My profound experience with levodopa/carbidopa (Sinemet)

[zukov]

You're absolutely right Visual, for that reason i dont trust in the usually prescribed meds to the brain. Is a big enigma.

Off the record, i researched this morning some information about the interaction between the sinemet and alcohol \dont punish me!\ i believe someone of you want to drink one beer sometime, and i found this answer at this web http://gofree.indigo.ie/~pdpals2/answer13.htm [obviusly 40 pints a week is insane¬

Question posted April 25, 2002

Hello Sir

My father developed a shake in his hand in January of 2001 and has been diagonised with Parkinson's disease. He just finished a six month course of the drug Artane. As this had no noticeably positive effect he has been switched to the drug Sinemet.

The problem is he also consumes in excess of forty pints of alcohol a week as well as maybe 10-15 Solpadeine painkillers.

My question is: will this level of alcohol consumption have a negative effect on the ability of the Sinemet drug to be effective?

Thanks a million in advance. Answer posted July 3 2002

My apologies for the delay in replying.

Over 40 pints/week is excessive for anyone and should be decreased. Alcohol does not interact with Sinemet directly but may interfere with Sinemet absorption from the belly because of irregular meals. (Protein competes with Sinemet for absorption)

Secondly alcohol has an effect on brain function and balance over time and should be curtailed in patients with PD.

T. Ly

[VisualDude]

Nice post. 40 pints a week over time will damage the cerebellum which contains 1/2 of all the neurons in the brain.

Noticed on the PD forums and with brain injury people that it is important to drink only modestly if at all. Actually, keeping your body in good shape is important to prevent progression of disorders.

[zukov]

Sure, i only post that in 'order' to a reference, if sinemet helps me, i dont run to next bar and start drinking to dead

Rigth now im reading a great book of Parkinson Disease (my office is very quiet today ) and later i will post some fragments of the book about the sinement and alcohol, and weed treatment for PD (wtf?)

[mbellamy09]

hey guys what research and stuff do you think gives me the best chance to get sinemet prescribed? i really dont know where to start lol. thanks in advance.

[1998]

Same here Mbellamy. I have an appointment with a Neurologist in 3 weeks. I have never seen him before and I need to bring the best sinemet information for hppd. Anything professional looking with strong evidence that you'd bring to a Doctor for Sinemet could you please post. I'm normally good at finding this sort of information, but all I'm seeing are individual post's not any criteria. Will somebody pls help me, I've suffered for almost 15yrs w/ hppd I need a fucking break from this hell. Thanx soooo much if any of you are able to find a good print out for me. I'll even send you money (Dead serious) I'll do anything at this point.

[Phenomenon]

I´m fortunate to have a neuro who trust me regarding this. But I´ll still bring him some stuff.

The Gaba-Dopamine-5TH Hypothesis from David. Not even sure if this supports use of Sinemet but since my doc i Swedish I don´t think he will understand the whole text anyway, hehe.

http://hppdonline.co...5ht-hypothesis/

A quote from Dr. David Nichols wich David posted somewhere. I don´t think the original article works.

The current standard treatment for the symptoms of visual disturbances and associated anxiety with HPPD is clonazepam. Clonazepam is effective at reducing symptoms and in many cases prescribed for long periods. In some HPPD cases, individuals are unable to drive at night or distinguish stars from visual static without the use of clonazepam. However, the potential for dependence and abuse is a concern if the patient has a history of substance abuse, but HPPD alone does not necessitate a diagnosis of substance abuse. Individuals with HPPD can be strongly adverse to new psychotheraputics and resist medication treatment. The discovery of a therapy providing the same type of amplification of the inhibitory transmitter GABA, as exists with clonazepam, but without dependence could be a breakthrough for this population.Areas including increasing dopamine in the ventral tegmentum, which projects to the limbic system, is one area to consider increasing inhibition in the system. The limbic system is strongly associated with lasting effects from trauma and the processing of visual information.

Plus some info about Abrahams trial and lots of quotes from people who have had success. I will also have tried the medication before I meet him so I´ll be able to share my experience.

[mbellamy09]

those two i think will help especially the last one and underline lol. on a side not does this help anyone memory wise? or to early to know?

btw thanks

[Fred_from_Jupiter]

hello merkan, asking you second time: how much klonopin do you medicate with sinemet together?

[Merkan]

1.5mg, 0.5mg*3/daily.

I just made a cut from 2.25mg so i am still a bit shaky but things are getting better. I need a couple of weeks to know if i am just as good with this dose.

hello merkan, asking you second time: how much klonopin do you medicate with sinemet together?

[Fred_from_Jupiter]

hmmm, i staying since years on 1mg in the morning, even now sinemet. i wanna try in some weeks to go down to 0.5mg/day, depending how sinemet will be working for the next time. ......but it looks real good till now.

[VisualDude]

Same here Mbellamy. I have an appointment with a Neurologist in 3 weeks. I have never seen him before and I need to bring the best sinemet information for hppd. Anything professional looking with strong evidence that you'd bring to a Doctor for Sinemet could you please post. I'm normally good at finding this sort of information, but all I'm seeing are individual post's not any criteria. Will somebody pls help me, I've suffered for almost 15yrs w/ hppd I need a fucking break from this hell. Thanx soooo much if any of you are able to find a good print out for me. I'll even send you money (Dead serious) I'll do anything at this point.

Keep your money … lets see if the forum as a team can come up with some things that might help in working with a doctors.

I’ve looked up many topics including brain injuries. But some of the best information is found when specifying PD in a search. Google parkinson's visual dysfunction

http://brain.oxfordj...10/6/1675.short "These data suggest that not only is the visual system affected in PD, but that dopamine may have an essential role in receptive field organization in human vision"

http://www.neurology...5/12/1907.short "Impairments in visual attention and spatial perception predicted worse cognitive function. Worse performances on tests of visual speed of processing and attention, spatial and motion perception, visual construction, and executive functions … Patients with mild to moderate Parkinson disease showed impaired visual perception and cognition compared with elderly control subjects. Visual dysfunction contributes to parkinsonian disability through its influences on cognition and locomotion"

http://jnnp.bmj.com/.../4/419.abstract "…impairment of visual cognition …"

http://www.sciencedi...01346949290051I "the effects observed after therapy confirm that abnormal contrast response functions in PD patients are linked to dopaminergic deficiency."

http://onlinelibrary...090510/abstract "We conclude that the dopaminergic deficit of retinal amacrine cells in Parkinson patients can be monitored by combined low-contrast and motion (displacement) stimuli"

http://www.sciencedi...353802003000221 "Visuo-cognitive impairment is prevalent in PD"

http://www.sciencedi...474442209700687 "The role of dopaminergic drugs in treating the various non-motor problems of PD, although clinically recognised, has received little attention. In this Review, we investigate the dopaminergic basis of the range of non-motor symptoms that occur in PD such as depression, apathy, sleep disorders (including rapid-eye movement sleep behaviour disorder), and erectile dysfunction. We discuss the evidence that these symptoms are treatable, at least in part, with various dopaminergic strategies …"

One problem is that you need to purchase most articles - $$$ that few of us have. But at least the abstracts show a connection between dopamine and visual problems (and others) that many HPPD suffers have.

It might help at this point if you quickly list your main HPPD/health symptoms.

From this we might be able to hone-in on some approaches to use with your doctors. As an example, you mention pain and spasms in other places ... unless these are from a known injury, they may be dopamine related. [For me, visual symptoms of PD worked as a start. Once results were in, it quickly grew into acceptance with medical professionals, though now it is spoken in terms of encephalopathy affecting dopamine systems.]

[shaolinbomber]

1998,

Any reasonable doctor should be willing to work with you considering the dose needed to help HPPD and DP/Dr with Sinemet isn't that much. Plus there is always the fact that this medication has the potential to totally bring you back into reality and that in and of itself should be enough for your phsyician to want to help you with this.

I mean i've been on it for 2 weeks now and I have breakthrough days every 3-4 days or so where I feel better and better and more and more like myself.

[zukov]

In the book of PD im reading says similar things like Visual post. In this website http://knol.google.com/k/los-trastornos-visuales-en-la-enfermedad-de-parkinson (in spanish) i found this:

"Las alucinaciones visuales son comunes en la enfermedad de Parkinson, y ocurren en el 25 al 40% de los pacientes(14). Normalmente, el paciente tiene la sensación de que otra persona está presente cuando no es así, o describe la sensación de una persona o un animal en movimiento más allá de la periferia de su campo visual."

In english, says somethin like: The visual alucinations are very common in PD in the 25%-40% of the pacients. Normally, the pacient have the feeling of someone person is there when it isnt', o he describes the feeling of a person or animal/object beyond his peripherial field of vision"

Also, says l-dopa helps the disturbings visual, but the mechanism is not too clear.

[1998]

Thanks guys for the help!! I"m not thinking to clearly right now but all the links I read were related to Parkinson disease. I need to bring the hppd criteria and something saying that Sinemet is under trials helping some ppl with hppd. Since I don't know this doc. yet, it would be so much easier showing him then trying to explain something I don't even understand. Maybe I'll just go on microsoft word and make my own Sinemet/hppd trial page and I'll sign experimental studies conducted by MD. 1998 lol.

[balance]

Keep your money … lets see if the forum as a team can come up with some things that might help in working with a doctors.

I’ve looked up many topics including brain injuries. But some of the best information is found when specifying PD in a search. Google parkinson's visual dysfunction

http://brain.oxfordj...10/6/1675.short "These data suggest that not only is the visual system affected in PD, but that dopamine may have an essential role in receptive field organization in human vision"

http://www.neurology...5/12/1907.short "Impairments in visual attention and spatial perception predicted worse cognitive function. Worse performances on tests of visual speed of processing and attention, spatial and motion perception, visual construction, and executive functions … Patients with mild to moderate Parkinson disease showed impaired visual perception and cognition compared with elderly control subjects. Visual dysfunction contributes to parkinsonian disability through its influences on cognition and locomotion"

http://jnnp.bmj.com/.../4/419.abstract "…impairment of visual cognition …"

http://www.sciencedi...01346949290051I "the effects observed after therapy confirm that abnormal contrast response functions in PD patients are linked to dopaminergic deficiency."

http://onlinelibrary...090510/abstract "We conclude that the dopaminergic deficit of retinal amacrine cells in Parkinson patients can be monitored by combined low-contrast and motion (displacement) stimuli"

http://www.sciencedi...353802003000221 "Visuo-cognitive impairment is prevalent in PD"

http://www.sciencedi...474442209700687 "The role of dopaminergic drugs in treating the various non-motor problems of PD, although clinically recognised, has received little attention. In this Review, we investigate the dopaminergic basis of the range of non-motor symptoms that occur in PD such as depression, apathy, sleep disorders (including rapid-eye movement sleep behaviour disorder), and erectile dysfunction. We discuss the evidence that these symptoms are treatable, at least in part, with various dopaminergic strategies …"

One problem is that you need to purchase most articles - $$$ that few of us have. But at least the abstracts show a connection between dopamine and visual problems (and others) that many HPPD suffers have.

It might help at this point if you quickly list your main HPPD/health symptoms.

From this we might be able to hone-in on some approaches to use with your doctors. As an example, you mention pain and spasms in other places ... unless these are from a known injury, they may be dopamine related. [For me, visual symptoms of PD worked as a start. Once results were in, it quickly grew into acceptance with medical professionals, though now it is spoken in terms of encephalopathy affecting dopamine systems.]

This is very good, thank you very much for posting these links. This is some groundbreaking stuff!

Thanks guys for the help!! I"m not thinking to clearly right now but all the links I read were related to Parkinson disease. I need to bring the hppd criteria and something saying that Sinemet is under trials helping some ppl with hppd. Since I don't know this doc. yet, it would be so much easier showing him then trying to explain something I don't even understand. Maybe I'll just go on microsoft word and make my own Sinemet/hppd trial page and I'll sign experimental studies conducted by MD. 1998 lol.

Be careful, I think you should just go in and seem as if you are pretty cluey about what's going on, you could get in trouble faking studies like that. There has been plenty of information about this drug, just be comprehensive about it, it really just depends on finding a good neurologist, which does suck, but such is life.

[shaolinbomber]

Thanks guys for the help!! I"m not thinking to clearly right now but all the links I read were related to Parkinson disease. I need to bring the hppd criteria and something saying that Sinemet is under trials helping some ppl with hppd. Since I don't know this doc. yet, it would be so much easier showing him then trying to explain something I don't even understand. Maybe I'll just go on microsoft word and make my own Sinemet/hppd trial page and I'll sign experimental studies conducted by MD. 1998 lol.

I printed off the threads from this site of the other members that were trialing the drug and were reporting a lot of success with it. As long as this guy isn't a complete asshole I think he will understand. Sinemet isn't an abusable scheduled drug and it's not used to get high so I can't see a reason why he wouldn't be willing to try you on it.

[1998]

I didn't even think of doing that. My doc. gave me so much vicodin to take the last two weeks (around 50 mg. daily) I wasn't thinking clearly through wd's and I'm finally feeling a bit better . I'll do that same thing. Thanx again!!

[Guest]

Update?

[Merkan]

So there has been a bit more then 6 months since i started this. I take 200mg/day divided into four doses (12.5/50 pills). Initially i took three pills but when i tried to take 4 pills the last 2 months i am at the top of my game. I do not have any symptoms and i used to have them all severe (HPPD/DP/DR). My new best friend is the pill jar and the fact that i got 50mg:s prescribed instead of cutting those 100:s

Now i follow whatever research there is and hopefully there'll be something more long term but for now HPPD only bothers me when i catch a cold or something. Might just move to somewhere warm and get some year-around sun.

[VisualDude]

Great.

Have you been able to reduce either Klonopin or Keppra?

[Merkan]

I haven't touched them really. Thing is i just got HPPD on paper and there will be massive testing. My neuro wants me to do all the testa to exclude differentials as well as looking for possible clinical evidence for HPPD. She didn't wanna change anything unless there is a "plan" and i agree.

[Guest]

i dont get how the trial was a super success but my script of 10/100 3x per day didnt make a dent in my hppd...

[Merkan]

Hope>>

Do you mean that the trial of 10/100 X3 didn't do anything or did you have success during the trial but not with sinemet? In the last case you might wanna look up what was in the trial. I am interested if that is the case.