windscar

I'm from Brazil too, where are you from?

Hello, updating after 3 years of HPPD. Things are a little worse health-wise, but so slightly it could be just me. In general, I'm very stable. I have, though, a few solar retinopathy spots from accidentally looking directly at the sun (for a millisecond) in two different occasions. Those are dark spots on my vision that I can see when I blink. Seems like either HPPD for some reason made myself much more sensible to that kind of problem, or I just got unlucky. In general, my symptoms are: photosensitivity (I simply can not stand looking outside without a sunglass), ghosted images (classic example: three moons), prolonged afterimages (I can see a burnt shade of anything I look at, even when I don't look at it). I'm keeping my occupation as a programmer and engineering student, great grades in some courses, average in others, in general I don't think it has affected much my academic performance other than the obvious daily HPPD issues I have to deal with. I've ended up my relationship back when I got HPPD... it wasn't the same, I was really depressed in the beginning and didn't want to see her anymore and after 6 months it just wasn't. I'm with someone else now and we're doing great. Relationship with family is fine too. Of everything I've done so far, the single thing that helped me the most was buying personalized, extra-darkened sunglasses, and wearing them all the time. When I'm not with one of those, I actually use two sunglasses to drive in daylight, it seriously helps a lot. Also, I've not touched a single drug since HPPD. I really mean it - even caffeine is completely cut from my life (and I didn't drink anyway). I'm kinda afraid of meds after LSD - after all, it was claimed to be "one of the most inoffensive drugs" and look what happened. I didn't really expect to improve much, just hoped things wouldn't get much worse so... that is pretty much exactly what happened. All in all, I'm fine. Well, that is it. Just wanted to share this little report here, since that kind of thing helped me enormously when everything started. Stay strong guys, see ya. Edit: also, I haven't been following the news since a few years, so, if anyone could update me with what happened in the last 3 years, I'd be thankful!

http://www.popularmechanics.com/science/health/med-tech/this-app-trains-you-to-see-farther-16506910 Nothing to do with HPPD, but that hit the first page of Reddit promising to improve your vision and looks really legit. Worth a try?

For those who don't know, Dr. Abraham has released an e-book (link). It's not very expensive. I can't read it myself as I'm too busy with work and research, but I'll buy it for someone I know that could benefit from this knowledge. Also a way to thank Dr. Abraham for his efforts on HPPD.

Could some of the most acknowledged users elaborate a little bit on this one?

I'd just ask you to be very, very cautious, Jay. This could destroy your life. Regardless of what they say and how safe it seems, remember that it's a surgery based on incomplete science (as anything involving our brain). I'd not do it without, at least, consulting a few patients directly and asking them about the results and if they feel different after it. Remember: experts make huge mistakes. One word, lobotomy... But if they have cutting edge methods to map epilepsy, this could reveal something new about HPPD. So, think well about surgery, but, for a community sake, at least consulting them, taking scans and seeing what they've got is a great idea! May I ask you to elaborate a little bit on this one? What exactly does the qEEG show? Is there any technical explanation of this?

g29 are you better from the initial complaints of this topic?

Completing 2 years. It would be unfair to say I've not improved anything. I'm much more stable emotionally, have learned to deal with the symptoms and some weird stuff apparently disappeared. I'm a little worse visually, though, because of a burned spot on my left eye I got from looking directly at the sun and some ghosting I didn't have. Well just posting for the report. Thanks the community for making it so much better for me through that time. (=

Completing 2 years. It would be unfair to say I've not improved anything. I'm much more stable emotionally, have learned to deal with the symptoms and some weird stuff apparently disappeared. I'm a little worse visually, though, because of a burned spot on my left eye I got from looking directly at the sun and some ghosting I didn't have. Well just posting for the report. Thanks the community for making it so much better for me through that time. (=

Why I find this important: suppose, for example, that we find some research about the 'afterimages' phenomena, which describe why/how it happens, with very specific information on it's mechanics. We could, then, find out which neurons/transmissors are involved on it in order to develop specialized remedies that will selectively inhibit them, healing the problem. (This is just to illustrate the idea, not trying to be technically correct.)

I'd like to point out that it's very unlikely that a complex system such as the brain vision can be described by it's underlying structure alone (neurons and neurotransmissors). That is like trying to understand how Photoshop works by learning the iteration of transistors. It's a separate layer of abstraction. Learning about the vision mechanics itself is much more important, and I believe there is some good literature on that. Have you guys ever heard of those machines used to ? While very primitive, the technology works. Maybe we could research about that tech, in order to find how it was implemented and what kind of studies it is based on. Whatever they are, they certainly do contain very useful information.Not sure the community will agree with that, but, if anyone does, please do that for us. Anyone can do this. I could do it myself, but I'm too busy with work ATM. tl;dr forget about neurotransmissors for a moment and lets find papers about the mechanics of the vision instead!

Visual it's very different... but honestly, reading my comment I realized I sounded very unthankful, that's not the case... just pointing that this kind of trial does not have the same scientific rigor that is often desirable, but, yes, it is a great step and very good news.

I don't think open-label trials work for anything... anyone of us could've conducted one, honestly...

-mg you are awesome, please keep doing what you are doing. I can't help you right now because my time is filled with study/work, but I can help you and I will read everything that you are posting when I'm done with those. Thanks!

Not good but urgent. Is David still accessing the boards? Where he's been?

@Jay1, I understand but this is a big loss to the community.

Honestly, I think it is a little bit selfish to do it. There are not many HPPDers around. This community needs people and every single one counts. I can understand if this site is interefering with your life, and thank you for what you have done / wish you all the luck; but, if it is not, I think you should consider coming here at least once or so a week, keep up with the activity and answer a few threads. This already means a lot.

Again, can someone confirm that? I thought we had already tried those. If we didnt we should.

I like to be realist. My vision is definitedly a bit worse from when I got HPPD, some 1.5 years ago. My life improved a lot, though. I am no specialist but I understand things well enough to have a strong belief HPPD is not something that gets better with time. It does not make any sense. Whatever it causes to our brain, I cant see it repairing itself. The visual cortex just is not for that. It is not plastic at all. Why would it be? Vision processing is not supposed to be touched. Anectodes here only confirm that. I have, though, never seen someone who has not gotten better with time, in a sense of adapting to the symptoms and dealing with them. Nor of someone getting MUCH worse. Never seen very several mental symptoms from HPPD. Older hppders are always telling how things will get better with time, even if the vision itself does not. I guess I believe that. So I guess theres no reason to worry about your vision that way. It is not likely it will get much worse; if it does, it is very very unlikely that it will get bad enough to disturb your life considerably; and the other things do tend to get better.

Me too.

None of us is going insane. *hugs*

Some say it does, some say it does not. Does it make it worse for you? And is the worsening temporary or permanent? Does this happen with passive smoken? Is that a problem for you?

David, if you are having trouble with the hosting, please tell us, we will certainly help. But please, dont let this site go offline for too long. It is very important for many of us to deal with our condition.

Man our understanding of the brain is so primitive... look at that... sigh...

I was expecting that. Thank you Boogres. Again: cases of cure = 0. Dealing with it is the current solution and studying it is our hope of finding a solution.