VisualDude

The term is 'management' not 'cure'. But really, if a person takes Klonopin for life because it improves their standard of living ... so what. It only becomes a problem when doctors stop prescribing it, which has happened to some on the forum. There is a gal on DPselfhelp who has been taking 6mg Klonopin for 23 years. It helps her but it would probably be very difficult if they took it away from her. In the mean time, she is active in her life, primarily helping others with various illnesses. It took Klonopin for a couple years (0.5 to 1mg / day). It was unpleasant to get off and I used other things to help the transition. No one wants to depend on meds, we want to be well. In the end it is a matter of making the best of life. Overall, Sinemet has resolved most of my visual symptoms even when I stop taking it. But there are non-visual symptoms that require increased dopamine to function better. None of my past or current problems have been because of Sinemet. That can't be said of all meds. And there are huge differences between individuals.

On some visual snow forums, you can read everything you read about HPPD. What makes HPPD distinct is it being linked to the use of recreational drugs. Some of the worst symptoms of HPPD are anxiety and depression - which are hardly unique to HPPD. Your list of symptoms following MDMA is "classic" HPPD.

Raze, Guess it isn't quite clear what your goals are. If it is to be free of HPPD and visual symptoms, then you must discontinue all recreational drugs. Even though your alcohol use is low, you should at least skip every other day as a minimum. The idea of using rec drugs to cure damage from rec drugs is problematic. There has been some interest in using very low doses (sub-hallucinogenic) of such drugs but not much as been established. And there are a few who claim cures from other such drugs (and many who report further damage from trying the same thing). As far as how bad it can get ... you can end up catatonic, subjected to ECT and stuck living in an institution for the rest of your life. Your example of flickering vision is illustrative of your condition and gives us understand of your statement ... but you can still get worse. On the topic of flickering, you might try meds with anticholinergic effects since that reduces flicker effects. Some report help using Keppra which is an antisiezure that has that effect. There are others. Do you have muscle spams or twitches?

Have you done a search on Sinemet? You'll find a lot of info that way I've used it for 6 years now. Am one of those who respond very well to low doses. As far as mood effects: less anxiety, less depression, more positive outlook, clearer focus/thinking. Every couple of months I'll discontinue and see where things are. Then start again after 1-3 weeks. The effects on mood improvement are dramatic at first, then settle down to something inbetween ... so it isn't 100% cure. There are some who have reported it fixing DP or DR or both. Then there are some that it has no more effect than drinking a glass of water.

Been 30 years since eating Ono. Ate lots of loco moco but never with Spam Do you do most your fishing east of Hilo? Never tried fishing but hiked around a lot. Remember sitting on south point with the wind blasting away. There is a green sand beach an hours hike east of there. The waves seemed too rough to go out in the water there. Is there any fishing there?

Is this the first SSRI you have tried? Have you used other meds? How is this med on your anxiety (the reason you are taking it)? Since it makes your visuals worse, perhaps the opposite type of med. There is only one SSRE on the market and it is outside the USA. If outside USA, you could check on it. Otherwise, see if you can get something that increases dopamine.

Its hard to say what to do. Just try things. Your sensitivity was high and gets worse when trying drugs. It would seem to be a neurological disposition rather than emotional. I've not tried ADD/ADHD meds but have help with other dopamine increasing meds at low doses, particularly Sinemet 100/25. Then there are antiseizures such as Klonopin, Keppra, or gabapentin. Klonopin is similar to Xanax but oriented toward seizure rather than panic. HPPD symptoms are thought to be from overactive visual processing in the brain. So it seems your hypersensitivity may be for similar reason although you don't have visual problems. Have you noticed any changes in visual depth perception or dullness in colors?

Typical response. Health care has turned into big business. So advancement to treat uncommon things has virtually stopped. Yet costs have soared. It is hard to progress ... you just have to try until you find some sort of help.

Antipsychotics are sometimes used as 'mood stabilizers'. If it is working for you, that is great. But from what you describe, you suffer a lot still. Antiseizure meds seem to help the most people, though there isn't a cure (just time). You would need to work close with your doc for any transition. Klonopin and Keppra seem to have some good reports. But with benzos it is best to only take them short terms. Since you are taking anti-dopamine, it would be the most disruptive to try to take a dopamine med right away. Have you tried any other med beside antipsychotic?

HPPD is a strange beast. Really it is just various perception-change-symptoms that stick with a person long after taking a drug. While visual stuff are the main reported issues, things like anxiety or depression (which aren't visual) are often part of it and usually the worst part. That said, a few questions: Early years (pre DP). You mention sensory sensitive. Were there things more than just light and sunglasses? Sound? Being around arguments? Concentration? What subjects did you do best in school? (math, sports, science, language, art, etc..) DP from weed. How severe is it? 24/7? Can't feel anything or just 'blunted'? Difficult feeling pleasure or motivation? After LSD. Are you hypersensitive to motion or just shadows? It is worse in your peripheral vision or central vision? You are calmest and feel best in the morning. In the afternoon, do you feel better after a brief nap? Any other changes you now live with? (fatigue, coordination, digestion, libido, ...) Meds. Have you taken anything besides Xanax? Have you had a prolactin and testosterone test?

Doubt Hilo remembers me, lol ... What is that fish you are holding? (can't see much with a 1 inch square) Life is a journey and a puzzle. Pieces come together as you experience it. Also what one seeks, their goals, and the willingness to consider something different than what we thought. Sometimes 'eternity' feels too scary to think about but you can always take one bite at a time. It is also irresistibly pulling, like something in our heart keeps looking. People can share and assist but the journey is up to each individual. Lot of people with DP suffer 'existential' issues. In a way it is ordinary questions but the feelings gets out of control. Am I real? Is life real? What is the purpose of it all? Don't know what to say for those who suffer it heavily ... just hold-on and know that you and everyone is real. I've never suffered DP that way. I find it helps to think of God as an individual with goals, feelings, likes and dislikes rather than an impersonal force of nature. After all, how can one have a relationship or even just feel love from something impersonal, like gravity, magnetism or heat? Thus the above post. Kind of freaked when trying to learn about genes, DNA, and SNPs. It looks so much like the old IBM punch cards for computer programs. Yet the sheer volume of information is mindblowing ... and it is all interwoven in layers of combinations like compressed ZIP file data. Have to sit back and breath it is so complicated yet the building blocks so simple. And that is just all what goes on in each and every cell in the body. On top of that is how it is all organized and the piece de resistance: consciousness - to be alive and think and feel. Anyway that is a world I dwell in ... Your vertigo and datura post is interesting. Do you take meds or drugs now?

It hard because you have to work with your doctors and it takes time to get it right. Seeing faces is common for some with HPPD. Don't remember the medical term but someone else here might. The key difference between 'delusion' and 'seeing things' (like faces) is knowing what you perceive isn't real. What you need to do is right down your symptoms now. Then slowly reduce your Risperdal to 1/2 and then right down your symptoms. Then you can compare benefits with side-effects and discuss that with your doctor. Are you able to work right now and do things with your life?

Risperdal does the opposite of Sinemet. The heart of the matter is: are you suffering delusions? If so, Sinemet or anything that increases dopamine is the last thing to take. Antipsychotics reduce motivation and pleasure. For delusions or schizophrenia, it is a matter of living with the lesser evil. If you are not suffering delusions, then you are taking the wrong med. Is Risperdal reducing visual symptoms? Or is it just reducing anxiety?

It would help if we had a "Spirituality" section [ Jay1, can you add that? ] Religion can be a topic of fighting/bashing. Odd because it should center around peace, love and respect. Perhaps people are too insecure to talk about it. Or because religious abuse, hypocrisy, and disappointed have left scars of bitterness/frustration. Or the illusion of freedom by breaking traditions. That said, I'll venture this dangerous topic ... To begin, have become 'religious' and HPPD ended up strengthening that. Brain research has also. Not that weird visual perception issues are enlightening but the crash of dysfunction became a brick wall in the material world. Life changes and one reflects on how to live with these changes. After the initial fight to get better, one needs their life to be more than 'recovery'. Over time the question morphs to, recovery to what? Something more than the past is needed. These are some observations: 'Spirituality' is a weird word with dozens of definitions. The more you read, the more divergent it gets. To stabilize things, people have a conscience of right and wrong that helps. But there are other 'universal' beliefs that seem to be based more on fear or greed than anything else - these detract. A good word to describe 'spirituality' is 'relationship'. Relationship with self (Freudian 'Id') Relationship with others Relationship with God. All of these add meaning, purpose, and richness to life. So it is valid and important to have personal goals, likes and dislikes. But if that is all we do, we end up hungry for something more. Even when advancing to friendships and a partner, more is needed. Relationships always involves the likes and wishes of both parties. Even the Id stage requires respect of the nature of the real world, i.e. we respect gravity and don't jump off tall buildings. So freedom is bound. Laws of the physical world. Likes/dislikes of those we interact with. "Blind Faith" is an oxymoron. Reality is reality and our views need to incorporate and adjust. Granted, 'reality' is perception built on past learning (past perceptions) ... so this too is a growing process, therefore beliefs need to change and grow. At this time, it is thought that the physical universe exploded from a singularity. All the laws that govern existence sprang out. Even 'time' was created as is seen in E=mc2 and its observed slowing as speed increases - 'time' in not a constant, it is a variable. It is perhaps valid to define 'time' as the measure of change of 'relationship' between material objects. Relationship between material objects does not require 'consciousness'. Consciousness begins with awareness of self, inner dialog. Then how to interact with the physical world. Then how to interact with other 'consciousnesses'. Then ..... If God exist then our relationship would involve two sets of conditions - ours and his. Anyone who has ever dated would understand that a relationship isn't about just one individual. A relationship with God would require understanding his wishes and it would also not be repressive of our being human beings. In spite of many problems, the beauty of life indicates a beauty of its creator. If it is important to have a relationship with God, they he would provide a way. But like any relationship, we must work on it. If God doesn't exist, then the meaning of life is just self generated ... 'Id' is all we need. Each of us has thoughts, feeling and reflections to share. Does God exist? If so, why are there so many problems? If personal salvation is the most important thing, then why is it delaying? Why do we exist? Why were we created? A 'Spirituality' section might be cool. On the lighter side, how is Hilo? Is it about to be hit with a hurricane? It has been over 2 decades since being there and the whole big island ... miss it.

Give yourself time ... 4 weeks is very new to HPPD. It may (often) resolve over time. HPPD often puts a person in a 'hyper' state - a type of vigilance. So mentally you have to work on relaxing and on focus (concentration). When benzos ware off you get a rebound of the symptoms they were helping, as you are now aware. It doesn't mean the benzo was bad but it does provide a contrast of all your symptoms. Hope your neurologist is helpful.

Eye dilation is part of the autonomic nervous system. Dopamine and acetylcholine are involved (along with others). My experience with anticholinergics is initially positive but then there is sort of a temporary rebound when you stop. As for blurriness, that is from dilation - look up aperture with regard depth-of-field with photography, etc. Your floaters must be severe to have surgery. Since they were tolerable (at least you could work) before, ideally would be to work more to address HPPD - our 'holy grail'. Are you on any meds? How do (have) they affected you? How long have you had HPPD? Please describe more details about your light sensitivity? Is it greater in your peripheral vision?

LA, have you been diagnosed with ADD/ADHD? Usually they put people on meds for that. 415s statement about using Keppra (or someother antiseizure type med) is good. For some, just antiseizure works for managing HPPD, Klonopin being the most common. Dopamine is stimulating. Less than norepinephrine or epinephrine (which the body makes out of dopamine) but still a factor. Perhaps a good way to describe it for men is testosterone (which levels are controlled by dopamine) -- it motivates to get up and do things (ambition). Dopamine is also regulating. In cases of low dopamine, brain circuits get stuck - think of a stick-shift with a broken clutch ... you have to make do with whatever gear you are stuck in (fortunately the brain doesn't stall like a car). For these people, increasing dopamine will relieve symptoms related to low dopamine. HPPDers have hyperactive brain systems (pre-seizure state) which explains why some get relieve with antiseizure meds. Hyperactive reflects in hypervigilance - over sensitive to peripheral vision, sounds, difficult sleeping, difficult concentrating. Generally using just a small about of meds to calm being out of control is helpful. Then CBT/psychotherapy is helpful to self-train control of thinking ... regaining lost control: anxiety, depression and goals. Many get relieve from visual distortions when managing their anxiety. ADD/ADHD is its own beast to manage. It is known to a dopamine problem. Those with this disorder are in best position to describe what works for them for HPPD Keppra is an antiseizure med. It also has anticholinergic affect (reduces acetylcholine activity). Anticholinergics slow vision flicker response. For some that can help with DR and symptoms relating to frames. It is a med worth trying. Gabapentin is another med to consider. It is quite different than Keppra. More like a benzo but without the withdrawal/dependence issues. Note: all antiseizures are sedating. Sometimes that is good. Sometimes not. As with all meds, keep the dose small ... "How Low Can You Go"

Just be attentive to the problem of having overactive visual cortex function ... and a state of overactive vigilance (anxiety/hyper-vigilance). In that case anticholergics can help ... and a few accounts of improving visuals with them such as with Keppra. Always a ying/yang thing trying to balance quality of life. You can google how anticholergics reduce flicker response (slow vision down). Sometimes it is better to be a turtle than a hare ...

Haven't tried Ritlin or Aderall so don't know. But since they report increasing NE (not just DA) there would probably be problems there. There are also conflicting reports of it increasing serotonin. While they say the long term use to Ritalin 'corrects' brain abnormalities in ADHD suffers, there have also been many reports of it causing them to become adults with empathy problems and various psycho-social issues. Perhaps by providing chemical 'reward' outside normal human social interaction, they form this deficit. These problems may also be from the dose being too high. People want a med to solve the complete problem. That is rarely achieved because of side-effects. It is much better to use meds to take the edge off of a problem. Then resolve the rest with lifestyle changes, including how we think and react to situations. Anxiety is more about reaction than the actual situation. But if a med is causing/amplifying anxiety ... that is a problem. Since you have capsules, you will need to open and take half at a time - a pain, but easier to adjust to. Since the 2nd day have only tried 100mg a couple of times - general tolerance but 50mg is better. No one needs a bad trip!

Curious that Amantadine makes your visuals worse but Wellbutrin does not. Both can increase anxiety ... Wellbutrin being known for that. How long have you been taking Amantadine? I started 2 months ago. Found 100mg too strong, but 50 ok. Still need to take Sinemet with it or anxiety is too much. Amantadine is a complex med. Started a thread here: http://hppdonline.com/index.php?/topic/3998-amantadine/ As far as dopamine not increaseing visuals, it depends on the individual. A few claim to benefit from anti-psychotic (anti-dopamine) although usually it is the opposite. I have noticed that, sudden changes in dopamine levels (such as starting, stopping, increasing or decreasing a med) can temporarily make some symptoms worse. Try taking just 1/2 the pill (50 mg) Also, do you find anxiety affects your visuals? That is common but not a rule. If anxiety makes visuals significantly worse, then anxiety is the first thing to try to treat. Dr A states "On an optimistic note the tools that the psychological sciences have in the treatment of such conditions are quite good, even as the specific treatment of HPPD symptoms is not yet at hand. Nearly all HPPD patients can benefit from supportive psychotherapy, and cognitive behavioural therapy for depression and anxiety disorders." http://www.thepsychologist.org.uk/archive/archive_home.cfm/volumeID_27-editionID_303-ArticleID_2586-getfile_getPDF/thepsychologist/0914abrah.pdf

For what it is worth, people with brain injuries or diseases such as Parkinsons need to keep alcohol low ... it isn't necessarily forbidden but daily or heavy drinking generally contributes to feeling worse or even further deterioration. Some HPPDers feel better while drinking. "Feel better" in that it actually reduces symptoms significantly. The effects of alcohol are complex but it seems to include some sort of GABAish effect. But there needs to be caution with this sort of 'treatment' just as with any medicine. How were you abusing benzos? Often they are prescribed for short term use and at a variety of doses. And often for anxiety or sleep. In this context were you abusing or just using? From whats been posted, the only real problem with benzos is that when you take them for long periods of time, there can be additional problems when you stop. Eating properly should have priority over suppliments. But many don't have the discipline or have emotional issues connected with food. It is also very hard to eat different than those we are surrounded by ... everywhere non-nutritious food prevails. Lastly, it is difficult to stay clean while living with drug users. You are doing well not to have fallen back to recreational drugs. But when you can find better rooming/roomates, you'll be doing yourself a favor.

At the moment am speechless ... you are very sensitive. In any scale I've seen so far (they vary somewhat between labs), you T is very low. That will rise if you take a dopamine increasing med. Your sensitivity is a concern, but low DA can cause a systems to be 'stuck' instead of working smoothly. Quercetin is an anti-inflammatory - which seemed to work for you. Instead of being a side-effect, could the weak skin be what your skin is actually like now when not inflamed? (Is it always inflamed).

This picture shows some relations discussed above [ Full text @ http://physrev.physiology.org/content/86/4/1309 ]

You might wish to try this: Taurine - 2 grams, twice a day (12 hours apart) [ do not exceed 4 grams/24 hour or you might get neck spasms ] Panathetic acid - 1 gram, twice a day (breakfast & lunch) Also add 1 gram vitamin C with each dose This may facilitate Coenzyme-A and osmo regulation. Useful for adrenal issues.

Besides the meds you mentioned above, what else have you tried? (Especially anything affecting neurotransmitters) Many HPPDers get relief from Klonopin. It isn't a cure, just management. But benzodiazepines work with GABA receptors, a mechanism attributed to alcohol. Obviously you don't need another addiction, but a trial might help. The skin rebound from pred is after you stop correct? Pred is too harsh to take continuously. Most antihistamines also have anticholinergic action (Benedryl for example). If you have a dopamine regulation problem, then one can have issues with anticholinergics. Dopamine and acetylcholine counterbalance each other in brain systems. Also, both are involved in the autonomic nervous system. HPPDers often exhibit ANS problems such as dilated or uneven pupils, or slight changes in heart rhythm, or digestive changes ... and even the skin. Sex-to-orgasm is a complicated ANS 'dance' and, as you report, there can be problems. While not specifically an anticholinergic, Keppra affects acetylcholine/dopamine/GABA junctions. A few HPPDers report good results with Keppra. There are two major places where dopamine is made: the VTA in the brain and the adrenals. Cortisol is epinephrine (adrenaline) and is made from norepinephrine (noradrenaline) and is made from dopamine which is made from levodopa, etc. [ ... --> levodopa --> dopamine --> norepinephrine --> epinephrine ]. The chemistry is the same in the brain as it is in the adrenals. Also, adrenal hormone production is as follows: androgen --> aldosterone --> cortisol. Production of these hormones is regulated by the brain. The CNS signals production with ACTH and monitors blood cortisol. It cannot regulate the ratios of androgen/aldosterone/cortisol. That is genetics and metabolism. If something is wrong with this, one will suffer high androgen but low cortisol and possibly low aldosterone. The first two are implicated with the meds you respond well with. Low aldosterone causes salt loss, electrolyte imbalance, and possibly dehydration. You can research these points. The most striking disorder is CAH. You don't have that but perhaps could be a carrier and E messed up things with your good-half. It probably is less severe than that but it is worth investigating that these systems are functioning correctly. If you pursue this with a doc, explain what you are after. E messes with the HPA-axis. Adrenaline and cortisol are different molecules, but are both made in the adrenal glands and work tightly together, for example forming memories. How do you feel if you eat some salt? Do you have lowish blood pressure? (fainting) As posted elsewhere, you can manipulate ANS balance (SNS vs PNS) slightly with Mg, Ca, and K. However, be very careful with K if you have an adrenal problem! Presumably your blood tests have been 'normal'. Borderline adrenal problems affecting aldosterone will have low[ish] Na and elevated K. In the extreme the heart can no longer beat. But Mg and Ca are safe. The citrate forms are quickest, both in and out. As far the prolactin test: low dopamine increases prolactin which lowers testosterone. However with adrenal problems, high androgen will mask this somewhat. Then there is total testosterone vs free-testosterone to have checked. Different topic but related to response to baldness medicine. Lastly, opiates actually increase serotonin slightly. HPPDers usually do poorly with SSRIs. However, many tolerate opiates. I find a slight reduction in vision quality with opates ... and bigger reduction with any serotonin increase. Typically opiates are helpful for a couple weeks then other problems start so I discontinue. Well, hopefully this info is helpful for you in finding solution for your suffering.