[GerryW]

I quit the Hinz protocol a few months ago. I did well on it for a few years but then my doctor quit employing the protocol and referred me to
Dr. Stein. Things went downhill after that. He tried to adjust my doses to get an effect longer than 3 hours but I became unstable and despite
lab tests and empirical adjustments I got severe side effects. My BP would alternately tank and I would get woozy and even fainted once then my BP would reach hypertensive crisis levels and I would feel like I was going to explode. This seemed to frustrate the doctor who seemed
to get discouraged.

Thinking my life was in danger I quit and went to the movement disorders department at a major university hospital where they put me on Sinemet.
That, too, has been problematical. Symptoms that had disappeared with the protocol, like tremors, came back strong plus I am only getting an hours worth of benefit from the Sinemet dose making me effectively house bound. Off times are much more profound than under the Hinz protocol. They are adjusting me but since they only want to see me every few months
it's slow going.

Were it not for the side effects I would probably still be on the protocol despite the expense and inconvenience but perhaps salvation
will yet be found in more pills.

Sorry to hear of the troubles. I wish you the best with whatever you decide to do next.

[Jomar]

You could be in a rebound mode due to the changes, hope it will mellow out for you.

You can't call and report problematic symptoms?
So they might adjust a dose over the phone??

[GerryW]

Thanks, Jo Mar. I am ever an optimist. I did contact the doc (not easy) and got an increased dose. We'll see how it goes.

[Niggs]

Originally Posted by GerryW

Thanks, Jo Mar. I am ever an optimist. I did contact the doc (not easy) and got an increased dose. We'll see how it goes.

Gerry,

For what it's worth this has been my experience .
Any dose adjustments, up or down, result initially in an increase in PD symptoms and worse off times.
I've been surprised recently by a swap from sinemet cr to stalevo. Even though the LEDD is the same after adjustments, for the last 3 three weeks I've been so Parkinsonian that I contacted my care team for the first time in 7 yr.
BUT, I'm just starting week 4 and Gerry things are getting much better. I'm now becoming more stable, for longer, quicker.
My neurologist has all his px' s on stalevo. (Stalevo = sinemet + entacapone).
Hang in there pal, 4-6 weeks to feel the benefit is often needed, a tough gig !
I suspect I could've been better medicated, earlier had I known this. It's only by getting angry and bull headed that I've found this out . Questions in the past have always been met with the obligatory "everyone s different" which is not strictly true. Everyone is in some ways different, but in others we are similar if not the same.

Wishing you a speedy relief to your suffering.

Nigel

[soccertese]

that's an interesting observation on stalevo niggs, i added ENTACAPONE to my 150mg- 200mg sinemet only drug regime, with the goal of getting at least 3 hours of on time but quit after 4 days because i was feeling much worse in kind of a hard to describe way, more nausea, fatigue. i did get maybe 30min. of more on time but it wasn't "quality" on time. i mentioned that i was dropping the entacapone to my neuro and he said ok, no encouragement to give it more time but i think he feels i'm ready for DBS and nothing i do in terms of adjusting drugs is going to make much difference. i might try entacapone again based on your experience. i've given up on everything else i've tried if i felt worse in the first few days. amantadine was my worse experience, couldn't sleep and had no appetite,

has DBS been brought up to you, just curious when the brits think it is time.

[soccertese]

gary, just curious what dose of sinemet your're taking and what other supps you are taking. have you stopped taking the supps for awhile as a test? there could be amino acids in them that aren't listed that might be interfering with your l-dopa absorption.

also, i doubt any neuro would object to your adding .25mg of sinemet at a time to find out if a higher dose would give you more on time and/or better tremor relief, it wouldn't take long to try that without any damage going back down. i've read that over 250mg really isn't going to help, and once you get to 250mg don't go higher , shorten the intervals which in your case couldn't. can you tolerate an agonist? from what i've read on boards, generic requipxl works well for some, others can't tolerate the generic but recently on the NPF ask the pharmacist board there was discussion by someone who did well on brand name requipxl, had to switch to generic, didn't do well but by chance got the rx filled at another pharmacy that gave him/her a different generic and she did better.

seems like a lot of the brits who post here are on generic requipxl.

bottom line, nothing to lose and you need to be able to exercise imho and stay in shape for when the "cure" arrives.

[Niggs]

Originally Posted by soccertese

that's an interesting observation on stalevo niggs, i added ENTACAPONE to my 150mg- 200mg sinemet only drug regime, with the goal of getting at least 3 hours of on time but quit after 4 days because i was feeling much worse in kind of a hard to describe way, more nausea, fatigue. i did get maybe 30min. of more on time but it wasn't "quality" on time. i mentioned that i was dropping the entacapone to my neuro and he said ok, no encouragement to give it more time but i think he feels i'm ready for DBS and nothing i do in terms of adjusting drugs is going to make much difference. i might try entacapone again based on your experience. i've given up on everything else i've tried if i felt worse in the first few days. amantadine was my worse experience, couldn't sleep and had no appetite,

has DBS been brought up to you, just curious when the brits think it is time.

Hi Soccertese

No mention of D.B.S, I think it's very much a last resort here in the UK. I'm in two minds re my Neuro, whether he's mad or a genius ! I pushed the care team to give a ball park figure for this latest adjustment. Guess what, they have a rule of thumb system which for introducing entacapone is give it a minimum of 4-6 weeks before they can say yes/no.
It is hard going mate but personally I would rather tough it out for 6 weeks than face surgery that has it's own problems.
Just as a point of interest, I have had, like you significant side effects with ropinirole. I now know it takes me two months + to settle a requip xl adj, generic are to be avoided and most of that time I'm feeling 'more' parkinsonian and constantly saying "this can't be right". But I'm wrong and now I'm actually getting somewhere.
Finally, I'm 7y post diagnosis and on 150mg 3 x daily + 12mg requip xl. I asked about lower more frequent dosing and was told not needed,hence mad or genius.
So far he's right and I'm so glad I weathered the storm.

Nigel

[Niggs]

Originally Posted by Niggs

Hi Soccertese

No mention of D.B.S, I think it's very much a last resort here in the UK. I'm in two minds re my Neuro, whether he's mad or a genius ! I pushed the care team to give a ball park figure for this latest adjustment. Guess what, they have a rule of thumb system which for introducing entacapone is give it a minimum of 4-6 weeks before they can say yes/no.
It is hard going mate but personally I would rather tough it out for 6 weeks than face surgery that has it's own problems.
Just as a point of interest, I have had, like you significant side effects with ropinirole. I now know it takes me two months + to settle a requip xl adj, generic are to be avoided and most of that time I'm feeling 'more' parkinsonian and constantly saying "this can't be right". But I'm wrong and now I'm actually getting somewhere.
Finally, I'm 7y post diagnosis and on 150mg 3 x daily + 12mg requip xl. I asked about lower more frequent dosing and was told not needed,hence mad or genius.
So far he's right and I'm so glad I weathered the storm.

Nigel

Just as an example, three weeks ago I was on 3x 200 mg sinemet cr as my l.dopa element. 'On time' all over the place. My own 'tap test' is whether I can wash my hair using my left hand and whether I can pull the quilt over with fluidity.
I was put on Stalevo 150mg x3, accounting for the bioavailability of sinemet cr (70 - 75%) Within 3-4 days I'd lost the ability to wash my hair with the left hand and was 'unable !' to pull the quilt over.
Now, starting week four both the previous are back, I've set up a punch bag and weights and started training at long last. My 7.30 stalevo is now starting to kick in by 9.00am, 8.00am this morning and that lasts until 12.30pm.
The last three days, though an effort and a bit twitchy, I've been able to cook the family dinner when I'm up at 3.00 am.
It's not there yet but I'm impressed and hopeful now.

Nigel

[engsec]

Originally Posted by GerryW

I quit the Hinz protocol a few months ago. I did well on it for a few years but then my doctor quit employing the protocol and referred me to
Dr. Stein. Things went downhill after that. He tried to adjust my doses to get an effect longer than 3 hours but I became unstable and despite
lab tests and empirical adjustments I got severe side effects. My BP would alternately tank and I would get woozy and even fainted once then my BP would reach hypertensive crisis levels and I would feel like I was going to explode. This seemed to frustrate the doctor who seemed
to get discouraged.

Thinking my life was in danger I quit and went to the movement disorders department at a major university hospital where they put me on Sinemet.
That, too, has been problematical. Symptoms that had disappeared with the protocol, like tremors, came back strong plus I am only getting an hours worth of benefit from the Sinemet dose making me effectively house bound. Off times are much more profound than under the Hinz protocol. They are adjusting me but since they only want to see me every few months
it's slow going.

Were it not for the side effects I would probably still be on the protocol despite the expense and inconvenience but perhaps salvation
will yet be found in more pills.

Dear GerryW ,
I am intrested in to know what changes does Dr. Stein did on doses of l-dopa/tyrosine/5-htp ? As i read your posts befor , you was on about 8 grams of l-dopa and one 5-htp (37.5 mg) and about 30 grams of tyrosine .
I am trying this protocol on my father and its very important for me to know about this . Coz my father have exactly BP problem like you report . Thx