[jcitron]

and I was doing fine until now.

I decided it was time for a break from the medication for no other reason other than deciding that my body needed a chance to cleanse from the chemicals. I've been doing okay until a few days ago. This past week I had the stomach bug/flu-thing that's been plaguing everyone in my area lately. My brother-in-law decided to bring it over to us. He gave it to his daughter and my sister. This of course spread through out the house.

In the midst of the severe stomach wreching, heaving and liquid pouring from both ends, I developed dyskinesias. Now supposedly these happen when your on the medication for too long. Well? What's up then? I had them off the meds. My legs and arms went crazy all night until I had to get up, or at least sit up. Eventually I fell back to sleep, but they kicked in again and kept me from totally falling into a deep sleep.

The bug has now passed after 3 days of watching for the Grimm Reaper. I was really hoping he could have put and end to my life as death was a lot better alternative to this bug, but as you all know life isn't that kind.

Anyway now that it's over, I now have something else that's weird. My lips and jaw have twisted to the left and I've developed a nerve itch only on the left side. The itch is the type where you can rip the skin off scratching, but it doesn't go away. I ended up breaking the skin then dumping alcohol on it in vain. They itch comes in goes and runs all over the left side only and in places that I can't scratch in public.

The biceps are still good, but my mobility is now a bit slower. I noticed this today when playing the clavichord as my fingers couldn't trill like I could before a few days ago. The balance isn't so sh** hot either. I fell outside yesterday when I was out getting the mail. It was more of a pride breaker than anything else. I'm glad no one else saw me hit the snowbank.

I think I'll be taking the medication train again by next Monday since things are beginning to deteriorate slowly like this.

Has anyone else tried this or had weird results?

John

[Ronhutton]

Hi John,
Do you mean you went on a drug holiday for 2 weeks, and during this time you had a bug and diarhea? Then still without medication, you switched on and also had dyskinesia? Please correct me if I have misunderstood.
If so, this is very interesting. There is a school of thought which links PD to constipation and spread of bacteria. So does a dose of diahea clear the way for own dopamine production??
I did have a bout of dyskinesia once when my sinemet had worn off, and yes I was in the middle of a spell of loose bowel movement. I had experienced on periods when I was not medicated before but not with dyskinesia, which indicates too much levodopa.
Can't help feeling there is a big clue here.
Ron
PS Your other strange symptoms may be the result of suddenly stopping sinemet, you should go off it gradually.

[chasmo]

Originally Posted by Ronhutton

PS Your other strange symptoms may be the result of suddenly stopping sinemet, you should go off it gradually.

A significant percentage DIE ( as in taking a permanent dirt nap!!)when they go "cold turkey"!
ALWAYS consult with your MDS before stopping any of your meds!!

Charlie

[Jaye]

It's called neuroleptic malignant syndrome.

The symptoms? Drug side-effects? John, I enjoy having you in this forum and you seem like a good guy, so I hate to be the one to tell you what those symptoms are from.

Okay, here goes:
You seem to have Parkinson's Disease.

I'm sorry. I couldn't not do it.

Jaye

[chasmo]

you are a hoot, my dear!!

[jcitron]

Originally Posted by Jaye

It's called neuroleptic malignant syndrome.

The symptoms? Drug side-effects? John, I enjoy having you in this forum and you seem like a good guy, so I hate to be the one to tell you what those symptoms are from.

Okay, here goes:
You seem to have Parkinson's Disease.

I'm sorry. I couldn't not do it.

Jaye

Well Jaye I think you might of hit on something here. My symptoms are all coming back now like I was prior to mediction. My dreams by the way are just as weird off the medication as they were on. In fact they are more intense so that proves the Sinemet and stuff was't doing the dream thing. The cramps are big-time in my feet now and I fell outside while cleaning off my car this morning. Again this was a pride type of fall that no one else saw. The snow is quite cold, but fluffy and powdery. Oh do I wish I could crosscountry ski today.

Anyway, my doctor reported that I was something like stage 1? Whatever that means while on the medication so I wonder what this is without it. If this is some kind of scale I could compare to that the drs refer to all the time, then I'll have an idea what I am off the medication. What's the baseline supposed to be on this relative scale?

John

[jcitron]

Originally Posted by Ronhutton

Hi John,
Do you mean you went on a drug holiday for 2 weeks, and during this time you had a bug and diarhea? Then still without medication, you switched on and also had dyskinesia? Please correct me if I have misunderstood.
If so, this is very interesting. There is a school of thought which links PD to constipation and spread of bacteria. So does a dose of diahea clear the way for own dopamine production??
I did have a bout of dyskinesia once when my sinemet had worn off, and yes I was in the middle of a spell of loose bowel movement. I had experienced on periods when I was not medicated before but not with dyskinesia, which indicates too much levodopa.
Can't help feeling there is a big clue here.
Ron
PS Your other strange symptoms may be the result of suddenly stopping sinemet, you should go off it gradually.

That is it, Ron. Dyskinesia happen without the medication as well so the reports in the field maybe wrong or perhaps they happen because of too much or too little of the dopamine. I think that sometimes the scientists and doctors look too close at things to see the big picture.

It's interesting how the stomach bug did this. This was a really nasty thing that has lasted for three days. We all had it in the house, and are still pretty hosed from it. I need to go to work today, but my patients are like 0.025 microseconds if that with anything around me. God help the other people in the office today. They'll think I was out holiday shopping or something.

John

[Curious]

john, the flu bug you had may have caused a drop in your sodium and potassium levels. that can cause serious muscle cramping and the jerking. also nerve problems.

but jaye does have a point.

[reverett123]

Anne Frobert can speak to this better than I, but sinemet seems to show not only the cycle we deal with every day but also a longer one of two to three weeks. I wish that I could provide more detail but maybe she will see this.

And don't underestimate that virus/bacteria episode. As Ron's bout with the abscessed tooth showed, infections take a toll. A hundred years ago, flu swept around the globe and left a trail of PWP in its wake.

[lindylanka]

Hi John,
What you describe as dyskinesias may well be dystonias which can sometimes look and feel similar. The jaw stuff that you talked about is almost certainly a dystonia, I get this when undermedicated and when adjusting meds it occurs if I am overmedicated (this is one confusing disorder).

I believe the on-off phenomenon was documented prior to levodopa, that parkies who were very slow could sometimes be observed having sudden unexplainable accelerations! This is different to the on off of medications.

A while back I was taken into hospital to come off sinemet so I could be seen in an 'unaltered' state. After some initial wearing off stuff, very uncomfortable - not feeling at all functional for a day or two, and a general slowing down - I felt better, which was strange, until I realised that there was a difference to feeling better mentally and how I was actually functioning. By day 5 the PD was showing through, all the original rigidity had started to return, my breathing was poor due to very tight chest muscles, my face was very expressionless and immobile, and my posture was 'old', i really had started to look very hunched, my head drawing towards my chest, and all my movements very limited. So my neuro discharged me and I went back on sinemet......... Hey presto, one hospital bed tied up for 5 days for something I could have told them anyway, except that nobody really listens.............. However, visitors were much more aware of the changes than me, and were quite vocal in expressing how shocked they were at my underlying condition.

But your story resonates, because through it, I (the bit that is the thinking feeling me) felt better.......more myself, just with a body that really did not do what I wanted it to do......

Things that returned included an ability to stay awake indefintely, strange dreams when I did eventually sleep, falls, a greatly reduced reach, slow thinking and responses, my signature almost disappeared it was so small, voice became uncertain and very quiet. Also by the fifth day rigidity was affecting me generally and I was able to observe a pd shuffle emerging and how my body generally changed shape. As a result of this I am both much more grateful for sinemet and much more aware of the sx, which for me are wearing on and off effects which are sometimes more noticeable that the underlying condition, and mental effects such as apathy etc. Also daytime sleepiness associated with dose cycle. Off medication I had an inability to stay awake in the late afternoon, also there prior to dx.

My neuro would not take me off meds without supervision, because of the possibility of NMS. I was however taken off cold turkey.......

You mention inflammation.......it is my belief that this plays a huge role and there is probably immune response component to PD.....

I found your post very interesting. Perhaps the dyskinetic movements you descibe could also be due to meds clearing from your system? sinemet is a powerful brain altering drug that affects movement, it is logical to me that making a radical change (cold turkey) would produce some effects. What keeps me on it is the knowlege that I have progressed in the nearly 6 years Ive been taking it

You my be back on it by this time - a bonus when you restart may be that you get a cleaner response. For me I got a few weeks with a lot less of the 'toxic' feeling I sometimes associate with meds.

Good luck with it all, but take care, if you have any NMS symptoms please get to a doctor.........

Lindy