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Bunch of placebos


gill
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I just gotta say that I don't think most of these meds for hppd are much more than just placebos. A couple years ago everyone jumped on the bandwagon for keppra, trying it because of a couple ppl responding well. At first a lot of people said that it was helping, including me, but it was mostly hype, since like most people, I realized eventually that it didn't do much at all. Welp, it's the same with this levodopa. A couple people report good effects, then everyone gets all excited, jumps in on it, then exaggerates any positive effects because they expect and hope it will help, only, which is inevitable, that in the long run they realize it doesn't do much of anything.

Unless, anyone can show me otherwise, I'll be waiting to see it.....

And don't get me wrong, I'm not saying a few people who've responded well to this or that are invalid, or that no one should try things, it's just that people should be skeptical more than anything. I've seen this hyped-up effect before, and even been a part of it, which just leads to people being influenced not by reality, but just their hope and emotions. I remember when people all the sudden thought melatonin was going to cure them. heh, whatever, I've tried tons of things, and mostly just tuns out to be hype, a placebo mostly, unless someone can say otherwise, and be honest with yourself, not just saying something helps because you wish it would.....

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I agree with you, at least in terms of HPPDs visual symptoms. I really did see an improvement with Keppra, for a short time... and then it went. I can think it was the placebo effect.

The other aspects... dp/dr, anxiety etc... they are probably more treatable and also more changeable, case to case... so perhaps Keppra/Levodopa are helping those things more.

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Yeah, good point, the other issues, dp/dr anxiety are usually more directly effected by things and helping those things can make hppd seem less of an issue.

And I just wanted to add, my intent here isn't to discourage people, but more just to bring a sense of skepticism back to the situation. I used to try all sorts of things, and wanting this or that to work so badly, just wrongly convinced myself that something was helping, but really wasn't doing much, and so, it's not about discouragement, it's about taking a step back and taking an honest assessment of the situation, and not being influenced by hopes and emotions... And if something doesn't work, well that's not the end of the world either, which is another story....

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Gill>>

I do agree with you, I seem to be one of the few who strike lucky with all these meds. What goes for Sinemet it has a 30-50% succes rate in trials, i think this is important to remember. Lets say that there is 30%, that leaves 70% to wish for. However this might say something about HPPD and perhaps variations of it.

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I dont think i can get used to calling you G Lundgren...can i just stick to Merkan? :D

I guess for some people thats true, but it also depends on how people like merkan feel at the moment...are your symptoms still incredibly better or has the honeymoon period worn off? If it's all still good, then i guess the problem is with variations between people...many have certainly experienced improvements in cognition from keppra...hard to placebo yourself like that...

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One thing seems sure, there are no long term studies. But you can also be sure there never will be.

It is very common for meds to loose their effectiveness over time. For some, like valium, it can be a matter of days. Glaucoma eye drops usually have to changed every 3 years or so. It doesn’t mean they are placebos.

Some doctors use Sinemet for RLS. Often after a couple of years it no longer works. Perhaps this will happen with HPPD.

I’m 3 years strong with it. Merkan G Lundgren is about 6 weeks strong … lol

With meds that affect the brain, it’s plasticity response will inevitably change things. Other factors are involved as well.

People are different – just read the variety of symptoms on this forum. And the combination of symptoms. And many are self-diagnosed as well.

One can sit on the sidelines and wonder. One can intellectualize. One can try with success. One can try with regret.

How skeptical should people be?

People need hope. And hope isn’t hype – at least it shouldn't be.

Which is more gullible – to give into fear or to try things? In the end it is a personal decision.

Perhaps I should apologize if I’ve created hope. It has never been an intention to create unrealistic expectations of this drug. Only that dopamine is a major player that is ignored across the board – for DP, DR, HPPD, anxiety, and depression. And this is an industry bias – no other reason.

It helps me. I’ve shared this experience. And given medical info as to the mechanisms involved. What other reason has this forum been created for than to share successes and failures and ideas?

What is left? For people to do their own research. Set their own goals. Decide if fighting for one more try is worth the effort. Or even if they have the energy for it right now.

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I can honestly say that Sinemet has helped my DP/Dr A LOT. It still has a reducing effect on my afterimages as well. I never got much relief from visuals with Sinemet but Im not taking it for that. The DP/Dr aspect of this problem is the biggest issue for me and that's what Sinemet helps the most.

The only other thing that I can say for sure that drastically reduces both visuals, anxiety and DP/DR are opiates. The only problem is that they cause hardcore dependency. Sometimes I wonder if being addicted to opiates is a better life choice than having to constantly worry about HPPD on a daily basis.

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What opiate med are you taking Shaolinbomber?

The only thing I can get prescribed to me right now is Tramadol and I have to take 5-6 50mg to feel them at all. Where I live, Codeine is not even an OTC med. I live in Texas and they're very strict about that kind of thing. Im going to my dr. on Tuesday and i'll be asking to be moved on to another, more effective pain killer. I get a lot of involuntary muscle movement and head twitching from Tramadol. That can't be good.

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  • 4 weeks later...

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