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Beau's Mom

Complete Sinemet Depletion

11 posts in this topic

Last Friday I went to exercise just before my 10 AM dose of Sinemet was due. When I opened my purse to take the med before I started exercising, I discovered I had forgotten to put the bottle in my purse. Since I only planned to exercise for about 30 minutes, I thought , "How bad could it be?" and got on the recumbent bike. I rode for 8 minutes at a fairly good speed but very low resistance. I moved on to the next machine which exercises both arms and legs, and within two minutes I could not longer push the foot pedals. I got off the machine, put my papers away, and foolishly refused assistance down the elevator and out to the lobby. It was 10:15 when I called my husband to bring me my medication. He didn't answer so I called the office of the RV park where we live and asked them to go find him and have him call me. I sat with my head on the seat of my walker and waited. At 11:00, one hour after the dose was due, he came in and handed me my two Sinemet and a bottle of water. By that time, I could not move by myself. He had to wheel me out to the car on my walker, pour me into the front seat, and nearly carry me into the motorhome where I collapsed on my recliner just inside the door. For several hours and another dose of Sinemet, I simply was totally incapable of moving. I didn't begin to feel a little normal until about 8 PM and yet another dose.

 

On Monday I saw my MDS and described the episode to her. She told me that when you get to the point where you are totally depleted of levodopa, your stomach freezes (gastroparesis) and doesn't empty into the small intestine for up to several hours. So the levodopa doesn't get absorbed until the stomach unfreezes and the med is absorbed by the small intestine. She told me next time I am late taking my Sinemet or suddenly go "off" I should crush the pills and dissolve them in water with a crushed Vitamin C tablet and drink it so it would be absorbed more quickly. I don't plan on having a "next time," but I went to Walgreen's and got a buy one get one 50% off supply of Vitamin C pills and put some extra Sinemet in a small fob attached to my key chain. I was shocked at how I am now without Sinemet. I was off it for about two months about 15 months ago and was slow but capable of doing nearly everything.

 

Moral of the story: Always take all your meds and something to wash them down with you wherever you go. You cannot know how your disease has progressed during the time you've been taking your meds faithfully, and you might prefer not to find out. My new favorite acronym: TGFS (Thank God for Sinemet)!!! TGIF doesn't work for me since I can't work any longer. :blink:

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Beau’s Mom:

 

I’ve used that method (Liquid Sinemet) as rescue therapy, on several occasions.

It works pretty fast but doesn’t last very long; however, it usually works to get me back on schedule. I was told to dissolve my Sinemet in soda pop because the carbonation causes the stomach to contract, facilitating digestion and therefore speeding the response time. I’ve seen this method discussed before but can’t remember if it was on this forum or the old young onset forum. Anyhow, it’s a nice trick to have in your tool box.

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Thanks Dianne,

 

That is good information that I didn't know. I do know that when I miss a dose and hit a bad off period, I become very disabled. At that point, my wife has to do alot for me...compared to functioning completely normal when on! It's a good reminder of how critically important the dosing schedule is. It's also a good reminder of where we'd all be without our essential (albeit sometimes frustrating) medications!

 

Blessings,

 

Mihai

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For those of you who take your last dose of meds before 6 pm and not again until the following morning probably after 6 am   are you ok when you do that?   If you sleep through the night then I suppose you are ok but for those of you who might have to get up to go  to the bathroom are you able to do it without a problem?  I would think Sinemet depletion would come into play here due to the 12 hours absence of the drug.

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I take my first 2 pills Sinemet between 6 and 7 am., my second 2 pills 6 hrs later and my last and 2 around 6 or 7 pm. I'm usually in bed by midnight and sleep 6 hours straight. In the morning, I have 30 mins to a hour grace period before I need  to take my first 2 pills

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Ok so when you go to bed at midnight that's about 6 hours later which is normally how you space out your meds then wouldn't you need another dose to be able to fall asleep comfortably?

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Nope. It's kind of weird but I am actually sleeping better than I have in years.  

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I was doing the 5am 11am 5pm

 

It was hard getting sleep as dystonia would visit me during the night.  Pretty stiff and when I get up to go pee... a bit of a challenge as I am moving slow.

 

Hence added added 10:00pm (when I go to bed).  It seems to be helping, but want to wait a good eight weeks before reporting if it keeps on helping.

 

So I'm doing much better.

 

Saturday morning, took my 11am dose, then on the Exercycle and did a full 30 minute fairly intense workout with ride/rowing mode. Worked up a nice sweat and pulse around 160.... yes, I shake like a bowl of jello post ride.  Felt good.  Showered, and nice and peaceful.  Went to the store with my wife around 3:00pm. Uh oh.... had her drive.  Once we were walking into the store realized I was just off.  I use a cart as a walker, but she was pulling me and went to do a sharp corner.... Felt like my brain slipped a cog (timing belt popped off then back on as visual/physical orientation was off).  I can not explain it, but at that point it was like "I'm heading back to the car and just sitting".  Normally it is like I bend a branch and it pops back into place.  That was like the branch was brittle and snapped.  

 

In hindsight, 160 pulse was too high.  Even though what happened was hours later.   It is like that exercise elevated the heart (I over did it) and burned out my dopamine much faster then I would have realized.  I should been good until 5:00pm, but by 3:00pm that was it.

 

Still getting the hand of increased dopamine and exercise response.   With the 4x daily I'm feeling better and moving better, but should remain as Clark Kent and not attempt any Superman tricks!

Edited by TexasTom

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Thanks TexasTom for the info.  My mom's current schedule is 5:30-1:30-8:30 and then I give 1/4 Sinemet at 3am when I get her up to the bathroom.  She's fine when she takes the morning dose but the afternoon and night dose she's high as a kite after that and she does sleep right after meaning a nap and then to bed for the night.   My only explaniation would be because those doses are taken after a meal even though it's at least 90 minutes after.  Being that my mom is 76 it's probably true that it takes longer for her to digest and for the meds to dissolve in her system.

 

It is really weird that whatever happens does not connect to the meds ASAP so you will never know.  It is probably true what you say that you really over did it and not until hours later will you find out.    3 years ago my mom was able to walk on her own and we would walk about the block for 20 minutes straight but once we get about 100 feet from the house her legs would turn to noodles and she would start falling down and look like she was 100 years old.  I would then drag her back inside where she would drop to the sofa and lay there for an hour.   I take photos of her daily to track her progress and whenever I used to show them to people they would assume she was walking like that all day long but sadly no.  Everything is make believe.

Edited by miracleseeker

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I am definitely learning the importance of timing on my Sinemet. My schedule got thrown off yesterday because we got invited to go somewhere for Mother's day yesterday but there was no real clear time on when we were going to eat. I was afraid to take my second dose and then them say "lunch is ready!". I chose to wait. Of course my hand started shaking and I began having difficulty talking. Finally the food was ready (about an hour after I should have taken my pill). I ate, waited about 30 minutes and took my next one. Though it worked some what, my tremors in my right arm never completely stopped until I took my 3rd dose later that evening. It's amazing what that little purple pill does. I love it, but hate that I even have to take it period. 

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