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waruna01    44
On 8/8/2017 at 10:28 PM, MurrayPD2 said:

The DBS does not "need" Sinemet.  DNS does not replace the medication, but I know 2 people I met in person who no longer take PD meds because their DBS was so successful.  It is more likely someone will need some lower dosage of medication as things are fine tuned. Or, it could treat what the medicine was no longer effective  for.  However, they say if Sinemet is no longer effective, it is too late to get a DBS.   I am going to get my mine re-installed in about 3 weeks

I beg to,differ. Most people need Sinemet after DBS. It's a very bad idea to drastically cut Sinemet dose after dbs beyond 50% of pre dbs totltal dose. It will make things worse later on.DBS can't replace medication. It works best in unison with meds. Most people like to claim they are med free after dbs and think dbs cured their PD but this will come and bite them in the back later on. You may find few who can pull this off for few years but I would say it's,safe to say over 99% needs Sinemet after dbs. 

Read page 15 about meds after DBS.

Guide_to_DBS_Stimulation_Therapy.pdf

Edited by waruna01

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em45    13

I have to agree with waruna on this as i had DBS  just over 3years ago i am now on 4 halves of Sinemet per day reduced big time but  helps.

Em

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janvier    4
On 8/4/2017 at 8:38 AM, waruna01 said:

High frequency over 130 ( I prefer 100 if it keeps tremors under control, 130 is still okay not too high) and high pulse over 60-90 ( prefer 60) width and high voltages are needed if your tremors are not controlled properly but it will also cause tightening of muscles in your throat which can cause speech and swallowing and freezing  issues. So it's best to keep everything below above mention limits to avoid side effects.  Low frequency, bi polar settings, low pulse width and low voltages are key to reducing side effects and will also extend your battery life substantially close to 8 + years. Reducing one parameter may need compensating from another. E.g. You can go with a higher voltage if you keep frequncy low under 100. It will even out battery wear since low frequency reduces battery usage) It's about finding the right balance while keep all these parameters low as possible which can extend battery life and reduce side effects .

Hi Waruna01. Of course as you say the lower the numbers the better it is. It will also avoid eating up the battery. Under the condition that the settings satisfy your movement disorder complaints. Otherwise  it is good to have minimum side effects, but this does not help much if you have to tolerate a tremor in your right hand and you cannot safely walk which were  the main reasons for undergoing surgery.  Added to that you have to take additional medication to suppress the tremor and walking difficulties. So it is really a trade-off. Yesterday I was with my neurologist who treated me in the last 20 years and he said no matter how much you increase the current you will have trouble if you go down from 180 to 130 Hz frequency. 

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janvier    4

Another point as contribution to this discussion. Since the day of my DBS STN, my scalp skin itches. If I try to touch my head a little bit the itching becomes worse. My Neurosurgeon says do not touch your head. I went to several dermatologists all they can do is to give a shampoo with Cortisone to wash the head, but that does not help either. Does anyone else have this problem and what do you do about it.

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Linda Garren    736

janvier, I don't have that problem since I haven't had DBS, but there are two suggestions I'd like to offer that often help with incessant itchingP

1.  Place ice on the area that itches, rather than scratching.  It will numb the area.

2.  Try very soft, slow scratching, which can be effective and does not lead to worse itching like intense scratching can do.

I'm so sorry you are dealing with this. It can be so annoying and uncomfortable.

 

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janvier    4
4 hours ago, Linda Garren said:

janvier, I don't have that problem since I haven't had DBS, but there are two suggestions I'd like to offer that often help with incessant itchingP

1.  Place ice on the area that itches, rather than scratching.  It will numb the area.

2.  Try very soft, slow scratching, which can be effective and does not lead to worse itching like intense scratching can do.

I'm so sorry you are dealing with this. It can be so annoying and uncomfortable.

 

Thank you Linda for the valuable advice. If I place ice on the scalp will it not affect the leads and the rest and cause some kind of trouble? 

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Linda Garren    736

Oh, yikes!  Mr. Parkinson must have stepped into my brain when I posted without thinking about that.. Can't multitask nor multi- think.

Definitely ask your surgeon or MDS about using ice.  My apologies, janvier.

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waruna01    44
17 hours ago, janvier said:

Another point as contribution to this discussion. Since the day of my DBS STN, my scalp skin itches. If I try to touch my head a little bit the itching becomes worse. My Neurosurgeon says do not touch your head. I went to several dermatologists all they can do is to give a shampoo with Cortisone to wash the head, but that does not help either. Does anyone else have this problem and what do you do about it.

Use a caster or coconut oil on head?

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waruna01    44
18 hours ago, janvier said:

Hi Waruna01. Of course as you say the lower the numbers the better it is. It will also avoid eating up the battery. Under the condition that the settings satisfy your movement disorder complaints. Otherwise  it is good to have minimum side effects, but this does not help much if you have to tolerate a tremor in your right hand and you cannot safely walk which were  the main reasons for undergoing surgery.  Added to that you have to take additional medication to suppress the tremor and walking difficulties. So it is really a trade-off. Yesterday I was with my neurologist who treated me in the last 20 years and he said no matter how much you increase the current you will have trouble if you go down from 180 to 130 Hz frequency. 

Have you tried staying with 130 for a week or two?

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janvier    4
4 hours ago, waruna01 said:

Have you tried staying with 130 for a week or two?

No I am preparing and accumulating information for the trials which is planned to take place in september. Of course I am  taking into account the views of all doctors and experienced patients that I can reach.

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janvier    4
4 hours ago, waruna01 said:

Use a caster or coconut oil on head?

Good idea. In fact I know that ladies are using coconut oil on their skin or hair to have them smooth. I'll try that. Even if it does not help it will not do any harm. By the way you made this suggestion based on any kind of experience or knowledge that anyone has done it before?

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waruna01    44
3 hours ago, janvier said:

No I am preparing and accumulating information for the trials which is planned to take place in september. Of course I am  taking into account the views of all doctors and experienced patients that I can reach.

Have them create a Group A with 180, Group B 130, and Group C with 100. Then you can switch at your convenience and see which setting works best or they can patient programmer the option to adjust frequency like amplitude so you can use remaining Groups to get additional new setting combinations.Of course you need to be stay  for at least one week on each settings to tell if its good or bad your brain néeds time to adjust for each setting 

Edited by waruna01

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MurrayPD2    219
On ‎8‎/‎11‎/‎2017 at 11:10 PM, waruna01 said:

I beg to,differ. Most people need Sinemet after DBS. It's a very bad idea to drastically cut Sinemet dose after dbs beyond 50% of pre dbs totltal dose. It will make things worse later on.DBS can't replace medication. It works best in unison with meds. Most people like to claim they are med free after dbs and think dbs cured their PD but this will come and bite them in the back later on. You may find few who can pull this off for few years but I would say it's,safe to say over 99% needs Sinemet after dbs. 

Read page 15 about meds after DBS.

Guide_to_DBS_Stimulation_Therapy.pdf

I never said you don't need sinemet.  In fact, my statement agrees with yours.  My first sentence is addressing your comment that the DBS needs sinemet to work.   The DBS is another tool. The DBS itself does not need sinemet to do its part.  However, I don't understand why you can't titrate off meds. What is the "bite" in the end?   What is the consequence in the long run for YOPD?

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janvier    4

If I may intervene. Yes the DBS does not need any medication to function and in fact in my first surgery to suppress the tremor, I abandoned  all my medication for some weeks. , although my doctor told me to do it gradually. Later to have full control of my body I started taking medication increasing the daily dosage very slowly, until the optimum was reached. In the second one, which is bilateral STN currently I am not taking any dopamine at all. With Pramipexol or Requip llife continues, but of course I have side-effects.

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waruna01    44
On 8/15/2017 at 6:56 PM, janvier said:

If I may intervene. Yes the DBS does not need any medication to function and in fact in my first surgery to suppress the tremor, I abandoned  all my medication for some weeks. , although my doctor told me to do it gradually. Later to have full control of my body I started taking medication increasing the daily dosage very slowly, until the optimum was reached. In the second one, which is bilateral STN currently I am not taking any dopamine at all. With Pramipexol or Requip llife continues, but of course I have side-effects.

Purpose of medication I.e Sinemet is not just to control tremor. It has a an overall effect throughout your body including mood, breathing, control of muscles, bladder and other vital functions of the body which dbs can't replicate. Apathy, depression  might also slowly creep in to your life without you even knowing it after some time if you discontinue Sinemet. Before being on antidepressants, make sure your sienemet dose is optimized. DBS works best with Sinemet. It's a mistake to completely stop Sinemet but one can and should likely discontinue other PD meds such as requip etc etc and just go with Sinemet only after DBS after consulting with your MD. It will reduce side effects and will simplify your life. If your MD insist on other PD medication after DBS, other than Sinemet, it's likely that your DBS was not performed well or your dbs programming is suboptimal. Sinemet is your friend after DBS. DBS will stop dyskinesia and will allow Sinemet to do its magic.

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