Hi all, I’ve recently been experiencing wearing off symptoms only 2 / 3 hours after taking Sinemet meds. Limbs feel heavy, tremors worse, exhausted as my body is so tense all the time. Sometimes I just try to walk it off, not very successful! The neurologist has upped my dosage to 1x25mg plus 1x12.5mg Sinemet every 3 hours, (previously it was 4 hours). This is bringing me up to max dosage as I also take a CR 50mg when I go to bed.
Any ideas how to cope with the reduced on time would be appreciated. I’m finding it hard to cope with a normal day, and a house move and holiday coming up! I’ve only been on meds about 2 years so it’s a worry they are not helping so much now. I do exercise but recognise I need to do more!
Thanks!
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Yes, I can see why you are reluctant to add more meds so early. My husband was diagnosed about 5 years ago, although probably had it a few years before. Entacapone was added a year ago. He takes 3 x Sinemet 12.5mg + Entacapone 4 times a day and Cocareldopa 25mg/100mg at night.
He doesn't have tremors but his balance is getting much worse as well as panic/anxiety attacks. Its all so awful isn't it ?!
We just had a few days away, splashed out on a 5 star hotel . Amazing place but rather spoilt by husband managing to fall out of bed at least once a night so very little sleep was had ! The day we returned(Sunday) he fell over in the house , cut his arm...blood all over the place....and couldn't get up. It was a paramedic call out.....fortunately came quite quickly.
I hope you get some help with your meds. It's all quite a delicate balance to keep some in reserve.
Sorry to hear your husband has had such a bad fall and the difficulties on holiday. My balance isn’t affected (yet!) and I haven’t lost my sense of smell, it’s strange the differing range of issues people suffer from. Stress and poor sleep make my symptoms worse so moving house could be a factor! I’m moving to a different part of the UK so will need to find a new neurologist, hopefully with a more holistic approach and less pills.
Thank you again for taking the time to reply, it’s so helpful to be able to have a discussion with someone who understands the problems. All the best to you and your husband.
Hi. Sorry to hear about your husband falling and having panic/anxiety attacks. As Caregivers we deal with situations, look for better solutions or prevention methods and then move forward. Doctors will ask how many times has your husband fallen in the past few months. My response is I can tell you about the last few days but if I were to keep track of all the falls I would be the one with anxiety. We find it best to be aware and move forward.
Jalia, look up Parkinson's and anxiety on Health Unlocked and on reputable websites. Might want to try Mannitol Balance for anxiety (can also help with facial masking and apathy). Also, for anxiety try music therapy, meditation, tai chi, exercise (any kind), Zen coloring (digital coloring with music in the background), 15 minutes of alone time, and once a day have hubby write down all his worries then throw the paper away. All of these are good for the Caregiver as well.
Thank you so much for your helpful reply. I'll take on board your ideas. He has very recently engaged with a psychotherapist for his anxiety/panic attacks . He does short bouts if exercise each day on treadmill, exercise bike and punch bag. I like the idea of writing down worries etc and will put that to him!
Thank you for your reply. At present he has 2mg Diazepam to take when necessary which helps sometimes. I shall certainly bear this in mind.
May I say how very impressed I am , after reading your bio, with what you are doing to aid your husband. I shall take what I can from this to help my husband .
Exercise hard beginning 10-15 minutes after taking pills. i feel better after hard exercise ( I take a spinning class, but any simple activity done to your max should work).
I had the dbs surgery also and it helped reduce my sinemet. It also had an additional benefit - I can drive again, including parking almost straight! I think the significant change was to my balance, which seems to help sense staying in lane.
Hubby has increased fatigue and falls. Neurologist upped his dosage of C/L 25/125 2 tabs 3x daily to 4x daily. I'm testing out the best time to take - kind of tricky to take and not interfere with protein at meals. Gave him 1 extra dose 2.5 hours after his regular dose at lunchtime. Was planning on doing this 2x during the day but haven't figured it out yet. Mostly because we do not eat meals at the same time every day, sometimes an hour earlier/later.
This has worked pretty well for about a year, then he got a light dose of covid and we can’t seem to hit the right balance again at the moment. He is getting shaking just prior to each dose.
We try and eat at 9, 1, 6. Though I often find him in the pantry snacking on nuts which mightn’t help.
I’m revisiting the b1 he takes. He has been taking the same amount for ages and over the last year when he was feeling very good. Daphne from the b1 group thinks he might need a break from it and to restart on a tiny bit less so that is this week’s experiment.
Hello and welcome. I have had Parkinson's Disease since 2011. Sinemet is not an easy drug to manage. I take three of the 25/100 tablets four- times a day. I also take Primepaxole three - times a day and Amantadine twice a day. These are dopamine agonists that assist with maintaining levels of dopamine. I have tried Entacapone with no success. Finding the right combination of drugs is a balancing act, best managed by professionals. I still struggle with this problem. Please consult a qualified neurologist who is experienced in handling Parkinson's Disease medical issues. Where I live there are few.
May the Lord bless and comfor you and your family.
I believe it’s normal to experience longer off times as the disease worsens. I only get about one hour of on time each time i take a CL dose. There are add on meds that can lengthen on time. In my case they did not work well or led to unacceptable side effects like compulsive behaviors. The next step is to consider DBS surgery/implants as I understand it. But it does not help everyone. And some pay a heavy price to reduce tremors , like loss of the ability to speak or walk. I’m awaiting an appointment with an MDS to see if DBS surgery/implants will help me. The wait time in my area to see a MDS is 6 months. No idea how long the surgery wait will be. Meanwhile I am having some luck with efforts to increase dopamine naturally, through diet, exercise, meditation, and contemplative prayer. Contemplative prayer is especially helpful.
Thank you Gallowglass. I have noticed that my symptoms and on/off times are very much affected by poor sleep, (years of that!) and stress/anxiety. I'm glad to hear that you're finding some help from natural ways to increase dopamine, good luck with the DBS.
I takek Mucana Puriens which is a natural form of Levadopa. I find it works well but neurologist recently prescribed Sinemet CR 200-50 which is a slow release sinemet and it does last longer between doses.
Thank you for replying. I did ask the neurologist and the Parkinson's nurse (in the UK) but neither were prepared to discuss Mucuna. Can I ask how much you take and how often?
yes I saw Mucana post on this site so I purchased some. I showed neurologist and he said he couldn’t recommend me using it as he didn’t know anything about it so I left it for a year. I wasn’t happy with how meds were working so I decided to try mucana. I found they work faster but seemed to still need half dose of sinamet too.
I’ve tried a few different brands but found Dopa Mucana from an online company called piping rock work best for me. They are 350mg and contain 52.5mg of L dopa. I have 1 x 4 times day and have just started slow release sinemet x 2.
Thank you everyone for the detailed replies, so very helpful, I'm going through them all now! Sorry for my slow response but I've been away visiting a new grandson who arrived earlier than anticipated, all well thankfully but I have been a bit distracted! 2 grandsons in 6 months, I feel very blessed indeed.
have you watched Laurie Mischley’s videos. I suggest you sign up to her Parkinson’s school and watch her videos. They are very helpful. It costs $10usd per month to join.
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