I have a most uncomfortable freeze-up every afternnoon/evening when going through withdrawal from the daily Levo/Carb regimen. The freeze-up begins around 2 hours and 20 minutes after I have taken my last pill of the day
(100/25), (that is 100/25 every 2 hours for a daily total of ~600 mg.)and I recover enough to move again and sit up, at 3-and- a- half hours after the last pill. At this juncture the daily lower body/leg dyskenesia quiets down, and is replaced by upper body tremor. I can then walk again, slowly and carefully, but the dysfunction has transferred to my upper body, and I often wake myself up shaking. I try to be lying down in as comfortable a position as possible to get through this ordeal. I usually have to call for help at least once during the dreaded freeze-up, when I am totally paralyzed for a brief period, and in pain from cramping up, or freaked-out from hyperventilating.

Our entire day revolves around this hour or two of crisis. But life is so much more bearable when it is predictable, and the withdrawal can be managed. When I was using Sinemet Controlled Release, chewed-up, the withdrawal lasted for hours, and I wasn't able to move until 4- an-a-half to 6 hours post pill. I tried adding Comtan (Entacapone) and that just made it much worse.

I eat my meal of the day between last pill and freeze-up, and have recently begun to have difficulty swallowing after freeze-up. My staple is humas and desem (yeastless bread,) with thick coconut milk and bananna later, and Emergen-cee. If I eat just about anything in the day time (not just protein) it often results in dose failure, and at least debilitating dyskenesia, at worst a full blown extra freeze-up.

I wonder why this routine withdrawal freeze-up is never mentioned in the literature?

There is so much that goes unmentioned except for here. I wish we could make it mandatory for all professionals who deal with PD to read all of the posts here. They would at the least find it informative and perhaps a bit depressing. I have one theory that involves head in sand to avoid seeing what you can't fix?
There are so many issues that aren't in the literature... like losing one's hair as a nice little extra bonus. None of the drug companies want to include that one as a side effect. Things like freezing and everything connected to it. I'm in a clinical trial and every time I go in, they ask me several questions about suicide!!!!! Is that another side effect?????? What!!!!!????? I certainly can see being depressed and having some serious claustrophobia with freezing. It gives you panic attacks like being held captive. It seems normal to have a reaction to feeling like that. What can we do about it?
We have big problems like what you are describing. I wish I could help you but all I can do is pray for you as I pray for everyone here and myself as well. My issues are small compared to others.

Atma-
Some thoughts from my own experience. You don't say how long you have been on the merry-go-round but I get the impression that it hasn't been too many years. Forgive me if I over-simplify.

You mention 600 mg of L/C and that seems to be the mainstay for you. That isn't necessarily a large dose, especially by itself. I'm taking 2200 mg of the two flavors and that IS a large dose. I ditched 32 mg of requip in the move and am satisfied. There is an old debate over whether what is worse, the miserable ride that you are on or the "whatever it takes to make life worth living" approach. I favor the latter.

But too little ldopa has similar symptoms of too much and the only way that I know to tell is to experiment. What happens if you take the same 100 mg every hour, every two hours, three, and four? That should give you a clue or two. Once you know that you can decide your next step.
-Rick

I agree. I am a bit of a white rat as many here are. I'm not saying to be irresponsible. But it is important to become very tuned into your own body and its' reactions to meds. Most mds just can't keep up with the hourly/daily changes we experience. Meds work differently in so many situations... what you eat, drink, state of mind, hours of sleep/alignment of planets. I personally take 1.5 l/d 25/100 every two hours almost round the clock. Yes, I have dyskinesia. So, I do alot of half doses sometimes a half every hour works. Sometimes it doesn't. The point being that sometimes you can stay within the general dose but break it up differently. You might consider experimenting particularly at night when you freeze. Whatever you do... please do something. Talk to your doctor. If you don't like the answers, talk to another doctor. You shouldn't have to be so uncomfortable.
Another suggestion is to keep a diary. Every half hour, write what you eat and what meds you take and a short memo of how you feel. Take that to your doctor, it may help him/her to help you.
Let us know how it goes... we care!

Atma;
Like Rick, I take a combination of 25/100 CD/LD rapid release and 50/200 CD/LD controlled release (both generic).
At present, I take one of each together every 3-4 hours throughout the day, timing doses at least 30 minutes before each meal and no less than 1 hour after each meal.
I find that this dosing schedule allows me to achieve and maintain an effective level of meds pretty much throughout the day. Because I usually start the day about 7 AM and try to get to bed no later than 11 PM this means at least 4 of these two-pill doses of CD/LD each day.
This may sound like a lot of DOPA, but it is pretty well accepted that the actual effective availability of the drug in the current controlled release preparations is only about 50-60%.

Robert

To do about PD, we are unsure of. For decades we have realized that we are all a bit different as to the manifestation of " Parkinsonism" symptoms, that is the "snowflake" descriptor. Since each one of us has sometimes the opposite responses to various drugs or other "treatments" for PD, it seems that we can hardly come to a consensus about a common experience. What I mean to say is that what is good for the goose 's not necessarily good for the other goose, er' sump thin like that!
It is evident that some are responsive to dopa, some not. Of those who respond, the response may be smooth for a year or two, throughout our lives, or never. Dyskinesia s, and/or dystonic responses ( which I differentiate as uncontrollable movements with or without severe muscular cramping) can occur, disappear, reappear or be static or increasingly debilitating, as time and each one of our unique conditions evolve. Some, only get the movement problems at peak dose, others almost immediately after taking a dose of an antiparkinson drug, and others dont even after many years, due to each PWP's unique absorption, distribution, metabolism, and elimination of the drugs that they use. There are so many factors which determine how bad and how long each one of us will live with PD, that nobody, not even the best of specialists, is able to predict.
All I can say ( and not for sure) is that we each are fighting a slightly different battle. It pains me to hear of stories about horrible situations being experienced by some of us.PD is a frightening disease when advanced condition leads to these horrible side effects from meds, and freezing from too little medication, as rev says above.

Same major nightly trauma for Jan. We're collecting pennies to purchase a pneumatic bed topper called a Volkner Turning System, designed for folks who are unable to initiate movement in bed. I hear there will be studies published soon and then maybe movement disorder diagnosis will be added to what insurance will now cover, for bed sores only. Given how much Jan suffers, this may be a reasonable option. Way less cost than a motorized bed, which does nothing for her. We shall see, if possible.

In the meantime, Jan goes to sleep by 9 PM and hopes for good sleep until 3 AM, the optimal window for the body to restore. Anything on top of that is a bonus these days.

Best wishes!

If Jan is really having that bad of a time turning. PM me, with address for pennies. I don't have much, but I am willing to send a little. Perhaps if we all did just a tiny bit for each other on earth, we would give a little relief to each other. This would be heaven. ginnie

I'm in for that. Not rich here but can certainly help a bit. PM me. A Paypal account would be easy if you have one.

I just did a little search and found a company that sells equipment. Don't know anything about them but they say they have a Volkner for sale.
http://rehabequipmentexchange.com/ad...pment_for_sale
Also I found an even better deal as it includes the adjustable bed on Craigs....
http://orangecounty.craigslist.org/hab/3354704017.html