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Great to hear from 'the man' and that he is still active with HPPD work after 40 years.

 

Running notes: Lymes, cancer, seizure disorder can cause HPPD symptoms.  VS study - hyper-metabolism in lingual gyrus.  Abnormality in occipital cortex.  qEEG show occipital cortex and non-dominate temporal parietal cortex.  Research needs a shotgun approach not just a riffle approach.  Needs broad effort.  Identifying where in the brain PPD occurs is good information but doesn't provide relief for the sufferer.  Judicious clinical trials are most likely to help 'cure'.  At times bringing down anxiety brings down hyper-sensitivity to visual stumuli.  Psycho physics - inexpensive, inevasive, no chemicals, doesn't hurt, the single most robust finding in the field.  Critical flicker fusion technology.  Pupillar diameter is terrific measure of autonomic arousal ... HPPDers typically have larger diameter.  SSRIs are helpful long term for anxiety but cause dependence causing rebound when reducing dose.  5H2a blockers and D2 blockers can make HPPD worse (at least transiently).  Lamictal useful for seizure and refractive depression but not particularly for HPPD.  Must listen to patients with humility because they are not making up their experience.  HPPD is chronic disease without known long-term treatment.  Dr A career is winding down - old farmer.  All research personal work - no grants.  Need firmer scientific understanding to proceed with pharmacological cure.  Most psychiatrists and neurologist don't know about HPPD.  It is an orphan disease.

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Indeed and well summarized.

Also important to address that people with this condition should support the research by funding  so Goadsby and Schankin can continue with the next phase of the research and hopefully set up successful treatment strategies. 

Quote:

"We have published a major study on the description of the syndrome:

 http://www.ncbi.nlm.nih.gov/pubmed/24645145

 One other paper on 
the location of the disease in the brain has just been published electronically:
 
 http://www.ncbi.nlm.nih.gov/pubmed/24816400


 Based on this several treatment approaches are possible and we are working on this right now…

 But as you see, Dr Goadsby and I are working now in Europe and we need to establish structures first. So please understand that this might take some time…

Many greetings from Munich!


Christoph" 

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I am confused as to Dr A's clinical observations that SSRI's have efficacy in HPPD; it doesn't seem to match the trend on this forum. Also that upping serotonin makes no sense to me in HPPD. It strikes me that if anything there must be too much serotonin, at least in the visual cortex, whilst perhaps depletion in other areas of the brain, causing, for example, depression (well, if depression is really about low serotonin.. I don't buy that, not just because of the linked article). Unless the autoreceptor theory of how SSRI's work is correct, I find it odd that he observes this. Also that 5-HT2a antagonists worsen HPPD. I think I do actually recall some published studies about that, but it still surprises me.

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If I understood the interview correctly, he said that SSRIs are used to treat anxiety, not HPPD.  And the conversation came up in response to a person getting worse visuals when stopping two meds (SSRI and antipsychotic) and starting a third med simultaneously - something that should not be done.

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If I understood the interview correctly, he said that SSRIs are used to treat anxiety, not HPPD. And the conversation came up in response to a person getting worse visuals when stopping two meds (SSRI and antipsychotic) and starting a third med simultaneously - something that should not be done.

Oh okay, I haven't watched the full vid yet and was just inferring from your notes.

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Interesting interview, especially the part about pupil dilation being, on average, bigger in hppd patients. I've always believed that opiates/oids, while being highly addictive, can help hppd symptoms and dp/dr because not only do they drastically shrink pupil size but they also cause a flood of dopamine in the brain and anytime I've done them in the past I feel the dp/dr slip away as well as watching my visuals lessen quite a bit with it.

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