[Max19BC]

I wanted to see what would happen if I went unmediated for an extended period of time. I wanted to know what symptoms of mine were meds related and what were pd. I also wanted to know if I was addicted to mucuna/sinemet. And what would happen to me if I was.
Currently, this is my schedule. At 8:30 am, 11:30 am and at 2:30 pm I will take the following: 1 tsp of mucuna (Zandopa) with 1/3 tablet of generic Sinemet 200/50 CR 3 times a day (8:30 am, 11:30 am and at 2:30 pm). I don’t take any antidepressants or any other pd medications. Only if I plan to go out in the evening, will I take another dose. For the past couple of months now, I've been extending my unmediated time from just overnight to now around 15 hours, without any side effects. I do this mainly to encourage my body to use its own dopamine and not be so dependent on mucuna/sinemet most of the day.
Here are my current symptoms. When my meds kick in, usually in about 20 minutes, I start to get a bit antsy. Kind of like a 5 year old kid having to go to the bathroom. I get a bit restless, just enough movement to get attention if I was out in public. This lasts only about 15 minutes or so. Then I settle down and can be pretty normal, unless I’m stressed. Then I get some hand shaking and my voice gets fragmented. But over all, I would say that I’m pretty normal when medicated. I can walk, jog, ride a bike, lots of energy, enjoying the day, can drive, work around the house, cook, clean, etc. etc. This will last about 2 1/2 to 3 hours, sometimes longer ‘till my next dose. When I begin to crash, it happens fairly quickly. I begin to sweat, I start limping and within 10 minutes, I will have difficulty walking. My walking is worse, at this time, than when I’ve been unmediated for a couple of hours, weird. I would have to call this a withdrawal symptom along with the sweating. In the evening, when I’m unmediated, the sweating is gone and my walking is back, but I walk a lot slower and have to be aware of every step. I will have, at times, a tremor in my left hand. I won’t attempt to do anything major when I’m unmediated, besides reading a book, get on the internet or watch some TV. Before I go to bed, I’ll meditate and do some stretching. My back muscles usually ache in the evening. I would say that’s a pd symptom.
When I wake up in the morning, already 14 hours unmediated, I can still go for a short walk. It's a lot slower than normal, in fact my whole body is slow but I can function. My body doesn’t go through any withdrawal symptoms in the evening, during the night or when I wake up.
This is where my real test begins. I won’t take any meds now until tomorrow.
After 30 hours unmediated, I'm still pretty much the same, the same as in the evenings when I'm unmediated. Except I have a bit slower movements, more lack of energy, really tired and my back muscles ache more but that's about it. My back muscles feels like I've been holding my arms out in front of me and never letting them down. If fact my whole body is getting stiffer and ache more. This is definitely a pd symptom. I never get this when I'm on my mucuna/sinemet. I didn't suffer from any withdrawal symptoms, besides the usual 15 minute sweating after the last dose wore off around 27 hours ago.
The strangest thing that has happened to me at the 24 and 27 hour mark was this: I took two short naps and both times I woke up completely normal. No body aches, walked completely fine, handwriting fine. I could even jump one foot at a time on my rebounder. I was never able to do that before unmediated. I couldn't believe it, no symptoms at all, normal arm swing, normal speech, etc. The unfortunate thing was, it only lasted for 15 minutes, both times, weird. But after this moment of normalcy wore off, I was still able to function around the house, slow, but able. I did some laundry, went for a 1/2 hour walk, changed the kitty box and even made myself a nice supper.
So I decided to continue unmediated the following day too, and see what happens. That night I slept so-so. Had a harder time turning over in bed. And when I woke up in the morning, I was really stiff, I felt like I’ve played football the day before. I could barely walk. It was baby steps, 3” at a time. I wouldn’t be able to go for a walk. I didn’t suffer any withdrawal symptoms. So for me, at this time, I would have to say mucuna wasn’t addictive. I’ve been taking mostly mucuna for 2 years now.
I decided to risk it any longer and end my testing, so I lasted 43 hours unmediated without and serious side effects or withdrawal symptoms. The one thing I loved during this period was how calm my mind was, total internal peace. Not like when I’m medicated, my mind seems to be racing and needs to be busy (definitely the drugs playing a factor here).
The last time I was unmediated, was 2 1/2 years ago. And back then, I was ready for a wheelchair. Could barely walk at all, couldn’t stand without support, couldn’t take care of myself, extremely depressed, didn’t care to live anymore. That was after 5 years of fighting PD unmediated. Eventually I had no choice but to get on Sinemet, but that lasted only 6 months (taking 5 tablets 200/50 a day) before it stopped working for me. Fortunately I found out about mucuna and that has helped turned my life around. I’m no longer fighting pd, I’m helping my body to recover instead. I truly believe our bodies can heal themselves, but they won’t be able to if we keep it medicated. I’m not sure how much I have recovered so far, I’m not ready to go unmediated for a couple of months to find out. But here are some of my old symptoms that aren’t around any more (when I’m medicated or unmediated): I fully have my balance back, full arm swing (my left arm wouldn’t swing before), no longer depressed, no more leg or stomach cramps, no longer constipated, expressions are back in my face, no longer get panic attacks. It a slow process, I’ve had pd for almost 8 years now. I made lots of changes in my life, it not just taking mucuna that will do it. I had to change how I lived and think.

Enjoy Life.
Max

[Ronhutton]

Hi Max,
Interesting to compare your detailed experiences, but please be aware stopping sinemet suddenly is dangerous. Look up "neuroleptic maligment syndrome".
Having said that, I have also tried going unmedicated for long periods, but I get down to a low level of sinemet first. It is no protection using mucona, it contains levodopa and that is what we are addicted to. I do believe however that mucona contains other beneficial compounds.
The longest I have gone without Levodopa is 3 days, but I was so slow I had to resume medication. I am soon entering my 18th year of PD, and I attribute my slow progression to taking curcumin 500mg to 1000mg per day, CDP choline 250mg, zinc tablets to boost the BBB, and Manuka honey plus garlic tablets to kill off infections. Sounds like witchcraft but it seems to work.
Ron

[bryn]

Originally Posted by Ronhutton

The longest I have gone without Levodopa is 3 days, but I was so slow I had to resume medication. I am soon entering my 18th year of PD, and I attribute my slow progression to taking curcumin 500mg to 1000mg per day, CDP choline 250mg, zinc tablets to boost the BBB, and Manuka honey plus garlic tablets to kill off infections. Sounds like witchcraft but it seems to work.
Ron

Hi Ron

Can you recommend a source for curcumin in the UK. There is a dazzling array of varying products on the internet and I dont know where to start!

Bryn

[reverett123]

Very interesting. Some of the ones that apply to me include the short nap phenomenon. i call it a "reset" and as little as five minutes has worked. Also there is the fact that morning meds spacing is more critical than later in the day.

So what happens in those instances? And are they related? I suspect some sort of restoration of timing to neural circuits in the first case. In the other, perhaps a tie to the daily hormonal cycles as the day advances.

Sleep is a recurring factor for us. (Now there's a darned brilliant statement for you )

[Max19BC]

Thanks Ron,
I forgot to mention in my posting a warning about suddenly stopping Sinemet or Mucuna.
Your suggestion to looked up NMS explains it the best:
Neuroleptic malignant syndrome (NMS) is a life-threatening neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. It generally presents with muscle rigidity, fever, autonomic instability and cognitive changes such as delirium, and is proven on a raised creatine phosphokinase (CPK). Rapid and large increases in dosage can also trigger the development of NMS. NMS may also occur in people taking a class of drugs known as dopaminergics when the dosage is reduced (i.e. Levodopa).

Thanks again,
Max

[Ronhutton]

Hi Bryn,
I think Holland & Barrat sell curcumin, but take care it is a reasonable strength. I did find it there a year or more ago, but it was too weak, so I stuck with iHerb, 500mg tablets. H & B may sell it under the name Tumeric, but then you need to note the curcumin content and work out how much is in a tablet.
Good hunting.
Ron

[Max19BC]

I thought stopping drugs for a day or so couldn't hurt. I wasn't prepared for what might happen next. Yesterday morning is when I decided to get back to my normal routine. Thinking I'll be the same as before, I went for walk (medicated this time) yesterday afternoon. I felt fine, my drugs/herbs kicked in ok. About 20 minutes into my walk, my body crashed. In a matter of a few minutes, I could barely walk. I was in the same condition as when I've finished my test, barely walking. Their wasn't any reserve of meds in my system, so when my meds wore off, I couldn't walk. It took me quite a while to get back home doing baby steps and shaking all the way. I sure people though I was a druggie, drunk and mentally retarded. It took until now to get a reserve back in system. I'm starting to get my old self back. I held off posting this 'till I knew what was happening and that this was just temporary.

Crazy me,
Max

[reverett123]

Desperate might be the word. No one is going to do this research in time to help us. We have no choice but to take these risks. But places like this give us a chance. I learned from what you did and I thank you sincerely.

Originally Posted by Max19BC

I thought stopping drugs for a day or so couldn't hurt. I wasn't prepared for what might happen next. Yesterday morning is when I decided to get back to my normal routine. Thinking I'll be the same as before, I went for walk (medicated this time) yesterday afternoon. I felt fine, my drugs/herbs kicked in ok. About 20 minutes into my walk, my body crashed. In a matter of a few minutes, I could barely walk. I was in the same condition as when I've finished my test, barely walking. Their wasn't any reserve of meds in my system, so when my meds wore off, I couldn't walk. It took me quite a while to get back home doing baby steps and shaking all the way. I sure people though I was a druggie, drunk and mentally retarded. It took until now to get a reserve back in system. I'm starting to get my old self back. I held off posting this 'till I knew what was happening and that this was just temporary.

Crazy me,
Max

[Ronhutton]

Hi Max,
Glad you are back to normal, it can be a frightening experience when you have a relapse like that. That is why I warned to slowly reduce your meds to a low level before you take a holiday. I experienced the same crash when my neuro switched my agonist. I was on Pergolide, and I was told by the doc to stop it. I did and suffered the same experience as you described. I had to go back and restart the Pergolide and very slowly, titrate myself off it, and then had no problems.
Best wishes
Ron

[lou_lou]

please -ALL PD paients...


please never try what Max did
only if the doctor suggests a Titration schedule only on the condition that you have spoken with your doctor/ neurologst
First...
as this is what used to be called a "DRUG HOLIDAY" - these are not suggested for PD anymore?




Ask the Experts about Parkinson's Disease/Movement Disorders
From Medscape Neurology & Neurosurgery

Early-Onset Parkinson's Disease

Question
A severe, 42-year-old parkinsonian uses 1800 mg of levodopa daily with pramipexole, entacapone, and selegiline. There may be abuse, but there are also intermittent severe "off" periods. He refuses to allow 2-3 weeks for receptor upregulation and inpatient stay will not be covered. What is your preferred strategy?


Response from William C. Koller, MD, PhD
Professor, Department of Neurology; Adult Neurology , Movement Disorders, University of North Carolina School of Medicine, Chapel Hill, NC




This is an early-onset person with disabling parkinsonism who is taking large amounts of medication. He is taking 1800 mg of levodopa plus a catechol- O -methyltransferase inhibitor, a dopamine agonist, and a monoamine oxidase B inhibitor. He has severe off periods and most likely has dyskinesias. He appears to be responding well to levodopa, but there is a question of levodopa abuse. It is true that some patients take extra levodopa to avoid any "offs" or perhaps because they get a "high" feeling. These individuals are often very dyskinetic; however, this does not seem to bother them. This occurs more often in young persons.

Unfortunately, there is no successful intervention for this problem in these patients. There is reference to a possible "drug holiday" (taking the patient off all his medicines for a time). Drug holidays are not performed anymore because they are dangerous, and if beneficial, they do not have a lasting effect.


http://www.medscape.com/viewarticle/505821