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    • #24526
      Mary Beth Skylis

        Recently, my dad told me that he hasn’t had to adjust his Levodopa dosage since he had the Deep Brain Stimulation surgery. Occasionally, he shifts the timing of the drugs, but the amount is the same. 

        Have any of you had to adjust your Levodopa dosage? If so, by how much? Can you tell when the dosage is off?

      • #24799
        George Sharp

          Hi there i have not adjusted my dosage as yet i find it depends on the day what you are doing if you are using your brain a lot or it is a bad day weather wise and you are siting watching TV not as i would call it a big mental day a lot then i some time miss my middle of the day pill and i find this happened quite a bit ,so i think in that respect i would have cut it down my dosage. But it is a good point you made i must put it to my doctor ,i take a Aziect at 10 and that is a very good pill and i believe if i was on these pills instead of the levodopa i would be lot better but that is for me to find out that could be a point for me to try it out .

        • #24808

            Hi Mary Beth,

            I have been on C/L for close to 2 years. The research  says it’s effect decreases. Recently with the help of my Doctor I have added a bedtime extended release 50/200 dose.  With that I have reduced my Melatonin to 5 mg nightly. It has helped my sleep which is very important. I think it is critical to consult your Doctor for any changes. I hope that helps your Dad and others. Blessings, Mike


          • #24819

              I have been taking C/L for a few years. I started off on IR but soon started with dystonia in my foot (curled toes and cramps) so swiched to ER two tabs per 6 hours. Also tried rasagiline along the way but got serotonin syndrome and stopped. The ER worked fine for awhile but I found the first dose in the morning only lasted about 4 hours and subsequent doses about 5. I started mixing in an IR tab (leftovers!) as a bridge to the next timed ER dose and this worked for awhile but then got the dystonia back. (All of this in consultation with my neurologist). We then tried Rytary which was a Godsend for about 3 months but then of course I got one of the known side effects of irregular heartbeats and stopped.

              So long story now in the AM I take an immediate release 25/100 along with 1 ER 25/ 100 as it seems I am depleted in the AM. Two hours later a second ER 25/ 100. Then I time 5 hours from each dose for 1 ER. Seems to be working well to walk the tightrope between tremors and dystonia. I use the alarm clock on my phone to program the doses for the day. If I get tremors or dystonia I’ll adjust the timing a bit as it seems tremor for me is too little CL and dystonia is too much. I’m thankful I have a thoughtful neurologist and I should mention that I am a retired health care professional so he gives me some leeway in adjusting my meds as he says I do it in a “thoughtful way”. This may not be for everyone but it is working for me. Good luck to all.

            • #24824
              Tony de Morée

                Yes I do, almost on a regular basis. My body is like a clock, indicating On and Off periods.
                Depending on my activities during the day I take more L/D, never less.
                A good workout, like swimming, or walking 20 – 30 km, needs more Dopamine than binge watching. That’s obvious. AND for an hour’s walk I need more Dopamine too. AND don’t forget there are good days and bad days.

                • #24836

                    That is identical to how my husband does his doses…. has to up 1/2 or 1 tab ER or IR when doing cycling or exercise.   Works well…..  He had DBS in 2012, not to the STN area but the GPI so his meds reduced a little in the beginning but now are back up to the same doses, if not more unfort.

                • #24833

                    Yes I do, with my Nuerologist’s complete backing.

                    I find slow release Levadopa makes me feel depressed, where as fast release I feel great – whilst it is working. I take one first thing, then another midday (sometimes earlier) then  around 5pm, if I didn’t have this, my hands become almost unusable. I also am taking Sifrol in the am and Azilect in the pm.

                    These are the current times that work for me plus I am still working. I do find if I do heavy labour (we are renovating our house,  for the progression of PD) I am far more energetic and it is better for my mental health.

                  • #24838
                    Jo S.

                      Do you mean since I started taking C/L? If so, yes — many times. However, since I started Rytary, I haven’t needed any real adjustments. I have, however, needed to increase one of my supplemental meds (gabapentin).

                    • #24843
                      Judy Cimala

                        My husband just had another adjustment to his C/L. He takes his meds  four times a day. 6 am. , 10 am. , 2pm. , and 6pm. His dosage is the same amount each time. It consists of both regular and extended release C/L. He still has a problem getting going after the 6am. dose. Usually feeling better by 9 am.

                      • #25384
                        John Sanchelli

                          I have had DBS surgery for 6 years and I am thinking about adjusting my levodopa usage to a single dose at night of half of a 100 mg pill for total of 50 mg once at night.

                          Has anyone drastically reduced their dopamine after DBS? It has helped me with falling a lot less,

                          • #26157
                            Gregg I Daniels

                              Right hand tremor and some minor left hand tremor are my main symptoms.  I have had PD for 11 years and got DBS 2 1/2 years ago. Prior to DBS I was taking 5-6 100/25 c/l  per day.  Since DBS I now take 0 to 1 100/25 c/l a day depending on physical or emotional stress, injury, or sometimes its just worse for no reason that I can identify. DBS and a competent programmer have made a huge difference for me.  I am 72 and still able to mountain bike and ride my dirt bike and street motorcycles without having to worry about timing my pills to control the tremor.

                              • #26159
                                Mary Beth Skylis

                                  Wow, that’s quite a difference in dosage. Did you find that DBS was worth it for you?

                            • #25470
                              Mitchell Niese

                                The first 6 months post DBS I was able to go without any medication. Recently I’ve begun taking 1 or 2 C/L per day. It helps with breakthru tremors and seems to help with stiffness and slowness enough to get a good workout, which always calms me and makes me feel better. Before DBS I was taking
                                2 C/L 25/100 4 x per day and never felt as energetic as i do now, mainly because the tremors are now reduced 95%.

                              • #26150

                                  I am a newbie to PD. I was diagnosed in June 2022. I take 25 -100 three times a day and propranolol 40mg twice a day. The reason for propranolol was they think I have a bit of Essential tremor and PD. But the propranolol is a beta blocker and it slows my heart rate to 50. Thus I am tired all the time. I am considering DBS. I was hoping it would take me off the meds. Especially the Beta Blocker. Without the carbidopa/levadopa I would not be able to hold a glass of water. The meds work but really don’t like being tired a lot. I have always been an outside kind of guy, but after the morning and lunch, I have found naps. Which helps, but I have never been a napper. Now I am. My mother use to say I would skip naps because I was always afraid I would miss something. Now I don’t care. The nap makes me have more energy for the rest of the day and evening. At this point, I write fine, I have not fallen, my gait is good so most of my problems are tremor related. However, depending on the circumstance, my tremors can override the meds just for the time I am experiencing something that causes me anxiety. Like the dentist. But after the appointment, my tremors stop and revert back to being subdued. Someone tell me what the purpose of DBS surgery if your meds continue after the surgery. Can someone enlighten me. Thanks. Mike

                                  • #26160
                                    Mary Beth Skylis

                                      Michael, my dad has noticed the same trend with anxiety. He’s pretty sure that stress exacerbates his symptoms. Interesting that you’ve had a similar experience!

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