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Do you think we will ever have a cure?


windscar

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I think it is actually pretty likely, or at least a reliable treatment. From the research I have come across, it is easy to tell that not much is known about sensory disorders, because of their relative obsurity and lack of true malignancy. But, with furthering tech and more understanding about how the brain processes sensory info, along with an increased presents of the disease because of the internet, I believe that there is hope. With dedicated research about this and similar disorders, about the neuropathy of sensory symptoms, I can see it being a very easy disorder to treat.

But, I think it is best not to rely on the future, just remember its uncertain nature. The place where you are now is not the place you will be 5 months from now. Things change, and even more promising, things tend to seek equalibrium. If the disorder doesn't you will.

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Did is a great respons. Threads like this won't make people to move forward, same goes for the thread "What would you do if..."

All these hypothetical questions will only hold people back and unable to accept what they cannot change instead of focusing on what is possible to change.

There are people who do comprehensive research in this area, not only HPPD but also as Broken Saint says, in trying to understand the brain better cuz there are other, more common, neurological disorders out there.

If you feel like contributing to the cause of awareness/understanding to HPPD, please do so in the way you can but also remember to try to live your life and take care of yourself where you are now.

I will soon start working and i will probably start giving monthly payments to research about the brain. If those money will be used in trying to understand Alzheimer disease then there will probably be something beneficial that comes out of it to HPPD sufferers. That'll be my contribution to the cause since i do not have the skill or education to do the work that David S is.

But, I think it is best not to rely on the future, just remember its uncertain nature. The place where you are now is not the place you will be 5 months from now. Things change, and even more promising, things tend to seek equalibrium. If the disorder doesn't you will.

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Def not cure every symtom. But maybe we'll come accross meds that help dp/dr and meds that might helps w/ anxiety w/o all the aweful side effects. I can live w/ visuals no problem, but If my anxiety and dp/dr were taken away that would be a cure to me.

But NO if they can't cure depression how could they cure this.

And what Gill said above is true cause my hppd has somewhat diminished and I'm able to cope most of the time!

Later Bin Laden :D

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I respectfully disagree, these visual symptoms, this snow, this movement, these afterimages, are things, things we do not quite understand, the thing about lacking understanding is that in the future this lack of understanding can change. However, dp/dr, anxiety, these are feelings, these are subjective experiences, I am not saying that dp/dr or anxiety is nothing more than a bad mood, but feelings are complex mental states, sure, anxiety is controlled by specific mechanisms in the brain. You can take pills to regulate and manage anxiety and depression, this may be true with dp/dr as well, some chemical imbalance. But, when looking at dp/dr anxiety, depression on a greater scale, all of these are processes and results due to the inherent qualities of the brain itself. How can one cure anxiety? How can one cure depression? How can one cure something that is only defined by a debilitating effect of something everyone experiences? Many people get over dp/dr, anxiety, and depression.

HPPD, however is a malfunction of a part of the brain, whether it is the thalamus or something else, it is caused by something going wrong, some sensory gate being overstimulated, some kind of seizure, or migraine or whatever. There are treatments for malfunctions of the brain, seizures medication, psychotic disorder medication. Sure, these things are not cured, per se, but they are treatable to the point where the symptoms diminish greatly over time. We do not have this with HPPD, nor many other neurological disorders. At some point, it will be treatable, same with the other neurological disorders, like Alzheimer's, MS, Parkinson's, etc.

This may not happen in our life time, but it certainly can.

Also, dp/dr could also be caused by the visual symptoms and anxiety, when I feel more dp/dr'ed is when the walls are moving, or text is bouncing, or afterimages are up.

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I understand what you're trying to say. But personally, all my visuals, dp/dr, escalate when my anxiety is high. When my anxiety is under control hppd seems easy to cope with and the visuals die down.

I'm not one who know's too much about the chemistry or science of the brain and what all receptors control, I just simply know anxiety amplifies hppd 100 fold.

Also, I haven't found pills that regulate my anixiety, depression or dp/dr for that matter. The closest thing that works for anxiety is benzo's, which come w/ tolerance and nasty long term side effects.

Depression, I've never come accross one pill that helps me with it. Only exercise!

DP/Dr the only thing I've found that helps this is living a constructive life style, but it still pops up quit often.

If I was granted 3 wishes I would only need one. I couldn't imagine how greatful I would be living hppd free.

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I've seen some of my visuals begin to diminish only recently and I've had this for 2 years. It seems to me that HPPD is the cause of, not damaged, but altered neuronal circuitry in the visual cortex. In my opinion, the alterations effect the response time of GABA mediated inhibition of excitatory currents that, in an HPPD patients brain, continue to circulate much longer than normal. Some of the symptoms I have (visuals) that, for me, are evidence for that explanation, like afterimages, trails, ghosting, etc. have begun to dissipate. The ghosting is not as pronounced, meaning the double imagery is not as big. The trails aren't as long in my field of vision as they once were. The afterimages do not linger nearly as long as they used to. This, to me, are signs of natural improvement by the brain to fix a broken valve, so to speak, in the visual cortex.

Another argument for easy treatment is that when I combine certain drug combinations (I don't advocate anyone doing this at all so please don't do it) like opiates and benzos, my visuals nearly vanish. I mean almost all of them. The only one that doesn't seem to be affected by any drug is the visual static and that seems to be the visual manifestation of the ongoing excitatory currents in the visual cortex that is always there without needing visual sensory excitations from the environment to manifest into a visual symptom.

But having said all of that, I agree with Merkan. Unless you are devoting a career to the study of this, like David, I think it wise not to dwell on hypothetical questions and especially not on the board where it can snowball.

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Shaolin>>

On the other hand, i found your theories interesting and hopeful. You do seek evidence in the existing litterature and though your conclusions are subjectice they are atleast derived from empirical research applied to your rational thinking. That does not make it "true" but interesting cuz its not just out of the blue guessing. I would encourage you to keep updated and a laymans finding has value aswell.

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Right on, it is good to quantify the experience into scientific terms. When your eyesight and therefore your perception of the world is altered, I believe this is what leads to the unsettling parts of hppd. If a man breaks his arm, or looses function of his legs, this is obviously serious, but mentally, he is the same. His world does not look different, behave differently, he has a physical ailment, something easily quantified. HPPD suffers, as well as suffers from similar disorders, something is physically wrong with us, but we cannot separate what is physical from what our minds interpret it to be. I think this is where dp/dr stems. Or world moves in ways our minds have never experienced before, there are flashes of light and patterns where seemingly there is no possible source. This, along with a possible phyiscal link to anxiety, creates such a dysphoric mental state and that is what makes us feel so weird.

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Did is a great respons. Threads like this won't make people to move forward, same goes for the thread "What would you do if..."

All these hypothetical questions will only hold people back and unable to accept what they cannot change instead of focusing on what is possible to change.

Yeah man I was having an odd manic day when I posted that, totally not helpful. How are you anyway man I havent spoken to you in ages is the Keppra still working out for you?

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I've seen some of my visuals begin to diminish only recently and I've had this for 2 years. It seems to me that HPPD is the cause of, not damaged, but altered neuronal circuitry in the visual cortex. In my opinion, the alterations effect the response time of GABA mediated inhibition of excitatory currents that, in an HPPD patients brain, continue to circulate much longer than normal. Some of the symptoms I have (visuals) that, for me, are evidence for that explanation, like afterimages, trails, ghosting, etc. have begun to dissipate. The ghosting is not as pronounced, meaning the double imagery is not as big. The trails aren't as long in my field of vision as they once were. The afterimages do not linger nearly as long as they used to. This, to me, are signs of natural improvement by the brain to fix a broken valve, so to speak, in the visual cortex.

Another argument for easy treatment is that when I combine certain drug combinations (I don't advocate anyone doing this at all so please don't do it) like opiates and benzos, my visuals nearly vanish. I mean almost all of them. The only one that doesn't seem to be affected by any drug is the visual static and that seems to be the visual manifestation of the ongoing excitatory currents in the visual cortex that is always there without needing visual sensory excitations from the environment to manifest into a visual symptom.

But having said all of that, I agree with Merkan. Unless you are devoting a career to the study of this, like David, I think it wise not to dwell on hypothetical questions and especially not on the board where it can snowball.

This seems pretty interesting, from most cases where peoples symptoms have dissapeared/imporved visual snow doesn't seem to leave or it improves but is somewhat still noticeable and that is in most cases, pretty weird. Has your dp/dr also improved? Opiates, benzos and alcohol are great for dp/dr but they haven't been great in the long run.

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What Shaolinbomber is experiencing is what, I may say many but don't know, have had happen to them, and to me.

I have the longest episode of hppd symptoms I ever had now. With more symptoms I ever had also.

But two time before this started again, it got better after 2 1/2 to 3 years; the after images, streaking lights, halos, ghosting ... went away to where they were unnoticable..i.e. not there anymore if I could not see them even looking to see them. The only thing, was when things moved past me above a certain speed, I did not know what it was supposed to look like to "normal" vision person.

My symptoms include a kind of static now for years (more like phophenes, which look lik vibration in the light and definately like mini/micro phosphenes over my entire visual field in the dark)

Just as a side note, I have had a few sessions of myofacial release on my upper body, neck, jaw, and after that, for a while my visual field was yellowish - from the work on my neck.

Final note, before the work, my vision has become worse for reasons??? All the starbursts halos and most afterimages had gone away but over the last few months has returned. Any comments on this?

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How long have you relapsed? Did you smoke or anything during your time of remiss?

This relapse, the reason I came to this board, started slowly April/May 2003. So 8 years.

No drugs when it started. It started after I over did it on a hike and also had an arguement with a friend that same day. Physically and emotionally stress. No meds at the time either. I stopped nuerontin for fibromyalgia a few months before as it was contributing to major weight gain.

The symptoms started slowly. I first noticed trails on LED light which were always the easist to detect. Then the after images go worse.

Over a year later, near end of 2004, I woke up and there were like dots in the black dark room. That then progressed to vibrations in the light and then the entire night vision being phosphene like. Never had that in my previous episodes. Was on some medications at that time before I woke up. BP meds and anti hppd meds (hah) and a 1/4 pill muscle relaxor.

Then in 2005 my ears started to ring. And like the static like vision has not got any better. The ringing is worse now than ever.

So this relapse is very different and has been for much longer. I think it has a mechanical trigger component and a pressure/pulling on some nerves or groups of cells.

I had been unhopeful the first two times, but it got better in a couple/three years.

This time I can not see how it could be like this or if anything could reduce symptoms.

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