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Sinemet causing strange effects

sinemet tremor dose comtan voice

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#1 jolo

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Posted 08 May 2014 - 05:34 PM

Now 76 yo living alone. Was diagnosed with idiopathic, tremor predominant PD in 2001. Held off PD meds until Feb 2012.

As I was slowly getting weaker especially the last two years prior to taking meds. I started on Sinemet 100 x 3/d, 8am, 2pm, 8pm. This did improve my overall condition but it was short lived. One year later my condition suddenly started to deteriorate, about one hour after each dose of 150 x 3/day, to a point that I was worse off than when I started on meds in 2012. Little did I know that the Sinemet had started to wear off within one hour, I thought that I was having an allergic reaction as my tremor increased to a point that my arms would ache, I was unable to sit upright in my computer chair and really had to fight or get help to stand from a chair, I also needed help to get into or out from a car. I then started experimenting with the Sinemet by taking 1 x 100 to see how long each dose would last - just over an hour per dose. So if I started at 8am it would mean fourteen doses per day to ‘stay-on’. There didn’t seem to be a buildup nor that much of an overall improvement, but it was better than nothing.

About Feb 2014 I noticed that in the mornings I felt good and with ZERO tremor as long as I did not take a dose. So I then decided to see how long I could go in the morning without any meds and discovered that I was fairly comfortable until 3pm when my symptoms gradually started to reappear which to me meant I am still producing some dopamine naturally during the night and there is a gradual wearing off throughout the morning and part of the afternoon, I feel in a more natural state.

After much experimenting, for the past five months I have been starting my meds at 2pm, 150 Sinemet + 200 Comtan, same at 4pm, same at 7pm (2 then 3 hours apart) and that lasts me until between 10.30pm and 11.30pm, I usually try to be in bed before 10.30pm. I then find It very difficult to get out of bed at around 12.30 as the meds have worn off but it becomes easier as the night goes by. In the mornings my voice is normal, but after the Sinemet takes hold my voice becomes much weaker and my right cheek pulls upward so that I sometimes close my right eye when speaking (someone might think I am having a stroke). There is also a slight increase in my tremors and I don’t feel any stronger or improved movement. The other thing that happens is that if the meds wear off like when I forget a dose my state comes crashing down with severe tremors and weakness, leaving me in very much worse condition than I was before taking the first dose.

At night I usually need to get out of bed at about midnight, 3am, 5am, the finally 7am, and each time is much easier.

I really don’t understand what is happening and would appreciate an opinion.



#2 Dr. Okun

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Posted 09 May 2014 - 06:47 AM

I think one thing that stands out is that delaying therapy for 10 years if there are any bothersome symptoms is not the recommended course of most experts.  There is a window when the meds work the best and this is usually the first 5-10 years; later in PD other symptoms such as walking, talking, thinking and fluctuations (dyskinesia, wearing off, etc.) may appear.  Along with your doc the best course is to try to find the best dose and more importantly interval (sounds like you are doing an amazing job working on this part).  Consider in some cases the patch, duodena pump, apomorphine pump, and DBS could be helpful for the types of symptoms you are experiencing if low and frequent doses of sine met or sine met CR do not help.  Hope that gets you and your doc started.


Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#3 Didi

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Posted 09 May 2014 - 01:11 PM

Dr. Okum,
Your answer to the gentleman is confusing me a little.  My husband is recently diagnosed at age 50 and is delaying meds right now. Why would it be bad to delay meds - even for 10 years, if the meds do not slow progression? -- other than not enjoying the benefit of having better quality of life during those 10 years. It seems to me the question above was about the symptoms this person is dealing with at this point, right now, in the present. Do you think if he had been taking meds during the 10 years before it would change his symptoms today or his reactions to the meds today? I mean, wouldn't the disease have progressed the same, and wouldn't he be in the same place today anyway? Wouldn't he be experiencing everything he is now regardless of whether he had taken the meds 10 years ago?

I don't mean to hijack this persons thread but your answer just got me thinking, since my husband and I are struggling over when to decide to take meds. The meds come with their own side effects and risks, so it seems sometimes you are trading one set of problems for another. But if there is some reason that delaying meds will make things more difficult in the future for my husband we need to know? For now, the way I look at it is - if the symptoms get so bad that he cannot exercise and be active then I know we need to start the meds because things can only go downhill from there. But if he can still stay active - is there any harm in delaying?

Again -- I'm so sorry for interrupting, I'm not sure if I should have made this a separate post?



#4 Dr. Okun

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Posted 11 May 2014 - 08:07 AM

No problem in asking your question.  One big issue the experts deal with is levodopa or dopaminergic phobia.  People trying to delay the medications for some mythical long-term benefit.  Almost all experts agree that if symptoms are bothersome that there are many great reasons to start medicines and to enjoy the benefits.  There should be few if any side effects when beginning medications and the meds work best in the beginning and middle stages of PD.  The idea that delaying the medications will keep you from the development of dyskinesia and fluctuations later is complex and likely not going to end the way patients imagine it.  I tell my patients to start medications for any symptoms that are bothersome and if they develop fluctuations or dyskinesia we adjust them or use other strategies.  The tragedy I have seen many times are the people who delay the medications for many years; suffer; and miss many great years of their lives---when they realize what has happened the years are lost and the disease has progressed and the meds do not help them as much as they had hoped.

 

I have a post about levodopa phobia and about levodopa not accelerating disease progression that you may enjoy:  


Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#5 miracleseeker

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Posted 11 May 2014 - 11:06 PM

Dr Okun,

 

My sister has a friend who is in her mid 50's and she's had PD for a few years now.  She does not take any medication and is at a stage where she's in a wheelchair and has great trouble breathing.  She would rather be like this then take any drugs for it because she said she does not feel like herself when she takes them.  She's sleepy all the time and cannot think straight.

 

I'm sure lots of people take their medication and think it's a god send and there are others who tolerate the side effects so they can function as best as they can. My sister's friend is in the minority group that would rather be the way she is because at least she can still be around her family and can think straight and enjoy their company.

 

My mom was always over medicated.  I regret not being more attentive to her doctor appointments and how she seemed at the time.  I always blamed her tiredness as her being lazy and not trying to get better.  Do I think all the extra doses she took all these years did damage?  Yes but that's my opinion.  So taking the medication at the start may help with better quality of life and I never think it will make the disease worse but the side effects of the medication themselves build up.  Again that's my opinion.



#6 Dr. Okun

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Posted 12 May 2014 - 10:59 AM

Thank you for your comments.  I respect them.  I do think the medication is helpful in almost every Parkinson's disease patient but I do want to be sure that people reading this thread know that is my opinion from my own years of practice.


Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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