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HPPD and Visual Snow - A Better Name Required


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I am going to put together a survey for members of this site and the visual snow site / Facebook groups to fill in, so that we can get lots of useful information in one place regarding symptoms, medication response, etc. I'd like the survey to be quite detailed so that it proves to be a really useful resource for many. There are not many people out there to help us, and so we must help ourselves.

 

Before I start designing this survey (I will post another thread in due course so that other members can help), I personally think we need to come up with a better name for HPPD or visual snow. Some reasons:

 

  • It would be good to combine the drug induced visual perception disorder (HPPD) and the non drug induced visual perception disorder (often referred to merely as visual snow) under one common name, since they both encompass many similar symptoms. If we all come together, perhaps this will give us more scope to progress our research. We can then have a sub categories for drug induced and non drug induced versions of this disorder. They do this for other disorders. For example, with restless leg syndrome you can have idiopathic RLS (no known cause) and secondary RLS (known cause, e.g. pregnancy).
  • By technical DSM definition many of us on this site do not have HPPD. HPPD as it is thought of by many seems to differ massively from DSM diagnostic definition. Attempts to change DSM definition do not seem to be progressing well.
  • HPPD seems only to be defined as a medical condition in the US.
  • The literature confuses HPPD with flashbacks and vice-versa.
  • HPPD or visual snow is predominantly considered a visual perception disorder, when for many it is much more than that with many other neurological symptoms described by members of this and other websites.
  • For those who do not view drugs as the cause of their visual perception disorder and other symptoms, they often refer to themselves as having visual snow, when usually this is just one of many symptoms. On rare occasions no visual snow is present, but other symptoms consistent with the overall disorder are.
  • With all these different permutations it can be difficult for those new to the disorder to get their head around it all. This includes both those who come to experience the disorder first hand, as well as practitioners who are presented with patients experiencing the disorder having themselves never come across it before in their career.

 

If you have any comments, objections or thoughts - please do not hold back.

 

I think a name that somehow combines both the visual and non visual aspects of drug induced and non drug induced aspects of the disorder would be very beneficial. Peter Goadsby (neurologist and researcher) and colleagues have referred to it as Positive Persistent Visual Disturbance (PPVD - http://hppdonline.com/index.php?/topic/751-visual-snow-a-new-disease-entity-distinct-from-migraine-aura/). Whilst I think this is an improvement, I do not think it goes all the way to addressing all the points I mentioned.

 

Does anyone have any suggestions?

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Hello.
Firstly, I appreciate the effort you've put into this. There seems to be a handful of people actually researching HPPD on this forum, and I've been considering to round them all up so we could work together on different theories etc.. but that's for another day.

 

I have a few remarks regarding your idea.


IMO, there's a distinction between VS and HPPD, mainly it's cause. I think it would be unwise to unite them, as they already both fall under Perceptual Disorders.
However, I do firmly believe there are different flavors of HPPD. Mainly the following two: the sweet flavor of only visual symptoms, and the more sour flavor of HPPD with all common "co-morbid" (I put quotation marks, because I believe these are intrinsic to HPPD) symptoms.

I think these should require distinction. PHPVD (Post Hallucinogen Persisting Visual Distortions/Disorder) and PHSD (Post Hallucinogen Sensory Distortions/Disorder) would be appropiate names.

The DSM has dedicated relatively little effort to this disorder indeed, and the diagnostic criteria are insufficient. Moreover it requires basically all other psychiatric and neurologic disorders to be ruled out before being able to diagnose HPPD. This is absurd, and is one of the causes why getting help for HPPD is such a tedious process.
 

I don't know about "medical disorder", but don't all countries use the DSM for referance? Hence all countries could consider HPPD as a psychiatric diagnosis. However, again the DSM criteria falls short in these regards, for there is not a single mention of possible neurological involvement. This makes getting a qEEG difficult if not impossible for many people I would suppose. It does for me at least.

 

All in all, I think your idea of a questionnaire is very wise. This could be an elaborative inquisition of simple yes/no and 1-5 rating questions, but also leaving the option for any further comments on what they feel encompasses HPPD predominantly. E.g. I saw Visual reported to feel "an alien anxious feeling, not like normal anxiety". This I experience as well, like a feeling that has never before been felt, from an entire other dimension.

 

Again, I emphasis that putting VS and HPPD under the same term would not be beneficial. Perhaps convenient at the least, but convenience can lead to imprecision (hell is that an English word.. multi-linguality sucks when you've got HPPD.. I throw 3 languages together into some Klingon jibberish soup most of the time).

For me I experience many symptoms. Aside from the classic visual symptoms, I believe the accompanied symptoms are the worst. The aforementioned word-recall/speech problems can be very annoying. Sometimes language seems like some weird system in which the meaning of words are way too amiguous and they could have no impact whatsoever. The meaning of words are just totally out of balance, and this consists with reports that thoughts feel as if they are filtered through the wrong tunnel. Hence random words or thoughts can make you anxious if they get funneled through this filter, leaving this messed up anxious "link" to the thought or word. This all is particularly demoralizing because rapping used to be one of my few artistic outlets, and I simply can't rap anymore.. it sounds horrible, no flow, I stumble over words, etc. Even songs I listened (and rapped along) to over 1000 times I can't rap anymore.. Strange.

Other symptoms I have include, but are not limited to:

  • The well known DP/DR dilemma
  • Severe cognitive deficits. I cannot emphasize enough how demoralizing this can be. Certainly there must be more of us experiencing this. Hell I used to be the best of my class, now I can't even comprehend Pythagoras' equasion.
  • Strange/different/lessened body feeling; deficits in motorfunction/coördination.
  • The above combined with speech issues, might indicate more involvement of the sensorimotor cortex and other sensory areas of the brain. It is the common belief that HPPD is limited to the visual apparatus, however I believe other sensory areas could well be affected.
  • Loss of emotions. Hell I can't even cry about this torture, even if I try. I need freaking drugs to be able to cry. How lame is that?
  • Loss of love and empathy; I am rude and short-tempered with and to people, whereas before I was a patient, loving person. Also my speech timing is very off, making social situations strange. There's also a diminished feeling of connection to people, which results in a lessened ability to feel what a person is trying to convey. As if interactions is merely a scientific thing, no spirit.
  • This subtle, yet noticable, paranoid feeling. Not like actually being paranoid, but I notice anytime I walk thru my living room, I think of the people outside who can see me. Seriously, it's ridiculous, but it's there.
  • Can't think of more now, but there are many simple subtle things I notice that have changed. And in life, small things added up are worse than one big problem.

My personal experience is an example of the diversity of HPPD. Not everyone experiences these things, but the majority I believe (I could be wrong) report similar things. Collecting symptoms of say, 300 people, could help categorize symptoms of HPPD, making it easier for people to determine whether what they have is actually HPPD. I only realized I had HPPD after reading several posts of people reporting co-morbid symptoms, not only the few symptoms reported on the Wiki page (and DSM for that matter).

 

In all, I think a survey would be a great idea! But it would be hard to contact sufficient HPPD sufferers. Let alone those with an "official" diagnosis of HPPD.
Most cases are self-diagnosed. I think this forum is a great area for HPPD sufferers, and have been very grateful to use it. However I believe there is need for a portal for those who wish to dedicate themselves to collaborative research. Like I said before, there are a handful of people conducting personal research, however the results are limited (calculate in cognitive deficits, point proven), and I think the community research would benefit greatly from said portal, with the prerequisite that there is sufficient activity to enable likeminded people to connect frequently, and thus making it less daunting to comb through hours and hours of complicated research all alone. Also it would provide a plateau for incorporating the theories of others, which might've been overlooked previously. Taks could be divided amongst members, allowing the process of research to be sped up. I would do the honor of initiating this project, however I, like many others, lack some form of motivated discipline to dedicate myself to such a thing. However, if and when I do get rid of HPPD (which seems to be the case in the near future), I will dedicate my time and effort to this.

 

That's all the suggestions I can think of for now, sorry if the majority seems unrelated. Main conclusion: subdivided HPPD seems to have more priority IMO than joining HPPD and VS.

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Many thanks for you detailed response. Perhaps wanting to change the name and lump everything together is jumping the gun a bit, but I do have lots of beef with the names of the disorders and do think they need to be more representative of the disorder itself. But what also has to be taken into consideration is that there are those with only visual problems, nothing else, and so if the name is changed they may feel the new name no longer represents their disorder. I understand what you mean about both convenience and sometimes as a consequence lack of precision, and this is a valid point, but I also think if there is a clear distinction then this can be mitigated. Another problem is that this forum is dead at times - coming together with others allows for more brain power, more collaboration and more research. But I also note that some with non drug induced visual snow etc get offended people talk about the two conditions being the same thing, as they do not wish to be lumped with those who have taken drugs in the past.

 

There does seem to be a distinction between visual snow and HPPD in that the cause is different. However, what we do not know is if the end result is the same, in terms of the way the nervous system has been altered. It is difficult to know either way. Whilst many symptoms are identical (visual snow, trails, afterimages, DP/DR, etc), there are some symptoms which seem to be more specific to HPPD, such as ghosting and movement of stationary objects. It is also clear that when considering other areas, symptoms can be caused by different things. For example, a cough can be caused by a cold or by lung cancer. A survey aimed at all may be beneficial in determining any differences between VS and HPPD. Of course, no name change is required for that, and so perhaps that would be a good place to start. The survey would be sufficiently detailed to be able to sub-divide further to see how HPPD varies from person to person.

 

The DSM is published by the APA. I do not know how it is used worldwide. The new DSM is due out on the 22nd of this month. The main point is that our disorder is not defined anywhere apart from the DSM, and in there it is defined poorly. Other disorders, such as Bipolar for example, are defined in many different places e.g. International Classification of Diseases.

 

The survey would attempt to be as detailed as possible, leaving lots of spaces for additional comments so as to ensure nothing is missed. The survey would (if limited to just HPPD) not require a HPPD diagnosis since most people are correctly self-diagnosed. Thanks for listing some of your symptoms - I will also create a separate thread in future to go into symptoms in more detail.

 

I agree it would be good to have some place where those of us interested in researching can collaborate. This site does allow for this to a certain extent - but sometimes research on this site lacks structure and is muddled. I'd be happy to help set something like this up in the future.

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How about dropping the "Positive" and title the survey PVD?

 

Perhaps one of the worst terms being used is Persistent Migraine (a personal 'beef') - which is an oxymoron, since migraine (and epilepsy) are defined as being in episodes.

 

Then you have stuff like people being born with VS ... so then it is considered 'normal'.  But there is a difference between being 'healthy' and 'normal' (synonomous with 'common').

 

Plenty of people have poor vision, but that shouldn't really be confusing to the survey.  So whatever you call it, visual snow is on the list of symptoms.

 

 

As far as HPPD goes, IMO it IS a form toxic encephalopathy ... even a poster-child example of it.  But while a TE diagnosis opens the doors to better treatment trials, having more specific diagnosis, such as HPPD, is important.  The fact that so many HPPD sufferers have symptoms outside the HPPD 'dirty dozen' underlines that it is TE.  The description of HPPD being "loss of serotonin receptors" again fits the very heart of TE diagnosis.

 

How this would affect your survey?  Shouldn't really ... your just collecting symptoms and correlating them and any med response.

 

BTW, Bravo for doing this!!!

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