Stopping Sinemet (Carbidopa-Levodopa)
 

Has anyone tried to stop Sinemet (Carbidopa-Levodopa)? I'd be curious.

The following warning appears on the web:
-------------------------------------------
WARNING!
Do not stop taking Sinemet suddenly, as a serious group of side effects, known as neuroleptic malignant syndrome (NMS), may occur. Symptoms of NMS include:


•A high fever
•Stiff muscles
•Confusion
•Irregular pulse or blood pressure
•A fast heart rate (tachycardia)
•Sweating
•Irregular heart rhythms (arrhythmias)
-------------------------------------------

I stopped cold turkey 3 weeks ago and have had little negative reaction but absolutely no muscle stiffness. I can do little things now that were either impossible or very difficult: shaving, showering, driving, writing, getting out of a chair, typing, rolling over in bed.

Just wondering if others have had experiences they could share.

Jim

My patient/ friend stopped taking sinemet over approximately 12 months time. Using the method of making liquid version (dissolving the sinemet pill in water and adding ascorbic acid and shaking) Decreasing the amount taken ever so slightly every week. But, during this time, she was also taking fava bean supplements to replace the l-dopa that she was getting from sinemet. I think it would be VERY hard to quit taking l-dopa..it is what makes me functional. I am only 60 and still have life in me and things I'd like to do. There is alot to consider when you have a physically disabling condition and taking prescribed meds. We all have to make choices in Life...weighing pros and cons...personally, going natural was the only option I considered after reading and seeing the side effects of synthetic l-dopa . But, if I hadn't started my research before my condition became worse...I never could have started it afterward. Looking back, I had a very small window. God placed the right people in my path and right experiences to prepare me for what I needed to accomplish before the worsening symptoms hit. If the fava tincture that I depend on had not been started exactly when the first one was...it may never have been made. God has a perfect plan and perfect timing for all things.

Four years ago (five?) I was taking 32 mgs of requip daily. DK was becoming a problem and I quit overnight in favor of ldopa. The warnings about doing things like that had just began to appear and I was not aware of the risks but I sailed through with no problem.

Aunt Bean,

Below is the Oswald Chambers for June 25:

I hope this doesn't violate any rules...

Jim

That is a beautiful devotional ,,,I had one of his books several years ago that I read daily. It is true. If you have not suffered, you are not as much value to those who are suffering. And yes, I feel that for this purpose I am here and pray that my work shall be accomplished and will be a help to future generations. Blessings..........Aunt Bean

Stopping Sinemet (Carbadopa-Levadopa)
 

My friend Jan replaced Sinemet with an amino acid with Mucuna Pruriens combo; this was an extremely difficult but rewarding change once she got through crisis of change. She had no other choice at the time, given how badly Sinemet was going for her. After two years, she cycled back onto Sinemet because of cost of the amino/mucuna regime and had a very brief honeymoon with it, but then again, she didn't do very well on Sinemet for long, especially at the doses she seemed to need. Dyskinesa galore.

A few months into this, she added an amino acid-rich vegetable complex, the Neurogenic Extracts, and was able to reduce too much (for her) Sinemet to a single tablet of 10/100. That was a year ago. Since then, without support from the vegetable extracts, she's reduced from a high of 4.5 tablets / day and is now at 3 tablets. She seems to do better on the Merck brand, still taking the 10 / 100 formulation.

Any drug change takes lots of support. We found that the minimum timeframe a dose change to settle in is about 10 days an, from there, to allow about 3 weeks to a month or so for stabilization before the next reduction. Not to push until there's stabilization.

Now, she's looking like Amantadine is going to need to be eliminated from her regime. Here we go again.


Best wishes!
Trisha

good for her:)
 

Where did you get the extracts? I can't seem to find them on the internet anywhere...

Good for her : )
 

We sourced these nutritional extracts with the help of Dr. John Grinstein. We cannot recommend them, however, unless money is no object. Also, supply can be a truly significant problem. More to say about them at another point. Grinstein's neurogenic extracts did show how nutrition can be managed to optimize the body. Through their use, Jan was able to dramatically decrease dependence on a drug that was messing her up and in the process she made a major commitment to finding a diet that enhances her well-being.

So, back to this thread, what we've found as a mainstay of reducing or stopping Sinemet: fresh, organic vegetable juices; the Ketogenic diet that clears the way for better brain; detoxing the liver, etc. through every way practical, like using chlorella or cleansing herbs; increasing amounts of exercise; asleep by 9 or 10 PM.

Some things that are making an obvious difference for Jan, who wishes for but does not respond to carbadopa/levadopa without bundles of side effects.

just curious, how much do they cost?

Trisha,

Thank you for your reply. Honestly I expected more responses but maybe not many people try to get off the Carbidopa-Levodopa. What follows is my experience as I stopped taking the Carbidopa-Levodopa, my Parkinson’s history before that and the wonderful and incredible changes in the last 30 days!

Let me first direct interested persons to read the warning at the beginning of this thread. Changes to medication need to be discussed with the doc before doing anything, especially terminating the principal medicine, Sinemet. Having stated this however, let me tell you my story.

My Story

I am a 57 yr.old caucasion male white collar worker in the restaurant business (remember Sambo’s?). My family owned an Atlantic Richfield gas station when I was 10 until age 16 and I pumped gas there frequently. I liked the smell of fuel and washing windows/checking oil (remember .28 cent gas and full service, S &H Green Stamps?). In 1990 I created a consulting company which gave me sufficient capital in 1995 to finance building a gas station of my own and several more were built or purchased in subsequent years.

I was diagnosed with Parkinson’s in 2001 after a ten-year search to discover what my problem was. What started as an aggravation in my pinky finger in 1990 was progressing, thankfully very slowly, into a major disability today where everything I do seemingly is in deference to the disease. At least it was a month ago.

I remember the doc at the UCLA Med Center who correctly diagnosed me and told me I could either start taking Sinemet or wait until things got worse, that many people believed that there was a five year effecteness period, after which the usefulness of the pills diminish. I asked him which choice would he make and he told me he would start the Sinemet now, that I was relatively young (45) and more discoveries of meds for Parkinson’s would surely be forthcoming. I decided to start the meds in 2001 and have always had Sinemet/Carbidopa-Levidopa up to a month ago. In the past 5 years I have tried different things but nothing seemed to make much difference or the side effects were too much.

From 2001 through 2008 the only meds I took was 10/100 Carb-Lev. I would simply begin my day by throwing 6 or 7 pills in my shirt pocket and off I would go. I had other Carb-Lev pills stashed in the car, in my briefcase or other convenient places, just in case just in case I forgot them. In 2009 I began to have frequent battles with little things like shaving, putting my shoes on and typing. I began considering DBS at my docs insistence and I was deemed to be a good candidate. Not wanting this operation I began searching for the miracle pill.

And so I began experimenting with other meds, in addition to Carbidopa-Levidopa. I had tried stopping the Carbidopa-Levidopa a few years prior to this with disastrous results after only a few days. So the doc suggested Artane. At first it was great but in a week it was back to my prior state. After struggling with this drug for months, I decided to slowly cut back. I was down to ½ pill once a day (with lots of withdrawal problems) when I read something on this site about Cogentin, for which I talked to the Doc and got it approved. I decided to immediately stop the Artane and begin the Cogentin.

I now have been Carbidopa-Levidopa free for a month! A month ago I was taking the Carbidopa-Levidopa 6/day, ¼ pill every 30 minutes (really, this was best for me) plus Artane and Azilect (I ran out of Azilect at the end of May and actually have not been taking since then). A month ago I was barely able to shave, drive, type. I had difficulty cutting food when we would go to a restaurant, walked like I had a rock in my shoe, etc., etc. Today and for the last 30 days I have had almost no shaking, NO “ON” and “OFF”, I take my pills at 8 am and 8 pm.

So I wonder, is it the Cogentin, flexeril, the Motrin, lack of Carbidopa-Levidopa, or???? I have been so blessed to have had these last 30 days. What a blessing-even if it changes tomorrow. There is so much more if anyone is interested.

Below are emails to and from my Neurologist:
========================
From:
Jim
Sent:
6/3/2013 7:30 AM PDT
Good Morning Doc,

I have been waiting for my refill of Azilect and have now been notified that there is no refill. Can you phone in to the Riverside pharmacy?

Also I have had a severe backache since I started the Prozac. Wonder if there is a connection...

Also I have been taking Flexeril, 1 10mg and 800mg Ibuprofrin 3 times daily. Since about the same time I have started these two meds I have had remarkable recovery of some abilities and without the regular dosage of Carb/Lev. Yesterday I had 1/3 of my normal dosage and I have yet in these three hours to take a Carb/Lev--and I am typing this message and shaved without help!

Can you please send to Riverside phar the Azilect refill and a FLexeril prescription?

Thanks,

Jim
==================================
From:
NEUROLOGIST DO
Received:
6/3/2013 11:43 AM PDT
Jim,

I've sent a new rx for Azilect. The flexeril, I just restarted the old rx Dr. xxx gave you. She wrote to try 1/2 tablet twice a day. Flexeril is not something to rely on from a day to day basis though. Also, there is a theoretical interaction between Flexeril, Prozac and Azilect. Please make sure you are not taking more than 1 mg of Azilect a day. Like I said, the risk is very very low, but if you notice fever, flushing, severe stiffness, confusion, then call 911 - it could be a sign of serotonin syndrome, which is an emergency.

As far as back pain and Prozac goes, I'm not sure if I can link the two together. If you're taking ibuprofen 800mg three times a day, please be sure to drink plenty of water as it can affect the kidneys negatively.

Neurologist
==========================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:27 PM PDT
Hi Doc,

I have interesting news! Today at 2:00 (current time this was written) I have taken no Carb/Lev 10/100 and I am doing fine. In fact, I didn't take any yesterday either and did fine. I feel half normal! My pills are

1) Motrin 800mg 3 times daily
2) Flexeril 10mg 3 times daily
3) Prozac 1 time daily
4) Azilect 1 time daily (I am still waiting for pharmacy to send-have not had this for several weeks)
5) Cogentin 1mg 2 times daily

I started noticing a big difference when I hurt my back and started taking the Motrin and Flexeril on Monday. I did however continue taking the Carb Lev but at a lower total daily count. On Tuesday I stopped entirely and waiting to see when my body might begin to demand it. But it didn't so I took none. Today I also took no Carb/Lev. Am doing fine right now.

This morning I went to Kaiser and had an x-ray so the Doctor gave me a prescription for Vicadin because she saw Arthritis in the x-ray, and also Steroids (Methylpreonisolone).
SEE NEXT EMAIL-
=========================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:39 PM PDT
Continued....

I take the steroid for 5 days-3 per day decreasing to 1 per day until gone. The vicodin is as needed for the pain.

Anyway I am planning to monitor my progress without the Carb/Lev as long as I can.

Questions
1) Do you see any problem with the above?
2) Should I change anything while doing the steroids?
3) Is it dangerous to stop the Carb/Lev cold turkey?

Thanks
Jim Guffey

==========================
To:
Jim
From:
NEUROLOGIST DO
Received:
6/5/2013 5:44 PM PDT
Jim,

It's usually not good to stop carbidopa/levodopa cold turkey so have some with you just in case. What you're describing is so interesting!

I have no reservation about what you're doing, as long as you're feeling ok. Again, this is very interesting.

Neurologist
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/6/2013 12:19 PM PDT
Hi DOc,

Yes it is interesting! But I have had the experience of meds with much promise, working well for the first day, then a wearing off of the newness and finally back to square one. That notwithstanding here is an update.

The first day (Tuesday) was no Carb/Lev (actual last dosage was Monday evening at about 7 pm). Tuesday results were impressive: I could use my right hand to shave, type, button buttons, pull up my pants, etc. No hand shaking, trembling or tight muscles. Walking was normal and with arm swing. I could even hunch up my right shoulder which I couldn't do in your office!

Tuesday I went to the xxxxxx for the pain in my lower back. At about 11 am I was feeling a bit lethargic and thought about taking Carb/lev but decided to play it out. Within an hour the feeling lethargic was gone and the rest if the day and night was normal. On this day I added the steroids (out of necessity for my back) but just one tablet.
CONTINUED
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/6/2013 12:25 PM PDT
Day 2 continued...

Again this day felt like I was normal, walking talking eating playing--all was normal. No meds were taken except the Cogen, prozac, flexeril, Motrin 800mg, and the steroid.

Day 3 (today)

It is now 12:23 pm and still no problems and no Carb/Lev.

Other than sleepiness I am doing fine. Thanks again for all your help.

Do you want me to continue these updates?
==========================
To:
Jim
From:
NEUROLOGIST DO
Received:
6/6/2013 2:43 PM PDT
Hi Mr. Guffey,

This is continues to be a very interesting turn of events. Keep me updated on how you're doing, but if you don't want to, you don't have to send daily emails.

Neurologist
===============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/9/2013 3:36 PM PDT
Hi Doc,

Well, here it is, Sunday and almost a week without Carb/Lev. None, zero. nada. My life for the past week has been better than I can remember. The tradeoff has been minor in respect to the physical improvements. I am very pleased with the results subject to apprehension that the benefits are only for a time.

I mentioned the MD I went to for my back pain gave me steroids which I have taken these last 4 days and they will end tonight when I take my last pill. Did they work? I'll say so! I got up yesterday morning and the same pain was there. The pain was excruciating when I transition from down into a seat and raising back up to my feet. Truly almost debilitating. Then a few hours later I stood up and the pain was fully gone. SO that is out of the way.

So I now want to find out what is replacing my Carb/Lev since I have had none these last seven days. I need your guidance.

PLEASE SEE RECOMMENDED ELIMINATION OF MEDS #2

=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/9/2013 3:40 PM PDT
CONTINUED

It would seem to me that the ibuprofen or flexerill would be next to go and, if not for the back problem I would never have introduced them coincidentally around the same time I began Cenogen (sp) and the Prozac.

What do you suggest?

Jim Guffey

=============================
6/10/2013
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 2 times daily
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/10/2013 11:30 AM PDT
Hi Doc,

Actually I have two:

1) Have you ever seen a patient like me who has stopped taking Car/Lev after 11 years and actually improved?

2) Is it possible within the next few days to have another appointment so you can verify my improvement?

Thanks,

Jim
=================================

From:
NEUROLOGIST DO
Received:
6/10/2013 11:56 AM PDT
Mr. Guffey,

Try cutting down (not stopping entirely) the Flexeril and see how you do.

Neurologist
================================
6/10/2013
Finished Steroids
Took only 1 Flexeril in the a.m.
=============================
1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 times in the evening
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
==============================
6/11/2103
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 1 time at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
Normal morning, shaved etc. fine.
Around 12:00 experiencing down time, hand a bit shakey, Heaviness of my body. I will see if it passes and if not, will take flex again.
Taking another Ibuprofen mid-day (I skipped it yesterday)
2:00 felt a heaviness, felt my heart beating while sitting-took a Ibuprofen
2:15 looking up Flexeril with Sinemet:
Evening took another round of all pills except Prozac
no problems in the night but didn’t sleep too well (five hours)
---------------------------------------
6/12/2103
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 2 times, morning and night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
Up at 5:30 couldn’t sleep, overall felt good, and slight tremor in right hand; very slight


=======================

To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:39 PM PDT
Continued....

I take the steroid for 5 days-3 per day decreasing to 1 per day until gone. The vicodin is as needed for the pain.

Anyway I am planning to monitor my progress without the Carb/Lev as long as I can.

Questions
1) Do you see any problem with the above?
2) Should I change anything while doing the steroids?
3) Is it dangerous to stop the Carb/Lev cold turkey?

Thanks
===========================================
Painkillers may decrease risk of Parkinson’s disease

By Geoff Michaels, News Fix, May 10th, 2013
People taking non-steroidal anti-inflammatory drugs like ibuprofen are less likely to develop Parkinson’s disease.

Previous research has suggested that non-steroidal anti-inflammatory agents (NSAIDs), such as ibuprofen, aspirin and indomethacin, could protect the brain from both Parkinson’s and Alzheimer’s disease. A new report from the long-running Health Professionals Follow-up Study and the Nurses’ Health Study now seems to back the claim for Parkinson’s disease.

Over 44,000 men and nearly 100,000 women were studied. None had Parkinson’s at the start but over the several years of the study, 415 new cases were reported. Regular use of non-aspirin NSAIDs was reported by 6.1 per cent of the men and 3.7 per cent of the women. These participants had a 45 per cent lower risk of developing Parkinson’s disease than those who were not regular users of non-aspirin NSAIDs. A smaller trend was noted for those using aspirin. It may be that NSAIDs protect the brain from degenerative disease through reducing inflammation.
============================
Flexerill vs. Cogentin

Abstract
1.
1. Nine different evaluation systems were used to assess the efficacy of cyclobenzaprine (Flexeril®) and benzotropine methanesulfonate (Cogentin®) in 24 men with Parkinson's disease.
2.
2. A randomized double-blind cross-over clinical trial was followed by an extension study, with patients permitted to choose either medication.
3.
3. Both medications were judged beneficial to a majority of patients. Of the 9 evaluation systems used, 8 revealed cyclobenzaprine was better, while the ninth indicated that neither drug affected cognition. Differences between the two medications were slight and not significant.
4.
4. In the extension study, 71% of patients selected cyclobenzaprine and 29% selected benzotropine methanesulfonate.
5.
5. The chemical structure of cyclobenzaprine differs from other anti-parkinsonian agents, and this drug may be effective for patients who do not tolerate or benefit appreciably from levodopa or other medicants.

Stopping Sinemet (Carbadopa-Levadopa)
 

Jim, how wonderful for you! Hoooorahhhhh!

My long detailed replied just went down when my internet crashed, so here is the short/sweet:

It does take courage and a nuanced eye to interpret a need for less drug, when we're told repeatedly that as carba/dopa effectiveness becomes unreliable it's because we are impaired, we cannot receive its benefits. It is easy to think you need more when it's not working well. And easy to think that calls for piling on another drug to up effectiveness.

A little over three weeks ago, we got the hunch that Jan needed less because she was cognitively and physically more herself when in an off period. That proved right. Now we're working on when and how frequently to dose. It seems that she does better by starting as late in the day as possible, or did for a while. For a week, until she was bitten by a spider, that was noon. Today, 9 AM worked well.

There are so many layers and cross-currents that are not PD but contribute to it. Sounds like you are dealing with the nexus of stress/pain/inflammation very effectively.

Very best wishes, and keep us informed as you go!
Trisha

P.S. Soccertese, not everyone needs the same dosage of Neurogenic Extracts as did Jan, so I can't represent the costs fairly. She's at the point where insurance is going to have to cover most of what she does, and is making hard choices accordingly. Her money now is going to Neuro-Modulation Therapy, a treatment modality of Dr. Leslie Feinberg. This is working just great for her.

YOU brought up the cost, i think it's fair to ask.

weaning off sinemet
 

Probably not the correct procedure!
July 2013. I am a resident of Canada living alone in Edmonton, Alberta, age 74. I was diagnosed with PD in 2001 and have mild familial ET since my teens. My Neuro sent me to see a specialist in Vancouver in 2010 as he was confused about my diagnosis mainly because Sinemet had no effect. He confirmed the diagnosis as tremor intensive PD and said I would need to start on Sinemet at some point. Started on Prolopa eighteen months ago, now on Sinemet (150mg x 3/day) which only during the past several months causes severe pounding tremor in my right arm one to two hours after ingestion, causing continual freezing making it very difficult to stand up from sitting position, change direction, dress myself. exercise, etc and lasts for seven or eight hours. I can go without the med for a day with a big improvement but any longer I start to weaken. In the past several months I have gone from self-reliance to dependence. I am striving to find a balance by cutting back to 1 x 50 mg twice daily. Sinemet is definitely no longer helping my condition. Any suggestions?

4th of July-Status Report
 

Happy 4th of July!

My story as of June 1, 2013 is this: I was taking SInemet/Carb/Lev 10/100 6 to 7 pills daily. I had tried several variations of this like adding Comtan, changing to Stalevo, etc. with little change. I had my annual appointment in late May with my Neuro and we decided to change from Artane to Cogentin. I had fully stopped the Artane without a substitute earlier in the year to try to identify why my symptoms were so pronounced compared to just a few years ago. My body wanted no part of quitting the Artane and I ended up taking it again in late March 2013.

I should state at this point my symptoms in order of importance:

1) Muscle tightness-this resulted in difficulty walking, eating, working; almost everything! I was reaching the point of going for DBS, for which I was approved for already. I literally did not want to leave the house for fear of what rebellion my body might present, or have a period of "OFF" time.
2) Apathy-I used to run several businesses I started without difficulty. Now I can't even open my mail. I have months of unopened mail in different piles of priority just waiting for my attention.
3) Unintended leg and arm movements-if I am watching a fight on TV I unconsciously "act out" what I see on TV. IF that's not bad enough my other arm and leg join in the fun. I end up sitting on my hand to stop it!
4) Morning Prep-Shaving and showering and towel dry are very difficult if I don't go immediately when I turn "ON".
5) Left side of body vs right side of body-My right side needs more help than my left side but once I turn "ON", one has too much and the other too little.

I went to my Neuro in May and he gave me my prescription for Cogentin so I stopped the Artane one day and started the Cogentin the next day.

Around this same time I woke up with a sore (very sore) back. I went to my Chiropractor but he was no help. So I started taking my historical mainstay of Flexerill and Motrin. I went to my family doctor and was given a steroid pill, identified earlier in this post.

It is now the 1st few days of June. I am taking the meds identified above when I notice I forgot my half hour SInemet/Carb/Lev dosage. But I also notice I feel...good! So it occurred to me to skip several pills, which I did. I was up the next morning and I felt great! Thus began a major shift in my meds: NO SInemet/Carb/Lev. I checked in with my Neuro and here we are some 30 days later! With no SInemet/Carb/Lev!

Here are the positives:

Absolutely no tight muscles
No problem driving
No ON/OFF time
No problem eating
No problem sleeping
95% of the time I walk normal type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (I don't forget facts, I just forget why I came to the kitchen
Possibly minor vision issues

So then, these are the facts. The last SInemet/Carb/Lev I took was on June 3, 2013. I FEEL GREAT! Every day I wonder if this will be the last day of freedom. I wonder if the relief is short-lived. But in my first days I was so happy to be liberated from muscle tightness, had it of ended there I would have been so thankful.

Anyway, here it is. Do with it as you will. But if it's as simple as adding Ibuprofen and Flexerill....

Consult your doctor. Always.

Jim

Day 33-WITHOUT Sinemet/Carb-Lev
 

DAY 33 - NO SINEMET

It has been 33 days since stopping the Sinemet/Carb-Lev. I forgot yesterday to list dry mouth as a negative to the pills. But again, overall I feel great!

As an example, I bought a car several months ago. My right foot was doing things on its own. I wanted to accelerate but my foot would go fast then slow then fast. It was terribly annoying and embarrassing. In addition all that fidgeting eventually knocks the rubber cover off the break pedal. So I drive my new car with the rubber off.

Another driving example is my right arm. If I am too much "on", I have strength to drive but too much in my right arm. So I grip the steering wheel too hard until I can't grip it any longer, then I switch and try to put my hand under my thy or gripping the arm rest or my other arm. When I am "off" I can barely turn the power steering wheel!

Both of these symptoms disappeared on June 3 as I wrote to my Neuro:

The only returning symptoms from before June 3, 2013 is a very slight tremor In my right hand which exacerbates when I am nervous, and slight issue with walking normal. That is to say sometimes I have to think about how to walk.

That's all until tomorrow!

Jim

Day 34-WITHOUT Sinemet/Carb-Lev
 

==========================================

DAY 34 - NO SINEMET

It's my 34th day without Sinemet with little notable change from yesterday. I've been thinking about writing about my day yesterday to give an indication of my before and after quitting SINEMET.

I got up at 8:30 am after retiring at 11:00 pm the night before (I have never had a problem sleeping). I had some cereal and coffee (I used to only take coffee as any food ingested would interfere with my pills). I worked a little on the computer (I can now type with both hands freely whereas before I used mostly my left hand) then I went to get showered (I used to have to wait to come "ON" then rush to do my shower/shave so I didn't get caught by my "OFF" (for the last 34 days I have not had "OFF" and "ON" times- I simply take my pills at 8 am and again at 8 pm, no matter what I eat. By the way, I have gained in excess of 12 lbs in these last 34 days mainly due to the fact food is no longer an enemy. AGAIN, I DO NOT HAVE "OFF" AND "ON" TIMES. HONEST.

My son arrives and we talk for a few minutes (here the hand shaking is at it's most pronounced in 34 days) and he leaves my grandchildren with us so he and his wife can go to Vegas for the UFC fight.

I then drive for over an hour to the Casino, and I park and walk (walking normally, not the rock in the shoe with toe curling walk). I play for an hour and go get my free buffet (again, no fears of what I eat and when will my accelerated "OFF" come, then I return home). I watch a little TV then drive to a restaurant for food for the munchkins and retire to my Jacuzzi with my wife and 2 yr old baby girl (she is so cute!).

That is followed by playing with the kids and going to bed.

Finally, I feel like my body needs some adjustment to the regained abilities (After all, I didn't deteriorate to my PK state in 34 days-it's taken over 8,000 days!). I think that as I have abused by overworking the left side of my body these 20 years to compensate for my right side disabilities I must exercise again to adjust. Anyway, it feels so good just to be able to drive and walk normally! And eat.

I hope this helps someone. I think we could use someone analytical who can look at the pills and maybe find volunteers to try the different combinations, with Doctor approval of course. Please remember, with me it took just two days to know something wonderful had happened-and the benefits have far, far, FAR outweighed the cost.

Jim

I was having severe back spasms as a result of my DBS programming and was prescribed Flexeril and Ibuprofin and I feel much better. My gait is getting better too. I'm still taking levo/carb, but only 200 mg a day.

Responding since my name was used . . .
 

Hi Jim and soccertese

I am not joining this conversation to take a side, but I just want to make certain that what we post in these forums is done so with a sincere attitude of wanting to help someone struggling with Parkinson disease.

This has been repeated so many times that its sickening, but I will say it one more time - EVERYONE IS DIFFERENT as relates to PD symptoms. The only consistency I have found is this:

• People dx with PD have 2-3 of the cardinal symptoms of PD over a period of several weeks that cannot be attributable to anything else (those 4 cardinal symptoms are: resting tremor, Extreme rigidity, bradykinesia (extreme slowness), and postural difficulty (balance)
  
• No matter what side effects you may experience, dopamine replacement therapy gives some kind of relief of these symptoms
  
• Not everyone experiences side effects due to PD meds significant enough to affect quality of life (QOL)
  
• . Don't ever suggest that a specific therapy answers all problems. It doesn't, hasn't ever, and never will!

This forum is to provide support. It is "owned" by its users. Some of us have been posting here and migrated from BrainTalk over a decade ago. We tend to become defensive if it remotely appears that the forum members are being taken advantage of (especially with salespeople trying to push their product)

We are a team once our sincerity is established. By nature we will attack (sometimes even viciously) if we spot anyone appearing to prey upon our condition for the express purpose of profit.

Good luck on coming to consensus. And if you are a fake, I strongly advise you to pack up your bags (and product) and RUN! LOL
Peg

PS - arguing usually accomplishes nothing, and may run some needy people away. How about a BIG virtual hug?

peg
 

i respect your opinions/input as always.
but no hugs.

I_Got_it_2,

Thank you for posting about your experiences and please keep us informed about your progress.

If I had gone over 30 days without levodopa and was still moving well, I'd be posting the same as you.

You've never claimed to have found a cure for everyone with PD, but rather reported something that having helped you may help others.

Could you give more evidence in your posts? Of course you could, but so too could everyone on this forum, me included.

I think the most likely way to explain your results is that you were misdiagnosed with PD. That doesn't take away any of the importance of the event to you - you could have spent years needlessly on levodopa.

Well done!

John

:D Aw, c'mon Soccertese. Ya know you want to. :D
:grouphug:
(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

No Sinemet Day 41 - Saturday July 13, 2013 –
 

[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, ½ 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, ½ 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
 

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, ½ 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
 

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

No Sinemet Day 47 - Friday July 19, 2013
 

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

I thought that I had turned off my DBS ...
 

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

This is exactly it!
 

[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!

No Sinemet Day 53-Thursdat July 13, 2013
 

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

Hi Jim
 

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

Brain Fog
 

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:winky:.

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.

No Sinemet Day 58, Monday, July, 29, 2013
 

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

No Sinemet Day 62, Friday, August 2, 2013
 

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, 2013that he did a contract deal says most party
 

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

PK Poop-How Quickly Things Change
 

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.