[QUOTE=Margie.Angle;1001308]Hi Margie.Angle,

Thank you so much for your contribution. It is my 49th day of no Sinemet/Carb-Lev and I am hopeful my experience will mean something to someone someday...Like yours!

This is not data from a scientist but a possible formula that might help others in a similar position to yours. I wish that others would post their experiences they have had to help them cope with their issues.

I look forward to finding out more about the results of your Doctor visit in the coming days.

God bless you!

I have now completed 52 days with no Sinemet or Carb-Lev. My meds, all taken at 8 am and 8 pm. are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily

Here are the positives:

Absolutely no tight muscles-still as it was 52 days ago!
No problem driving
Meds taken at 8 am and 8 pm-still as it was 52 days ago!
No ON/OFF time-still as it was 52 days ago!
No problem eating-still as it was 52 days ago!
No problem sleeping-still as it was 52 days ago!
90% of the time I walk normal and type normal
70% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (getting and more pronounced)
Possibly minor vision issues
Noticeable slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy-still as it was 52 days ago
Dry mouth

The positives have way outnumbered the negatives. The most bothersome and worrisome of the negatives is the memory issue. I am constantly forgetting why I left the living room for the kitchen. I forget thoughts while having a discussion. I am getting a little confused while driving.

Overall I accept the negative because the positives are incredibly liberating!

Jim

Oops, the title should read:

No Sinemet Day 53-Thursday July 25, 2013

Sorry

Vicky here. I went to my neuro and rather than turn them both off, he turned both way down. I now am having incredible balance issues, have had to increase my Senimet as needed (I get to the point where I can do nothing because of the ridgetity , tremors); on the positive side my mood swings have slowed down and my mood is relatively smooth.

Do you ever have a point where a fog settles into your brain and you feel you are watching life from a distance? Disconnected from the body. I get that now as well as dental and eye problems. My neuro is on vacation and I will see when he gets back.

Good Luck,
Vicky

Vicky,

My wife and children tell me I have Brain Fog which leads to selective memory loss, but only when they claim I promised to take them shopping.

Seriously, the brain fog issue I can relate to. I am trying to finish a status report for my two months of no Sinemet. Only a few days ago I too began to realize my forgetfulness or brain fog is worsening. I think of something and start to execute and then realize I no longer have a clue as to what it was I was going to do. Worse yet I am having a conversation and formulating my next point, when seconds later it is my turn to speak and, lo and behold I can't remember what I was thinking!

As to watching from a distance, I have a beatiful story of a 10 year old girl from Guatemala (I am in Guatemala visiting now) with so many physical problems it is incredible to see her ever smiling face! She told a story about rising up from her bed and observing the preparation room with family all around and her body sleeping on the bed. After the operation she was able to identify each person in the room, the clothes they had on and that her mother was crying so hard. There is so much more but it was an incredible story! I will see if I can find it.

Thanks again for this report.

Sorry about the date on my last status report, if you noticed.

I have now completed 57 days with no Sinemet or Carb-Lev. My meds, all taken at 8 am and 8 pm.(+/- 2 hours, it doesn’t seem to matter) normally are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night (this was a recent reduction)
3) Prozac (stopped Prozac 07\29\2013)
4) Cogentin 1mg 2 times daily

I want to give an overall status report at this point to attempt to pull together the happenings surrounding my NO SINEMET posts. From the numbers out there of readers who are following this story I would think that there are many seeking, and many more with some desperation, the answer to their personal problem. And that being my only motive for continuing these updates, for at least as long as there continues to be interest, the following is presented. It should be noted that a much greater amount of my personal information has already been supplied in earlier pages of this post.

I continue to experience no “on and off” times, taking my meds only twice a day. I cannot place a high enough premium on these two items. I hate off and on.

My life as it is thru today is far better than it was 6 or 7 years ago. With some symptoms it is great (meds 2 times a day, “no on and off” which leads to a better overall life with PD (I think I got that right) and means I don’t have to make a choice at restaurants (why? Because I eat what I want when I want) or preparing for the “off time” by frequently overmedicating on purpose. With other symptoms they too are better, like walking normal (Ha, I even am now able to wear flip-flops).


Here are the positives:

Absolutely no tight muscles-still as it was 58 days ago!
No problem driving
Meds taken at 8 am and 8 pm-still as it was 58 days ago!
No ON/OFF time-still as it was 58 days ago!
No problem eating-still as it was 58 days ago!
No problem sleeping-still as it was 58 days ago!
90% of the time I walk normal and type normal
70% of the time no shaking of the hand/foot

I seem to be in a physical condition better than I was 6 or 7 years ago. That is not to say I am stronger, but that all my muscles are working in cooperation with each other and one side has no better advantage than the other. This however, is a call to exercise and…I’m working on it.

Here are the negatives:

Drowsiness
Moderate memory loss (becoming more of a concern)
Possibly minor vision issues
Noticeable slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy-still as it was 58 days ago
Dry mouth
Soft voice
Difficulty swallowing
Slight shortness of breath
Slight deficiency in fine motor skills on both sides

One of my negatives is the difficulty swallowing when I have a meal. It sometimes takes multiple swallows to move the food down my throat.

Another discomfort is labored breathing; more that I am aware of the breathing than it is hard. I will keep watching this one closely.

That’s it for now. Thanks for your interest.

Jim

I have now completed 61 days with no Sinemet or Carb-Lev. My meds, all taken at 8 am and 8 pm.(+/- 2 hours, it doesn’t seem to matter) normally are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night (this was a recent reduction)
3) Prozac (stopped Prozac 07\29\2013)
4) Cogentin 1mg 2 times daily


I continue to experience no “on and off” times, taking my meds only twice a day. I get up in the morning after sleeping for 8 or 9 hours and have a couple cups of coffee; not like I used to do, trying to time the “on and off” so my shave and shower don’t happen at the wrong time. I now drink the coffee because it tastes good-what a concept!

I did have a possible “on/off” moment when the family and I were getting ready to board an airplane and I suddenly realized I hadn’t taken my 8:00 pm meds. I was almost 4 hours late! Actually, what reminded me was the fact that I was sweating, which I was prone to do 60 days ago but hadn’t happened since. As I rushed to eat something so I could take the meds a sudden panic came over me. I began to think about all the articles I was reading saying to quit Parkinson meds suddenly could result in death. I boarded the plane, watched a movie and no further problems were encounterd.

Here are the positives:

Absolutely no tight muscles-still as it was 61 days ago!
No problem driving
Meds taken at 8 am and 8 pm-still as it was 61 days ago!
No ON/OFF time-still as it was 61 days ago!
No problem eating-still as it was 61 days ago!
No problem sleeping-still as it was 61 days ago!
90% of the time I walk normal and type normal
70% of the time no shaking of the hand/foot

The other fabulous positive is no tight muscles. For over 60 days I have walked normally.

Here are the negatives:

Drowsiness
Moderate memory loss (becoming more of a concern)
Possibly minor vision issues-a bit blurry and can’t tolerate sunlight
Noticeable slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy-still as it was 61 days ago
Dry mouth
Soft voice
Difficulty swallowing
Slight shortness of breath
Slight deficiency in fine motor skills on both sides

The negatives haven’t changed much but I am a little concerned about memory and shortness of breath. I will keep an eye on them.


Jim

No Sinemet Day 70, Sunday, July, 29, 2013

Good Morning,

I have now completed 70 days with no Sinemet or Carb-Lev. My meds, all taken at 8 am and 8 pm.(+/- 2 hours, it doesn’t seem to matter) normally are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night (this was a recent reduction)
3) Cogentin 1mg 2 times daily

I continue to experience no “on and off” times, taking my meds only twice a day. But things are definitely happening.

Twice in the last week I have forgotten to take my medication and was approximately 4 hours late each time. Although I didn’t know the effect at the time I believe it did have some effect on my stability and therefore will not be decreasing any more pills for at least a week, maybe more.

I will also note that on Friday morning of day 68 I was up after only four hours sleep to catch a flight to Los Angeles. I definitely noticed a change in my coordination walking and talking and sweating. I fell out of bed Friday night (never done that before), have had some difficulty walking and my general state of being with the Sinemet has somewhat returned, although without the Sinemet. I still continue to find little things I couldn’t do two months ago like use my right hand for the mouse which I can do now. Definitely some changes going on.

This evening I got out of the Jacuzzi and felt an inner being sickness and slight headache. It came and went for about an hour. I am a little paranoid about stroke having read that is one of the side effects of sudden withdrawal from the Sinemet. Overall I am still 100% happier with my current situation that I was three months ago.

Here are the positives:

Absolutely no tight muscles
No problem driving
Meds taken at 8 am and 8 pm
No ON/OFF time
No problem eating
No problem sleeping
90% of the time I walk normal and type normal
70% of the time no shaking of the hand/foot

I seem to be in a physical condition better than I was 6 or 7 years ago. That is not to say I am stronger, but that all my muscles are working in cooperation with each other and one side has no better advantage than the other. This however, is a call to exercise and it starts tomorrow.

Here are the negatives:

Drowsiness
Moderate memory loss (becoming more of a concern)
Possibly minor vision issues
Increased slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy
Dry mouth
Soft voice
Slight difficulty swallowing
Slight shortness of breath and awareness of heartbeat
Moderate deficiency in fine motor skills on both sides
Dry mouth mostly gone but sweating has increased


That’s it for now. Thanks for your interest.

Jim

Starting yesterday I began having trouble with walking. I began having Freezing episodes where I wanted go but my feet refused to go. Unfortunately my body was already leaning forward and I nearly fell. Today it's worse. My voice is softer, my thinking somewhat foggy.

Anyway, my HMO just called to schedule an appointment for a brain scan but I have to stop taking my Cogentin 5 days prior to the scan. My neurologist says it's ok to stop.

Anyone care to venture a thought or experience?

Jim

Ok , trying a second time.

What if:

Your neurons are damaged not dead.
Sinemet was helping.
These are the signs of PD.

OR

What if:

Your neurons are fine.
Sinemet was giving you side effects that look like PD
You are having withdrawal symptoms.

Then either your brain is in starve mode or in crave mode.

Medicine does not know much about this.
Only those who have done what you are doing actually know.

So what is your gut instinct about it?
All your options are binary here, so it is your call.