chrismo

I took it, after a while my visual symptoms worsened. Whether the two are connected I cannot say for sure. And of course, even if they were this would not necessarily be a typical experience. Some peoples' symptoms have, I believe, improved when taking this medication.

I've just started clonazepam withdrawal myself. So far it is not going particularly well.

Ditto with Zopiclone. It worked for me and greatly diminished VS. But the visuals it gave me the next morning were too disturbing.

Stop taking it?

As to the first part, true no doubt. But, from the abstracts recently posted by David: "a 22-yr-old man who presented with hallucinogen persisting perception disorder and symptoms of mild depression 6 mo after discontinuing the use of LSD. Antidepressant treatment was begun with sertraline, until a target dose of 100 mg was reached. Mild exacerbations of the LSD-like phenomena were noted for 2-4 days after each dosage increase. Within 1 mo of reaching the target dose the perceptual disturbances decreased until they had almost completely remitted, and the depressive symptoms also improved. It is hypothesized that hallucinogen persisting perception disorder is serotonergically mediated, and that sertraline initially exacerbates the perceptual disturbances, but attenuates them after chronic administration." As to the second, symptoms like depression and anxiety often occur at the same time as the onset of HPPD but are comorbid rather than part of the disorder. Surely other psychological problems could be caused by, but not be part of, HPPD.

I think Sinemet is actually harder to get prescribed due to the potential side-effects. As far as I know Acetazolamide is rarely used for the treatment of epilepsy these days and I'm also unsure as to whether it will be any help. But as you indicate, it's worth a try.

Just to clarify, I've been on Keppra for longer than a month. Several now, I believe. And the vast majority that did benefit from it had done so after this amount of time. As to what I'll try next, I'll have to discuss this with my doctor at my next appointment but it looks like either Acetazolamide or Sinemet. I don't much about EEGs but I imagine the more ' thorough' the better. This chap has a lot more electrodes on his scalp than I did. If something like visual snow is centred on fewer than 100 neurons I would have thought the more the better. But as I say, I'm no expert and am just speculating.

As far as Keppra goes I am still taking it and have been for a while now. At first I thought noticed some minor improvements but I think this was just a placebo effect. My visuals actually got worse when I increased to 1500mg for the first time, but that subsided. I've had some mild side-effects, usually when I increased the dose - itchiness, headaches, possible slight rage. Overall it has not helped me at all thus far. I will probably remain on it for another month and then discontinue if there have still been no improvements. Oh, and I wouldn't worry about the EEG - its not an invasive procedure. I find them somewhat fun.

Exactly, Jay. The type of kids that would read this book are the type of kids that are unlikely to take drugs in the first place. Maybe it might of some use to parents but it's too reminiscent for me of that 'Talk to Frank' nonsense. As a teenager I would have taken no notice. And Dr A, one email would have been enough, I didn't need three.

Oh, and yes, certainly request an EEG if you haven't had one already. If abnormalities do show up it will certainly help you get your prescription, as ludwig indicates.

I can certainly empathise; it took a long time before I could get a prescription for Keppra - neither my doctor nor the neurologist I saw would prescribe it despite the studies I presented them with. It is demoralizing, especially considering that its such a well tolerated drug. Some people seem to get lucky and have doctors that when shown the evidence are willing to let them try it -it certainly seems to be the case that doctors and neurologists can prescribe it if they choose. Where that is not the case you may have to seek out a neurologist or a psychiatrist that has experience of HPPD, or at least similar brain-based visual disorders. I was lucky that a member of this site was able to help with a suggestion in this regard. I don't know if there are any members from the Netherlands that could do likewise for you. If not, do some research and email as many people as possible. Ask if they have experience of treating the disorder and what medications they prescribe if so. Bear in mind you may have to pay to see someone privately; this can be expensive but in my opinion is worth it. If only so you can stop banging your head against a wall and have someone take you more seriously- this in itself can make you feel a lot better. Also, try not to get too fixated on Keppra. It has helped a number of people to a great extent and is definitely worth trying, but there are also many people on whom it has had little or no effect. The patient testimonies that have been posted on this site can be misleading in this regard as they don't give the full picture. Just don't get your hopes up too high and remember there are other things that could potentially help too.

As I said there is a high possibility that my doctor will be prescribing me this drug - possibly in the next month, so I can report back with what dosage etc I will personally be taking. Interestingly the Wikipedia entry for visual snow says "Acetazolamide may be the premier drug for patients with the repetitive form of aura status" and the source is this study: http://www.neurology.org/content/55/10/1588.extract It says the dose given was two or three x 250mg. I'm somewhat skeptical as to whether it can help in non-aura, HPPD cases and I don't know if the dosage would be different.

Erghh. Where to start with this utter nonsense. Firstly, FYI, this had been peaceably resolved; but well done you for chiming in and opening it back up again. I'll take your points in order. Firstly, I don't know what you think I was doing other than saying that the point made was wrong and then presenting an argument. I tried at all times to stick to the point at hand and not slide into insults (not easy when you are being insulted). Indeed, all I did was challenge the point and I was then personally attacked - who was really being rude here? No, I don't think my personal experiences and theories are the right ones. The first part of this doesn't make sense. As to the second, I don't really have any theories. I just go with information I find from the research of others more qualified than myself. Secondly, based on such information and my own education if I see a post that is asserting something as fact which is not true, or at least possibly or probably not true, or someone using bad logic in their argument, I will challenge it. This, I believe is the responsible thing to do and I hope others would do the same to me. I have admitted myself that my tone can be abrasive at times but I am not trying to deliberately antagonise. I don't doubt that many people come and go from the site and that this can be a temporary condition for some. Indeed I acknowledged this early on. But, without doubt the number of people with long-term or permanent cases is very high too Which gets to the nub of why this argument started. No one can say that there are very few permanent cases of HPPD. This is false and could give someone false hope. Just to clue you up: hope = good/important. False hope = negative/potentially harmful. As Jay said "This can be a lifelong illness, and for long term sufferers, that acceptance can be strangely therapeutic." I couldn't agree more. By the way, this is the nice version. To say what you said and in that tone after all the ways I was personally attacked and only address the actual point of the debate in your last two sentances shows a fair amount of irresponsibility. Try me on this again and I have lot more to say.

Bump. http://cognizin.com/articles/the-eyes-are-the-windows-to-the-brain-citicoline-may-promote-optimal-visual-function

Interesting. Keppra and Clonazepam is the combination I am on at the moment - to no effect. How long did it take to relieve your symptoms out of interest? I was under the impression that once Keppra had reduced your visual symptoms you could safely come off it without the visuals returning, unlike Clonazepam. I guess it would be important to know which was the main cause of the reduction. Did you start with the Clonazepam and then add in Keppra? And if so was there a significant change in the visuals when you did so?

I'm just going off what you said. The highlights: "Ive tried to be positive with you and ignore your blatantly shitty attitude multiple times, but seriously? Its no wonder you havent recovered." "It just saddens me to see that this condition has made you such a bitter person." Possibly the worst, and insulting to many people other than myself: "I dont mean to sound rude, but how the hell did it take you 10 fucking years to figure this out? I had this figured out within a week and knew what was going on with me. I figured most people had the sense enough to look on the internet and at least try to figure out what was wrong." - Again, how can you reread this and say I am the one with a higher than thou attitude? Feel free to quote any instances where I was similarly insulting. I reacted angrily, especially initially, to your insults, but essentially continued to try and debate the matter at hand - something I hope we can stick to if this must continue.

I agree with everything you say, Jay. But I honestly don't think that any fair-minded reader of this thread could say there was a moral equivalence between what was said.

All at the same time? If so do you have any way of knowing if one was particularly repsonsible for your recovery?

"You don't know what causes this anymore than I do or any other poster on this website. So quit acting like you do. For all you know this could be completely psychological." Erggh. There have been many good posts by people on here and by David Kozin of research articles based on work by proper professionals. That's what I'm basing my information on. I suggest you read a few. And as I said, hope is good, but if it is potentially false hope then it can be harmful.

"I dont mean to sound rude, but how the hell did it take you 10 fucking years to figure this out? I had this figured out within a week and knew what was going on with me." Well bully for you. But at the time I developed this I was a scared teenager that did not know what was happening to me, a lot less was known about the disorder, I was misdiagnosed by several doctors (and put on wrong, harmful medications) and I did not have access to the internet. And you say I have an "heir (sic) of superiority"? Believe me, there are many others that are in the same boat as me in this regard, and you insult them as well as me with such thoughtless remarks.

"I would just prefer you had a more open minded view about things rather than pidgeonhole yourself into a corner of doom and gloom with no hope in sight. It just saddens me to see that this condition has made you such a bitter person." My mind is perfectly open to anything that is properly reasoned. And again, you do not know me and are quite wrong to suggest that I have no hope, on the contrary. You also have no right to call me a "bitter person"; I do not need your pity and I would appreciate it if you refrained from further insults.

"every other time i've made an attempt to talk to you and others in the chat room, you've had this heir of superiority and negativity about either my opinion or someone elses." Example please, because I seriously cannot think of a single one. As to your second statement, this may well be true ( in fact I believe it is too up to a point), but you cannot assert something as strong as "there are very few cases of permanent hppd" without proper evidence. And believe me, there will be many people out there suffering from this condition that are not on this website. I had the condition for ten years before I knew what was wrong with me, got a proper diagnosis, and found this site.

And I'd like to know when all these multiple times were. When you first joined the site and I tried to offer you words of help and encouragement on chat? When? Do you know how hard it is to do that when you are 10 years into this and suffer from symptoms so severe that you've made several suicide attempts? Maybe I am not as positive as I could be, but believe me that is fucking trying; for the sake of others if not myself.

My attitude is not "shitty". If I see an ignorant remark I'm going to challenge it. Of course it is important to retain hope but offering false hope is not constructive; positivity is important but people aren't going to miraculously recover just by being 'positive'; that belies a serious ignorance of the the condition and would be better posted on a New Age site rather that one try to expand knowledge of HPPD. What do you think the scientific research articles are posted on here for? Fun? No, they should all be taken down and everyone should just be 'positive'. I also note that you ignore my point- if this is a temporary condition, as you suggest, why are there so many long term members of this site still suffering from symptoms? As to the source for your information - one interview from one doctor on a website? That's hardly authoratitative, especially about a condition that is so poorly understood and I'm sure it would not represent the consesus view of most doctors who specialise in this. As to your remarks about why I have not recovered - keep YOUR fucking mouth shut. You have no idea about my specific case and have no business referring to it - I would never speculate about reasons for a member's lack of recovery, especially relating it to their 'attitude'. That seriously crosses a line.

What medications relieved your symptoms? This is possiblly the next drug I'll try after a failed attempt with Keppra.