I have now been awake for 5 hours WITH a DBS and I am still off. I am wondering if there is some way to measure the amount of dopamine (levodopa) that is in the blood stream. Then we can better establish where we are and possibly have better medication regimen. I would know how far from "on" that I am etc. I realize that there are many factors to this such as the blood level may not be the same as levodopa needs help to cross the blood-brain barrier, what may be an "off" level for one person may be dyskinetic to another but once you knew your levels that would be what you could go by. I was thinking of a device similar to the glucometer that diabetics use then again you have the blood-brain barrier issue. On the other hand may some type of DBD (Deep Brain Dipstick) may work. I'm a couple of quarts low right now.

how often I've thought of this need. I call it the Dopa-meter. SOmetimes I can guess close to my l-dopa needs, but it's too frequently a bad guess. I keep thinking that if I were more 'in tune' w/ my body, it would be easier, more accurate. Have found that the more on my mind, the more I miss. Unfortunately, life 's demands throw me out of touch.

I wonder if some simple muscle testing could be used? SUggestions, anyone?

Cogwheel rigidity might be useful here. I can sit quietly and rotate my head from side to side and detect it easily. Kind of a "pop, pop, pop" sensation. It is less but still present if I nod up and down. Slightly detectable if I roll my eyes, too.

It might be possible to monitor DA levels with that somehow. Fo example, I find that side to side done slowly has no effect on my tremor. But speed it up and my tremor begins. If that point changes with my functional ability, it might be possible to use that time interval to monitor function and dopamine.

What I would REALLY like to know is what alters the level of dopamine other than the passage of time. I have begun experiencing "offs" in the last while, and sometimes a 25/100 Sinemet will last four hours, sometimes two. Sometimes it will kick in within half an hour and sometimes it will take two.

I have been keeping a diary, trying to figure out what it is that causes the Sinemet to be more or less effective, and so far I can't see anything consistent. It is REALLY annoying. Any suggestions?

I've focused on food, sleep, level of hydration and what supplements I've taken. I will probably add in stress and level of activity as well.

If I could just figure out what gives me a quick "on" and a good four hours, life would certainly be a little easier!

A small stone sends us careening away. Same with speeds above a crawl. The car runs, the muscles work. The results are hard to control.

So, the sinemet that worked yesterday may not today for reasons that are darned hard to see. Chronobiology (circadian rhythms) has some clues as levels of hormones, neurotransmitters, cytokines, etc go up and down during the day.

Stress levels are big factors. How much sleep, too.

Wendy,

I know exactly what you are talking about. I have realized that when I have been very busy and eaten little during the day that my meds last longer as well as respond with quicker on time after taking my next dose. For example if I take my meds (I have to, even to get out of bed) and eat first thing instead of waiting an hour or so after meds to eat that I respond better. I also note a significant slowing down when eating protein during the day. This is obvious for a PD patient. Say a burger for lunch. However, it used to not affect me. I don't dare eat eggs/bacon, etc in the morning. One of my biggest problems lately has been getting up in the morning, then later in the afternoon I take a nap due to being exhausted. Then I miss a dose or 2 and I'm struggling to get back to "on". With regards to Reverett's input of cogwheel rigidity in his neck it seems as though that may be too subjective. I realize Reverette that you were just offering some ideas. I don't have a tremor either so what do you do? To sum it up I guess that you have to know your own body.

Sensor Detects Levels of Brain Chemicals

FRIDAY, Sept. 12 (HealthDay News) -- A new wireless deep brain stimulation sensor that can monitor levels of brain chemicals has been developed by Mayo Clinic researchers and colleagues.
The wireless instantaneous neurotransmitter concentration sensor (WINCS) is surgically implanted in the brain to provide real-time measurement of chemicals such as dopamine, glutamate and serotonin.
Monitoring levels of these chemicals may help neurosurgeons determine the best placement of stimulating electrodes during deep brain stimulation (DBS) and improve patient outcomes, the researchers said.


http://news.healingwell.com/index.php?p=news1&id=619304

paula

This device appears to be the answer to what Jim was hoping for in the other thread. Unfortunately, it appears to require the same surgery as DBS, so, simple it is not!

1. any "dopameter", would have to be an implanted device to do any good.
2. one needs to NOT give up on their drug protocol. Types and amounts of drugs vary wildly from person to person, and one needs to be willing to experiement to find what works for them.
3. explore the taking your meds (sinemet) in liquid form on an hourly basis. I have a friend that does this and it works extremely well for her. Also to that end try apomorphine as a rescue remedy.
4.take your meds on an empty stomach!
5. IF your DBS is not working for you, try a new programmer! less than 5-10% get no value from their DBS. the median result in 2002 for a DBS was a 50% reduction in meds, and an 80% increase in "on" time.
If your DBS is not working for you, you should as I mentioned above, try a new programmer.
have your DBS hardware checked out, Impedance test, X-rays for wire breaks etc.
Have a GOOD independant surgeon look at your post-op MRI's, and verify your lead placement. their are surgeons out there who seemingly cannot hit a barn with a shotgun, if they were inside the barn!!
1 millimeter off can deternine whether it works well or not.

Charlie