VisualDude

Always exciting to hear about a new drug (though this one has been around for decades). Axonal regeneration is always an eye grabber. Unfortunately this is limited to peripheral nerves, not the brain. Still, since it changes cholesterol use as part of its repair mechanism, theoretically it might be useful for primary demyelination (damage to axons but not destruction of them). This is the main article I found: http://www.pnas.org/content/105/51/20505.full.pdf+html But there are others testing the psychological effects on humans (some even a single dose). With so little reported about it – this is annoying/discouraging. Especially the report of liver toxicity. The above link reports: "However, TSPO ligands experimentally shown to exert beneficial actions on the peripheral nervous system have not found clinical utility, and possible side effects are a concern for their clinical use". Perhaps this is why it is not available in the USA (not FDA approved). [However FDA approvals are somewhat politically driven – afterall, this med is from France, not by local ‘big pharma’] Amazing that wiki claims "It is more effective than lorazepam as an anxiolytic, and has fewer side effects" At first glance this sounds great. But effectiveness depends in part on relative dose and on persistence. The latter does seem superior from reports. But one must carefully weigh liver effects. Still, this has important potential and any liver concerns could be modulated by minimal dosing and liver support. It is now on my list to try. Thanks for the scoop!

I've always noticed that as soon as they put numbing drops in my eyes, vision improves. Ghoasting is least outdoors in bright light (small pupils) and worse in dim light - especially strong contrast such as looking at a LED clock across the room. It is so hard to know for sure what is going on. Certainly, touching my eyeball could be shifting the shape (even though gently) or encouraging subtle peripheral signals. Given that non-HPPD people can create mild CEVs by touching their eyes, it is possible that HPPDers who have psychedelic symptoms (like CEVs) have overactive or dysregulated neuronal systems [ overly 'creative' as it were ]. At any rate, questions like these can best be analysed by lots of user feedback...

Lugwig, thanks for the info. Another question: Since you know you have an astigmatism, the question is - did it get significantly worse with HPPD? Since astigmatism is a physical charactoristic of the lens, then it should remain unchanged with HPPD. Another posibility is that the lens is not being pulled evenly by the muscles that control it (don't know if this is just a theory or an actual thing that can happen ... but, just as the back muscles (trapezius and latissimus dorsi) are controled fibre by fibre (not as a whole) this could happen with the len) It seems significant that in my case that the bad eye (with most ghosting) is also the one with sluggish dialation. This dilation problem resolves by increasing Gabapentin. When dilation is particularly notable (as in the picture below), so is an abstract anxiety that is bad enough to curl one in a ball (which also resolves by increasing Gabapentin). However, the ghosting is not affected by Gabapentin. If I see dilation in the mirror, then I increase Gabapentin (if not then suffering will follow) - so this is my 'canary'.

Finally found what the eye tremor is called -- Ocular microtremor (OMT) And they have instruments to measure it. Mainly to determine if a person is really brain dead. Also, in theory, to monitor anesthesia. And it changes with Multiple Sclerosis and (you guessed it) Parkinson's disease. http://en.wikipedia....i/Ocular_tremor http://arrow.dit.ie/cieocon2/7/ http://www.ncbi.nlm....pubmed/19256709 http://jnnp.bmj.com/.../66/4/528.short I doubt I'll find someone who is able to measure it and see it is causing ghosting - but will try. It could theoretically improve with anti-seizure type meds and other calming meds (perhaps the experience with Keppra). It could theoretically improve with Sinemet but has not for me. The hunt goes on ... So again, the focus (pun intended) of this thread - Anyone have experiences with meds affecting ghosting?

Are trails the only symptom getting worse? Is Klono the only med you are using? How about alcohol use?

I have also seen a rainbow contained within a halo when looking at the moon I found that the rainbow and the halo (as shown above) were due to an 'oily' film on the surface of the eye. The only things I've found helpful are a topical antihistamine called Patinol (which works for a few days) and dopamine agonists. Is your derealisation linked to your ghosting? I.e. do they only clear up together, and not seperately? They may be linked. My DR is mild compared to many who suffer it. What was the experience with Keppra? Did the ghosting return whilst you were still taking Keppra, or did it return once you stopped? Keppra improved DR for a while about an hour after taking it. My work with Keppra has been difficult. It seems only to work when combined with Gabapentin - but it is still being evaluated. This user over at the VS forum reported an improvement on double-vision based upon Coq10... Interesting info. People with Parkinson's are big about taking a lot of CoQ10, based on some research. In general it is great stuff. Hadn't heard of it helping vision though. almost as if i were going cross eyed (dont know if i am) and one eye was starting to shift right and the other one stayed... You might actually have some mild 'binocular conversion' problems. I notice that if I gently touch the side of the eyeball in the right spot, the amount of ghosting greatly reduces. Currently am trying to confirm if this particular symptom is caused by a dysregulation of eye tremor. Basically, eyes vibrate about 130 Hz very slightly (about the diameter of a photoreceptor). This vibration is either to help photoreceptor chemicals to regenerate or because signal from receptors to the brain (through the optic nerve) are mainly "phasic" (trigger by change). If this vibration is of much greater amplitude than it should be, then ghosting would be a probable symptom. Since touching the eyeball can still/quite this vibration (and other involuntary eye movements such as drifting), then perhaps this is the reason it reduces multiple images for me. Of course, it is impractical to walk around with one's finger poked in their eye. Again, this kind of stuff reinforces that for some, there is a link between HPPD and reduced dopamine function (which is necessary for cognition and motor control)

It seems to me that 'burn in' and 'negative afterimages' are the same thing, though perhaps there are multiple kinds of negative afterimages. Increasing dopamine greatly improves this symptom - though I've never had any sort of burn in beyond a few minutes. Unclear is the role of dopamine. It is known to adjust signal level from the photo-receptor. But generally, burn in involves the time it takes for the chemeicals in photoreceptors to regenerate. There is such a high metabolic need in humans that we actually have "inverted retinas" (neurons in front of the photoreceptor). For all receptors to regenerate (such as snow blindness or bombers wearing red googles in preperation for a mission) takes about 45 minutes. So a 4 day burn in must involve recovering from an injury (which staring at the sun might cause an individual). Two years, WOW. But even that healed -- something we all should note positively regarding recovery from HPPD.

Sounds great really. It is harmless and there seems to be lots of positive reports with neurological stuff. Don't know why it would be much better than an oxygen concentrator, but of course, pressure does alter blood chemistry, not just oxygen level. The units I saw were only about 4 psi (11 feet).

Just tried this a few days ago. It was only one brief session, about 30 mins in a chamber. While it took a while for the ears to adjust, the only effects was calm and relaxing. Didn't notice any visual changes connected with it. Of course, the 'Xanax' effect (calm and relaxing) is a plus for most anyone Usually you should have 1 hour a day for a couple of weeks. So, obviously, it is too soon to know. But since I have diagnoses brain injury, it should be a good thing to do. However, $18,000 for a small chamber is money I don't have. Perhaps if I can find enough demos, I'll benefit

The key about genes is "gene silencing". This is an underlying reason for cancer. As for HPPD, it seems to happen to most in a matter of hours, days or weeks - a model that mimics (if not IS) nerve degeneration. Genetic 'damage' usually take much longer to develop issues. Genes would probably be the main factor in determining "susceptible individuals". But malnutrition, toxic exposure, and/or emotional abuse also weaken even otherwise strong people - these are environmental factors. If you got all of the above, then life can really get shitty. It seems like "gene therapy" is a buzz word that can mean all sorts of things. Some speak of stem cells for developing new neurons - this is more than gene therapy. But reactivating silenced genes has done wonders, such as Burzynski's work with peptids to reverse terminal brain cancer. The principles of lifestyles changes (exersize, diet, ...) is to change the way the body is operating to maximize health - this involves "gene expression".

The main relevance is that person A drops acid 200 times and does not develop HPPD. Person B gets HPPD on the first try. Genetics maps strengths and weaknesses: genetic weakness + environmental stressor targeting the weakness = disease. As for PD, there are a number of genes observed. The truly hereditary versions of PD are the most vicious. Since there is evidence of dopaminergic damage for some with HPPD, then genetics may be playing a parts. It would be an interesting development of the society of which we live if they developed genetic testing to see if it is safe for an individual to 'drop acid'. Since our condition now exists (too late for prevention), finding ways to reverse the problems is what we try to do. But learning that genetic weaknesses are probably involved may help to motivate one to make sure to protect against their weakness. Also, oxidative stress is a killer across the board - a component of PD and likely involved in most of us.

Yes, can't read a word you wrote This all again underlines that the brain is a "meaning making machine that forms precepts based on experience". With HPPD (and the like), the ability to put it all together smoothly runs amuck. Each individual is affected differently depending on what systems are malfunctioning, compounding diagnosis and treatment.

Thanks for the pictures. For me, there are multiple overlapping images in one eye. The other is not so bad as to notice unless looking for the problem. The 'blur' version is illustrated in this picture from a member on DPSelfHelp.com. The effects I get with the good eye are about as severe as the 2nd moon. The bad eye is more like the third moon. When initially looking at the moon, I see the first (normal) moon. But in the course of a few seconds these blurs develop - each pattern unique to each eye. The patterns match the 'multiple overlaping images' as well - so obviously related. A few times this has cleared up briefly - along with derealization. The first time was trying Keppra. The second was extreme heat with hydrocodone.

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Surprising/funny, it isn't hard - perhaps having 'to-conquer'/'live-with' messed up vision hones up or skills to understand messed up stuff. A lot of people on DP forums speak of how words/language looks weird/strange. Equally odd is that my spelling (without spell checking) is horrible but not as bad as your example - yet misspellings are more annoying than your example. You should put this as a poll and see if HPPDers reach or exceed 55% !

I've had a few 'blips' that were so fast I didn't fall over. And some minor flashes of light in one eye. How extensive were your seizures/blackouts ... what were they like?

Sorry I missed your post so long (brain dead here) What did your GP say about dosing? If you don't notice anything at 3 pills a day for a week, then it probably isn't a med for you. Your trip to Boston should be helpful (let us know how that goes) Cognition often involves norepinephrine as well as dopamine. Focus and attention being big ones. [ note ADHD drug such as Adderall do this ]. It is hard to know what meds are best. Have been told to increase Wellbutrin for this but am limited in tollerating higher amounts. Also, any increase of DA will trickle down to NE since NE is made from DA. So many with HPPD suffer some of the additional symptoms you describe. Yet for me, these lead to a diagnosis of 'toxic encephalitis' instead of just HPPD. TE involves demyelination (and I suffer primary and secondary demyelination). Haven't heard of demyelination connected with HPPD ... something to start Googling.

Oh. Thought you meant bad experiences with prescription drugs. Prescription drugs have side effects (and on few occasions damaging ones) but anything the doctor would try would be much safer than street drugs. You can also start meds at much lower doses to ease into them to see if they help or cause problems.

Glad to hear this The info was good though. It is hard enough to read medical texts on what they learn doing to rats (and I hate rats) let alone humans. But of course we all learn some interesting things from bad experiences.

I do bad with synthetic drugs What are the drugs that you had bad experiences with? And what were the bad experiences?

Forgive me if I misunderstand or if this question seems impertinent - but are you doing this now? And if so, do you really want to get well again?

Yes, the two meds are somewhat similar. Also, opiates numb pain but for some they are stimulating. If I take tramadol, hydrocodone, or oxycodone before bed - get bad insomnia. But if I start low amounts (1/4 pill) in the morning and afternoon, then the bedtime dose is less likely to keep me awake. Most people who take antiseizure meds have drowsiness issues. For me, parts of the brain are overactive. By calming these down, it leave more energy to live life. Initially I had to take 1800 mg Gabapentin each day. Now it is usually 300 mg. If I take 1800 mg now, then I'll suffer as you describe - apparently something has healed in the old gray matter. Perhaps one day I'll need none, a goal I do reach for.

Well, after 13 years it doesn't look like you are going to develop a tolerance problem. And just as needing Klonopin can be interpreted as an addiction, being crippled without the med is inhuman and one could argue that anxiety is an addiction. I do not disagree will gill's statement. Jay and others have also expressed similar concerns. In general, addiction is a product of taking more of a med than needed. This is commonly seen in strong pain killers as well. As a rule, no medication at all is the best thing. But the fun thing about rules is breaking them (my little joke for the day). And HPPD is a cruel, twisted little beast requiring treatment/management tailored to each individual. With medication, finding the effective dose, then using that or just slightly under will help. Occasionally testing slightly lower amounts can be useful. The fact Klonopin has not lost effectiveness for you in all these years is strong evidence that your brain actually needs the stuff (at least until you find something better). And that you are not taking too much. (of course you can discuss all this with your doctors if you wish - I ain't a doc) Otherwise, glad you have a solution to enjoy a productive life...

Well, nothing like having aclean nose ... Yes, it was 5000 mcg sublingual Methylcobalamin (type of B12), 1200 mg liquid GPC (crayhon research), and about 3000 mg MSM. Did this for a few days, then waited 2-3 weeks, then start again. This is what helped the neuropathy mentioned above. Originally used injections of B12 but stopped because of the aluminum. For some reason, it works better to have the pauses and as that group. Note: take both B12 and GPC in the morning because it can interfere with sleep. Here a fun read http://en.wikipedia....Methylcobalamin -- (apparently others know about its benefit for all sorts of neurological stuff too)

This has been one of my worst symptoms. The more I push, the worse it gets. Doctors have told me to rest and take lots of naps. I notice, that physical work is much less tiring and does helps lift spirits. But here too there are limitations. The Sinemet gives more motivation and clearer thinking but not sure if it helps energy. Antiseizures (Gabapentin and Klonopin) definitely help energy and cognition. But again things are limited. Caffeine has no effect. No more or less energy. I can drink expresso and take a nap In summary, mental work is 2 hours / day max. Physical work is 3 hours, sometimes 4 on a great day. Naps can extend a little (in spite of the interruption) but never fully like starting in the morning. Kind of like being 95 years old.