Aw, c'mon Soccertese. Ya know you want to.

(Never thought I'd use that one )

Jim, if you're still reading, I'd like to report my experience with Sinemet, which is unusual but not unknown, as my neurologists and 2 other well-known PD experts have confirmed. I hope you may find some of it relevant.

After I was diagnosed over 6 years ago, I waited 3 years before starting meds because I was doing very well without them, except for a very bad tremor. Also, I noticed that most of the Parkies I met were on various combos of meds, placed great faith in them, couldn't function without them, took their doctors' prescriptions gratefully without question, added on more prescriptions to counter side effects, etc. Although some had a good response to the meds, most were also obviously having much worse symptoms than I, even if time from diagnosis was similar or even less. Of course, that can also be due to different types of PD and different rates of progression. We can never know for sure. But some of the problems seemed to be at least partially caused by some of their many meds, even long before dyskinesia appeared (daytime sleepiness, insomnia, cognitive problems, hallucinations, car accidents from sudden sleep attacks, sedation, compulsive/obsessive issues, dystonia, swollen discolored legs, etc.). So I didn't take meds right away, but I did try to be very objective and very observant, and explored sensible ways to improve my chances & general health (nutrition, exercise, community involvement, fun activities, etc.), and kept up with research in the field.

When I finally did start taking Sinemet at a low dose, after giving in to my MDS's very insistent recommendations, I couldn't even tell whether it was making a difference, but it did not relieve my main symptom, the tremor. After a year, my MDS doubled my dosage (still fairly low) to try to get more of an effect. Very soon my right foot started turning under, my feet dragged badly, my legs cramped & became so weak I could hardly walk or stand, and my right foot jumped so severely I had to stop driving. My fitness and mood took a nosedive.

One day I missed 2 doses (went on a family outing & had none with me), and realized by mid-afternoon that all those symptoms had disappeared. I felt great, normal (except for the usual tremor). MDS told me to go back to my former low dose immediately (she said there was no danger in doing so), and I had none of those problems for more than a year, resumed walking, driving, etc. Unfortunately, in recent months they have returned, perhaps due to the cumulative effect of the Sinemet.

I'm still on the same low dose of Sinemet (plus very low dose of Requip, which seems to help restless legs), and still trying to find the elusive right dose, meds, solution, balance. Tremor persists, but Sinemet seems to help some with a searing mid-back pain (chronic muscle spasm), sleep, slowness, and lack of energy. But if I forget a dose, it's no big deal. I don't have the obvious ON or OFF periods that others report. My current MDS highly recommends DBS for me, but I'm not ready to take that scary step. She says tremor-dominants are often hard to treat effectively with meds (I've tried many), so I'm certainly not alone.

I hope some of this may be helpful or of interest to you. Good luck. Hope to see more of your posts and find out where it leads. PD is unique to each and very unpredictable.

Folks, I cleaned up this thread and removed all the ad hominem attacks and such.

People are not required to defend themselves when posting to this or any other forum. While you're welcomed to ask questions, you are not welcomed to perform an interrogation on another member about their choices or treatment. Especially not with a hostile tone or suggestion of ulterior motives.

We are a support community, not a bunch of amateur detectives looking to expose someone just because we don't like what they're saying.

Thanks for your cooperation and consideration. If you'd like to discuss this issue further, please do not do so on this thread (because it's off-topic). Either start a new thread in our Feedback forum, or PM me privately.

Thanks,
DocJohn

[QUOTE=I_Got_it_2;997864

I have now completed 40 days with no Sinemet or Carb-Lev. My meds are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 in am, ˝ at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
5) Steroids (Methylpreonisolone) 5 days only
6) Vicadin (never used this)

I did read one response which suggested that maybe I was misdiagnosed, that maybe I never had PK. I would be interested in exploring this possibility.
I find it hard to explain my current situation. I simply have a much easier life.

There used to be a disparity between my left and right sides. To help the right I needed Sinemet. But that screwed up the left . But it is an all or nothing situation where you must take the Sinemet or suffer. But now I have experienced a perceived/actual regression of my symptoms for the last 40 days.

Let me explain it like this. The body is an 8 cylinder engine. 6 cylinders are working fine and two are not functioning. The car is driven like this anyway. Over time the two nonfunctioning cylinders build up a lot of crud as they are not working right. But they go where the car goes with the other six functioning cylinders. Soon another cylinder stops working. Now the three malfunctioning cylinders are really under a strain to lug the car around. You get the idea.
That’s me and PK has wrecked three of my cylinders. I stumble upon an additive that brings back a portion of power in each of the three bad cylinders. Not full power but partial. Now the good cylinders need to do less and the bad cylinders are contributing once again.

That is how I feel. Whatever the additive was, it has made a real improvement in my daily activities. But I am not anywhere near full power and I don’t know if it will get better or worse and for how long it will last.

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
95% of the time I walk normal and type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (getting a little more pronounced)
Possibly minor vision issues
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.
Dry mouth

Hope this helps someone…

Uhhh? pk??

------------

[QUOTE=I_Got_it_2;999691][QUOTE=I_Got_it_2;997864

I have now completed 40 days with no Sinemet or Carb-Lev. My meds are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 in am, ˝ at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
5) Steroids (Methylpreonisolone) 5 days only
6) Vicadin (never used this)

I did read one response which suggested that maybe I was misdiagnosed, that maybe I never had PK. I would be interested in exploring this possibility.
I find it hard to explain my current situation. I simply have a much easier life.

There used to be a disparity between my left and right sides. To help the right I needed Sinemet. But that screwed up the left . But it is an all or nothing situation where you must take the Sinemet or suffer. But now I have experienced a perceived/actual regression of my symptoms for the last 40 days.

Let me explain it like this. The body is an 8 cylinder engine. 6 cylinders are working fine and two are not functioning. The car is driven like this anyway. Over time the two nonfunctioning cylinders build up a lot of crud as they are not working right. But they go where the car goes with the other six functioning cylinders. Soon another cylinder stops working. Now the three malfunctioning cylinders are really under a strain to lug the car around. You get the idea.
That’s me and PK has wrecked three of my cylinders. I stumble upon an additive that brings back a portion of power in each of the three bad cylinders. Not full power but partial. Now the good cylinders need to do less and the bad cylinders are contributing once again.

That is how I feel. Whatever the additive was, it has made a real improvement in my daily activities. But I am not anywhere near full power and I don’t know if it will get better or worse and for how long it will last.

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
95% of the time I walk normal and type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (getting a little more pronounced)
Possibly minor vision issues
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.
Dry mouth

Hope this helps someone…[/QUOTE]

Hi Bluedahlia,

Thank you for this response. I just wanted to add that I too had a severe, almost intolerable back pain some time back just before I stopped the Sinemet. It was weird because, while I have had occasional back pain from past injuries, the Flex and Ibu did the trick. And the pain was at the base of my spine. It almost killed me to sit down from a standing position or stand up from a sitting position.

I went to the Chyropractor but didn't help. I had taken Flexerill and Ibuprofen for three days roughly before I gave in and went to my family dr., who did an x-ray and prescribed a steroid, Methylpreonisolone. I only took it for 5 days, starting at 3 pills twice daily then less each dose until I was on my last day with the final pill. But it sure worked! By day 4 it was totally gone.

Jim

No Sinemet Day 43 - Monday July 15, 2013
I have now completed 42 days with no Sinemet or Carb-Lev. My meds are:
1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 in am, ˝ at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
5) Steroids (Methylpreonisolone)
6) Vicadin (never used this)
Once in the morning around 8 and again at night around 8. No on and off, no waiting for the meds to take effect. My Neuro said after a few days without Sinemet it was interesting. After almost two weeks it was still interesting. Now on July 11 he has decided it is remarkable. Here is his response:
================================================== =
==================================
By way of explanation when I decided to quit the Sinemet I had done little research on possible side effects. I really did not understand the potential there was for negative withdrawal issues. And I did not have a plan to quit; it all just came together.
The week of May 27 I had a Neuro appointment. I was having so many negative issues and my life was fairly miserable. I was really considering DBS when I stumbled in this forum upon a post about how a woman had switched from Artane to Cogentin and her life changed (until she changed meds she could barely walk and after she was going dancing!). So the Neuro and I decided to switch from Artane (which I had reduced by 50% in the previous two weeks) to Cogentin (which I started the next day as I stopped the Artane).

Around this same time I was suffering from severe, almost intolerable back pain just before I stopped the Sinemet. It was weird because, while I have had occasional back pain from past injuries, the Flex and Ibu always did the trick. And the pain was at the base of my spine. It almost killed me to sit down from a standing position or stand up from a sitting position.

I went to the Chyropractor but the treatment didn't help. I had taken Flexerill and Ibuprofen for three days roughly before I gave in and went to my family dr., who did an x-ray and prescribed a steroid, Methylpreonisolone. I only took it for 5 days, starting at 3 pills twice daily then less each dose until I was on my last day with the final pill. But it sure worked! By day 4 the pain was totally gone.
So at this juncture I was taking Flexerill and Ibuprofen for my back. This had nothing to do with the Parkinson’s (or so I thought). I stopped Artane and immediately began the Cogentin, and began the steroid for my back. Lastly I started taking Prozac for my apathy.
Almost immediately I noticed that I felt better at that point than I had in a long time. For this reason I decided to skip a normally scheduled Sinemet (carb/lev one quarter of 10/100 every 30 minutes) and I realized I was not experiencing my “OFF” symptoms. The next day, as I realized I had cut my Sinemet by 50% and I felt good physically, I decided to stop Sinemet altogether until the symptoms returned. I checked in with my Neuro and waited for the symptoms to return. But they didn’t!
Below are the positives and negatives of where I am today.

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
95% of the time I walk normal and type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (getting a little more pronounced)
Possibly minor vision issues
Soft voice
Dry mouth
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.

On my next post I will try to put this experience into perspective by bringing it up to the present. ONE LAST THING: DO NOT TRY ANY OF THIS WITHOUT CHECKING IN WITH YOUR DOCTOR.

No Sinemet Day 44 - Tuesday July 16, 2013

I have now completed 43 days with no Sinemet or Carb-Lev. My meds are:

1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1/2 in am, 1/2 at night (just reduced from 1 1/2 to 1 daily)
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
5) Steroids (Methylpreonisolone) (not currently taking this)
6) Vicadin (never used this)

Taking meds once in the morning around 8 and again at night around 8. No on and off, no waiting for the meds to take effect.

Basically today is the same as yesterday. I did feel overall a bit lethargic yesterday but nothing major.

I would like to apologize for my actions when I first posted this subject. I had no idea that quitting Sinemet cold turkey was looked upon as a dangerous and risky thing to do. As I searched for information about quitting Sinemet I began to realize just how uninformed I was. Had I have known this before I started I may well have not proceeded.

On the other hand and as I have said in this forum, I didn't go looking to do this, it just happened. The day before I deliberately stopped the Sinemet I realized I hadn't taken a pill yet I felt better. So I cut the dosage in half and sent an email to my Neuro, who more or less gave me the go ahead to quit, albeit with caveats. Every day I was afraid that day would be the day I would regress. But it hasn't shown up yet.

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 although swallowing is sometimes a chore
No problem sleeping although I cut back the Flexerill yesterday and woke after 6 hours (my normal is 8)
90% of the time I walk normal and type normal
85% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight+ memory loss (getting to be even more pronounced)
Possibly minor vision issues
Soft voice
Dry mouth-Very dry!
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.


Jim

Jim

Taking meds once in the morning around 8 and again at night around 8. No on and off, no waiting for the meds to take effect. My right hand has slight tremor in certain positions but while at rest no tremor and while working no tremor heavily influenced. Changed Flexerill to one daily, half in morning and half in evening. My meds I am taking 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

My overall feeling based upon what I have lost and gained by stopping the Sinemet is happiness subdued a bit by the possibility that the symptoms may come back or even possibly come back and worsen. But happiness from NO ON AND OFF time, the relief of taking pills every 30 minutes, from the muscle tightness, no need to favor left over right, ease of driving, ease of walking, and all related things; I have been overwhelmed with these results!

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 although swallowing is sometimes a chore
No problem sleeping
90% of the time I walk normal and type normal
85% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight worsening memory loss
Possibly minor vision issues
Soft voice
Dry mouth-Very dry!
Some slowing down of movements
Still have difficulty accomplishing minor tasks-Apathy.

Please be advised as has been stated throughout this site: Seek the advice of a doctor before changing meds.

Thank you for allowing me to share this.

Jim

On both sides, but when I went to my Neuro. today, I found out I had only turned off the left side. We ( my Neurologist and I) both learned from this error. We Learned that when I had turned off the Left side, my emotional state went from extremely depressed to bouncing off the walls. My Psychiatrist lowered my Fluoxetine from 4 to 2 and increase my Clonazepam by 1 as needed for anxiety as I was experiencing more anxiety.

We also discovered that turning off my left side battery, I was experiencing severe axial dystonia. Some mornings I would wake up unable to move due to this dystonia. I was also experiencing severe dystonia in both legs and a very painful stiff neck.

Why did I place this post in this thread? The Deep Brain Stimulater did what I hoped it would do. Allow me to take smaller doses of Sinemet. It cut my dose by 2/3rds. I have been on the same dose of Sinemet for 9 years. My Neurologist and I are working together to find answers. The next time I see him in 2 weeks we plan to turn off the Right side and observe what effect it will have.

I do not have Ideopathic Parkinson disease, My disease is Parlysis Agitans as I have 2 Parkin gene mutations. Which has different symptoms than the general or Ideopathic type. Will enjoy comparing notes with I Got It 2.

Sharing with my friends,
Vicky