Shaolinbomber - Sinemet

[shaolinbomber]

So i've started taking Sinemet and it has helped me a lot. It fixes the dissociation completely while the drug is active and it also lessens the severity of some of the visuals I have like prolonged afterimages and floaters.

I went to my PCP and brought him printouts of this thread showing that other people were having success with Sinemet in treating their HPPD so he agreed to start me out low and see how I did on it.

I'll put up an update post here in a few days to tell how it's going then.

[zukov]

Like i post in the jay 1 trial, i will try sinemet and report any change on me.

Best wishes.

[VisualDude]

Interesting that it helps dissociation for you. This is what Merkan says. For me, there has been no change in DR, though the DR is mild.

How much Sinemet are you taking right now?

Also, are you taking any other medication?

[shaolinbomber]

Interesting that it helps dissociation for you. This is what Merkan says. For me, there has been no change in DR, though the DR is mild.

How much Sinemet are you taking right now?

Also, are you taking any other medication?

I take the same dose as Jay does x3 daily. I also take Tramadol 50mg as needed for headaches. Usually equaling to about 200-300mg a day.

[1998]

I'm getting on this med asap. I can't believe how much it's helped Merkan and others are feeling the same effects. I feel like screaming for joy......I hope this med just does half of what it's done for you guys. I'll be able to actually live again, I'm flipping out right now but so scared it might not work for me...congrats.....pls keep me updated daily for everybodies sake. This is the biggest breakthrough drug I've read about so far in treating hppd. Wow GOD help me pls

[balance]

I am going to get my self prescribed this, not going to get my hopes up but this sounds pretty good so far, 3 good reports is usually a good thing.

I'm also liking the fact it can be something you can be on for life, not that I would want to but I need something to get my life back together, failed relationships, no job and drug abuse are really starting to take toll. Updates from all involved with this drug would be very appreciated.

My anxiety is my worse symptom, has it any effect on that?

[VisualDude]

I take the same dose as Jay does x3 daily. I also take Tramadol 50mg as needed for headaches. Usually equaling to about 200-300mg a day.

That’s a lot of Tramadol. I use it too but more often Hydrocodone. Both reduce contrast just a little.

Do you notice any changes in headaches since Wednesday?

Any changes in muscular pains?

My anxiety is my worse symptom, has it any effect on that?

I have very bad anxiety. Sinemet cuts it about 75%.

I'm flipping out right now but so scared it might not work for me

It is understandable – dashed hopes are painful to the point of not wanting to try things again. Whether it will help you depends both on your particular self and the types of symptoms you experience.

A key point about using Sinemet – it fuels dopaminergic neuro-circuits. These circuits are ‘automatic adjustment’ in nature. When dopamine is too low, they get stuck. So, visual acuity, contrast, depth perception, halos, motivation and even anxiety (Amygdala) are some of the most likely to respond.

More complex issues such as flashbacks and seeing geometric patterns are less likely to respond – but it going to take trying to know. I should probably post more about these different categories.

The important thing is to not give up. Happily DA are pretty safe to take. Do you have a post somewhere listing your symptoms?

[shaolinbomber]

I take the same dose as Jay does x3 daily. I also take Tramadol 50mg as needed for headaches. Usually equaling to about 200-300mg a day.

That’s a lot of Tramadol. I use it too but more often Hydrocodone. Both reduce contrast just a little.

Do you notice any changes in headaches since Wednesday?

Any changes in muscular pains?

My anxiety is my worse symptom, has it any effect on that?

I have very bad anxiety. Sinemet cuts it about 75%.

I'm flipping out right now but so scared it might not work for me

It is understandable – dashed hopes are painful to the point of not wanting to try things again. Whether it will help you depends both on your particular self and the types of symptoms you experience.

A key point about using Sinemet – it fuels dopaminergic neuro-circuits. These circuits are ‘automatic adjustment’ in nature. When dopamine is too low, they get stuck. So, visual acuity, contrast, depth perception, halos, motivation and even anxiety (Amygdala) are some of the most likely to respond.

More complex issues such as flashbacks and seeing geometric patterns are less likely to respond – but it going to take trying to know. I should probably post more about these different categories.

The important thing is to not give up. Happily DA are pretty safe to take. Do you have a post somewhere listing your symptoms?

It mainly helps my dissociation the most. It's also great for afterimages but most of the other visual symptoms remain.

To be honest, I take Tramadol as a substitute for the pills I used to buy illegaly. If im going to be taking something it might as well be a prescription even though it doesn't stack up against the more powerful painkillers. It works nonetheless.

[Merkan]

Shaolin, have you tried keppra and how did you react? What is interesting is that most people who respond to keppra seems to respond well to sinemet. I agree with the afterimages. But with keppra my visual snow goes away aswell. However i have not A/B tested, with and without keppra due to my recent cuts in klonopin

[John Smith]

shaolin how does tramadol work for you? it makes my shit a lot worse

[shaolinbomber]

Shaolin, have you tried keppra and how did you react? What is interesting is that most people who respond to keppra seems to respond well to sinemet. I agree with the afterimages. But with keppra my visual snow goes away aswell. However i have not A/B tested, with and without keppra due to my recent cuts in klonopin

Keppra did absolutely nothing for me. I think I convinced myself that it worked when I first started but realistically it was doing nothing.

[shaolinbomber]

shaolin how does tramadol work for you? it makes my shit a lot worse

My bane is opiates i am afraid. I would take an opiate even if it made my HPPD worse because I love the state of mind they put me in. It kind of sucks because I never touched painkillers before I developed HPPD. I guess it's an acquired taste but it's a taste I could definately live without. It's too late for that at this point though now.

But one of the great things about kicking the DP/DR with Sinemet is that I think about them A LOT less now because I mostly used them to escape. I can honestly say though that i've picked up an addiction that will probably be with me for the rest of my life.

[shaolinbomber]

But I wanted to add that I took doulbe my dose this morning and I must say that I am feeling great. Very emotional right now too because I feel like a human being again. It's hard to think about the hole that DP/Dr throws you into and when you're in it it feels like you'll never be normal again but I think the successful treatment with Sinemet proves that this problem is strictly having to do with neurotransmitter/neuronal circuits not functioning correctly.

[VisualDude]

neurotransmitter/neuronal circuits not functioning correctly - describes HPPD and a whole bunch of disorders.

By the way, it is best to stay below 3 pills (25/100mg) a day - though it can be taken up to 4 pills. PD people have to use other formulations to take more (up to 10 pills)

[1998]

I won't be able to get this Sinemet threw my regular doctor. What kind of doc do I need to see. Plus this is an off label use for the med. I need some reliable information to hand a doctor before they hand this med out. Also is it Expensive$$$$?????? (I have United Healthcare)

Thank's in advance to anybody willing to answer. Work is beating the shit out of me time for bed....

[VisualDude]

Usually Neurologist are the ones that deal with Sinemet. In the USA, the FDA's approved use is Parkinson's Disease or Parkinsonism. Some doctors will off-label it for other things such as RLS.

Perhaps an angle to discuss is 'Parkinsonism w/o motor symptoms'. That is, (whether you believe this terminology or not) you have a mild brain injury affecting dopamine pathways in higher cognitive function. This is the angle I've used - though I do have an 'official' brain injury diagnosis.

If you have RLS, then throw that one out as well.

Neurologist are odd fellows. Most do expensive tests to tell you what you don't have and then they do nothing. If you can find a doctor who treats brain injuries or who is involved in research, it might work out better for you.

As for cost, the Generic is around $90 for 90 pills. But I've got it as low as $32. And 90 pills last 2-3 months.

What are your visual symptoms?

Do you have any body symptoms?

[shaolinbomber]

I won't be able to get this Sinemet threw my regular doctor. What kind of doc do I need to see. Plus this is an off label use for the med. I need some reliable information to hand a doctor before they hand this med out. Also is it Expensive$$$$?????? (I have United Healthcare)

Thank's in advance to anybody willing to answer. Work is beating the shit out of me time for bed....

I was able to get it through my Primary Care Physician. I think he sympathized a bit with me because I got off klonopin when I first started to see him.

I printed out some threads from this site showing how other people have had success treating their symptoms with Sinemet. Maybe print a thread or two out from here and show him the conversations?

[1998]

Thanks guys, I think I'll print out the most professional looking threads and bring it to a nuero or pychiatrist.

''What are your visual symptoms?

Do you have any body symptoms? '' Everything you read about hppd I have it. I think having panic anxiety disorder prior to hppd has made anxiety even worse therefore all the symptoms as well. I don't care about the visuals at this point, I just want my old personality back. Even w/ Simenet if it did work, I would have to get all the way off klonopin first and find out where I'm at.

I read the other day on a Simenet thread that after 5 yrs of use it usually stops working for parkisons and nobody knows why.

Since ppl here are using it for hppd hopefully that wont happen. Thanx for your responses.

Shaolin, I also take 300-400mg of tramadol daily for headaches and body pain. If I wasn't working such a physically demading job I would settle w/ only soma, but tramadol gives me energy and makes me feel good. Be careful about trying to get fucked up on it, I have in the past and you can get some kind of seratonin syndrome. 400mg is the max a day, I'm sure you know all this but just in case. Later all!

[VisualDude]

There are people with PD on Sinemet for decades. Some even have the progression of thier disease virtually stopped. Early treatment is an important factor, as is general health.

There are others where it advances rapidly. The 5 year effect for these is basically that the dopaminergic neurons are so shot that more is needed. And there is little more to offer. At this point they start taking COMT inhibitors http://en.wikipedia..../COMT_inhibitor. Also, brain surgeries and electrodes. If you read about Michael J Fox you can learn about advanced PD - nasty stuff.

It is common for meds to loose effectiveness over time. Using Sinemet for RLS usually only works 2 or 3 years.

The long term use of DA for our type of dopaminergic problems (for those who do respond) is yet to be discovered. For me, every time I cycle off and back on, it becomes more effective. And there is less need of it for visual functions. However, there is need for depression and functioning ability.

One of the most important things about this med (and many 'brain' meds) is to find the smallest effective dose that you can take. Also, cycling every few months. I attribute this, along with CAM therapies, as why there seems to be some actual healing. Several doctors are confused by the fact that there has been some healing. Of course it is impossible to say for any given individual. And if you treat your body well (food, rest, friends, exercise, no 'trips', ...), time is a healing factor - your body wants to be well ... the best medicine possible.

[shaolinbomber]

Thanks guys, I think I'll print out the most professional looking threads and bring it to a nuero or pychiatrist.

''What are your visual symptoms?

Do you have any body symptoms? '' Everything you read about hppd I have it. I think having panic anxiety disorder prior to hppd has made anxiety even worse therefore all the symptoms as well. I don't care about the visuals at this point, I just want my old personality back. Even w/ Simenet if it did work, I would have to get all the way off klonopin first and find out where I'm at.

I read the other day on a Simenet thread that after 5 yrs of use it usually stops working for parkisons and nobody knows why.

Since ppl here are using it for hppd hopefully that wont happen. Thanx for your responses.

Shaolin, I also take 300-400mg of tramadol daily for headaches and body pain. If I wasn't working such a physically demading job I would settle w/ only soma, but tramadol gives me energy and makes me feel good. Be careful about trying to get fucked up on it, I have in the past and you can get some kind of seratonin syndrome. 400mg is the max a day, I'm sure you know all this but just in case. Later all!

1998, if you do end up going on Sinemet, be sure to continue taking it for awhile. If you're going to receive benefit from it then the effects should be felt immediately once it kicks in but the drug feels like it has a progressive trait to it where the longer you're on it the better everything becomes. It feels like plateaus. Every 2-3 days after my 1st-2nd dose a new wave of emotions and familiarity washes over me and i feel even more connected to myself and my surroundings. It's definitely tough to explain but you should know exactly what i'm talking about when you start on it.

[shaolinbomber]

Another thing that i've noticed is that my pupils aren't as big as they normally were before I started taking Sinemet. The only time I could get them to shrink was when I used opiates but now, even after not taking any Tramadol, the Sinemet seems to keep them at normal levels.

[Merkan]

Gotta answer to this as well. This is one thing i notice when i am in the bathroom. My pupils are down 50% in size. Also they adjust to light switching on and off instantaneously

[Phenomenon]

One of the most important things about this med (and many 'brain' meds) is to find the smallest effective dose that you can take. Also, cycling every few months.

This might be important so people don´t end up with tolerance after awhile like RLSers. When you cycle, do you just lower the dose or do you get off it completely? If so, how often and for how long?

@shaolin

For how long does the effect last after one pill now?

[VisualDude]

The opioid receptors are 'sisters' of the dopamine system. As is oxytocin. These three are a big time limbic motivational trio.

As for the eyes, the parasympathetic nervous system is affected by a dopamine system. I also have a small problem with one eye being sluggish this way. There is even a very small change in heart rhythm (not harmful) connected with PD and research is being done to see if this change can be used as a test for very early PD. Lots of really interesting stuff. Here is a little blurb yet to further investigate about pupils: http://en.wikipedia....i/Adie_syndrome

When I cycle, I usually take just 1/2 pill for a week or two, then none for 2 weeks. Then startup again with the standard 2 or 3 1/2 pill each day for 3 months. I love it to see the progress and I hate it because I still need it.

[Phenomenon]

The opioid receptors are 'sisters' of the dopamine system. As is oxytocin. These three are a big time limbic motivational trio.

As for the eyes, the parasympathetic nervous system is affected by a dopamine system. I also have a small problem with one eye being sluggish this way. There is even a very small change in heart rhythm (not harmful) connected with PD and research is being done to see if this change can be used as a test for very early PD. Lots of really interesting stuff. Here is a little blurb yet to further investigate about pupils: http://en.wikipedia....i/Adie_syndrome

When I cycle, I usually take just 1/2 pill for a week or two, then none for 2 weeks. Then startup again with the standard 2 or 3 1/2 pill each day for 3 months. I love it to see the progress and I hate it because I still need it.

Ok thanks, sounds like reasonable cycling.

Interesting what you say about one of your eyes being "sluggish". There is a disorder called amblyopia or "lazy eye" where one eye is very dominant and the other lazy. The lazy eye often has worse depth perception, loss of contrast and light sensitivity. Symtoms most people with HPPD has. I definitely have one lazy eye and all these mentioned symtoms plus VS are worse on it.

There are eleven studies showing benefits with L-dopa/carbidopa for treating amblyopia.