Ghormeh Sabzi

Do you mean when you upload it? Does it say the file size is too large?

Because one of the biggest complaints of Keppra is tiredness or fatigue. B vitamins as a whole counteract this. I would think a B complex as a whole would be sufficient. You might not even need to take it every day.

Start with 250mg per day for a week. Go up slowly. Add 250mg per week. If you receive adequate benefit at lower does then stop there - you don't always need to go to the higher doses. Either evenly spread them out during the days (e.g. 250mg morning 250mg evening) or go top-heaver in the evening (i.e. 250mg morning 500mg evening). Make sure to supplement with a vitamin-B complex to help avoid side-effects. Let us know how you get on!

For me a B-complex would be preferable rather than specifically B6. But I would recommend leaving Keppra until you complete your final year of university. If you are able to manage now and are doing well then just concentrate on your studies until they are completed and then you can experiment further when you have free time and no commitments. You won't get a second chance of repeating your final year (just like you won't get a second chance of pre-HPPD!) In any case, it may be the case that you just can't tolerate Keppra. Not everyone can. Whilst you will get used to the side-effects over time, 250mg is a low dose to be experiencing considerable lethargy. Are you still on it? How are you doing now?

If you are able to travel to another country then that would be a more sustainable solution. Are you able to afford this?

I agree with Chris. I don't think this is the way to go. Which country do you reside in?

Re-tested in the UK (previous blood sent to the US) and it has come back negative. Will see if I can get another test in a month or so.

I don't know about dosages (what does it say on the container?) but a few on here have had good success with it in terms of helping anxiety, and so it is certainly worth a go - especially since it is only a supplement. It is a sensible start.

These are not my experiences - I copied and pasted what someone posted elsewhere.

Some comments from the VS Facebook group.

I get blobs of purple in my vision at night after looking at bright lights such as an ambulance whizzing past. Much more often during the day I get green in my vision.

To be honest, I wasn't looking for an NMDA antagonist - it is merely a drug which I came across in my quest to find pain relief. I'm having an injection next month with the aim to become drug-free (the injection may nor may not work). But I had no fear in taking it as I did not consider blocking the action of glutamate would be a problem. As an aside, intellectually, I have experienced no problems. I have my own ideas - but I am taking the long route to figuring out this disorder. I am not thinking about the types of things a lot of you are initially. I am starting from the beginning and expanding my overall knowledge of the human body and science in general before trying to work out specifically what has gone wrong and what is the solution, as I believe this is the best way for me to find answers. I don't fully understand all the articles and what-have-you that I read because I don't have a solid grounding of the basics. I like to understand things in-depth. For this reason, I am studying science-based subjects initially, and will then go on to study the brain, before eventually focusing on the mechanisms behind HPPD and PPVD. From my point of view, I don't think a quick-answer is possible. Patience and extensive study is required.

The double vision (or more) for those with HPPD is generally distinct from other forms of double vision. As such, prisms will not work for most. Indeed I tried them myself when at an eye hospital and they did nothing. Under certain situations I can see the same image half a dozen times.

Tinnitus is still present, although to a lesser extent. The uridine may or may not be relevant to the development on my tinnitus, since it is common among those with HPPD anyway.

Osdia, I don't want to offend you, but I've seen you mention you've taken drugs a few times. You have HPPD and as such you should not touch drugs again - ever. Of course you already know this yourself, but I think sometimes it helps to be reminded that you have done something stupid. You put a lot of effort into getting better and then you compromise that by doing more drugs. I don't get it?! If you want to get better you have to stop drugs completely mate! The same goes for your syntheso. Although it does interest me that ketamine made your symptoms worse. I have no fear using NMDA antagonists (I'd be more concerned with agonists). I'm currently on an indirect NMDA antagonist called flupirtine. That, along with Keppra, is providing significant pain relief. Anyway guys, as I say, I don't want to offend, I just want to see you get better - and stay better! There are endless accounts of further drug use making symptoms a lot worse permanently. It's really not worth it.

Osida I saw you mention uridine in another thread as well. I tried it a long time ago and personally, it provided no benefit. In fact it coincided with the development of tinnitus, which I know some others using uridine also experienced as well.

Kellen - you can increase the dose but do so SLOWLY (give it a week before increasing). Otherwise you may experience some unwanted side-effects. It has been suggested that the benefits of Lamictal increase over time and so it requires a long-term trial. That you are experiencing benefits so soon is very positive.

I'm getting a whole load of bugs and new ones present themselves all the time. They are quite easily fixable. The best thing to do would probably to simply re-install the forum software from scratch and restore the database. Would only take an hour or so and would probably fix all issues. The company behind the software even offer support if an active subscription is present.

Inverse agonists interest me a lot but none are available. Some recent (and to me surprising) comments on pizotifen on the visual snow FB group:

In my opinion, HPPD is completely unrelated to schizophrenia. But that doesn't mean you can't have HPPD and schizophrenia. With you already having moderate HPPD, and the potential genetics for schizophrenia later on in life, then I think it would be sensible to cease all drug use, which as syntheso says, can reveal schizophrenia that you may or may not be predisposed to. Don't they say that if you're worried about being schizophrenic, then you aren't?

etardnow - it was the Western Blot. I had an ELISA test two years ago which came back negative - but that test is extremely unreliable. Whilst my most recent blood was sent to the States to be tested, I am now going to have the Western Blot done again in the UK to confirm (this time I don't have to pay as it is covered by the NHS).

I think my HPPD and Lyme may be intertwined, if that makes sense. That is - they may reveal and aggravate each other. I'm seeing my regular Doc today. I'll have to get referred to an infectious disease doctor I think.

Symptoms I have include: Visuals (visual snow, afterimages (minor and possibly improved), glare, starbursts, halos (including the colours of the rainbow contained within!), phosphenes of star like lights that appear for a second (improved and rare these days), flashing and blobs of colours, ghosting (along with VS my most annoying visual), blobs of black upon waking (improved and rare these days) and some other minor visuals). Non-visuals (tinnitus (improved), pain, involuntary movements like spasms / twitches / tremors (I've been told I have dystonia)). I have also just tested positive for Lyme disease.

I have yet to decide how to proceed but I thought I'd let the community know. I got tested due to some unusual symptoms that I have as well as a history of red markings on my legs that lasted a month a couple of years ago.

To update - I have gone back on the Keppra at 750mg per day. I have found massive relief of my worst symptom (pain) when combined with another drug called flupirtine. I would say at least a 60% improvement. In hindsight, I'd say each drug on its own provided a 20% relief of pain. There is still no effect on visual symptoms. The pain may or may not be related to the HPPD - but all my visual and non-visual symptoms occurred at the same time so it would seem possible there is a relationship, even if this symptom is uncommon for those with HPPD (although a higher number on the VS Facebook group report symptoms of pain). I will stay on this combo (if my doc allows) until late November when I will have a anesthetic/steroid injection in the bursa between my hamstrings and buttocks as this is mainly where the pain is located (suggesting that the pain is possibly as a result of something called ischiogluteal bursitis). If it is ischiogluteal bursitis (I hope it is) then hopefully the injection will cure it and I can go med free (I can deal with the standard HPPD symptoms until a reliable treatment is found).