Another failure?

Sinemet was a dud, so I'm trying the timed release version. For the first two weeks I was to take a pill at 9:30 a.m. Yesterday I stepped up per instructions to one at 9:30 a.m. and another at 2 p.m. This morning when I woke up I thought I had gone completely bonkers. I had a night of grim nightmares and a morning of "out of my tree." I'm now thoroughly depressed because it appears nothing is going to work.

That is all.

39 Replies

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  • I am so sorry , don't know what to do mary

  • Thats awful but does it give you any relief of symptoms? What strength was it?

    Beckie try not to despair, insted of thinking it wont work you could say that was too much or too fast for my body. It really does take months to get properly adjusted to meds.

  • Yes. Beckey, even if you are not going to take any more of it, whether it made any difference in your symptoms is an important piece of data.

  • It made my tremor worse! But of course that was one day.

  • When I take some carbidopa/levadopa and it makes my tremor worse I figured that meant I had raised my level higher than needed. I figured it because after time the tremor returned to manageable and i felt my medication was working again. Timing is so important with Sinemet and harder to figure out (?) maybe with the extended relaease. I've never taken sinemet extended release or Rytary but I hear it works great for some of the people that post here. But I sure do feel for you having had some horrible medication accidents myself while experimenting with new things. Big hug out to you over the internet,

  • Aw, thanks, Buzz! :-)

  • Please don't give up. One day is not enough for your body to get use to the meds it can take weeks just try to hang in there. The dreams want hurt you and the "out of my tree" will go away after a while. Try a smaller dose or even a larger dose. For me as i have said here before it took me 8 years to get it right and i still have problems but minor ones.

    When i was first dx i took requip and went through hell with side effects but they got less and less with time till they were at a level i could deal with.

    Today i take C/L and do well.

    i still have side effects but the good out weights the bad.

    That being said i just came off of 12 hours of muscle spasms, Uncontrollable movements and i could not speak. First time they lasted that long but i feel great right now. Stayed on my meds the whole time every 4 hours. It was from 4 pm yesterday to 4 am this morning. I am sore and tired but ready to start my day. Worst park is kept my wife up all night. Poor thing never complained.

  • Bailey, do you still take the requip along with the C/L? My doctor keeps adding more and more medications and I keep hoping she's going to stop some of the older ones, but she doesn't.

  • yes i do. It helps my restless leg. What meds are you taking.

  • What is the brand name of the timed release med?

    When you took sinemet did you take it on an empty stomach?

    Just trying to get more info before I post anymore.

    Thanks

  • It's just generic C/L Er 25-100, mg. tab B.

    I took sinemet and I take this one on an empty stomach, but that's because of posts I've read here. The neuro didn't mention the need for an empty stomach.

  • Just be careful of any form of protein , for at least 1 and half hour before and after consuming protein-some people with parkensons are more prone to being effected by the intake of protein then others.I take my bulk protein after my last evening dose (I don't medicate overnight) be especially careful with eggs or peanuts, they are notorious to have a long ride on your co- enzymes

    (that must carry the carbi/levadopa to the brain) and inhibits the effectiveness of your sinemet.

  • The doc don"t tell you to take on an empty stomach unfortunately. I've even seen it prescribed to be taken with meals.

    My husband took 25/100 four times a day and it really helped him. It was several years ago when he was diagnosed so I don't remember how long it took before he saw improvement.

    Give it a few days and if there is no improvement, call your neuro for advice. I don't know what else to tell you. Good luck dear.

  • Becky I'm so sorry. I hope that you and your doctor find what is best for you quickly. PD symptoms are horrible, most people just don't have a clue but we do here.

  • Beckey, I am so sorry to hear that. I find the new meds attempts to be one of the most discouraging and hard parts of this illness. I've never liked taking pills so I have to make myself do it and when I get the side effects it is really the pits! I have a drawer in my kitchen with lots of meds that I have tried and quit. Azilect, amantadine, various supplements. I keep them because they might work later. That's the other crazy thing about this illness, is that what doesn't work today may work tomorrow. Good grief we have to be tough! Thinking of you with best best hopes!

  • It's early days. I also felt groggy going onto Sinemet CR but have adjusted to it now.

    If you consider a 'day' to be 24 hours, the timing of your doses seems odd. The 9.30 dose is probably still active at 2pm when you take the second one. Then you have a massive gap until the following morning, by which time you are un-medicated. I would suggest adjusting the gaps. Worth a try anyway.

  • I was told my sinemet 25/100 only stays in my body for 4 hours and to tame it one hour before food if poss.

  • THANK YOU all for your smart, caring responses. Much appreciated!

  • I've been taking clonazepan, is that similar?

  • No. Alprazolam is the generic of xanax a sedative to treat anxiety and panic disorder. When you are under a lot of stress your back can tie up in knots. Also, lets say you give a talk in front of a lot of people and you get really nervous, it is not uncommon to start to tremble, and this is with a normal brain. Now lets say you have a bad brain like mine, and you are in a constant state of anxiety, even just relaxing at home watching TV. You cant sleep, your brain is racing and your body is all tied up in knots.

    If you can get your Doctor to give you lets say 0.5 mg of alprazolam and you take one when you take your other meds and you start feeling a lot better than you can treat your brain for constant anxiety. LOW SEROTONIN. Once my PD Doctor realized what was going on we started a new med regimen. I am at 200 mg of sertraline and I take 0.25 mg of alprazolam when I take my other meds. I am still changing both physical and mental.

  • Hi Becky, what were you taking before and for how long I can't remember I know that I did read it do you think what you're experiencing could be withdrawal from The Other Drug? Mary

  • I don't think so because I only took it for three weeks. It was sinemet.

  • May I ask how Sinemet was a "dud" for you?

  • Didn't help with a damn fool thing, PLUS, I got a bad dystonia in my foot and leg. Tremor was the same. I started getting this sensation like I was about to fall backward.

  • Beckey, everybody is different. When I first began taking Sinemet, it didn't work either, and I thought that I might not have Parkinson's after all, but essential tremor. Then I was advised to take it about an hour to half an hour before eating, and when taken this way, it worked like a magic wand for me, and I accepted that I really did have Parkinson's. That was in 2013. The Sinemet CR, the controlled release form is much smoother, and can be taken at any time, with food or without food. The time interval needs to be tweaked according to your personal needs. When I first began taking it, the chemist had typed onto the label, to be taken with food, so I carried snacks with me, and began to gain weight. Checked instructions at the manufacturer's website, and it can be with or without food, so now I have the tablet without food. The first controlled release tablet in the morning is very slow to take off, and I take one 5 mg tablet of Selegiline at the same time in the morning only, to take the edge off things while waiting for the first CR tablet to take effect. Then I have a CR tablet every four hours, my last one being about 6 to 7 p.m. This is working well for me currently, but everybody is different.

  • Thanks. This is so helpful.

  • "Hal," YOU are magic the very first dose. This is great information. Geez, I'm starting to realize I've had PD since my early 50s. Oh hey -- question. Are either Rytary or Pramipexole agonists?

  • It may not work for you but the very first time I took the 0.25 mg of Alprazolam my back pain was instantly relieved. The only thing I could compare it to was when I had a kidney stone and the hospital gave me an IV with pain med.

    Pramipexole is, Rytary is a carbidopa/ levidopa very slow release.

    I would say that it has a 3 hour max life with a 3 hour half life. You have off times but not nearly the crash of sinemet.

  • Thank you, it is very old, and inspires me to to give up.

  • I meant inspires me NOT to give up

  • I think it's important to take on empty stomach. That is 2 hours before eating or 1 hour after eating. That works for me anyway. I don't remember if I got that info from Sinemet site or not. My first neuro who was just a neuro, not a Movement Disorder Specialist, put me on schedule of 6AM, 11AM and 4PM when I was first diagnosed. So I take it at 6AM then wait an hour and eat at 7AM. Have lunch at 12AM and dinner anytime after 5PM. It is a good schedule for me. The Movement Disorder specialist has never discussed the schedule so I guess she's ok with it too. I do have a cup of black coffee after taking my sinemet at 6AM and I usually have at least 30 minutes of quiet calm time before my husband gets up. I hope you will adjust to your new meds soon. In your case you had been taking something else I guess.

  • I can see I'm going to have to become an entirely different kind of person, lol. I usually never eat meals -- I'm a grazer!

  • Hi Beckey, I completely understand. Two trials of Sinemet for two weeks each time left me with nausea, dizziness, headaches,panic attacks and diarrhea. Mirapex was a similar nightmare. My neurologist says he has never had a patient who can't tolerate Sinemet. I tolerate Azilect and Symmetrel well but my stiffness and slow walking pace(I have minimal tremor,usually at the end of the day) are now more bothersome since I want to travel while I am able. Throw in a chronic back problem and there are days when I am ready to give up. I was diagnosed a year and a half ago at 54 , a week before I gave my planned notice to retire. I have a 19 year old in college and feel like there is so much I still want to accomplish. My neurologist recently decided I should try the Sinemet extended relief. I tried a whole pill twice a day and had the same reaction plus what I would call hallucinations. I went down to a half a pill per Drs' instructions(although he made it clear this would not be as effective)and can tolerate that if I eat enough beforehand but I still get a buzzy head, a headache and an hour and a half of nausea. I basically lose the day to feeling ill. I have tried tea, ginger, crackers,etc. to no avail. After 3 weeks, I think(?) I get a little relief of my stiffness . I try to get to the gym daily, have taken LSVT BIG AND LOUD, have done boxing (but my back doesn't permit it any more) and have been doing physical therapy for almost a year. It is frustrating for me to hear about how miraculous Sinemet is when it makes me so incredibly ill. My fear is if I can't tolerate Sinemet, what is left for me? There have to be others out there with similar reactions; what are our options?

  • Beckey I'm sorry to hear. For me less was the answer. I also had/have vivid not so great dreams. Those remain but they wain. I felt out of sorts for the first while and said the same thing - bonkers. It is common what you are experiencing. I also needed a couple of months to play with amounts and times. Too much can exacerbate my symptoms. I take half 25 sinemet three times a day. Spaced evenly. It for me is the magic dose. Hang in there because it's a marathon not a race although I completely understand the desire for immediate relief and it can be disheartening to not see it right away. What is your dose and is this new to you? It gets better, it does. You are not alone although it feels like that sometimes because this is your body and mind. This forum has helped me tremendously. Ask, rant, lament... Encouragement and experience is what will help because we are all in this together.

  • How encouraging! Thanks. I take the "timed release" version, 100-25, now twice a day (I'm supposed to work up to three times a day).

  • Sorry Becky to hear of your depression regarding sinemet. I,too have a large folder of

    miracle breakthroughs on parkinson's ----- all of which died by the wayside. But there is

    no other choice but to stay proactive. Here is big hug from me. I hope it helps Dennis

  • THANK YOU :-)

  • hang in there! I just upped my dose of klonopin to three or four per day, as needed, instead of the two I have been taking and long days without sleeping well at night doesn't help much:) good luck! p.s. i have never had any relief from the extended release drugs.

  • Thanks!

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