I want to report first hat I have reduced my dose of B1 from 2.1g a day to 1,2 and I really feel that it is working now. It is early days but my tremor seems mildly better. I am not struggling to get food into my mouth, and I feel hopeful and energetic. No depression.
When I was diagnosed in January 2017 I was told to take cl 25/100 three times a day. I put that off for about 9 months because I felt I didn't need it. At that time I had none of the uncomfortable jerking which often comes now. After I obeyed orders and started 25/100 three times a day I began to get the jerking again. When I reduced my dose to half a 25/100 every 8 hours or so, it went off again.
When I told Dr Costantini that I was feeling much better on 2,1g a day, but that my tremor was worse, he advised me to increase the cl. to two whole tablets at morning and lunch and half in the evening.
I did that and the jerking got worse again, considerably worse.
Also I seem to get no advantage from Carbilev. It doesn't stop my tremor at all and I certainly don't experience on and off times. The question I have is this: does that jerking come from cl? Or is it pd?
What advice would you all give me? What if I gave up on cl? I would be grateful for any comments.
Written by
Celtis
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The jerking is caused by the levodopa. It is what we call dyskinesia. Taking immediate release or extended release form of medication? The immediate release form is more likely to cause this.
Levodopa medications are strictly for symptomatic relief, so use whatever dosage works the best.
Dr. Stanley Fahn - Myths and Mistakes in PD Treatment - Parkinson Symposium 2016
World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the UF Center for Movement Disorders and Neurorestoration also spoke and participated.
Thank you Royprop. I have learnt a lot from the videos you sent me.
Celtis,
You are already working with Dr. Costantini, just ask him about what he might suggest at this point. He is the one who needs to know what your results are after each change that he suggests. This is all part of his process in helping you determine your optimal dose. If you deprive him of this information, he can not draw accurate conclusions and it can take longer to establish your most optimal dose as well as adjustments to any meds you are taking.
Finding your correct dose is a process of elimination and we all respond differently to different supplements and meds, but Dr, C has seen more than any of us when it comes to interactions between PD meds and B-1 and likely more than any neurologist in the world!
Thank you easilly. I realise you are right and I should communicate with Dr Costantini. I always feel reluctant to take more of his time but how can he help without all the information. I am waiting for my son to be back with his IPhone next week so I can send new walking talking and pull test videos. I will ask him then.
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