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Six Tips for Managing “Off Time”

Six Tips for Managing “Off Time”

The medications developed to treat Parkinson’s disease (PD) can help manage the symptoms, including tremor or shaking, rigidity, impaired balance, and slowness of movement. However, many people with PD experience fluctuations in their symptoms as the dosage of medication wears off. The fluctuations have been characterized as “on time” – when the medication is working, or “on,” and symptoms are minimal or non-existent – and “off time” – when the medication has not yet taken effect or has worn off and symptoms from PD return. “Off times” may occur predictably, such as right before you’re due to take your next dose of medications, or they may happen unexpectedly and suddenly.

Many don’t manage “off time” well

In the recent Parkinson’s Disease in America 2017 survey, 80% of people with PD reported they currently use a carbidopa/levodopa therapy to treat their symptoms. Carbidopa/levodopa treatment is the most effective treatment available for the management of motor symptoms of PD. However, half of survey respondents who use carbidopa/levodopa therapy are experiencing “off times.” Twenty-five percent of those experiencing “off times” notice their symptoms for 3 to 6 hours a day, and another 52% report 1 to 3 hours a day when their symptoms are noticeable and affecting their daily activities. Yet 43% of those experiencing an “off time” report that they don’t take any action to manage these episodes.

“Off time” is more common as disease progresses

“Off times” become more common after people with PD have been taking medication for a longer time and as their disease progresses. While the presence of “off times” happens as a normal progression of PD, there are things that can help manage or reduce these episodes:

  1. Tell your doctor. Be sure to talk to your doctor about the “off time” episodes you’re experiencing. Note if they occur at the same time (before your next dose of medication) or sporadically. It is recommended that people with PD go to a doctor who is a movement disorders specialist. This is a specially trained neurologist who is fully educated in conditions like PD and understands the interactions of drugs used to treat the symptoms, as well as how some medications may worsen symptoms of PD.
  2. Your medication dosage or timing may be changed. Your doctor may change the amount of medication you’re taking or the timing of the dose. Adjustments to the dosage or timing may reduce “off times.”
  3. The type of carbidopa/levodopa you’re taking may be changed. Your doctor may change the form of therapy you’re receiving. Some forms of carbidopa/levodopa are extended-release formulations that release the medication steadily for a longer period of time. There are also formulations that are available as a tablet that dissolves in your mouth or a suspension that is delivered directly into your small intestine via a tube.
  4. Another medication may be added. Your doctor may add a different kind of medication to your current regimen.
  5. Consider deep brain stimulation. Some people are good candidates for deep brain stimulation (DBS), a type of surgery in which a device is implanted in the brain to deliver electrical pulses and decrease the motor symptoms of PD. Ask your doctor if DBS is an option for you.
  6. Your diet may need adjusting. What you’re eating and when, and how that coincides with your medication schedule, can impact the presence of “off times.” Talk to your doctor and a nutritionist to determine if changing your diet can help manage your “off time.”

Each individual responds differently to the various treatments available for PD, and there is no one solution that works for everyone. In addition, your needs change as the disease progresses. By working with your doctor and telling him or her about the symptoms you’re experiencing, including any “off time” you may be having, you can best manage your symptoms.

Comments

  • Samuel
    4 weeks ago

    I am very new to PD. Just started Carbidopa 25/Levodopa 100. took my second dose today. I took it about 30 minutes before I ate breakfast according to doctors instructions. I got to find out about my diet. I am also an insulin dependent diabetic. I am so confused I don’t know how to eat today. slightly sick at stomach and very sleepy.
    Thanks for being here for me

  • Chris H. moderator
    4 weeks ago

    Great to have you here, @Samuel! Diet can be a tricky thing to figure out when it comes to medication timing. Thought I’d share an article about the role of nutrition and diet with Parkinson’s with you here. Hope this helps provide some insight! – Chris, ParkinsonsDisease.net Team

  • Samuel
    4 weeks ago

    Thanks Chris. I am setting up an appointment with our diet clinic. I’m a VA patient and they take very good care of me.
    Im finding so much out about this disease. I have a good friend who was diagnosed about 6 months ago. We are both Vietnam Vets and they say our situation could be due to our exposure to Agent Orange chemicals while in country.
    Thank you

  • dianegale-Boyle
    1 month ago

    I have just been diagnosed by a MTV disorder specialist. He was very thorough
    It was suggested that I experiment with my dosage from 2 to 3 capsules every 4 hours. It’s already improved p.k ecially the first 2 doses. I am going to rehearsals in the am as well as being able to start the 630 rehearsal. I am unable to rehearse with the choir past 730 pm. I was told about neuro patch 4 for sleeping better.any suggestions? I’ve been t I’ll ld about extended release. 25 50. Changing eating time Earlier. I have a couple of th I’ll ngs coming up I’m playing a classical piece which requires concentration and control of left hand. I have had this disease for 8 years. My first doctor was a neurologist who didnt give me much direction and the second I ended up moving from Long Island New York to Arizona . I was sent to a movement disorder spe idealist who said I was stage 4 and 5 parkinson’sand I am working with a physical therapist and 3 carbi leva 3 to 4 x daily

  • dianegale-Boyle
    1 month ago

    I need to concentrate on my walking now I am walking minimally. My husband is a wonderful man but he had had 9 knee operation and has degenerative discs. I would appreciate any ideas you may have.

    Sincerely Diane Gale-Boule and Duane Boyle

  • Dan Glass moderator
    1 month ago

    Dianegale-boyle – I was a hiker before PD, and I still hike, but when I do, I use trekking poles. They sort of look like ski poles, but they’re collapsible and sturdy. Mine are made by a company called Black Diamond. They were about $100. There are others that are good, too. Just read the reviews if you choose to get some. They put me in 4wd going uphill and keep me steady on rocks or wet surfaces. I use 2 at a time.

  • anng
    3 months ago

    I was diagnosed in August, 2017. I know I had issues as far back as 2011 with tremors. I was being treated for essential tremors with different medications that did not help at all, I only got worse. During this time, I lost 80 pounds with no explanation. Got where I could not get food to my mouth much of the time and was very unsteady on my feet. After diagnosis at the University of Alabama movement disorders clinic, I was told that the weight loss was due to the increased energy expended with the tremors as they started affecting my whole body. I have actually gained about 10 pounds back and my weight is stable now.
    I am on Carbidopa-Levo 50-200 ER early morning and at bedtime and Carbidopa-Levo 25-100- 4 times a day between the ER doses. When
    the tremors are worse, which are usually in the mornings, I supplement with 2.5 mg. Diazepan which helps tremendously. I usually take the Diazepam before I have my meals along with the Carbidopa-Levo 25-100. The tremors are never completely gone but manageable.
    The thing that helped me most after the diagnosis was the intense physicial therapy – LSVT BIG. The harder the I work physically the better the tremors are. Just wish that medicare would pay for the LSVT therapy more often than every two years.

  • Jessica.Hall moderator
    2 months ago

    Hi @anng, we appreciate you being here and sharing with us. So glad to hear you have found physical therapy to be helpful and the LSVT program. I thought this article on tips for helping pay for treatments may have some beneficial information -https://parkinsonsdisease.net/basics/treatment-cost-tips/. I truly hope this is helpful. Wishing you well. Kindly, Jessica- ParkinsonsDisease.net Team Member

  • neil1610
    3 months ago

    Do you suggest massage therapy or Bowen therapy?

  • Dan Glass moderator
    1 month ago

    When I get massages (Lomi Lomi), the therapist stops my tremors at points. I’m early in the game (stage2), but I consider them essential for how much I feel jacked up by my compensated gait. Highly recommend. So does Gretchen Church https://parkinsonsdisease.net/living/parkinsons-massage/

  • pearl fu
    3 months ago

    need help!

  • pearl fu
    3 months ago

    need to open account to write

  • Chris H. moderator
    3 months ago

    Hi, @pearl-fu – Since you made this comment, you’re all set with your account to write! If you’d like to share your story, you can do so here: https://parkinsonsdisease.net/stories/. Hope this helps! – Chris, ParkinsonsDisease.net Team

  • sherryripepi
    5 months ago

    Thank you all for sharing your personal stories they are heartfelt. Bless you all.

  • Hunelgen
    5 months ago

    15 years I was diagnosed PD .I have been strugling with these off time periods for 2years, but when I consult my neurologist, he makes me feel that it is not a big problem to me, but back in my daily life i find it harder and harder to cope. Reading the article Six Tips for Managing “Off Time” I have found motivation to demand an action from my neurologist, when I consult him in 2 weeks Thank you

  • smeadows
    7 months ago

    Nothing has worked well for me so far. going onto Apomorphine soon to help wearoff from 150mg sinemet every 2 hours

  • Jessica.Hall moderator
    7 months ago

    Hi @smeadows, the trial and error with treatments can be so frustrating. Wishing you the best with your new treatment regimen. Please feel free to check back in and let us know how you are doing. Wishing you well. Kindly, Jessica-Parkinsonsdisease.net Team

  • abbymiller
    10 months ago

    Parkinsons has really affected me and my family because so many don’t understand what is going on and they won’t take the time to learn about it

  • kindyteacher
    5 months ago

    I agree. They think they understand but they really don’t. I’m so exhausted from shaking by the end of the day , yet I can’t relax because of the shaking. I work hard to hide it all day. Friends say my shaking doesn’t bother then when we go out but that’s not my concern. I don’t like going out like this. I’m trying hard to fight it by working out each day but that adds to my exhaustion. Everyone thinks they know the answer.

  • Chris H. moderator
    10 months ago

    That’s really disheartening to hear, @abbymiller. We hope to help educate and raise awareness around Parkinson’s and all of the areas it impacts. Thanks so much for taking the time to comment. – Chris, ParkinsonsDisease.net Team

  • xsurfer
    1 year ago

    Something few doctors, neurologists or Parkies know about is, the relationship between protein and carbidopa/levodopa. They compete against each other to get thru the blood/brain barrier.

    Therefore, don’t expect your meds to work very well if you take them right after eating a meal.

    Take your Sinemet (carbi/levo) 20 min. before eating or 2 hours after eating. It’s kinda trickly but it will become easier as time goes by.

  • Chris H. moderator
    1 year ago

    Thanks for mentioning this, @xsurfer. This can surely be a detail that’s missed. We actually mention this in our article about nutrition and PD here: https://parkinsonsdisease.net/treatment/nutrition-diet/. Take care! – Chris, ParkinsonsDisease.net Team

  • Owen1948
    1 year ago

    Regarding the question about speech below: I am the care giver. We have parkinson meaning as a couple, I am effected by his PD. I am hard of hearing. So he blames me for not wearing my aids, but even when I have them in, I often cannot hear him. He doesn’t practice his voice exercises. Patience is the answer, but it is a frustration.

  • Chris H. moderator
    1 year ago

    I’m sure this is frustrating, @owen1948. It can be hard to be patient when he isn’t practicing. I thought I’d share this article with you that talks about some practical ways to help when a loved one may need some extra encouragement for exercises or treatment: https://parkinsonsdisease.net/caregiver/tips-caregiving-refuses-care/. I hope this helps. – Chris, ParkinsonsDisease.net Team

  • Owen1948
    1 year ago

    This makes me interested in talking to a nutritionist. Thanks.

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