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02-01-2013, 09:44 AM | #1 | |||
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In Remembrance
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I seem now after 21 years to be incredibly sensitive to L-Dopa, in any form,Sinamet, Stavelo etc.
I occasionally switch on in the evening when it is up 7 or 8 hours since my last Stavelo, and that is a 50 mg tablet, cut in half by a pill cutter. So 25 mg!! In total, my daily L-dopa intake is an average of 100mg per day. (4 x 25mg) Even 25 mg gives me dyskinesia. I had to abort a dental appointment last week, since I was whrithing about so much. Planning what meds to take for my return visit to ther dentist I decided to try taking only my normal Mirapexin 2.1mg slow release. No Stavelo to avoid dyskinesia. I took the Mirapexin at 7-00am, swithed on at 8-00am, which lasted another 2.5 hours. In between doses, when I am nomally off, I am really off. I can barely alter my position. No hope answering the doop bell or phone. So what has bought me to this point? As a white rat, I have expermented with many supplements that I have checked out for safety first. Some I have taken for decades, like curcumin. I can't put my hand on my heart and say one particular supplement did the trick. I could not prove it. My hope is my meds will last longer with time, and I can reduce further to zero, and be permanently on. Some hope!! If you extrapolate what has haappened so far, it could happen. Has anyone else had or has got this pattern?? Perhaps we may find a mutual treatment Ron
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Diagnosed Nov 1991. Born 1936 |
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02-01-2013, 11:45 AM | #2 | |||
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Senior Member
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Hey Ron,
That is fantastic news! I can't say that I am having a similar experience, but I do I am now convinced to add curcumin as my main supplement. Did you say at one time that your dosage was 800-1000 mg a day? Looks like you are onto something. See this abstract: Curcumin prevents aggregation in α-synuclein by increasing reconfiguration rate.http://www.ncbi.nlm.nih.gov/pubmed?t...gan%20curcumin Is your reversal telling us that maybe neurons are more impaire or shut down rather than dying off? One nagging question is if we have a leaky blood brain barrier, should that still play a role in you dyskinesia and ultra-sensitivity? Laura |
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02-01-2013, 05:29 PM | #3 | |||
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In Remembrance
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I have been meaning to write and may do so yet. I hope you and Margaret have been keeping warm and dry. Beastly weather you've been having!
But for now, I went to PubMed and did a litttle noseing around and found a few things that you may not have tried yet. 1) Modulation of levodopa-induced motor response complications by NMDA antagonists in Parkinson's disease. Blanchet PJ, Papa SM, Metman LV, Mouradian MM, Chase TN. Neurosci Biobehav Rev. 1997 Jul;21(4):447-53. Review. PMID: 9195602 You may recall that RLSmi takes dextromethorphan, a common cough syrup. It is an NMDA antagonist. Being that it seems both safe and cheap, it might be worth a try. 2) Oral creatine supplementation attenuates L-DOPA-induced dyskinesia in 6-hydroxydopamine-lesioned rats. Valastro B, Dekundy A, Danysz W, Quack G. Behav Brain Res. 2009 Jan 30;197(1):90-6. doi: 10.1016/j.bbr.2008.08.004. Epub 2008 Aug 12. PMID: 18762218 Again, cheap and safe. 3) Modulation of dopamine receptor sensitivity by estrogen. Gordon JH, Borison RL, Diamond BI. Biol Psychiatry. 1980 Jun;15(3):389-96. PMID: 7189674 If RLSmi is reading this, I'd like to know if, assuming you still take the DXM, you have much trouble with dyskinesias? Good luck. -Rick
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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02-02-2013, 12:25 AM | #4 | ||
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Relatively slowly, am sorry to hear that you are being visited by the dyskinesia monster. I hope that you are not experiencing any profound stress in your life, as that is all it takes to induce medication sensitivities. With you low dosage of dopa, I find I difficult to to give you any advice. Maybe, up your dose of dopa and cut out the agonist and the COMT Inhibitor. I know it seems counter intuitive, but this way you might be getting more carbidopa and that may be just what you need. Maybe
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02-02-2013, 01:15 AM | #5 | ||
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Senior Member
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Ron,
As I understand it, you're telling us that you need very little levodopa, but that there's a very narrow window in which it works: too little levodopa and you're frozen, too much and you're dyskinetic. Have you tried dispersible Madopar (levodopa, benserazide)? Perhaps it might allow you to control your levodopa intake better. Stocchi et al [1] report "Compared with treatment with intermittent doses of a standard oral formulation of levodopa, continuous infusion provided significant improvement in both “off periods” and dyskinesia". The bad news is that their delivery method involved "levodopa methyl ester administered via an infusion pump connected to a nasal tube placed in the duodenum". The question is: can you get some of these benefits by sipping the Madopar suspension? I don't know the answer. I've not been prescribed this drug, so I can't report whether this works on me. Reference [1] "Intermittent vs Continuous Levodopa Administration in Patients With Advanced Parkinson DiseaseA Clinical and Pharmacokinetic Study" Fabrizio Stocchi, MD, PhD; Laura Vacca, MD, PhD; Stefano Ruggieri, MD; C. Warren Olanow, MD Arch Neurol. 2005;62(6):905-910. doi:10.1001/archneur.62.6.905. http://archneur.jamanetwork.com/arti...ticleid=788691 John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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02-02-2013, 11:47 AM | #6 | |||
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Member
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Ron...have you tried doing a liquid l-dopa so you can adjust the amount you are needing at any given time. It really helped my friend cut back very slowly until she was off of it completely and is now just doing mucuna , fava and fermented papya and just added Rhodiola rosea. I could feel that that is doing something good for her this week. Body less stiff, and was able to have better control of her muscles while exercising with me.
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02-02-2013, 03:04 PM | #7 | |||
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Senior Member
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Tried to delete my stupid misfired reply ; not sure where my head was at.
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02-02-2013, 09:56 PM | #8 | |||
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Quote:
Robert |
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"Thanks for this!" says: | soccertese (02-02-2013) |
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