel horrible for a few hours, God really does have a wonderful sense of humor...
Lets see, what did PD take from my life that I use to enjoy,
1.) No more joy of eating anything (Protein depletes the c/l "on" time)
2.) Enjoying a few cocktails at days end (Now alcohol causes intense anxiety)
3.) No more descent sleep (4-6 hrs is the new norm, waking up 1-2 times)
4.) No more orgasms (feels 10 times better, but causes major anxiety spike right
after peak)
5.) No more singing (I have been lead singer in 11 bands in my life, now I have a
major tremor out break and spiking anxiety when I sing, picture what that
looks like on stage...
6.) Smoking medical canni ( 50-50 chance it will cause major anxiety/leg tremors
Only thing left to do is bitch and moan on the forums.....
love the list. no hate the list. drat- i miss #4-too many years of fibro pain took care of that. none of my old friends would believe that one. miss so much of my life. i use cannabis candies except they take forever before they work. i can't inhale so no smoking. we just moved from a three story to a one story. if i can ever get over this nausea hoping to at least get out of doors before the rains come non-stop. thank you so much. loved your post.
We are all different! I am sensitive to lots of the PD medications, Ropinerole, Entecapone, Stalevo etc. As I am completely phobic about anything to do with sickness I couldn’t stand the intense nausea and indeed the empty retching all these caused. However the one medication I can tolerate is Sinemet in both formats - I take the Sinemet Plus (instant acting) formula during the day and the CR (controlled release) formula at night.
I also take a half strength Madopar if I need a quick fix - maybe it’s worth asking your Consultant to prescribe this next time.
thank you for your suggestions. i appreciate the time those of you who wrote me took. i know every day can be a difficult one with little energy. after fighting fibro and chronic fatigue for 15 years i can understand how hard it can be to write someone. i admit to being scared, all these new meds, new terms, new side effects and exercise oh dear..that' s another story.
I too had extreme nausea from cl. My pharmacist tol me not to take it on a empty stomach. Since then over a year, I take it after I eat. If I have protein, like meat, I wait about an hour. So far so good! Wish you luck.
i forgot about waiting an hour after i eat to take the pill. thanks for reminding me. will try it. thanks so much!!
Are you taking it with food or on an empty stomach? I can't keep C/L down without food in my stomach....but then you're supposed to time your meals away from protein and that gets to be a challenge. My second neuro told me not to worry about the protien and just focus on keeping it down. Lots of luck. Oh, and I couldn't keep seniment down no matter what did.
thank you. i've broke down eating a cracker or two with the c/l. still difficult. hopefully will get better with time. been recommended that i switch to the c/l er. waiting to hear what the doctor says about that idea.
I make sure I have enough food in my stomach when I take my drugs. I feel that it must be something with a lot of carbs. I have also learned to recognize the beginning of my stomach starting to turn and if I catch it quick enough a pop like ginger ale will stop it. I hope you can figure something out for yourself. Lots of luck.
I started out taking 3, 100mg of c/l each day when first diagnosed 3.5 years ago.
Currently I take 5, 250mg of c/l a day and have always had mild nausea for about 20-30 minutes when taking my morning c/l doses, I just eat the crust off of one piece of any brand wheat bread or a few salt less crackers and nausea gone in 5 minutes, but as you well know, everyone's chemistry reacts differently, its all trial and error...
PS.. Unfortunately my body is very, very sensitive to the protein c/l clash, their definitely not friends, so my PD is a pain in the ass, two headed monster. I have made numerous changes to my diet and count and log every gram of protein I swallow. For breakfast a banana, then a late lunch with under 10gms of protein that is not from shell fish or red meat. For supper I stay under 20gms of protein having the choice of one serving from any type of meat, chicken or fish with a small side veggie and green tossed salad with vinaigrette dressing, NO creamy dressings.
Hope you find what works for you, stay positive, live on these forums and many other PD forums all over the net and you can usually find answers or a direction to go.
thank you so much for all your advise. am so impressed with how you are dealing with this change to your life. i've had fibro etc. for many years so bed had been my friend. now i'm trying trying to get up and walk. figure i'd rather be in rotten pain than deal with shaking. crazy but getting me moving. again, thanks....
My husband found it was the cup of tea in the morning after taking the c/l that was making him ill. Now he just has it with water and uridine on an empty stomach and seems ok. But he is only taking 1 a day.
May I suggest Omeprazole (Prilosec) 40mg daily, take in morning 30 min. before eating. Try to not have more than 2 cups coffee daily as it is acidic. The Prilosec is over the counter. You can still take Hydroxyzine, but do it at bedtime as it will help with sleep. Sounds like you need to reduce your stomach acid. Please try.
i do take prilosec in the morning with all my morning pills that i take after i've had a bite to eat. i take hydrocortisone so need to eat something with it. so confusing-pills when wake up, pills before eat, after take morning pills, and on and on. i keep hoping to take less meds instead i find myself taking more. hate it and know my husband must hate the cost which is insane. thank you for getting back to me. luckily i don't drink coffee. would imagine that would be awful to give up. i do need to figure out what is causing the stomach acid though. will work on that. like the idea of taking the hydroxyzine at night if can figure out the nausea situation. would imagine i might get some sleep if take it in the evening. when in the evening would you suggest i take it?
Sometimes it is the lack of stomach acid which is the problem which seems illogical as the stomach feels too acid. Have you tried taking a digestive enzyme to help with digestion? My husband takes NOW super enzymes with each meal ( get the capsules not tablets as they are hard to swallow). I think this has helped his digestion.
Take the Hydroxyzine 30 min. before you get in bed. Try Prilosec 40 mg in morning before Breakfast and then again at bedtime and see if it makes a difference.
ask your Dr. about Domperidone.I took it 3 x day efore meals for several months until I got adjusted to taking c/l 4 x day. Has to be ordered from Canada
I had terrible nausea with regular c/l and could only take 1/2 with food. I switched to c/l cr (continuous release) and now have no nausea. It might work for you.
i've switched to the cr a few days ago. taking prilosec twice a day. still nauseous. yesterday spent the day
throwing up. i hadn't thrown up for 50 years only to start now with regular c/l and on to the cr. any idea how long it will take before my body can handle this med?
Try taking it with a carbohydrate. In the beginning I only took half of one for a week 3x day, then took a whole one. My neurologist said not to worry about starting with half. Just work my way up and have a carb with it. Once in a while if I forget to eat with it or have dairy with it I get nausea. Good luck.
I never take it on an empty stomach, I take a few bites of wheat bread or a few saltines, just make sure you dont eat a protien based meal two hours before or after you take c/l, I have to monitor my protien intake very very closley, every person is differnet though, some dont even have to worry about protien, not me I had to revamp my whole diet to stay under 40g of protien a day or it effects the c/l from doing its job.
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