Having problems finding the right meds. - Cure Parkinson's

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Having problems finding the right meds.

Gloria-John profile image
23 Replies

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

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Gloria-John profile image
Gloria-John
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23 Replies
honeycombe3 profile image
honeycombe3

Vent away.

CheriH profile image
CheriH

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 :)

Court profile image
Court in reply to CheriH

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 :-)

CheriH profile image
CheriH in reply to Court

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 :)

Court profile image
Court in reply to CheriH

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 :-)

Court profile image
Court in reply to Court

Because my stress levels are high at the moment I have decided not to alter my meds as I am pretty stable at the moment.

Will keep you posted.

Sue :-)

ram927 profile image
ram927

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

harding55 profile image
harding55 in reply to ram927

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.

ram927 profile image
ram927 in reply to harding55

Thank you I know it takes time but and I know patience is a virtue but

lmbanni profile image
lmbanni

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!

LizaJane profile image
LizaJane

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!

Hikoi profile image
Hikoi

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.

carolineb211 profile image
carolineb211

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

Court profile image
Court in reply to carolineb211

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.

lady54 profile image
lady54 in reply to

What are your current meds?

in reply to lady54

* Stalevo 100mg 4 times daily

*Carb/Levo 100mg once daily

*Amantadine 100mg 2 times daily

lady54 profile image
lady54 in reply to

Thanks. What were you taking that made you so tired?

in reply to lady54

To the best of my memory: Miranex & RequipXL Extended-Release Tablets

wifeofparky profile image
wifeofparky

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.

shasha profile image
shasha

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 ??

carolineb211 profile image
carolineb211

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.

Gloria-John profile image
Gloria-John

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..

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