Ghormeh Sabzi

Are you taking brand or generic Keppra? The latter will obviously be cheaper, though for me only the brand version works for symptoms of pain I associate with HPPD (NHS cover most of the cost here in the UK anyway). It doesn't help any other symptoms but pain is my worst symptom so Keppra's been really good for me. I am on 1000mg daily and it does the job. Different people need different amounts. The recommended doses of 1500mg+ are for epilepsy. 1000mg to 2000mg is a big jump. As you suggest it's better to wait a while and see how you do. Sometimes it takes time for the effects to take place. Two months seems a reasonable suggestion. You may even prefer to go to 750mg and then 1000mg. I was on 750mg when combining with flupirtine which I have since discontinued due elevated LFTs.

I just read you're on 5 meds in your other post. What are they? Taking cocktails can also be dangerous. I'm just looking out for you because I've seen certain choices cause significant issues for people many times before.

I'm sure you've read about the effects that drugs which increase the availability of serotonin have on some people with HPPD. Please be careful. Of course if other symptoms are causing havoc then they need to be treated. I don't know if you've considered other options.

Wellbutrin (also goes by other names) might be something to look at for the depression. It should be HPPD-safe since it works on the dopamine rather than serotonin system.

HPPD from MDMA is not rare. From my interpretation of stories on this site it is on of the leading causes, though that might be because it is probably the most popular 'hallucinogen'. You can hallucinate from it, even though it is not considered a hallucinogen in the strictest sense. My starbursting and ghosting also get better when opening my eyes wide, and they get worse when squinting. This isn't necessarily suggestive of an eye disorder, merely that the light is entering you eye in a different way, and so your brain is interpreting it in a different way. Again, this is similar story with others. Do you experience visual snow/static?

This sounds (to me at least) like a clear case of HPPD or 'visual snow syndrome' (mostly the same symptoms as HPPD but not drug-induced) If this is the case, drugs that aim to increase the availability of serotonin or decrease the availability of dopamine could make your symptoms worse. You would be very unlikely to have a sudden occurrence of astigmatism in both eyes. Some of your symptoms sound very similar to mine. See images:

I agree with Jay. It's difficult to give any advice without more information (particularly, specific symptoms).

I'm not sure it would be particularly beneficial to our group to donate to this. It would be better to donate to the 'visual snow syndrome' research. Prof David Nutt is hugely biased towards the use of drugs as well, not always taking into account the health risks. There are various arguments but he seems pretty partisan in his views. Unfortunately this often happens with people with particular agendas. He was on 'Cannabis Live' on Channel 4 (UK) the other day and was really poor in his analysis I thought, though the program as a whole didn't give a particularly in-depth analysis of the situation. I actually sent him a message about HPPD a few years ago, but surprise surprise, no reply.

Don't they give you grazy grants in Sweden to study there or abroad? I'd take advantage!

A very specific test was used ([18F]-2-fluoro-2-deoxy-Dglucose positron emission tomography), aka a PET scan testing the metabolism of glucose. It would be great if someone with HPPD could have this test carried out to see if the results could be replicated, 'hypermetabolism in the right lingual gyrus and the left cerebellar anterior lobe adjacent to the left lingual gyrus.' http://www.itcrowd.nl/wp-content/uploads/2014/07/The-Relation-Between-Migraine.pdf QEEG studies on HPPD patients have demonstrated 'control differences mostly involving temporal and left parietal scalp regions' (http://www.ncbi.nlm.nih.gov/pubmed/8912957). There is disinhbition in the cerebral cortex. The founder of this forum (David) showed the same results with a scan. More recently Abraham says, ' Regarding Ben (the guy from the Netherlands) - I don't think he has a history of drug use. He didn't have the same scan but did show abnormalities - see here from 1.56:

You said "HPPD and Visual Snow Syndrome sufferers have the same anomalies in an advanced brain scan." I'm not saying those with HPPD wouldn't show the same abnormalities - more that we don't know because it hasn't been demonstrated yet. Whilst the symptoms are (often) very similar, we can't say that we both have the same abnormalities in a type of brain scan - because that hasn't been shown yet by anyone (as far as I am aware), let alone been published as research. The researchers carried out a survey of approx 200 people (if I recall correctly) with the types of symptoms we have, and then chose the research subjects from a select group of individuals who all had a similar history and similar symptoms. People could have lied, but at this point no one knew what the researchers were up to so really there was no need to lie. In any case, we don't know. I think the scans took place 1.5-2 years after the original survey. Would HPPD patients show that same abnormalities? That's a question I'd really like answered - but we'd need at least a few people with an obvious case of HPPD to have that scan done to definitively say yes.

I've not heard of that one before but I've looked it up - it looks interesting. I doesn't look like it would negatively effect HPPD.

Are you talking about the scan that demonstrated abnormalities in the lingual gyrus? If so, as far as I am aware, no 'core' HPPD subjects have had that test (unless on their own accord). The 17 people who had the scan fit a very restricted profile - none of which (I believe) included use of drugs prior to onset.

Keppra sounds as if it is promising for you then. You are lucky in the sense that many don't get any relief at all. I find 750mg per day the minimum effective dose (combined with another med). It does nothing for my visuals but greatly helps chronic pain that I associate with HPPD. There are some flaws in that study which I've commented on previously but it is useful to print out and show your doc if you need a prescription.

Hopefully there will be better options available within the NHS for visual perception disorders in the near future. But in any case, many people from many different countries report problems with their doctors regarding HPPD. I've read many accounts of wasted money on private doctors in the states. Additionally, many of the private doctors in the UK are also NHS employees. The problem is the lack of research and lack of understanding of the disorder. It's understandable (though not necessarily right) that advice / treatment from doctors who know nothing about the disorder is going to be poor. And as with a lot of things, it depends on who you deal with and how you present yourself/research. Sometimes you just have to switch doctors. Regarding benzodiazepines, they are (understandably I think), not viewed positively by the NHS, and they like to give them to people for short-term use only.

Yeah those sources are definitely playing with fire (especially with HPPD). Honestly I'd just wait it out until UCB product comes out. Even discounting those types of sources, I've noticed differences in the effectiveness of generic and brand (Keppra) levetiracetam. How long have you been on Keppra for?

I've been following brivaracetam for a while now. Hopefully it'll come onto the market within the next couple of years. It has shown promising results in studies. That article is quite old. There's been 7 years of research into it since then. The latest press release from UCB came out one month ago: http://www.ucb.presscentre.com/News/UCB-announces-first-presentation-of-primary-data-from-latest-Phase-3-study-evaluating-brivaracetam-a-4b0.aspx But no one has tried it yet (apart from those in clinical trials). It is not on the market and is not available anywhere to buy. It won't be until UCB release it. What they are talking about in that thread is piracetam, which is quite different in how it works. Piracetam is quite easy to get hold of because you don't need it to be prescribed in many countries. In any case, as soon as it is available, I will be looking to get it prescribed straight away.

I wouldn't advise going to Boston. It will be very expensive. I don't rate Dr. Abraham as much as others, despite what he has done. He seems too willing, IMO, to prescribe benzodiazepines. You can have a phone consultation with him which would be cheaper and he can send a report to your local doctor. I don't see the benefit of going all the way there unless you cannot find a local doctor willing to help, even if they don't know about HPPD. You can present to them research - this is how a lot of people go about things. Alternatively, there is to be a new clinic opening in London in early 2015 specifically for these types of visual perception disorders. PM me if you want contact details. You can find much better information on this forum and would be better off trying out medications and non-medical treatments suggested on here, if you can get a local doctor to prescribe them. There are lots of flaws in that Keppra study by the Italian institution and I'd be interested in what they have to say, if you can kindly report back.

That's the first report (I think) of it making it worse for someone. Was it temporary?

So how did it go? I note you did not post a day 3 update.

It's different to Promethease. I guess they have to adhere to higher standards of accuracy so it's not as extensive. But it is more clear and reports are explained better. It's good if you're lazy and aren't interested in all the nitty-gritty. You can see a list of what they offer here: https://www.23andme.com/en-gb/health/reports/ Some reports like Parkinson's markers are locked until you unlock them in case you don't want to know if you have a variant associated with it.

If you're in the UK as of today you can now get health related reports (again).

That's exactly how I see. But I've gotten used to it now and so can filter it out quite well. Ghosting, polyopia - call it what you will. It seems like quite a common symptom.

I'd be very careful with sertindole - antipsychotics do not work well on those with HPPD and have been reported to makes symptoms worse. I think some on this forum get some benefit from NAC. Increased NMDA receptor activity doesn't sound like a good idea to me either. Sorry to be a killjoy.

I prefer not to take any risks with meds so research chemicals are not for me. I am glad it is helping you. Some users experience bad side-effects from Keppra but mine are almost non-existent. I little tiredness (which helps me sleep at night!) but that's about it.