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Any treatment on rhe horizon for the majority?


LarryC
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Seems to be what people are having the most success with right now. I'm taking gabapentin. Isn't really doing anything noticeable. First day on it yesterday, felt like I was on meth. Today I felt normal. Might be having a few visual quirks. Nothing better or worse. No real changes yet.

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It's not really as if there are "established" treatments, but indeed those Jay summed up are pretty popular. Other things to discuss with your doctor can be Clonidine, Lamotrigine, and Flunarizine. SSRI's have been used throughout literature, and some people benefit from them (e.g. Venlaxafine).

If you're talking research wise.. I don't know whether there's any active research at the moment.
There have been reports of NIBS helping people (including myself). There's a plethora of supplements available, and many people seem to find nootropic adjuncts very helpful (Kava etc.). One stack to raise PFC DA could be L-tyrosine+Bacopa Monnieri extract+EGCG+Quercetin and maybe L-theanine for some striatal DA action. This is just an example.

Honestly I think the majority of treating your HPPD will involve doing research yourself. I mean look at what Jay's doing: Buspar is not usually considered when treating HPPD, but it could very well help his anxiety, which in some could help with DP/DR. Hell you'd be surprised at the many medications and supplements people have tried here. I myself have tried over 50 things.

So to answer your question: no, I don't think so. Maybe in the next few years.
Who knows. A lot of members here also seem determined to find a new treatment/cure, and many actively devote their time to studying neuroscience, be it professionally or at home. I suspect within the next decade there'll be at least one new treatment.

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Flunarizine is very interesting but only one member on here has reported trying it out (with success, I might add). There are also some concerns about its safety - but that's the same with a lot of medications.

 

There is a Keppra 2.0 on the horizon. When it will be approved (if ever) I do not know.

 

I'm not sure if there will ever be a treatment option available for the majority, as different members report different results with different medications. The same goes for other conditions such as epilepsy and migraine ... what works for one may not work for another. But I do expect there to be progress (albeit slow).

 

At the moment it seems a case of waiting for new treatments to be approved for other conditions, and trying to convince our doctors to allow us to try them out for our condition. Once more is understood about this condition different types of treatments can be tried. But as many know it can be difficult to convince doctors to allow you to try things - some seem more willing to help than others.

 

If all goes to plan (depends on some factors), I hope to pursue a career in neuroscience and eventually help to contribute to the understanding of this condition to allow for more treatments to be offered. This is, however, a long process. In September I will do sciences (biology, chemistry) for two years and then will apply for a neuroscience degree after that.

 

Maybe one day there will be a cure ... it depends on what has actually gone wrong up there and how medicine advances. Despite many years of research and significant amounts of money, no effective treatment let alone a cure has been found for conditions such as Alzheimer's - but for other conditions such as epilepsy they can now cure it in selected individuals by cutting out the area of the brain that is causing the problems. Obviously they have to make sure cutting out this area is not going to turn the patient into a vegetable or anything like that. For other conditions such as Tourette's they can hide the symptoms by delivering electrical impulses into the area of the brain that is responsible.

 

Professor Goasby and Dr Schankin are currently scanning the brains of those with visual snow etc (who have visual abnormalities which are not induced by drugs), and hope to find the structure in the brain that is responsible for the generation of the visuals so that some potential treatments can be put forward. Maybe in around a year we will hear more about this.

 

There are also some other professionals who are becoming interested in both the drug-induced and non drug-induced types of this disorder. It is also starting to gain more publicity in the media, with visual snow recently talked about on TV and in a national English newspaper, and information about HPPD being published on some well respected websites. Awareness helps a lot as it gets more people interested.

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Flunarizine does indeed prove unsafe. If I remember correctly (I'm lying, I actually have this in my notebook), it is linked to early onset Parkinson's?
Could you provide a referance to this Keppra 2.0? Dotarizine crosses my mind, but that isn't a racetam.
Regarding pursuing a career in Neuroscience, I myself would also like to do so, once my cognitive functions are back in play.
That said, I still have high school to finish. If by some miracle I do manage to function on the same cognitive level previous to HPPD, aside from being ever grateful, I'd feel obliged to use it to research HPPD, and find a cure. There's only so much I can contribute in this state. Hey who knows, perhaps in a decade we'll all be in a lab researching HPPD together?

Hopefully future treatment will be less invasive than cutting out bits of the occipital lobe/visual cortex! Epigenetics and NIBS seem the most promising so far.
Curious to read the findings of Gosby and Schankin.
The awareness is defnitely helping, though I don't know what the impact is on the scientific community. At the very least, it is helping the cause of prevention.
There's a very popular Dutch talkshow about drugs, and it crossed my mind to (in a far future) contact them to see whether they're interested in having me over for a talk. They already had a guy over with cognitive deficits from XTC. Anyways kind of forgot where I was going with this, so I'll cease the rambling :)

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I haven't looked into flunarizine for quite some time now, so I cannot remember the specifics. I don't think it can cause Parkinson's but it can reveal Parkinsonism, especially is predisposed individuals (elderly or genetics). Drug-induced Parkinsonism (different from Parkinson's) should resolve by itself after the drug is stopped (2 years max, usually much sooner), but in rare cases it does not. If it doesn't it means you were always going to get Parkinson's but the drug just revealed it earlier. Please take these statements with a pinch of salt, however, as I cannot be sure of their accuracy.

 

Brivaracetam is the Keppra 2.0 - http://en.wikipedia.org/wiki/Brivaracetam

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Yeah I remember it being flaky like that.
Dotarizine seems interesting because it antagonizes 5-HT2A in addition.
Brivaracetam! That's the name. Remember it somehow now.
I can see why it is interesting. Have a look at this:
 

Conclusions: Our findings show that brivaracetam clearly suppresses generalized photoparoxysmal EEG response. As such, investigations of the antiepileptic properties and tolerability of brivaracetam are warranted in further clinical studies of patients with epilepsy.

source

I presume you already read this. Wonder when it will be available?

Also of interest:

The voltage-gated sodium channels (VGSCs) are a family of membrane proteins forming a pore, through which they selectively conduct sodium ions inward and outward cell's plasma membranes in response to variations of membrane potentials, playing a fundamental role in controlling cellular excitability. Growing evidences suggest that abnormal VGSCs are involved in the pathophysiology of both acquired and inherited epilepsy.

source

 

Brivaracetam appears to inhibit Na+ channels.

So now aside from CCB's, SCB's also show promise for treatment potential in HPPD. This might've been known/speculated already.. but to me this is all still an exponentially growing discovery of the mysteries of neurology.

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Dotarizine rings a bell, maybe that's something I looked into before. I'm not sure if it is something that can be prescribed, though, because I can't see that it is approved for any disorders. I can see some dodgy websites selling it but that's about it.

 

Brivaracetam is currently in phase 3 clinical trials, due to be completed in July 2014. I don't know how long these things take before they are approved. It might be available in 2-3 years I would guess.

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I've been looking at some old notes and dotarizine is not anywhere to be found, so I probably haven't actually looked into it before. Katanserin is a strong 5-HT2a antagonist, and hydroxyzine also has antiserotonergic qualities as well as other mechanisms of action. They may be worth a look for research purposes.

 

Edit: morbide on here had some benefit with hydroxyzine, but I also note a possible link to visual snow following hydroxyzine use (http://answers.yahoo.com/question/index?qid=20120822173012AAUrGM4)

 

If anyone knows of any strong 5-HT2a antagonists, please point them my way! Thanks.

Edited by Ghormeh Sabzi
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I took hydroxyzine when going through an insomniac phase and after an unpleasant experience with Zopiclone. There are several people on here, if I remember correctly, that said it helped with VS. I did nothing for me, however, and I quickly discontinued after reading several anecdotal cases of it making visual symptoms worse. Annoyingly, I think Keppra is now starting to make my visual symptoms worse. Curious, how certain drugs can alleviate symptoms for some but excacerbate them for others.

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Thanks for the info.

 

Someone recently posted this on FB:

 

I've been taking Cinnarizine 25mg twice a day for the past 5 days. Here in the UK is mostly used to prevent travel sickness. It also has other uses ... as a calcium channel blocker it improves the blood supply to the brain, it helps with vertigo/dizziness and according to some studies it works as migraine prevention. So far it reduced significantly my tinnitus. I will take it for another 3 weeks to see what effect does it have on my migraines. The only downside is the drowsiness it causes. But I'd rather feel a bit tired than have this constant loud sounds in my head :-)

 

Wiki:

 

Action of cinnarizine

Target of action

Calcium ion channel antagonist

T-type calcium channels

Antihistaminic

H1 receptors

Antiserotinergic

5-HT2 receptors[22]

Antidopaminergic

D2 receptors

 

Unfortunately:

 

Cinnarizine is also known to cause acute and chronic parkinsonism [30] due to its affinity for D2 receptors, which strongly counter-suggests its actual usefulness for improving neurohealth. Cinnarizine's antagonistic effects of D2 dopamine receptors in the striatum leads to symptoms of depression, tremor, muscle rigidity, tardive dyskinesia, and akathisia, which are characterized as Drug-Induced Parkinson's disease and is the second leading cause of Parkinson's.[30] Evidence suggests that it is one of the metabolites of cinnarizine, C-2, that has an active role in contributing to the development of drug-induced Parkinson's.[18] It is also of note that an estimated 17 of 100 new Parkinson's cases are linked to administration of either cinnarizine or Flunarizine,[1] making cinnarizine and drug-induced Parkinson's a serious issue. Those people especially at risk are elderly patients, in particular women, and patients who have been taking the drug for a longer amount of time.[15] There is also evidence that suggests that patients with a family history of Parkinson's, or a genetic predispostion to the disease are more likely to develop the drug induced form of this disease as a result of cinnarizine treatment.[35]

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Yes DA antagonism is why I advised not to use Mirtazapine earlier today. Let me look in my notebook.. Nope, haven't spent much time studying 5-HT.
Other than pointing you to the Wiki, I'll keep an eye out for you.


Interested in prospective treatments? I've got some new findings on VEP P2 latencies linking to cholinergic mechanisms, and possibly more evidence (in the same topic) as to how Coluracetam could improve P2 latencies, ultimately reducing visual distortions. I'd appreciate your ideas Ghormeh!

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Sounds great Ghormeh! Guess we have a proper distribution of workload going on here, hehe :)
I look forward to completing your survey. If you like.. The specialist had a standard HPPD questionnaire.. I could ask to receive a copy and translate it to English for you, so as to have a reference for your work. Let me know what you think.

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  • 2 weeks later...

Yes DA antagonism is why I advised not to use Mirtazapine earlier today. Let me look in my notebook.. Nope, haven't spent much time studying 5-HT.

Other than pointing you to the Wiki, I'll keep an eye out for you.

Interested in prospective treatments? I've got some new findings on VEP P2 latencies linking to cholinergic mechanisms, and possibly more evidence (in the same topic) as to how Coluracetam could improve P2 latencies, ultimately reducing visual distortions. I'd appreciate your ideas Ghormeh!

 

onedayillsailagain,,

where and when did you advised not to use Mirtazapine?  And why not use it?

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