I started C/L a couple weeks ago. It made me queasy so a couple days ago the doc added a carbidopa supplement (25 mg). I can hardly keep my eyes open and my legs feel like they're ready to give out after walking just a couple blocks or so. I want to give these meds a fair shot but I am wondering if I would be better off without them.
I joined Rock Steady Boxing and at this point I can't imagine how I can keep up. Is this fatigue typical, something that can be waited out? My primary PD complaint has been a right hand/arm tremor that leads to rigidity and pain, although I've found exercise has helped a lot with the rigidity and pain.
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Beckey
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what improvements have you after taking the C/L if any. I can not function without C/L. It took some time to adjust. At least a month. The more i exercise the better my meds work.
So far, no benefits -- the tremor is worse, I'm woozy, sleepy, and unbalanced. But I also don't want to give up too soon. It's been nowhere near a month, that's for sure.
Beckey - I've never taken C/L so I'm not in a position to give advice. But when I started taking ropinirole relatively recently, it took a good month to feel any benefit. Now, about three months in, I feel so much better and the nausea has gone. I gave myself six weeks
Hi Beckey. I hate you are having such a tough time with the meds. I don't remember how often you're taking the C/L? If it's 3 or less I wouldn't think you should have a problem, but like we all know, everyone is different. Requip made me feel sick & sleepy but C/L did not. Do you take meds for anything else? Maybe they don't interact together? Does your doctor know how you're feeling? Is your dr a movement disorder specialist? You should really feel better not worse. I'm just throwing some thoughts out. Maybe you should talk to your dr again before you start RSB. Don't be nervous about RSB though, if you aren't feeling well just let them know & they won't push you. Tell them you just started new meds & they're making you feel funny. The nice thing about RSB is it's kind of like this website, everyone has PD so you can talk to others & see if any of them have similar experiences. Keep us informed on how you're doing. Take care.
Thanks Debbie! I had my RSB assessment a couple days ago. The folks there are so upbeat. I sure look forward to getting to know some other local PwP. I think the RSB folks came to UCSF to do a presentation for the movement disorder department, and my doc was super impressed. She encouraged me to check it out. The gym felt so foreign to me what with a boxing ring and punching bags! But I think I'm going to enjoy it. The coach I met with said the oldest person in the group is 89, so not to feel self-conscious, ha!
Gosh, if you live near UCSF and are able to use their expertize, you are sooooooooooo fortunate. Also, that's great that you live close enough to a boxing facility, and are taking advantage of it. I'm anxious to hear after 3 months how you are doing. 3 months will be enough time for your body to adjust to meds + some positive residual from boxing class. Just got back from church.....a powerful fulfilling sermon. My 54 year old son has his cataract surgery this Wednesday (4/13)......please everyone do send prayers/positive thoughts for him. His eyes (double vision) were the first PD symptoms. The ophthalmologist is hoping to lessen his double vision with the cataract surgery.
I get medical care at ucsf but you have to pay to use any of their facilities -- i.e., physical therapy, gym, swimming pool, etc. There is a boxing gym about four blocks from my house and that is where I had the RSB today. It was great!
I don't have to pay to see the dr. but I would have to pay for anything else which is too bad because they have brand new, terrific facilities -- pools, gym, etc. It's one thing for the public to pay but I think neuro patients should not have to.
When I began taking C/L it made me sick to my stomach. When I was about to give up I called the neurologist and got put on domperidone (Canadian name). Nausea was gone and I stuck to my original med. From what many in our group say the more drugs added the worse they feel. Check with your Doc on this. You should be started with a very low dose. I am into year ten and keep my dosage as low as I can and work out in PD exercise program called ParkinGo designed by Dr. Farley in Tuscon, Arizona and walk as much as I can. Don't give up, keep strong.
My experience in the UK was exactly as Motormouth - sickness and nausea in no way describes how ill II felt - except that no one offered me the domperidone which now know is quite usual in the UK. I now feel no sickness at all from any PD meds. I believe domperidone is not approved in USA because of side effects. No doubt that's why they seem to prescribe added carbidopa to alleviate sickness in the USA. On a low dose c/l below 3 a day 25/100 you are not getting enough carbidopa which apart from being there to boost the effects of the levadopa also helps with nausea.
MM and Paddy, I'm having good luck with over-the-counter Pepto Bismol lozenges today to counteract the C/L nausea. Does the C/L help with the tremor, btw? Does anything?
The sinemet (c/l) certainly does it for my tremor which is directly related to how long it is since I have taken it but I know it does nothing for some other people..
Beckey - you taking immediate release or controlled release (CR)? These are like 2 different drugs for me. The immediate release is awful - too much drug initially and then not enough. The CR version is smooth as silk - I take 3x day, gives me a nice steady even level, does the job without adverse effects.
Hmm. No relief whatsoever from tremors with immediate release C/L refutes the Parkinson's diagnosis.
With the immediate release version I have gotten a little bit of dyskinesia - jerky muscle twitches of the trunk of the body - but that is quite a bit different than PD tremors.
It shouldn't take a month - this is not a dopamine agonist. Either it works or it doesn't.
I would insist on further diagnostic workup from the doc to understand what is going on here.
The c/l eliminated my tremor (it was very slight though) and horrible handwriting as soon as I started it which meant I had PD. When it doesn't help you it may mean you don't have PD, but maybe something else like essential tremor. At least that's what I've heard.
Motormouth and others with Parkinsons...I also was sick to my stomach when taking Carbo/levodopa and my Dr. suggested like you to try domperidone which has its own side effects. What I found to relieve the nausea is to take a piece of ginger root, either a piece of crystallized ginger or I use fresh root in my tea or beverage. It works like magic and I told my doctor how well it works..he's impressed. Ginger works for motion sickness also and has been used for centuries. Something to consider and best of luck to everyone! Mark in Buffalo NY
I've been going through the same thing and on good advice from this forum cut back to just 1/4 tab 3x day with meals for a week, then 1/3 for a few days ( found 1/2 at breakfast gave me sweats and lightheaded) before increasing to 1/2... with a week on each increase I'm now up to 1 1/2 tabs 25/100 with meals and no positive effect, but no negative either so that's got to be progress right? It's nearly a month since I started but as the increase has been so slow I guess I'll leave it at maybe 2 for a month before I think again. Interesting disease really the way it's so different for everyone and you get to basically deal with the meds the best you can, with guidance.
Meanwhile the crescent new moon over the mountains here is just so stunning it's great to feel appreciative. Go well
I envy you the crescent moon over the mountains. What part of the country is that? I live in a very urban area (San Francisco) but I manage to grow vegetables, fruit and flowers on my roof. Great for the morale. I often yearn for a more rural environment though.
It is interesting how differently the disease plays out for each of us (not to mention the meds). Amazingly enough, one of the things I've gained from having PD is awe -- I am truly in awe of the brain and the miracle of human physiology. It's such a perfectly delicate mechanism!
We live in New Zealand on our orchard. Good for you growing where you can, it's so beneficial in many ways. San Francisco would have to be my favourite city after Wellington.
Hi Beckey yes I've been on C/L for about twelve months. I agree totally with you re fatigue and mobility but without the meds I wonder how bad my PD would be .
My daily routine is rise 7:00 take pills stiffness and tremor stars diminishing.10:30 pills. 12:30 feel completely fatigued. Go to bed. Wife wakes me at 1:30 pm to take C/L..
Stayin bed till 4:30-5:00.. Get up stiff and trembling and the routine starts over with my last pills of the day.. By 7:00 pm I'm cream crackered again. If the pain and stiffness does not go away I take some pain killers.
About 9:30 pm I go to bed tired out but some times don't get to sleep till 2or 3 am.
I usually hit the sack anywhere from 10 to 11 p.m. but many's the night I've stayed awake til the sun comes up. Other nights I can barely make it to the bed before clocking out! Either way I sleep the deepest in the morning and lately am hard put to wake up before 10:30 a.m. I'm hoping that may change once I acclimate to the C/L/
There are a number of postings on FATIGUE. I have read in academic articles that FATIGUE is commonly associated with PD, and lots of theories on "why". My son suffers from FATIGUE. IF you write FATIGUE in the above "search Parkinson's Movement" box tons of posting will come up. I found them helpful.
Hi Becky, I sympathize with you.....my first day on Sinemet CR made me so sick I was vomiting to exhaustion. My neurologist added Domperidone which I take at least 30 mins before I eat and take Sinemet after food, 4 times daily. It helped tremendously and particularly later in the day, as I was getting really bad heartburn etc. as well.
I tire easily too and often need a nap in the afternoon. I am boxing as of two weeks ago and it is a real workout and I wonder if my legs are going to give out. I have the additional complication of excessive weight gain from Mirapex prescribed for Restless Leg Syndrome.....went from 124 lbs to 168 lbs in less than 18 months. Off Mirapex now by increasing dosage of Sinemet but not losing the weight. My legs are twice the size they used to be.
This may not help you but there are similarities......BTW I live in BC Canada.
Plenty of similarities. Curses on heartburn! I've been taking Tums and they help a lot. Boy, that heartburn can really be ghastly. I was taking propranolol for restless leg but I started packing on the pounds immediately and put on 10 pounds within a few days. So I quit it. The C/L seems to be helping with the restless legs -- or it's just resolving itself somehow ... ?
Hi Beckey. I know we may have spoken about his before, but if the meds don't agree with you, then speak to your doctor and tell him you want to come off them. None of the meds are capable of slowing down the progression of the Pd, and if they don't agree with you, then why take them? Surely, if you treally need to take any medication,your neurologist can find soemthing that doeshelp you and does not disagree with you?
Boy I sure hope so John. I've tried so many meds! As you, Bailey and others have extolled the benefits of exercising -- not just tai chi but vigorous exercising -- I'm thinking that may be the primary ticket. I started Rock Steady Boxing today and plan to go frequently.
I just learned yesterday that Rock Steady Boxing will start up next month here. I'm glad but it sounds like it will only have a few classes to start with and they will overlap my PD cycling classes :(.
Becky, you seem to have the same symptoms as I have, right hand tremor with, only recently, pain in the forearm. Oddly enough this pain only started after taking meds,Neupro patch 2mg one a day and Selegilin. My tremor is considerably better, not gone. My sleep is way worse
I am considering removing the patch in the evenings to see if sleep improves
If only we didn't have to be our own lab rats, huh? By the time I finally strike the right balance of meds and dosage, I will not only be over the hill but over the entire mountain range.
The pain in your arm, is it about 4-5 inches from your elbow, between the two bones of the forearm? There is a connecting muscle there between the 2 bones of the forearm which enables us to "rotate" our forearm/wrist. The discomfort is possibly related to that muscle becoming fatigued by the unmanageable tremor. Not that it helps you to know what it is, just saying its maybe a muscle not a nerve problem and to try muscle ache remedies for relief. I use an otc anti-inflammatory like ibuprofen and alternate hot/cold packs ending with hot, then apply a muscle aches cream that contains trolamine salicylate. If you don't have the time for that routine, try just applying the cream right after a hot shower as the arm's pores will be open then. It will work better on warmed skin. I hope your effort to reduce tremor is successful.
Say, that's a new one on me, and I believe I'll give that a try asap! Yes, I get pain in that exact area as well as in my right rotator cuff. Driving can set that off and it can get so bad I have to pull over to the side of the road and chill out for a bit. Trolamine salicylate here I come...
I've got exactly the same forearm trouble and "rotate" is exactly the word I've been searching for to describe what my arm wont do.. I was beginning to worry it was more significant that it probably is.. I've never heard anyone mention this before so thanks one and all.
Hi Becky. I have the same problem with the meds. I am so tired that I try not to sit down or it will be nap (I call it "resting my eyes" time). I take Carbo/Levo and Premipexole. I have cut my Premipexole in half and I am a little less tired but my tremor is worse. Everything is a trade off. Good luck figuring it out. Peaches
The fitness level will go up as long as you keep working and pushing yourself. Don't have to go mad. You need to enjoy your exercise , that way you'll want to keep it up.
My first symptom was right hand tremor that left my arm fatigued, achy and useless. Amantadine has helped my tremor alot to the point that I really don't notice it until anxiety and stress make it flair up. I have also found when I started Carbidopa/Levadopa treatment that if my dosage wasn't high enough that I felt shaky and weak esp in my legs. You may want to ask your Dr if a little higher dosage may help.
I have been on sinemet 8 years. my dose was up to 2 C/L 25/100 every 4 hrs around the clock. I recently changed to Mucuna Dopa (Mucuna prureins), it works about the same and it is a natural product not a synthetic. When you have a incurable disease it is easy to do what you are told by the MD, just as I did. Research, be curious about the alternatives. You will, when people start labeling you, because of the listed side effects of the medications you take. Be smart, avoid the future abuse.
I want you to look it up, as I want you to look up everything before you take it. Look a clinical trials and information boards and product ads. Ask google "what is the recommended dosage for _________ in Parkinson's disease?" For me the available amount of L-dopa in my chosen mucuna was 100mg. It was an even exchange. But I also use passion flower to extend the effects of the L-dopa. Look up the use of passion flower in Parkinson's.
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