[lurkingforacure]

We have talked through the years about this and been laughed out of one neuro's office when we asked about snorting sinemet...but really, here is a product that nasally delivers the precursors to dopamine (not levodopa itself, which I understand burns the skin and that is why they have not come out with a patch yet):

DopaFlo by Apex Energetics

You can also get AcetylFlo, SerotaFlo, and GabaFlo...

Anyone heard of these or tried any of them? I have to order it but before I did, thought I'd ask.

[moondaughter]

Originally Posted by lurkingforacure

We have talked through the years about this and been laughed out of one neuro's office when we asked about snorting sinemet...but really, here is a product that nasally delivers the precursors to dopamine (not levodopa itself, which I understand burns the skin and that is why they have not come out with a patch yet):

DopaFlo by Apex Energetics

You can also get AcetylFlo, SerotaFlo, and GabaFlo...

Anyone heard of these or tried any of them? I have to order it but before I did, thought I'd ask.

Thanks for this Lrkrfrcr - I really appreciate posts that share product information as they can be really helpful .

snorting sunshine and bird songs today

[soccertese]

lurking,
another problem with developing a levodopa patch is it's hard to transfer even 100mg of anything thru the skin and with sinemet your're going to need a lot more than that.

i recently read a blog where a number of people trying the neupro patch which holds 2,4,6mg and higher doses of requip and nobody raved about it, most complained about itching and having to find a different place to put the patch. not saying it doesn't work for some people.

inhaling sinemet - from my understanding, less than 5% of l-dopa actually reaches the brain, a lot gets converted to dopamine in the stomach, ends up in peripheral cells and also gets converted, so i assume you would have to snort a very small amount of l-dopa or they'd have to develop a special formulation that slowly broke down in the blood?


imho the goal is to try to keep the amount of dopamine or agonist constant in the brain and snorting might be fine for "rescue" if a safe formulation is ever developed. duodopa seems to have achieved that goal but is still terrifically expensive but it does seem to eliminate dyskinesias.

doesn't a single egg have much more than a week's worth of l-dopa precursors? just playing devil's advocate. and if the cells that convert tyrosine to dopamine are dead/not functioning, what then? all the precursors in the world won't help.

[lurkingforacure]

Originally Posted by soccertese

lurking,
another problem with developing a levodopa patch is it's hard to transfer even 100mg of anything thru the skin and with sinemet your're going to need a lot more than that.

i recently read a blog where a number of people trying the neupro patch which holds 2,4,6mg and higher doses of requip and nobody raved about it, most complained about itching and having to find a different place to put the patch. not saying it doesn't work for some people.

inhaling sinemet - from my understanding, less than 5% of l-dopa actually reaches the brain, a lot gets converted to dopamine in the stomach, ends up in peripheral cells and also gets converted, so i assume you would have to snort a very small amount of l-dopa or they'd have to develop a special formulation that slowly broke down in the blood?


imho the goal is to try to keep the amount of dopamine or agonist constant in the brain and snorting might be fine for "rescue" if a safe formulation is ever developed. duodopa seems to have achieved that goal but is still terrifically expensive but it does seem to eliminate dyskinesias.

doesn't a single egg have much more than a week's worth of l-dopa precursors? just playing devil's advocate. and if the cells that convert tyrosine to dopamine are dead/not functioning, what then? all the precursors in the world won't help.

I realize the problem with the precursors, and amount needed, etc., but what this might offer is a solution for those who cannot eat much of anything all day long because of extreme interference with sinemet. If this worked, it would allow such pwp to eat during the day, which is one of the huge advantages of duodopa.

BTW, mucuna does allow you to eat and still hits, so that's one option, just not a great one, for the reasons we've all talked about here. But at our last neuro appt., our neuro was very interested in mucuna, which he had never heard of (how is that even possible? he's a PD guy!) He wants to have something to offer his patients when they get "off" and are waiting to get back "on. I was touched that he was willing to even mention this to his other patients, out of compassion for them and in a sincere effort to help. Nice.

[kukai8]

Originally Posted by lurkingforacure

I realize the problem with the precursors, and amount needed, etc., but what this might offer is a solution for those who cannot eat much of anything all day long because of extreme interference with sinemet. If this worked, it would allow such pwp to eat during the day, which is one of the huge advantages of duodopa.

BTW, mucuna does allow you to eat and still hits, so that's one option, just not a great one, for the reasons we've all talked about here. But at our last neuro appt., our neuro was very interested in mucuna, which he had never heard of (how is that even possible? he's a PD guy!) He wants to have something to offer his patients when they get "off" and are waiting to get back "on. I was touched that he was willing to even mention this to his other patients, out of compassion for them and in a sincere effort to help. Nice.

Why do "we" consider mucuna not to be a "great option". What are its perceived defects? It seems to me to be effective. Am I wasting my time?

[Nan Cyclist]

I've been using the Neupro patch 4 mg for a month and a half now. It has completely eliminated the nausea that I used to have for four-six hours a day using Requip XL. I have had no problem with itchiness or rashes or anything of the sort. I just alternate left right shoulder thigh butt and I don't seem to be developing any problem with the skin. I have noticed a slight increase in my tremor, which is annoying, but nowhere near as annoying as the former nausea. I have also just begun a research study of galantamine, which will last for three months. I'm finding that I'm a little bit more jumpy, but I've only been on it for two days so the jury is out.

[lurkingforacure]

Originally Posted by kukai8

Why do "we" consider mucuna not to be a "great option". What are its perceived defects? It seems to me to be effective. Am I wasting my time?

You can get more detail from doing a search here on the forum, but basically mucuna hits very fast, which is great, but it also dissipates just as fast, which could leave one in a real bind depending on where you are and what you are doing. This is not insignificant.

But, we find that it smooths things out, so that by the time mucuna is wearing off, the sinemet is kicking in (on a good day, actually kinda rare, unfortunately).

There is also some stomach ache associated with it, mild, but still. A search will give you more info.

[reverett123]

Mucuna has been talked about so much here that it has lost some of its charm. Perhaps we sould try to reclaim it. It is ideal in many ways.

Also, a little publicity can do wonders for the efforts. There seems to be some real reluctence among PWP to get down and fight from the gutter. We need to get over that and get our story out. After all, we have a unique product and selling it should be a piece of cake.

I think that it (Mucana) can be used effectively and reliably to induce a quicker "ON" and to overcome a standard "OFF" but only for a short time. That is not necessarily bad. If nothing else, it keeps you from getting sloppy. We learned earlier in the discussions that there was something there and we have done a decent job of drawing its boundaries. This will be clearer with time.

So, fast forward to today and look at what we have wrought. We have determined that mucuna saves each of us an average of thirty minutes each mornng due to its routine time to "ON" of thirty as well. And we still remember the additional thirty minutes that comes after that first one. Now to clear this up and to summarize our temporary findings, let's imagine the Power of the Press working at our side in breaking this story to the world:

1- I wake up all groggy and I want to greet the day like I want to greet the snapping turtle in my back yard. But I use a small shaker with a pre-measured dose of mucuna and maybe a little instant coffee to make that wonderful concoction by shaking vigorously. (Insert Parkie joke here.) Then I toss it down, turn over, and go back to sleep for another 30 minutes. Actually you should notice that you have used no time up to this point! You have become a "Time Lord!" Is that cool or what?!

2- Actually, you simply down the magic potion and this is where you play the press. The Press are alright so long as you feed them regularly. But they need a story on a regular basis. If you don't have one for them then things can get ugly rather quickly. Luckily you have several for them and they are titillating. (Heck, a typical cub reporter can write a full page on the word "titillating' itself just because it sounds "naughty.")

3- So, it is early morning - that wonderfully warm and soft part of the day. Reporter writes, "A sultry sunbeam, although not quite awake itself, caresses the lingerie hanging by the door. Now, we all know that Osh Kosh doesn't make lingerie, but this is how you work the press. It gets messy but lives are at stake.

4- Now the reporter is beginning to "engage" as he/she remembers about the drugs we PWP take. The ones that make bull elephants cower. Those "agonies" or something like that that makes you lose all control. But, just as this member of the Fourth Estate starts a major nostril flare, you drop the bomb. You casually explain that this new drug that he has come to write about comes out of the steamy jungles and is a scientifically proven "afrodeeziack". Careful, most reporters have a small cardiac event about this time as they mutter "Pulitzer" over and over to themselves.

Hopefully you get the idea and the power that can be brought to bear here. Handled by a professional the Press could be persuaded to write that president O'Bama isn't really Irish!

I will leave you with two thoughts-
1) We have a very powerful hand if we decide to play. That is we can command an unusual amount of media power, and
2) You people really shouldn't allow me to post after 9:00 PM.

[soccertese]

i think the mucana message here is very muddled. i've tried it off and on and noticed little affect. i've tried a teaspoonful of raw mucana with oatmeal a few times and capsules that say they have a 100mg l-dopa equivalent. admittedly a very meager effort.