Parkinson's Disease Tulip


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Old 01-14-2010, 11:12 AM #11
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Default Debi - my bad

Looking further I find that controlled release DXM has been tested but not on PD.
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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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Old 01-14-2010, 03:16 PM #12
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Default Dyskinesia report

As I mentioned, I took a clearing day today with no DXM and the dyskinesia has returned. First time in four days! BTW, mine is the end of dose type in case that should make any difference.
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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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Old 01-15-2010, 05:13 AM #13
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Default

Quote:
Originally Posted by reverett123 View Post
Mine, at least. This is not a full report, but the effect warrants an interim one. Remember- no MAOIs nor SSRIs.
This is not Robert's bedtime program btw. I took two drops, yes, drops. Dks are gone in 30 min.
Can you tell me why no ssri's? Don't most people with pd suffer depression? If you can't take ssri's or maoi's, what do you take for depression? Is it because they also cause dyskinesia? I am taking lexapro and recently abilify was added to mix. I have suffered depression for years, it was probably an early indicator of pd. I just recently went thru a med change with my sinemet because of dyskinesia. It would be wonderful if dxm could help.
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Old 01-15-2010, 06:15 AM #14
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Lightbulb

SSRI's over time downregulate dopamine. It is a side effect that the brain tries to adjust to the change in serotonin use.

People without PD can develop movement disorders of the tongue, mouth, and neck/jaw or even RLS...typically that starts at about after 6months of daily use.

Wellbutrin is not an SSRI and some people can use this. It actually improves dopamine use.
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Old 01-15-2010, 09:09 AM #15
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Default Take two swips...

Quote:
Laura-
The rate of processing varies with individuals based on their liver enzymes. Some of us are as much as ten per cent of normal and levels build quickly at normal doses.

The DXM is bi-phasic. A little works. A little more not only doesn't but actually has an opposite effect.

If I followed your pattern, I would freeze by the second day because my liver couldn't keep up as levels rose.

I'm currently taking a day off to clear and will next test a larger dose but just every other day.
Rick,

Ha. I have a pattern, more like had. I don't have the patience for measuring and recording - wish that I did. I know that we need small doses and that the dosing is highly idiosyncratic depending on one's metabolism thanks to both you and Robert. Here's where I throw caution and my neurotransmitters to the wind, and I swip (combination of swigging and sipping directly from the bottle) small amounts and see what happens. This largely reflects my cooking style....a dash of pepper, a shake or two of balsamic vinegar, etc.

The important thing to report is that I can corroborate Rick's finding that DXM does make a difference with dyskinesia. I hadn't noted it before because I don't have it frequently and when I do it is usually tolerably mild- kind of like a restless leg. Yesterday, I somehow got off schedule with meds and dosed a little too close together- I definitely threw something out of whack...and had more dyskinesia to show for it. For the first time, I was uncomfortable with it and concerned because I was soon meeting some people I barely knew for dinner. This was around 6 PM, and my right leg was dancing noticeably. I took a swip, and within minutes, felt a calm feeling wash over me not a rush but a slow, wave throughout the body sort of feeling wherein all the tingly nerves and jump out of my skin feelings began to dissipate. It's as if all my receptors have heard a lullaby.

What's cool is that it didn't happen like an "on" switch. It took maybe 10 minutes and it seems that the 'wash over' effect on my body worked on the stressors- so I felt calm, at ease, and normal! This is what I love the most. Not only does it erase the dyskinesia, not merely mask it, mind you (this is huge in our world)but rid of it, but psychologically, it rids of any anxiety you may be feeling at the same time. Now, I wish I had used my measuring spoons instead of swipping!

I really wanted to be sure that I was experiencing the real thing. When I first started using it, I noted more fluidity with my meds- a very mild wearing off but had not tested it with dyskinesia. So now, I know that I can take it over night for neuroprotection (hopefully) and on as need basis for dyskinesia. I'm on to the next step of going back to trying it twice a day every 5 hours apart to see if this has any benefit for the meds- it seemed I had a honeymoon and that when stress enters the picture, the DXM does not help boost meds- will try this again and see. I will definitely measure.

Laura

Last edited by Conductor71; 01-15-2010 at 09:09 AM. Reason: Clear up duplicate quotation
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Old 01-15-2010, 01:02 PM #16
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Default My anti-depressant regimen;

Quote:
Originally Posted by mrsD View Post
SSRI's over time downregulate dopamine. It is a side effect that the brain tries to adjust to the change in serotonin use.

People without PD can develop movement disorders of the tongue, mouth, and neck/jaw or even RLS...typically that starts at about after 6months of daily use.

Wellbutrin is not an SSRI and some people can use this. It actually improves dopamine use.
I have been taking 150mg Welbutrin XL and 30mg Cymbalta each day for 3 years now and find this to be much better than other numerous ADs I have taken for the last 20 or so years since being diagnosed with depression.
Robert
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Old 09-06-2010, 07:39 PM #17
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Default

Anyone still using DM for diskinesias? What's the regimen, morning, noon, night? I'm 8 months into Sinemet and it was a rocky honeymoon. My ankle/foot and wrist are showing signs of diskinesias.

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Old 09-07-2010, 01:21 AM #18
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Default A New drug for dyskinesia

Santhera Pharmaceuticals, a Swiss specialty pharmaceutical company, and Ipsen, a French biopharmaceutical group, have entered into a licensing agreement for the development
and commercialization of fipamezole for territories outside of North America and Japan.

Fipamezole is currently under investigation for the treatment of levodopa-induced dyskinesia in Parkinson's disease. Initiation of a first Phase III study by Biovail is scheduled for 2011. This new agreement stipulates a data sharing, under which Ipsen has the right to use these data for its own purposes

Ron

http://www.tradingmarkets.com/news/s...t-1151521.html
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Old 09-07-2010, 07:10 AM #19
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Default

I have tried DM a few times for dyskinesia..I have taken as much as two teaspoons, and nothing

I can remember when a half teaspoon before bed relieved symptoms remarkably the next morning..Now it does absolutely nothing, and I dont know why

I wish it still did work, because I am sick of being sick..My off periods are so bad lately that they're unbearable..I literally have to take it a minute at a time somedays

I see my neuro today..Something as to change, because I cant live like this..This is not living, and I cant believe it got so bad, so fast..I actually hope there is something else is wrong with me that can be treated, and cleared up
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Old 09-07-2010, 08:37 AM #20
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Default Less is more

Steve-
DXM, like many of the things that seem to help PD, is bi-phasic. That is, it has radically different effects at different dosages. Not just a matter of intensity but an entirely different effect.

Go back and try the half teaspoon that you know once worked. If it helps now, back off even more just to figure out where you fall in the dosing range.
-Rick


Quote:
Originally Posted by stevem53 View Post
I have tried DM a few times for dyskinesia..I have taken as much as two teaspoons, and nothing

I can remember when a half teaspoon before bed relieved symptoms remarkably the next morning..Now it does absolutely nothing, and I dont know why

I wish it still did work, because I am sick of being sick..My off periods are so bad lately that they're unbearable..I literally have to take it a minute at a time somedays

I see my neuro today..Something as to change, because I cant live like this..This is not living, and I cant believe it got so bad, so fast..I actually hope there is something else is wrong with me that can be treated, and cleared up
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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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