Ghormeh Sabzi

I don't know the technical name but people often refer to it as 'pulse vision'.

I don't think drugs in terms of treatment is a big problem if it helps you function ... it just has to be the right kind of drug. Unfortunately the right kind of drugs are few and far between! Keppra is one such drug, but unfortunately whilst it works for some, for the majority it does not. I am seeking a prescription for another right kind of drug to help with my personal situation (pain management), but unfortunately it is very difficult to get old of in the UK. Theoretically there is a small chance it may also help with the visuals, but that is not the intention of trying to get it prescribed. I do, however, concur that anti-psychotics are not a good idea. Are there no other options? I have not experienced it myself but I have read lots of stories about benzo withdrawals ... I feel for you and hope you are able to come off them without too many problems. Good luck.

Since coming off, I have noticed my VS, glare from my TV and starbursts slightly more, which makes me think that perhaps it provided a very slight benefit when I was on the drug that I did not notice at the time. However, any changes were so slight that I cannot be sure of anything. Therefore, there was no significant benefit and consequently no point in continuing. If you come off slowly there should be no problems since Keppra is not known to produce withdrawals. I actually went 3 days without Keppra when at 1500mg as I forgot to bring it with me when I went somewhere and I did not experience any problems.

Just to document - I recently tried Keppra for a few months. I started at 250mg and slowly went up to 1500mg. 500mg in morning and 1000mg at night. From time to time (maybe once a week) I supplemented with a vitamin-B complex. No significant benefit to visual or non-visual symptoms. If there was any change in any symptoms, they are very minor and not particularly noticeable. There was therefore no tangible benefit in deciding to continue with this drug, so I slowly went back down and have now come off. There were also very few side effects. Maybe a little tiredness and itchiness at first, but these soon went away.

I have not read the entire thread, but a few on this forum have reported significant improvements from meditation in terms of mental state. At least one user reported visual improvements as well. The mind is a very powerful thing - think of the placebo effect for example. Actually there are cases where people have mistakenly been told they are going to die due to illness and actually do go ahead and die sometime later, even though there is nothing wrong with them! I'm glad you have found some relief. Whatever works for you. Meditation has been shown to alter brain chemistry. I'd give it a go myself if it wasn't very difficult due to my personal situation.

Lots of users have had success with theanine for anxiety.

Much more likely to make it 10x worse.

I hear you Chris. Let's see what the response is!

Some people do have different ideas on HPPD. Personally, I'd never go near any meds that aim to increase serotonin due the many stories I've read of them either a. making HPPD worse or b. actually causing HPPD type symptoms in the first place. Most hallucinogens also work by increasing serotonin, so this link is logical. John Halpern is indeed a HPPD researcher and has published papers on the subject. Dr Abraham, the so called leading HPPD expert, has also in the past said that he has no problem treating patients with serotonin-based anti-depressants if he feels the situation necessitates it. From what I understand, he also nearly always recommends benzodiazepines to patients, which is a practice that I don't agree with, since it simply replaces one problem with another. I know Dr Abraham has done a lot for the understanding of HPPD, but I do not think as fondly of him as many. Anyway, the point is that different people have different ideas. To Mr hppdmd, perhaps you could provides us with more information as to the symptoms which these medications you describe aim to alleviate? Visual and/or mental and/or other symptoms? Have you actually spoken with Halpern or have you simply read a few papers he has published? How many HPPD patients have you treated and what is your success rate? Do you aim to treat HPPD or do you aim to help people deal with HPPD? These are important questions.

http://hppdonline.com/index.php?/files/file/57-1589-levetiracetam-efficacy-in-hallucinogen-persisting-perception-disorderspdf/

I'm sure that would be beneficial - thanks!

Thanks for sharing your thoughts and descriptions. For what it's worth, I thought your posts were very articulate and easy to read and take in. I think organisation and good sleeping patterns are very beneficial regardless of anything else that is going on, so if you can get that side of things sorted out I think it will be very helpful. As onedayillsailagain pointed out a lot of the lack of activity is due to problems new users are having getting their accounts validated. Hopefully this can be sorted soon and the forum will become a bit more active.

It might be hard, but try not to focus on it or beat yourself up - this will only make matters worse. Try and relax and stay calm if you can. Hopefully things will improve.

I am determined to complete my various lists and begin my large survey before September (it's very time consuming). There's loads of stuff on this site I haven't had time to go through on this site yet. I'll get through it all eventually.

Thanks for the info. Someone recently posted this on FB: Wiki: Unfortunately:

Thanks for the translation!

HPPD is also called 'flashbacks' in the official DSM diagnostic criteria. The flaws contained in the DSM diagnostic criteria is something I have mentioned before. Actually the DSM have been criticized in many quarters for their diagnostic criteria of other disorders as well. The study available for download on this site is the same one I have. I purchased from www.elsevier.com or one of its subsidiary sites. It is possible that a full article was never published (only the abstract). Dr Abraham initially only released the abstract of his study before publishing the full article months later.

I think some people also consider flashbacks to mean vivid hallucinations as opposed to visual abnormalities. There is also a lot of relevance to the borderline cases you mention. My survey will probably be a couple of months away at least. I will try and complete before September as that is when I go back to my studies. It is a long process if I want to do it properly (I am going through the thousands of old threads on here and the visual snow forum for research). Obviously I have to work as well so time is limited. I don't know their reasoning for dosage and times. I went up slowly (starting at 250mg and increments of this amount), and also took a vitamin-B complex at the beginning as well. I will post a thread when I am done but I have experienced minimal side-effects (or benefits). http://www.neurosoup.com/pdf/halpern_hppd.pdf

It is difficult to know what they mean without a full article explaining symptoms and providing other information. I did send an email of complaint but no one ever responded to me! The success rate does seem incredible, which makes me wonder what symptoms the patients had and whether they are applicable to the majority on this forum. Whilst there has been some success with Keppra documented on this forum, the impression I get is that for every person who it does work, there are a few for who it does not work, which is not consistent with the study. Additionally, whilst some may experience benefit, not everyone becomes 'flashback free'. The meaning and context of use of the term 'flashback' varies depending on who is writing the content. http://www.drugscope.org.uk/resources/drugsearch/drugsearchpages/flashbacks

I paid for the full Keppra article over a year ago but received only an abstract (which is posted). I'm not sure a full one is available. It is not fully clear but it suggests that if you are going to receive benefit, this will usually happen within 90 days. Some members have reported it taking 2-3 months to see benefits from Keppra, which consistent with this. What is not clear is whether they are talking about HPPD in relation to flashback hallucinations of their experience of their high, or whether they are referring to flashbacks in the context of of the persistent visual disturbances / abnormalities (what HPPD is commonly thought as). This immediately highlights problems with the DSM diagnostic criteria and the confusion it can cause. (edited due to terminology error)

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.

I don't speak Dutch, but it appears to be a video where they talk about individuals experiencing visual snow following drug use.

Maybe look into bupropion. This may be a safer anti-depressant as it works on the dopamine system rather than the serotonin system. Some members on this forum have used it without problems. You can do a search for 'Wellbutrin' (its trade name).

There is not a single Lyme test that is 100% accurate, and so Lyme is a clinical diagnosis based on symptoms rather than something which is fully tested for. Tests are used to support a clinical diagnosis. I don't know about all the different tests but I do know the IGeneX package (around five hundred dollars if I remember correctly) is well respected because they combine a number of tests to give an accurate diagnosis as possible. From what I know it is the only one I would trust, although if you visited a Lyme forum you could get some better advice. Yep, my rash looked something like that. I also saw that on Wiki a while ago. Only about 40% of people get the 'bullseye' rash I understand. However, here in the UK the guidelines state that 90% of people get this rash. The NHS is much criticised in relation to Lyme, hence the need to go private for accurate diagnosis. In the area which I live there have been cases of Lyme and so it is possible that I contracted it, even if unlikely. Unfortunately there is only so much money to go around, and I will be switching to part-time work soon, making such tests even less affordable. But if I can afford it at any point then it is on my list!

Mine is more like the third, a real visual mess!