Off Times?

[PDFree]

What do you do when carbidopa-levodopa "off" times get inconsistent, more frequent, or it seems the C/L didn't work at all? I get extremely uncomfortable, uncoordinated and so incredibly weak.Thank you!

[park_bear]

It would be helpful to know your medication regimen

[PDFree in reply to park_bear]

I thought I did reply, must have unintentionally erased it instead.

I take 25/100 C/L 3 x day. One at 4:00 pm, one between 10:30 pm to 1:30 pm, and another one between 2:30 am to 4:30 am. I sleep poorly, have for years. Most nights I am heading toward bed about 8:30 pm and am asleep by around 9:00pm. For the last year or so I wake up every 2-4 hours and the uncomfortableness sets in so that's why I started taking a C/L when I wake up, thinking my dopamine level has dropped as it does during he day. The time variation is because I wake up in a range of times in the middle of the night, not the same time every night.

During the day I also take mucuna powder in what has become large doses. A naturopathic doctor got me taking that several years ago. For me it works the same as the C/L pill and I don't have side effects from it. I like the fact that it's a natural substance, a whole food so to speak, with nothing but brown organic ground mucuna bean, instead of a synthetic drug. I take several doses a day timed usually every 3 hours. So I will take one or the other, not both. Every not and then I will take a 4th C/L.

Lately, whether after C/L or mucuna, it is wearing off sooner and sometimes doesn't work at all. I'm rather drastically hit with severe weakness and uncomfortableness, plus my other PD symptoms that are for the most part undetctable when I am "on" from the C/L or mucuna. If you didn't know, you wouldn't know I have PD.

I read a study/trial done using mucuna powder and the conclusion was that it worked for people without much for side effects for most. The problem was the inconvenience and non-compliance expected of having to take multiple doses of the powder mixed in a small amount of water daily. I can attest to that, it is rather inconvenient.

[park_bear in reply to PDFree]

You already said you did not care to use additional medications so I'll skip that. Immediate release C/L is usually prescribed by default. The extended release version lasts longer, although it has a lower peak value. For details see here: healthunlocked.com/cure-par...

[00Mark]

There are other meds which can work alongside C/L, for instance Opicapone, to even things out.And DBS (direct brain stimulation) is helpful for some people.

Possibilities to discuss with your neurologist, I think. Good luck!

[PDFree in reply to 00Mark]

I figured there would be more meds suggested which I'd prefer not to take. I wonder if there isn't an underlying issue that's affecting my sleep that could be corrected, and that the shortage of sleep is stressing my body enough to cause the faster wear off?

No DBS for me! I know it has helped some people but I cannot imagine having that done.

[Juliegrace in reply to PDFree]

What side effects do you get from the c/l that you do not get from the increasingly large doses of mucuna? Perhaps a 1/2 tab of c/l with the mucuna would make it more effective. Also, years ago I swore I would never consider DBS, but now, 15 years in, I am ready to do anything that might help alleviate some of my symptoms. Never say never.

[park_bear in reply to Juliegrace]

Have you tried cinnamon? This is a low risk intervention and it tastes good. It takes 2 months for full effect. It has really helped myself and others:

healthunlocked.com/cure-par...

[Juliegrace in reply to park_bear]

Yes, I tried it when you first posted about it but it did not help.

[PDFree in reply to park_bear]

I have not yet tried it, although I did know of it and I use Ceylon for cooking but I’m not getting anywhere near a therapeutic dose that way. So I will give it a shot.

Thank you for all of your suggestions, I appreciate you taking the time to respond!

PDFree

[Smittybear7 in reply to 00Mark]

Does Opicapone have any side effects?

[00Mark in reply to Smittybear7]

I haven't noticed any. It's supposed to cause drowsiness, and I take it at bedtime.But perhaps some people will have side effects - that seems to be the case for most drugs.

[Smittybear7 in reply to 00Mark]

Can you take it during the day ?that seems to be where I need little extra. thank you.

[00Mark in reply to Smittybear7]

I take one dose at bedtime and that seems to serve for 24 hours. I haven't tried taking Opicapone during the day. I suppose you could experiment, if the nighttime dose doesn't seem to be working for you.

[00Mark in reply to Smittybear7]

"Conclusions: The pharmacokinetic data suggest a certain degree of interaction at absorption phase that was minimized by separating both administrations for at least 1-hour. Opicapone was developed as an add-on to levodopa and, taking into consideration that Parkinson’s disease patients may well necessitate several daily doses of levodopa, a bedtime regimen for opicapone was proposed to better allow the physician to individually tailor the levodopa daily regimen without any concern of a potential absorption interaction."

mdsabstracts.org/abstract/d...

[00Mark in reply to Smittybear7]

Oh I forgot - Opicapone does turn my urine yellow, which is a novelty but not a problem. 😄

[Nitro53 in reply to 00Mark]

Never heard of this one. I take Entacapone with each dose of C/L to make my on times longer. It works for me.

[00Mark]

Yes, sleep can be a problem for me too.You can search on this forum and elsewhere.

Suggestions I've come across include good sleep hygiene, exercise, limiting daytime naps, herbal tea, no coffee after 6pm, magnesium supplements, sour cherries and melatonin.

I guess different things help different people.

[PDFree in reply to 00Mark]

Hi 00Mark,

Thank you for your suggestions, I’ve tried some of those and I had forgotten about cherries, I have some dried ones without sugar, I think I’ll try having a few before bed.

[Smittybear7 in reply to 00Mark]

What kind of tea do you drink?

[00Mark in reply to Smittybear7]

Contains chamomile, spearmint, lemongrass, hawthorn, tilia flowers, valerian.

Celestial Seasonings Sleepytime Extra

[park_bear]

I sleep poorly as well. In the pre-dawn hours I abide in Divine Love Chi meditation. This is a great time to meditate and goes a long way to make up for lost sleep. Qigong reduced my need for medication. My Qigong experience here: healthunlocked.com/cure-par...

[00Mark]

You probably know this, but food containing protein can interfere with levodopa absorption, as can Helicobacter pylori bacteria in the gut .

[PDFree in reply to 00Mark]

Thank you, I do know that but it’s been challenging to figure out for me. Large amounts of protein can do it, and I’m a small person so I don’t eat large portions anyway but large (normal meal sized) portions of anything will affect the C/L, whether it’s a smoothie, a bowl of oatmeal, a bigger meal sized salad, etc. The same meal another time might have no effect, it’s frustrating trying to find a pattern. I can say this much, if I don’t eat anything at all I don’t have a problem. But I have to eat eventually! Then I can feel ravenous and eat too much!

[Smittybear7 in reply to 00Mark]

What is Helicobactecr pylori?

[PDFree in reply to Smittybear7]

It’s a bacterial infection in your stomach.

[00Mark in reply to Smittybear7]

There's a test which can confirm whether you have H. pylori, but it isn't available on the NHS in England.

[Smittybear7 in reply to 00Mark]

How do you know if you have a bacteria in your intestine?

[00Mark in reply to Smittybear7]

If the C/L medication isn't working as expected, then you'd have to ask your doctor about a test for H. pylori. But I understand this isn't available on the NHS in England.

[00Mark]

I've read here that you need to take C/L at least half an hour before a meal, or one hour afterwards.

But yeah, things always seem to vary from one day to the next.

[PDFree in reply to 00Mark]

Yes. Thank you!