Drug Fast

[jeeves19]

Hey. My drugs and Mucuna seem to be giving me trouble at the moment. Either they’re giving me mild dyskinesia or the active time that they seem to be giving me freedom is getting quite short 😕. I’ve heard that ‘drug fasting’ can reset some of these lost properties but I wouldn’t really know how best to pursue this line of possibility, if at all. So: is it feasible? Has anybody done this? Etc .........and please boys and girls.........no slanging matches eh?! 😊

[Grumpy77]

"and please boys and girls.........no slanging matches eh?! 😊"

Really??? I think this disease (and the meds we take to combat it) affects us in bizarre and mysterious ways

[beehive23 in reply to Grumpy77]

agreed.

[Buckholt]

Not a holiday as such, but I do miss my evening dose from time to time if lm just at home watching tv, and don’t therefore need to move much. My neurologist of course however did say I should keep my routine regular.

[WinnieThePoo]

"and please boys and girls.........no slanging matches eh?! 😊"

Spoilsport. I was just about to set a chemistry exam for one of our friends. Guess you're right and its not worth it. I worry too much about people believing in fairy dust, as a result of inaccurate or misleading comments. I should learn my HiFi forum lesson. "If they want to electrocute themselves - let them. It's not my responsibility" (the response I received from a friend who is an expert electronic engineer, in the context of people posting dangerously incorrect information about mains electricity and earthing arrangements)

I guess nobody ever died misunderstanding fairy dust

Hope you find a fix to your problems

[jeeves19 in reply to WinnieThePoo]

Cheers Winnie. Did you see the film about Christopher Robin? Quite good. I believe he spent his life as an antiquarian book seller in Dartmouth!

[WinnieThePoo]

We saw the film Christopher Robin. My wife is a big Pooh fan, having grown up near Hartfield in the Ashdown forest. We've played pooh sticks at Millbrook...

But I picked the name because of my interest in the microbiome and fecal transplants

[Kevin51]

Hi Jeeves,

sound like you need to iron out some of the peaks in your external dopamine/dopamine agonist concentrations.

I have tried stopping my LDopa meds - not a problem for me but my dosage was low. Stops the dyskinesia but my tremor and slow hands gets unacceptably worse. Washout is about 24/48 hrs. Didn't "unlearn" the dyskinesia but maybe I did not keep it up for long enough. I seem to be dyskinesia sensitive to small doses of LDopa unfortunately. Possibly because of my low weight - BMI is 19. The key factor is the Dopamine concentrations released in the brain (as WTP commented in his reply to your last post). I gave up instantaneous release (IR) sinemet and now take only extended release (ER) so as to keep those external dopamine concentrations as low as I can accept. Its particularly good at night and means I can work out in the morning. I tried a combo with Mucuna since it must be lower dose than my IR Sinemet - still working on that. My dyskinesia is definitely less intense and more controllable on ER but PD symptoms are less controlled. I may try adding a low dose dopamine agonist but that has to wait for my next neuro appt. Rytary is an ER/IR LDopa combo so not so easy to optimise. PS (sure you know but) going cold turkey on DAs is not always possible without severe withdrawal symptoms.

Kevin

[jeeves19 in reply to Kevin51]

Thanks very much Kevin. Really appreciated.

[lenamm in reply to jeeves19]

I'm like that also - ER much less dyskinesia. I can not take IR - all dyskinesia.

[lenamm]

I've tried drug fasts three times - quickly, moderate and super slow. I have a very prolonged effect to L/C. All times for 72 hours I felt great and then I had convulsive quality tremors. Ended up in ER 2 of the 3 times. I was never on more than 200mg daily when I tried to get off. Each time it took about a month to return to "normal". The only time I reduced without issues was post surgery.

[glenandgerry]

Glen stopped taking Sinemet about a month ago because he 'felt better' not taking it. He was diagnosed 15 years ago, been on Sinemet 13 years but never really been a great responder. Now his dyskinesia has gone but his bradykinesia is a bit worse, tremor is about the same.

I do give him lots of supplements. Don't know if something he takes may have helped. At the same time he stopped sinemet, he started taking pregnenolone so maybe that's helping.

[glenandgerry in reply to glenandgerry]

Btw had a telephone appointment with the neurologist who at first wasn't happy about Glen stopping sinemet but after talking it through, and Glen feeling better, neuro agreed he could continue not taking it.

[sue2000web in reply to glenandgerry]

Look up on YouTube Dr. Constantini and his vitamin B one protocol. I take 2000 mg of vitamin B one each day spread through the day. PT nurse didn’t think it had any benefits but said there was no harm in trying within six months I felt so much better so much more stable and all my other problems seem to have disappeared. Sadly Dr. Constantini died this summer but his work lives on. Also look up Dr. Laura Mischley who is an advocate of certain dietary changes which I’m trying at the moment with the intention that they slow the progress with the PD. I guess you have to try for the long-haul to see if that works. Good luck

[glenandgerry in reply to sue2000web]

Thanks Sue

I know about Dr C (and also Dr Mischley). Glen has been taking B1 for nearly 3 years. We’ve struggled to get the dose right as Glen is not at all in touch with his body so it’s difficult for me to know how he’s feeling. At the moment he’s taking 500mg every 3 days. That’s down from 2000mg per day at the beginning of this year.

Glen’s diet is not the best unfortunately. I try hard to get him to eat more veggies, and he is eating more now than ever before but still not enough. I try to limit his gluten, alcohol and sugar intake but he still has far too much in my opinion.......but he says he has to have some enjoyment!

[Cleo16]

healthunlocked.com/user/sil...

Not sure if I have this link right but was really helpful to me when I was struggling. Take care

[jeeves19 in reply to Cleo16]

That takes me to Silverstrov’s homepage. Is that what you meant?

[Cleo16 in reply to jeeves19]

No sorry.. I'll try again

[17Hillview]

Jeeves, at this point in my journey I became very sensitive to when my meals were taken in relation to my meds. They began competing more in my view, leading to shorter ons. Perhaps you could monitor this.

[jeeves19 in reply to 17Hillview]

I’m sure you’re right but yesterday, I ate at 2 (having fasted from 7pm the previous evening), and then took my dose of 98% Mucuna at 4. I may as well had not taken it judging by the limited relief I gained 😟. But then I’ve always found that the morning and early afternoon doses usually work far better than the late afternoon/ evening equivalent.

[17Hillview in reply to jeeves19]

In addition to the timing, I have found that the composition of the meals (lots of protein), as well as how large the meal is, affects the effectiveness of a dose.

Since increasing your levodopa dose is not an option because if the dyskinesa, you need to find ways of making it more effective. Apart from meals, can I suggest that you also research Grapefruit Juice and Green Tea extract. There is a lot of good info on this site about these, and they have helped me.

[jeeves19 in reply to 17Hillview]

Actually the Dyskinesia seems to have settled down as quickly as it arrived which I can’t explain 🤔. Just as problematic is the seeming refusal of the early evening dose 25/125 to have much of an impact on symptoms. Taken well away from food (3 hours today) but I definitely agree that meal size can impinge on efficacy 😕.

[Godiv in reply to jeeves19]

Jeeves, I get that too: morning doses of first Sinemet, then Rytary (switched) are great, and I feel lovely, but subsequent doses can be almost useless. It seems like it should be the opposite. And this happens whether or not I take a night dose before the morning does. I sincerely hope you can figure out what's going on -- I know it's frustrating and dismaying. You think you have it tamed and all is good, and then ... it all blows up :(.

[jeeves19 in reply to Godiv]

For sure. There are no winners with this awful disease sadly. When it moves on you need more drugs but then there’s dyskinesia to contend with.

[Godiv in reply to jeeves19]

I know. Sometimes when I think about it I just feel like I’m gonna lose my mind LOL. But it is what it is. It’s a challenge for sure and not a fun one or a happy one. But we seem to muddle through somehow I guess for now. Good heavens I sound depressed ha ha. Hey it’s a beautiful day, the sun’s out and that is something.

[jeeves19 in reply to Godiv]

Are you English?

[Godiv in reply to jeeves19]

I’m American. Crazy times here. How about you?

[jeeves19 in reply to Godiv]

English. I never thought an American would say ‘Good Heavens’. I was wrong!

[Godiv in reply to jeeves19]

Oh that’s funny! I truly never thought of its origins and it’s a expression I use a lot. I guess I’m culturally appropriating LOL.

[jeeves19 in reply to 17Hillview]

Thanks for all your help by the way 😊

[17Hillview in reply to jeeves19]

I am so happy to hear that the dyskenisia has abated! The one thing that is predictable about this disease is that it is unpredictable. Continued good luck to you.

[Astra7]

Not exactly planned, but on Sunday I vomited after foolishly overdoing it playing in a tennis comp that day in the heat.

The next day I realised I hadn’t taken madapor for over 16 hours, and I had no PD symptoms at all. I also hadn’t eaten.

I have managed to keep my dose down a tiny bit since then. 2 pills instead of 2 1/4!!

[jeeves19 in reply to Astra7]

Interesting 🤔

[nsofka]

I wish I could do a full fast. Right now my first dose is 5:00 PM. I start my doses in the evening and take through the night. I stop around 430 or 5 AM. Then I go through the day with nothing until 5 PM. I have tremors but I can move around so much easier without the dyskinesia. This has been working for me for a while now.I would love to discontinue for a day or two but I’m afraid I would go into severe tremor and rigidity. It seems I work best on reserves. I guess you could say this is like intermittent fasting for Parkinson’s.😊

[jeeves19 in reply to nsofka]

How interesting. Why do you choose to administer doses through the night rather than the day out of interest? Thanks

[nsofka]

So I don’t have to put up with the dyskinesia. I do have some in the morning but when it subsides I have the rest of the day to move around freely. Yes there is some tremoring but it is better than having dyskinesia. At night the C/L is stored up and I use what’s in reserve throughout the day. Anyway that’s what I have been doing for the last eight months seems to be working great.

[jeeves19 in reply to nsofka]

Did you think of this yourself or did a neuro suggest it? Interesting thinking 💭.

[nsofka in reply to jeeves19]

I kind of discovered it myself. One day I wentto visit a friend who lives an hour away from me. I was due to take my medication at 1 PM so I when I went to take it turns out I brought a completely different medication by mistake. I didn’t get home until 4 o’clock that day and I was fine. Slowly I extended it to 5:00 PM. It was a happy accident. My neurologist does know that I do this. He’s kind of perplexed but as long as I’m feeling well it’s fine. He has in the past prescribe that medication for dyskinesia. But I hate being on more than one medication. It Drastically affects my moods and energy

[gigiwillms]

I also have mild dyskinesia with my mucuna. I know it's weird, but I find it's worse if I eat too much sugar or am not well hydrated. If you're not drinking enough water, try adding a glass or two daily and see if it helps.

[jeeves19 in reply to gigiwillms]

Nice idea 💡

[CaseyInsights in reply to gigiwillms]

“I know it's weird, but I find it's worse (dyskinesia) if I eat too much sugar....” It is not weird 🤓

Sugar is a killer📌 My spouse shakes as a leaf on a windy day with too much sugar. Use a sugar substitute like mannitol, trehalose and xylitol.

And drop also, the refined carbohydrates for vegetable rich meals. It may be, because of our over consumption of sugar we need to rely on thiamine therapy.

“We have known for many years that dietary sugar precipitates thiamine deficiency” say Derrick Lonsdale MD

hormonesmatter.com/what-is-...

Are you then surprised that thiamine therapy is popular🌺

[PDGal4 in reply to CaseyInsights]

Thank you for these links. I too suffer from erratic effectiveness of Rytary & C/L. Feel myself regressing PD-wise during pandemic. Thought it had to do with less steps (no walking from parked cars into stores), but do confess to eating more sweets. Chocolate, gelato, lemon ice. I also put 2 teaspoons honey in my tea daily and sometimes add to lemon water. Is there a minimal sugar that's okay? I am going to read up on this, but welcome any input from anyone. I overall eat very well, lots of fresh vegetables and gluten-free.

[CaseyInsights in reply to PDGal4]

We just do not know how much sugar is too much as each individual biology is so different. So try the alternative sweeteners suggested - mannitol, trehalose and xylitol.

Low sugar consumption would include the exemption of refined carbohydrates (packaged foods), soda pop and packaged fruit juices from the diet. Also do note the body processes honey very much as it process glucose.

Even excess fruit sugar - watermelon, mangoes, bananas- can be too much. And there is a limit in our house on the consumption of these natural sugars. There is compliance on this matter for my spouse knows well the consequences of indulgence.

Here is a one and a half hour rant on the dangers of sugar. It’s long but has 11 million views, so why not join the crowd and take a look: Robert Lustig - Sugar The Bitter Truth

youtu.be/dBnniua6-oM(Not working as expected?)

And here is a tight short version - a distillation of Lustig’s rant: ‘Why sugar is as bad as Alcohol’

youtu.be/f_4Q9Iv7_Ao(Not working as expected?)

[CaseyInsights in reply to gigiwillms]

...and this might be a better article on ‘Thiamine Insufficiency Relative to Carbohydrate Consumption’ by Chandler Mars 🌺

hormonesmatter.com/thiamine...

[Goldencbc]

Several months ago I gradually stopped the c/l cr. I was having dyskinesia and low blood pressure that was making me feel ill. (I also gradually stopped the selegiline).I felt better for a few weeks. The dyskinesia and low blood pressure were gone. I even walked better. I felt normal. However, then my tremor became worse and I began to be very stiff and bradykinesia kicked in. I restarted the c/l cr and only take one a day now. I also restarted the selegiline at one a day. I’m doing better. I also changed neurologists. She says whatever works. She proposed taking me off selegiline and trying Nourianz but it costs a fortune. I’m still considering if I want to try that. I also started including caffeine in my diet. Overall I am feeling better. Who knows? It may not last. Good luck.

[jeeves19 in reply to Goldencbc]

Thanks for that. Good luck to you as well.😀