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kronron

What helps with Dyskinesia?

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PD is usually pretty slow to progress.  Different for everyone of course, but typical is fairly slow progression.  "Young Onset" is usually slower than the more typical older onset.  "Young" being under 45-50 at diagnosis or major cardinal symptom onset.

 

I know Amantadine is used by some to help with dyskenesia.  There are a number of other drugs under development to help with that too.

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PD is usually pretty slow to progress.  Different for everyone of course, but typical is fairly slow progression.  "Young Onset" is usually slower than the more typical older onset.  "Young" being under 45-50 at diagnosis or major cardinal symptom onset.

 

I know Amantadine is used by some to help with dyskenesia.  There are a number of other drugs under development to help with that too.

 

How come you stop taking Azilect? Did it help at all?

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I had a bad reaction to Azilect. After a few weeks on it I was having problems with confusion and short term memory loss. I also started to hallucinate. Within a couple days of stopping Azilect that started to go away. Within a few more days I was was basically back to normal.

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I had audio hallucinations when I took a very low dose of Amantadine. We can all have different responses to the same medications.

 

Dianne

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So just wanted to find out if there is medication that helps with dyskinesia?

 

 

How fast does PD progress. Ive had it for 2 years. 

Hi Kronron

Looks like your topic got hyjacked.I know a few people who greatly suffer from dyskinsia.From what i have read taking meds at a lower dose (C/L) also at more frequent helps with IM.I have them in the form of myoclonic jerks especially at wearing off.Im experminting with comtan and using a lowerC/L dose,the jury is still out on this self venture.hard to find a MD doc around here who really knows their trade.

I do know another friend who also had terrible dyskinesia,she had DBS ,unawake surgery and now free from it,a miracle.

Good luck kronron come back anytime ,good friend.

john

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Thread drift is distinct from thread hijack.  Kronron asked me specifically about why I stopped Azilect (I presume because I have it crossed out in my sig block).  He asked too about rate of progression.  Since he was the OP I think that's a perfectly fine drift on the thread.

 

Anyway, yes, reducing the quantity of meds (while possibly increasing frequency) helps some with dyskinesia.  Other folks use, as mentioned before, amantadine for controlling dyskinesias.  And DBS is also useful, largely because it usually allows a reducing in C/L doses.  

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In my case I started dyskinesia a short one year after starting carbidopa/levodopa.

For many, dyskinesia induced my this medication comes after many years of usage.

My research lead me to believe that carbidopa was the cause.  So I decided to treat my PD using Mucuna Pruriens to get the needed levodopa.  Within 3 days of switching from sinemet to the natural form of levodopa dyskinesia was reduced 90%.  A few months later no more dyskinesia.

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In my case I started dyskinesia a short one year after starting carbidopa/levodopa.

For many, dyskinesia induced my this medication comes after many years of usage.

My research lead me to believe that carbidopa was the cause.  So I decided to treat my PD using Mucuna Pruriens to get the needed levodopa.  Within 3 days of switching from sinemet to the natural form of levodopa dyskinesia was reduced 90%.  A few months later no more dyskinesia.

 

So all you take is  Mucuna Pruriens and you can go to work and function ok with energy?

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Not exactly kronron. I follow the Hinz amino acid protocol. This means that I take my levodopa from Mucuna powder but keep my body chemistry balanced using other supplements. Fortunately I am retired and I don't have the challenge to tame PD and work at the same time. But overall I feel good and have normal energy levels. I am just glad I don't have to watch dyskinesia progress anymore.

Edited by hercules957
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Hercules- I will look into that, thanks!! My system isn't terribly happy with the level of c/l required to keep the tremors away.

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Hi kronron,

 

Dyskinesias result from long-term use of C/L.  They are "bad movements" and occur when there is too much medication in the system (and they get worse over time).  I was prescribed Amantadine on a couple different occasions in the past to help with the dyskinesias (I have had PD for 15 years); however, I never noticed any real benefit from that drug.  I have found that eating some protein will tend to calm my dyskinesias; however, the protein will also impact the effectiveness of the C/L, so I have had to figure out how much to consume (which is a fine balance).  I have also found that caffeine and stress will exacerbate my dyskinesias, so I try to minimize those when I really don't want to be bothered with dyskinesias.  The good news is that I am now on the Duopa pump, which has really helped with both PD symptoms and medication side effects.  My oral meds are gone and I am only on the gel.  It's been a huge help.  I highly recommend that others consider the pump...it's a very effective treatment!

 

Blessings,

Mihai

Edited by Mihai
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Hi kronron,

 

Dyskinesias result from long-term use of C/L.  They are "bad movements" and occur when there is too much medication in the system (and they get worse over time).  I was prescribed Amantadine on a couple different occasions in the past to help with the dyskinesias (I have had PD for 15 years); however, I never noticed any real benefit from that drug.  I have found that eating some protein will tend to calm my dyskinesias; however, the protein will also impact the effectiveness of the C/L, so I have had to figure out how much to consume (which is a fine balance).  I have also found that caffeine and stress will exacerbate my dyskinesias, so I try to minimize those when I really don't want to be bothered with dyskinesias.  The good news is that I am now on the Duopa pump, which has really helped with both PD symptoms and medication side effects.  My oral meds are gone and I am only on the gel.  It's been a huge help.  I highly recommend that others consider the pump...it's a very effective treatment!

 

Blessings,

Mihai

 

whats a Duopa pump? I want that too

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It's a method of delivering C/L directly to the intestine through a peg-j tube inserted into the stomach.  The pump facilitates a consistent flow of medication throughout the day, so the "peaks and valleys" with regular PD meds are essentially minimized (or eliminated).  It was approved as a treatment option by the FDA in February of this year and is available on the market in the US.

 

Mihai

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There are at least a couple folks on here using the Duopa pump.  It's a good potential alternative to DBS if you either really don't want to go for brain surgery, or if you aren't eligible for DBS in the first place.  Or if you just want to delay the need for DBS.

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I've had the Duopa pump for 11 months. It gives me a steady dose of carb/levo for up to 16 hours/day. That means no on/off fluctuations. It totally eliminates the issue of having to schedule my medication around mealtimes. It gives me the freedom to schedule things and expect that I won't have a sudden off period and have to cancel at the last minute. I can take a nap without worrying about the alarm on my phone waking me up. I never miss a dose or wonder if I took a pill.

 

I still have PD. It didn't l make my balance any better or make my eyes less dry or fix my faulty thermostat. I still have bladder and bowel issues. It didn't cure my slowed thought processes or restore any lost functions. Unlike DBS, it did not worsen my cognition. 

 

The dose can be fine tuned by my MDS to give me maximum benefit with the least amount of dyskinesia. If I am stressed or tired, I can give myself a little extra at the push of a button up to five times a day.

 

I love my Duopa.

 

Dianne

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Hi Dianne,

 

Glad to hear it is working well for you...I am having the same experience!  I'm not sure why more people are not looking into it.  I know that having a peg-j tube can be a bit intimidating, but it's really not that bad, especially given the benefits!

 

Blessings,

Mihai

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Hi kronron,

 

Dyskinesias result from long-term use of C/L.  They are "bad movements" and occur when there is too much medication in the system (and they get worse over time).  I was prescribed Amantadine on a couple different occasions in the past to help with the dyskinesias (I have had PD for 15 years); however, I never noticed any real benefit from that drug.  I have found that eating some protein will tend to calm my dyskinesias; however, the protein will also impact the effectiveness of the C/L, so I have had to figure out how much to consume (which is a fine balance).  I have also found that caffeine and stress will exacerbate my dyskinesias, so I try to minimize those when I really don't want to be bothered with dyskinesias.  The good news is that I am now on the Duopa pump, which has really helped with both PD symptoms and medication side effects.  My oral meds are gone and I am only on the gel.  It's been a huge help.  I highly recommend that others consider the pump...it's a very effective treatment!

 

Blessings,

Mihai

A second the caffeine comment.  I get worse with just a diet soda sometimes 

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Hi Mihai and Beau's mom,

question for both of you on  DUOPA PUMP.Does is mean that you are are protected against dyskinesia while you are using the pump?Or is the risk lower compared to when you were on oral dopa meds?I thought some people developed dyskinesia with long term dopa meds( 4 or 5yrs),I learnt.I would also like to know for how long you were on oral medications before you considered getting the surgery.Did your MDS recommended the pump over DBS? I mean in terms of the advantages and risks/side effects involved.

Your insights would be highly appreciated as I have just started the C/L therapy journey.Thanks for the support I got on this forum.I want to explore all available therapy with little or no side effects as much as possible.

Thanks again.

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otolorin, there is not less risk of developing dyskinesia with Duopa. It is carb/levo in a consistently infused gel. Dyskinesia can be fine-tuned much more easily with the pump than with pills. If I'm having dyskinesia, my MDS can lower my dose to minimize dyskinesia. What Duopa means for me is no off time during the day, no med alarms going off every 2 1/2 hours to remind me to take carb/levo, which I would often turn off and forget to take the pill anyway. 

The Duopa pump was suggested to me after one year of oral carb/levo (2012) when it was still in clinical trials. I was not allowed to participate in the trials and had to wait until November 2015 to get the pump after it was FDA approved. I had to live without it for two months due to the development of duodenal ulcers and just got it back last week. I already feel better.

Mihai, your turn. ;)

Dianne

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Hi All, My husband has the Duodopa Pump which I wrote about at length, in the 'Open Forum' Section under 'Duodopa Pump' back in October.

Just like to add to the discussion here that it is now 17 months since he's had it fitted and he is showing no signs of adverse effects, or progression of the PD at this stage. His Neuro is extremely happy & he's due for his 6 mthly check up next month.

 His energy levels remain high and I think the amount of physical work he does around the property (thanks to the pump) helps keep him ahead of any progression in the disease. (If it was called exercise, he wouldn't do it :rolleyes:). 

Having said that he still has to take care not to over-do what he does, or he pays for it the next day with exhaustion, and needing to use the extra doses from his pump for breakthrough tremors. He also still has shivering and sweating issues depending on the temp, but copes with these, and getting out of bed during the night is a bit slow but he does it alone (though he's off the pump by then). He still takes 1-2 Madopar Rapid 62.5 and 1 Sinemet CR 200/50 at night when the pump is removed, and takes no other medication whatsoever - but does take some basic vitamin/mineral supps.

As mentioned in the earlier post, he was diagnosed in 2009 after 2 yrs of investigation, and eventually all oral PD meds became ineffective - bad reactions from anti-agonists, and in the end barely no 'on' time with the L/C.

He was a total mess of tremors, toes curling, needed assistance with dressing, couldn't drive, body hunched over, shuffling movement, left arm still, stiff limbs, depression - the typical PD stuff. Now I can't keep up with him and the pump has given him back his pre-PD life.

He doesn't have any dyskinsia even though his main medication all this time has been L/C. I know of one person who has severe dyskinsia and is in the process of discussions with his Neuro. He has had DBS in the past. Unfortunately, don't know yet what the outcome was with his Neuro. Will post more when I hear.

Hubby was at the stage where the only option left was DBS and it would have been about 12 months going through the raft of specialist interviews to see if he was a suitable candidate.

The pump was relatively new here at the time and was offered as a possible, immediate relief option. In his case a total no-brainer. He was also not wanting to go down the DBS route but would have for some relief from his symptoms.

We would recommend that anyone who has the opportunity to try out this pump to have a go. If, after trying it and you find it not to your liking, it can be removed by a simple medical procedure. My guy would fight to the death to stop anyone taking it from him. 

And, I don't know what the service is like in the US, but here in Australia the company offers fantastic service and advice both technical and medical (PD nurse) by phone and periodic contact.

I hope you all continue to enjoy a long and happy experience with your pumps.

 

Edited by Abbie
Breaking up into smaller paras for easier reading
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Thanks Beau's mom and Abbie for your insights,it is pleasant to learn more from you about this pump.

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On ‎12‎/‎7‎/‎2016 at 4:35 PM, Shaker Dave said:

High CBD cannabis if you're lucky enough to live where it's available.

Sharker, would Marinol do the same thing?

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Thanks, Abbie, for your insight on the Duopa pump.  We were recently introduced to it at a Parkinson's support group,

but I thought my husband might be too far along with PD for it to be effective.  We will discuss it with our new doctor

next month.

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