Ghormeh Sabzi

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?

Anyone else looked into this further?

Has anyone else given this a go?

How long did you take to respond to Keppra?

I'm liking your posts - you have a very engaging writing style! One book you might want to look into is Neuroscience: Exploring the Brain (Third Edition). I have recently started reading it and it is fantastic for getting a general understanding of the nervous system (it is used by students for neuroscience degrees). I don't know about tDCS (building your own sounds very radical - be careful!) but I do know a little about neurofeedback, which is something you might want to look into. If clinics can locate the HPPD on a qEEG (as has been shown) then they can try to normalise it through neurofeedback techniques. I know at least one member on here has tried it. He told me "Neurofeedback really helped me with anxiety and dp/dr. I find when these are reduced my visual symptoms reduce or become less bothersome." Our conversation took place some time ago and was very limited, and I do not know whether they attempted to find his HPPD and normalise it or whether he just had a general neurofeedback treatment.

Good to hear. Positivity is also beneficial.

On the first point, very interesting, thanks. On the second, I can see where you are coming from completely, and agree in some situations. You might be depressed ‘why has this happened to me?’, or anxious ‘what’s all this weird static in my vision?’, which would be viewed as being caused by but not part of HPPD itself. But remember these symptoms can have a more mechanical cause as well, more to do with the structure and chemistry of the brain rather than the situation that the individual has been placed in (think certain cases of clinical depression, or anxiety disorders, for example). Additionally, there are many more symptoms that have been reported by members – fatigue, tinnitus, pain, dizziness, brain fog, head pressure, uneven pupil size, communication problems, tremors, spasms, depersonalisation/derealisation, etc – just off the top of my head. Many more I am sure. Some members report significant personality change – from outgoing, confident and quick with their mind; to uncomfortable, shy and slow and experiencing panic attacks for the first time in their lives. For some of these symptoms I think a case can be made for them being psychological (depending on the situation), but for others it seems more likely (to me) that the mechanics of the nervous system have been altered in some way. Viewed this way, these symptoms may not necessarily be HPPD by technical definition (HPPD is to do with visuals and mental state, but that’s a whole different discussion), but are part of the same overall neurological disorder that the person is experiencing – backed up by the fact sometimes medications used to treat their disorder alleviate non-visual symptoms without altering the visuals themselves.

What SSRIs are used to treat HPPD? Lots of people have reported that SSRIs have made things worse for themselves, permanently. More pertinent to the thread, many members report problems that occur at the same time as typical HPPD symptoms and it many cases it does seem to be more than just a visual perception disorder. Ultimately, we do not fully know what damage to the nervous system has occurred, but it would be VERY coincidental if there was no connection between HPPD and non-visual symptoms that often occur at the same time.

I haven't read this thread fully but please be careful about supplements and medications that you take, researching things fully rather than going for something on a 'whim'. Us HPPDers can be extra-sensitive to things we put in our body. Additionally, you can very easily and quickly end up spending a lot of money without any end benefit. Try not to try too much at once as well. www.longecity.org/forum/ is a good site for beginner research purposes - but do remember that there are a lot of unqualified people on that website and as such there is a lot of speculation involved. But it is a good resource to start with. Something that should be completely safe and cheap to try, however, is a vitamin-B complex. Also outside of supplements and meds other things to try are keeping a good routine and setting yourself realistic daily to-do lists. My initial HPPD-induced fatigue is mostly gone but I do have other problems that prevent me from getting stuff done. When I have things I need to do I find organisation and structure helps me out a lot (both pre and post HPPD).

I think what you can do depends on your situation and individual circumstances. When my HPPD presented itself fully, it was much more than mere visual abnormalities - I was in a great deal of physical pain which meant that I had no choice but to drop out of university. For many, HPPD is much more than a visual perception disorder. For the first few months I felt like I had flu due to headaches, fatigue and and a feeling of not being with it - so it was difficult to do much. But this slowly resolved itself over a few months. But I also have had nerve pain since this all started which has not yet resolved. I would of course prefer that I did not have the visual abnormalities, but they are not a big problem for me - it is the non-visual stuff that significantly impacts my life. For the past year I have been working full-time in a boring job, paying off some debts and buying myself some things that I couldn't previously. My nerve pain is pressure-induced and since I stand up all day in my job, there is no pain and so it is not an issue. But my nerve pain situation is now better - whether it has actually improved or whether I have just found ways to reduce its impact I am not sure. But I am now at a point that I feel that I can do something else with my life that has more meaning, and so in September I will study sciences for two years (whilst working part-time) before going back to university straight after that to study neuroscience (which I would never have become interested in had HPPD not entered my life). I hope before I go back to university that I will have improved further, allowing me to fully focus on my degree without distractions.

My pain, in my opinion, is 95% HPPD related. It seems likely that in my case the hyper-excitability of senses has extended past just the visual and auditory ones, resulting in painful sensations without any sensory input that would normally cause pain, know as allodynia. It seems hope1 has something similar. Muscle tension and pain can be completely different, however.

Can you explain further? I don't have muscle tension as such - rather sensitivity of skin, which is a massive problem and my worst symptom. It is like I have a permanent graze on my buttocks / upper thighs that is aggravated when placing pressure on the area (e.g. by sitting down).

He replied to me from m.weatherall@imperial.ac.uk - so that one should work.

My email bounced - maybe try mark.weatherall@imperial.nhs.uk or mark.weatherall@imperial.ac.uk

This is the article: http://www.dailymail.co.uk/health/article-2269721/Chloe-Brookes-The-woman-sees-snowflakes-sunny.html

The story of Henry Molasion is an interesting read (http://en.wikipedia.org/wiki/Henry_Molaison). He had brain surgery in the 1950s for epilepsy when very little was known about the brain. Whilst it did not go according to plan (memories and memory forming skills massively altered, they cut out the hippocampus!), it taught scientists a significant amount about the human brain. He only died a few years ago.

Oh yes, it is certainly true that implants are possible. They can use them to control conditions such as epilepsy and advanced Parkinson's.

I think that turned out to be possibly not true. Certainly he gave out conflicting information, making him difficult to trust.

I have read in the past that people have had large chunks of their brain cut out to cure their epilepsy, having all the types of scans you mention to make sure that part of the brain is not a serious part of your 'self', so as to minimise any side effects. Surgery has become a lot more common and safer in recent times, with the benefit/risk factor always improving.

In an unexpected turn of events, my PCT have agreed to fund me to see Dr. ffytche. I will of course provide a detailed update following my appointment. I am also now on a trial of Keppra, details of which also to be provided in due course.

I have to say, I was quite disappointed following a phone consultation I had with Dr. Abraham a year ago. Perhaps my expectations were too high after reading about him on here. This site is far more useful to me than Dr. Abraham will ever be.

Personally, I wouldn't trust any of those sites - especially with HPPD - you don't know what could be in them pills. Better to spend time, effort and money on getting it prescribed through proper channels IMO.

It was a very short letter just saying how to apply to the PCT to be able to see him (moved to a new area so new GP), but that he was not sure it remained appropriate to see me.

I tried it for a few weeks as I read it can be useful for some pain conditions. Often taken with ALA (which I also took). Not seen anything to suggest it would be useful for HPPD. In any case, did not help pain or alter HPPD in any way.

How did you make this appointment? He told me he does not see patients privately. I have not spoken to him for many months as I kind of gave up seeing him in the end. Plus he sent a very strange letter to my GP. Let us know how it goes and what he does ....