My husband initially was on C/L. For a while we thought he had been mis-diagnosed, so was completely taken off his med. After two weeks, the VA Dr. had him try Ropinerole. That totally didn't agree with him, so took him off that. Now he's started on a mild dosage of C/L.. I am at a loss as to what to do. At the VA the Drs. don't call you and so I am left to decide when to increase his meds. Should he ache when he first started his meds? Will they cause headaches or dizziness? I wish we didn't have to depend on the VA, but we do. I guess my question is, does everyone adjust their own meds? And do you feel better when you take your meds? I know everyone is different so it would be impossible for a Dr. to know what everyone should take. I am quite frustrated I guess and just need to vent. LOL
Having problems finding the right meds. - Cure Parkinson's
Having problems finding the right meds.
Vent away.
Hi Gloria-John, I definitely do not adjust my meds. My neuro wants me to call in and update him if I'm having problems, then he makes the adjustment or change. I take Stalevo 100- 1 tablet 4 times daily and Requip XL- 2mg - 4 daily. Sometimes the meds make my head feel fuzzy. After that fuzzy feeling goes away, I feel better on my meds. The meds are controlling my tremors. Sometimes the meds don't last between dosages, and my body always lets me know. I have an alarm set on my cell phone to remind me to take my meds timely because that is so important; but most often my body tells me before the alarm ever goes off.
I wish you luck with your husband. I'm a newbie and am still in the trial and error stage of medication. I've learned from others on this site that sometimes it takes a while to get on the right medication that works best for you. What works for one might not work for another. I also think that the neuro dr.'s try to start you out on the lowest and safest medication possible, and if that doesn't work, they go on to the other meds for PD. My neuro told me that there are a lot of medicines out there for PD that help. That is the important thing to remember.
I wish you and your husband the best and hope that his dr. will find a drug that will help him.
Cheri 
You sound very like me. I also take Stalevo 100, but have increased from 4 to 5, as I take one during the night. I also find they sometimes do not stop my tremor and sometimes take one before my tremor starts.
Do you find Requip helpful? I take 6mg once a day, but am not sure whether it helps as if I miss it, I do not seem to notice any difference. May try reducing to 4mg and see what happens. I was diagnosed about 5 years ago and have tried many different drugs.
Sue
Hi Sue,
I'm not sure if the Requip helps or not; but I definitely think the Stalevo is helping. Like you, I am wondering if I it would make any difference if I didn't take it; but I think it is a drug that you have to slowly come off of. When my neuro changed me to Stalevo 100 4 times daily, he told me I could decrease the Requip to 6 mg instead of 8mg. I haven't done that yet. I take the Requip in the evening. My head always feels crazy for a while after I take it. I heard many on this web site say they could not tolerate the Requip. Maybe I am one of those. I'm on so much medication, it would be nice to eliminate one. I agree, we do sound so much alike. If you decide to decrease the Requip, please let me know how it goes.
The best to you,
Cheri
Hi Cheri
As I, like you. am not sure that Requip XL prolongs the effect of Stalevo I am going to try to reduce the Requip gradually and see what, if any, difference this makes. I do not appear to have had any problems with Requip. Any problems I have encountered I tend to put down to Parkinsons - though this may not always be the case.
Apart from gambling, I have not been told of any other problems I should look for. It is interesting that you take your Requip at night. I take mine in the morning. Will let you know how it goes.
Sue
As a vet with PD caused by agent orange I/m battling VA for disability DO any of the VA specialize in PD or is it just the luck of the draw that you find one that knows what they are talking about many have good intentions but caring and knowing are two very different things
My husband is also an agent orange vet but I'm the one with PD. He gets a newsletter in the mail called the Agent Orange Review and i remember seeing that PD is now a recognized condition so you shouldn't have a hard time. Go to publichealth.va.gov/exposur.... I hope this helps.
My husband has had PD for eight years now and it was hard for them to get his meds right. I think it is for everyone. Like Cheri said, his body tells him when it is not working any more. He is on Carb/Levo 25/100 he takes 2 tabs 4 times a day. He didn't strat out this way. It has increasded slowly.
He WAS told by a couple of doctors (he has seen and changed to several) to tweek his meds himself. He was told to add half a tablet at a time. He gets the fuzzy feeling too when he first takes it. But it passes and then it "kicks in". He used to set his phone alarm too but now he just knows by his body when it's time. He is sorry for your husband's diagnose. As I am too. My prayers go out to you Gloria. It is a very hard road for both of you. Try to keep positive thoughts and always remember these doctors don't know much at all about Parkinson's. We are teaching them!! They still are researching and discovering all the other things that go along with PD other than just the tremors. If it was just the tremors this disease would not be so bad. God Bless you both!
Meds have been a problem for me also. I'm on azilect which never gave me a problem but my requip xl has given me problems. I'm not sure myself which one to try next because I always feel off in my head.. I've tried a lot of different meds and will keep trying different ones until I get it right. It is different for everyone you keep trying..good luck it is very frustrating! Vent away! We will listen!
Gloria - John
When your doctor started your husband on Requip (Ropinerole) did he introduce it slowly? In Britain we use starter packs from the pharmacy and very gradually increase dose. It can take months to get up to the right level. Was that your experience? We also take anti nausea meds if necessary until our body gets used to it.
I haven't yet found a drug that suits me. Was diagnosed a year ago . I tried Mirapexin for 6 months before coming off due to them making me feel so ill. Went on to Requip which caused hallucinations, migraine and sleep paralysis so am now coming slowly off those too.
I seem to spend my life in a dizzy haze and nothing seems to get rid of it. Some days are better than others but the giddiness is always there !
I am beginning to lose hope of getting rid of it, had it on and off for years but never this bad, the drugs just seem to make it worse.
HELP
I also had problems with Mirapexin. Also problems with Sinemet. So far seem ok on Stalevo and Requip XL.
I also had difficulty finding the right drug. The first 4 1/2 years were awful. I slept almost 24/7, felt light headed and other problems.
My family dr. took me off all meds. It took several months to be drug free. Being drug free lasted about 2 weeks. I was then put on my current meds. I can't tell you the difference!!! I am able to function now, somewhat normally (am very slow and stress really effects my meds.) I've been on my current meds about 1 1/2 years.
Hang in there. It takes awhile to get it right for your body.
What are your current meds?
My husband did not fare too well with his meds until we switched to a Movement disorder Specialist. We have one at our VA hospital. Ask them if they have one where your hisband goes.
i too have not found anything which helps me function in a normal fashion - i.e walking - my neuro said i would be able to see a 50 --70% improvement but i hvae not seen any at all ??
Sacha
I thought my meds were doing nothing, until i started to come off them!!!! I had forgotten how much pain i was in before the meds but i remember now !!!!!
Thank goodness i'm seeing Neuro next week.
Thank you for all your answers. As of right now, my husband is back on C/L 25/100. 1 1/2 x 3. And tomorrow I will be adding the time released at night. Will try to talk to the Dr. tomorrow, but that is doubtful. I didn't know whether or not to just start him off on 1/2 the time released at night or a whole one. Think I will do 1/2 tho. His pain seems to be a little better, but he can't get in & out of bed without help and he could before. Looking into some kind of grip bar to help him..
Anyone find C/L ineffective? 
Hallucination side effect & Medication Management
What does carbadopa/levadopa help the patient w/Parkinson's?
Er or CR C/L Dr response to change
