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cepd

DBS and Carbidopa/Levodopa

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Diagnosed in 2004 - when taking carbidopa/levodopa before DBS always had a worsening of symptons (temor, couldn't walk, some dyskinesia) until threshold reached (20-30 mins) and the all symptoms controlled. Major issues were rigidity, slowness and fatigue. Same coming down. Always had down time because dose (maxed at 1 1/2 tabs of 25/100) every three hours never lasted more than 2 hours and increasingly less. Tried other meds - not good for me.

 

Post DBS - Great response off meds - but when I add meds all kinds of problems - epecially violent tremors...

 

Can't reduce meds because until I reach that threshold I have increased symptoms.

 

Seen best Docs...threshold never seems to come down, DBS done late Feb 2012 - now Late July 2012. Been hell.

 

Without clonazapam meds won't kick in at all - drug makes me tired. Get little exercise these days.

 

Breathing now becoming an issue.

 

Prior to DBS could walk and run a little before meds in AM. Tried turning DBS off - very weak without it now.

 

I've got top notch programmer/md now who wants to redo DBS - but I am wary because of meds issue.

 

Is it common to have worsening of symptoms while meds kick-in and out? or don;t reach threshold?

 

New doc noted I was much better off meds than when coming on/off.

 

Thanks

-CEPD

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The more common scenario is someone that has good benefit but even slight increases in DBS cause dyskinesia and the meds cannot be easily adjusted around this issue.

 

What you describe would make me suspicious for a lead location issue, so I would pursue imaging of the lead and threshold testing.

 

You need to be very cautious about deciding to re-do the surgery, and the risks and benefits need to be in your favor.

 

Sometimes losing the "kick" is good as motor fluctuations are gone, but sometimes it is bad if you don't turn on.

 

Keep us posted.

 

We see one DBS case like this a week from all over the globe, and they are complex.

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Thank you for the response.

 

I have been on a schedule where I take carbidopa/levodopa (1 1/2 tabs of 25/100) every 3 hours. After 2 hours I am down with severe tremors and worsening Parkinson's symptoms. Not much different before DBS, except I can't take more meds in between doses because it appears to build up too much as the day goes on.

 

I have seen no progress and it has been 4 months and am getting frustrated. Is there somewhere this might be heading and can I expect improvement in the future? People often say it takes up to a year to see optimum results. Should I stay on the same routine and hope for improvement?

 

Thanks,

CEPD

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I usually wait 6 months and then do advanced imaging, measure the DBS lead positions, and then check thresholds for benefit and side effect at each contact. You may need to ask your center if they can do this or seek an expert opinion.

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I have read that mucuna pruriens combined with carbidopa/lodosyn has helped people who have difficulty with sinemet. The kick in is faster and smoother and it lasts longer than sinemet. Some have replaced sinemet with this combination. Do you know anything about this? If so, do you know how much mucuna and lodosyn I would need? I take 1 1/2 sinemet 25/100 every 3 hours. I need to try something else since what I am doing is not working.

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Many people have tried this and had success,

 

The problem is that in most countries it is not regulated and therefore you may have to try one manufacturer and then titrate the dose with your neurologist to find what works best for you.

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Thank you for your response. I have another question. My neurologist observed me the other day from 8:30 am until after 5 pm - I stayed in her office all day. She worked on the sinemet dosage so it would be more effective with the DBS. The next day I took 2/3 of a dose of 25/100 every 1 1/2 hours and it worked reasonably well. By about 7 pm I felt head pressure and blurred vision. Is that from the DBS or could it be from a buildup of the sinemet? Thanks

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Head pressure and blurred vision are not typically associated with sinemet unless the the blood pressure is dropping too much with a higher dose (autonomic issues). If this is the case, drinking more water, adding compression stockings, and possibly starting drugs like midodrine or florinef may help. The key will be checking sitting and standing blood pressures, and running them by your doc (check BPs during the episodes).

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Hi again,

I am experiencing numbness in the big toe of each foot when the DBS is at 2.5 amps and on 1 1/2 meds every 3 hours. Do you have any idea what may be causing this?

Thanks

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The easiest thing to do is to is to turn it off under the supervision of your doctor and determine whether it is related. Bilateral foot numbness in exactly the same place is unlikely related to DBS and also unlikely related to medications. A full neurological examination may be the next step.

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Dr. Okun,

 

To have a better quality of life I've been experimenting with turning the DBS on at times and off at other times. It has worked in that I have been able to take my wife out for the first time in months. When DBS is off I can take extra sinemet to keep going and I am able to relax more easily. The down side is that I've had to turn the DBS down or I get severe dyskenisas in my right leg. With the voltage reduced the past two nights I am waking up because I am not breathing. My body had adjusted to the new higher settings and now respiratory issues which had been a problem before the DBS now seems to be life threatening. I had considered turning it off completely and taking SInemet CR like before DBS. I think I am in trouble.

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Yes, I would suggest going back to your doctor asap or the emergency room if you feel acutely ill and in any danger.

 

You may want to check the lead position on imaging and have them run thresholds. It is usually best in PD not to make too many changes in programming once you find the best setting.

 

If you still have dyskinesia at the best setting and it is bothersome, you may consider amantadine or a rescue GPi DBS as two options.

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Dr Okun,

 

Thank you again for this forum.

 

I wanted you to know that things seem to be turning around for me. What we seem to have discovered is that the DBS currently set at Bi-polar 2.1 and 2.3 while not Enhancing and Extending Sinemet has had great effect with Azilect - added 30 minutes of on time to the 2 hour dose (full 2 hours) and Comtan has enhanced the sinemet requiring less and less Sinemet. Prior to DBS these products only offered marginal improvements when I used them. The Comtan/Sinemet is going to take some tweaking - dsykenias. As I increase the amps - very slowly .1 every 10 days - I expect greater improvement and less dosing.

 

The pressure on my scalp is gone and numbness in my toes almost gone.

 

Question: I had been on Azilect .5mg for 1 week and moved up to 1MG on Monday. Took the 1 MG this morning with a berry smoothie - Blood pressure went from 125/75 to 225/74 in 3 minutes. Grabbed a sublimgual B12 (don't know why) and was at 125/75 again n 3 minutes..

I remember years ago there was a warning about Tyramine and Azilect that I thought had been lifted. My smoothie was full of

raspberries which are loaded with Tyramine. First thing I am going to do is elimate the raspberries. Do you think it wise to split the dose? Take whole before bed? Might it have nothing to do with Tyramine? Any Azilect alternatives?

 

This is so important to me because being di-phasic and having a high level off dose anxiety (don't know why, but will deal with it)

Azilect has allowed me to forgo the daytime Clonazpam which was often necessary to get back me back on and was way too sedating for me - even at very low doses - wet finger and pick up some powder. Without daytime Clonazapin my quality of life improves 100% the sky is bluer than I can remember.

 

The past 2 weeks I had been trying to overlap but in the end was overdosing - no regrets because on Saturday morning of Labor Day weekend at 8:30 AM - as clear a days as there ever was - my wife and boarded the Staten Island Ferry (still free) for a round trip in the beautiful and busy New York Harbor - she is more beautiful than when we married thirty years ago!

 

Dr Changizi put a stop to that and our hope is that the DBS begins to takeover and previously reported thresholds increase if we move slowly enough.

 

Hope appears from the most unexpected places.

 

Thanks again for your help.

 

CEPD

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I am glad hope has returned! This is a great story. You may want to eliminate the raspberries for a short time but then slowly reintroduce. Studies would suggest that the tyramine and Azilect is ok, but you can slowly reintroduce and monitor BP. One single abnormal BP may not be accurate and could be anxiety (like the white coat doctor syndrome). Good luck.

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Hi Dr. Okun,

As I said I am doing much better. I am having more dyskinesia with the Comtan. Is there anything that can help with this? I would rather not use another drug. Is there something natural that can be used to counter this happening? Does more exercise help? Is there anything I can do?

 

As I always I appreciate your advice and help.

Chris

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It is possible but the manufacturer recommends against it as it could change dose and also could stain your teeth.

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This may seem very simplistic but does the dosage of sinemet indicate how long it will last? For example, I am taking Comtan with sinemet on every other dose. I am getting lots of dyskinesia. The meds are lasting about two hours. If I reduce the sinemet will it last as long?

 

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You would think it is that simple but it is not! As PD progresses the meds last less between doses probably due to changes in brain buffering.

 

I usually will stop com tan and find the right dose of regular sine met 25/100 when this happens and give the sine met more frequently. Comtan (part of Stalevo) is well know to induce dyskinesia.

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Dr Okun,

 

I wanted to give you an update - you were a valued lifeline during the darkest days.   My neurostimulation device was removed mid-September 2013.

 

I am scheduled for re-install Nov22....about a 50% chance I will keep that appointment.

 

Do you know if the patient friendly DBS surgery is for real?   Any doctors using it?  My new Neurosurgeon, uses MRI during surgery, but I need to be

awake.

 

Thanks

cepd

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