Waiting on Levodopa
 

Waiting for the Levodopa to kick in ... is misery.

Can't walk - sit or stand ... feel like I want to jump out of my skin.

What do you do while waiting for the Levodopa to "arrive"?

Some things that help me (sometimes)
 

1- Sitting in the quiet dark doing a breathing meditation.
2- Taking a B-complex about 15 minutes after the Ldopa
3- Taking a potassium supplement about 15 min etc.
4- Lying in the floor "wallering". If you don't know what that means, send twenty bucks for my book, "Wallering - A Country Way to Knowing" :D
5-You might try mucuna. It comes on fast but goes just as quick. It might be good if used with a CR form of sinemet.

distraction...

music, tv, talking on phone, using computer, etc. anything to get your mind away from your physical state of being. get it ready before the bad time strikes so it will be available for you when you need it.

Hey wait a minute. You wrote a book about Wallering?
Or are you joshing me?

This guy named Mike comes looking for someone lost for years; the only thing we know is that this lost friend once said he felt like he was jumping out of his skin; time melts and we find who Mike is looking for from the past. Himself.

And then you teach him Wallering?.

Mike, seriously, what's up with finding the jumping out of skin guy and should i be warned about wallering?

I used to have that feeling when I went off for the night..Couldn't walk, sit, stand, lay down or sleep..My whole body felt so uncomfortable, it drove me nuts..I felt like jumping out of my skin too..300 mgs of Gabapentin took care of that feeling

This got out of hand.

It was Stevem53 that originally said that about jumping out of his skin.

Thank you Mike
 

Mike,
But I really did like the way it seemed, as a Twilight Zone episode, as so much of having Parkinson's is like living in another dimension that other people can't see; and we really do look back and say, "Who have I become?"

Back to current reality! (if there is any such thing as current reality) you and Stevem53 are telling it like it is - I have the same thing: NO position is comfortable; NO part of the body will remain calm; it is like being electrocuted; it is like being tortured; it is like you are jumping out of your skin; it is like you WANT to jump out of your skin; out of your body; out of this crazed pain; and you try every trick in the book to make it go away; and then it does go away; only to return again and again. Doctors do not even seem to be familiar with this; it is a valuable contribution to find ways to describe everything we go through; and on this item, you and Steve say it best:

What does it feel like?

It feels like i am jumping out of my skin

It feels like I can't live in this skin any more

It feels like I can't take it any more.

But we do take it. And it goes away. And it comes back.

And people say well you are lucky you don't have something serious, and you realize that once again, you are in the Twilight Zone, another level of Alice in Wonderland. What the doormouse said.
Thank you Mike and Steve, for blowing the fog horn in the fog.

Mucuna
 

Mucuna and Sine Cr is a great idea, try to get your Dr to write a script for Carbidopa only (If Possible) to carry the Mucuna across the BBB and get off the Heromet if its not too late, otherwise On Offs will continue. On Offs are just a fancy way of saying i have to wait to get my next "fix" from my dealer who is at lunch right now. It took me 2 years to get off heromet and start my native Dopamine production again and i used Mucuna to do it along with other stuff. If you have been on Sinemet for a long time quitting is not an option, after all it does replace what we need...just not effectively and with serious dependancy issues and side effects that rival the effects of PD in alot of cases. i have found that most people can be very protective and defensive of their Sinemet so i dont mean to cause trouble. (I have strong opinions not meant to offend)

Peace,
BP, PD since 33 and med free so that i may die naturally.....heheheh.

what brand of mucuna do you use, what is the dosage and how much carbidopa do you take per day if i may ask?

Mucuna
 

Hello! I hope your wellness level is high today. I used (no longer) Solaray, DopaBean, Mucuna Pruriens and as suggested above I took it with very low doses of Sine CR just for the Carbidopa effect. I never received a carbidopa only script just an idea. I slowly reduced sinemet from 25/100 every 3 hours 24-7 to CR 25/100 BID-2 times a day, to nothing not even mucuna. I felt like I was going to die and believe that I was "walloring" for many months and skating the edge of NMS. I really crawled out of my skin while quitting....just like the off periods but no relief. Now.....I still have tremor, rigidity, and dyskinesia when stressed and a lot of the other PD goodies leading into Stage 3, but I can make love to my wife again (the usual way heheheheh), taste my food instead of car exhaust, pee correctly, not so fatigued, no walloring and no on off, none of the classic heroin addiction symptoms any longer.. I follow a mitochondrial diet and suggest winter cherry or Aswaghanda (same thing) to ease your offs and or anxiety. My progression has slowed dramatically in the past 5 months hopefully because of what im doing but who knows? At the very least Mucuna can replace some of your sinemet doses ( I believe were mostly overdosed) and thereby extend the period of time you have before the big DBS (which I will not do). I don't intend to make anyone angry on this site ( I lurked for a year) but feel that someone doing PD without meds is sufficiently rare that I should put myself up for comparison good bad or indifferent. The greater percentage of complaints across several Neuro type sites seems to be med related and actual PD complaints are taking a back seat.

.Peace, may your Wellness level remain high......
BP with PD since 2003, no meds so I may die naturally......