VisualDude

It seems that most hppders suffer worse visual with anxiety. However, there is a minority who's visuals are not affected ... just 24/7 visuals.

It is hard to know what they know. Focus is usually on more common disorders and people are quiet about HPPD and, to some extent, other 'weird' visual problems. Perhaps people feel shame if their problem isn't mainstream like cancer or heart disease.

Always good that an article mentions HPPD. Also, we now know there is a doctor Charles Grob doing hallucinogen research. Have you heard of him? The article publishes the same message that alcohol is the biggest evil - but at least it does clearly state that the statistics are skewed. Certainly people hurt themselves with alcohol, but it is the only legal high. Curiously, cell phone use while driving is classified as dangerous as driving drunk in terms of causing accidents (fatal and nonfatal) In the end I question the motives of people promoting that drugs aren't all that dangerous. And that hallucinogens are the safest ?!? They speak in terms of deaths but damaged function is far more prevalent than people admit. For the most part, unless a heavy user gets something like HPPD, they are often not even aware of what they have done to themselves. After reading the endless stream of personal accounts on forums for years - clearly death isn't the only bad thing that can happen with drug use. Ironically, by making drugs illegal, a whole violent underground has flourished. It is no different that what Prohibition did is building powerful mobs. In the end, hopefully people will take HPPD more seriously

Interesting with the IV. There is a lady in this area that has POTS so bad that she has an IV 24/7. She lives with it ... and not just in bed. To work, shopping, etc. While that sounds strange (and is), she has a life. Don't know how she was diagnoses and prescribed this treatment but it works. Have been told the IV is just Ringer's solution. Did Wellbutrin aggrivate your blood pressure or heart rate? Did it change any of your visual symptoms? Sine your blood tests fluctuate a lot, it does make one wonder if there is a central-control area that is struggling/sputtering with a wake/wave of effect down the chain. Dopamine is a neurotransmitter involved in balancing control in systems including the autonomic nervous system and some hormones, particularly prolactin and testosterone. Of course it could be something different and you have to weigh my comments about dopamine in the context that it is a wonder-transmitter for me ... but maybe not for someone else. Low aldosterone is often Addisons. Curiously, the adrenal glands produce dopamine, norepinepherin, and epinepherin. Perhaps there is a link there. With low salt, potasium will go high and cause arythmias. And in general a person might have things you describe. It doesn't mean your blood vessels are clogged from the high choleteral. And they have tests to check your blood vessels - everything from MRA to a visit to your eye doctor. Hope these thoughts are helpful

+ + Jay !!!

The anxiety brought on by somewhat-useless doctors is understandable. Your suffering is significant and should cause them to work harder rather than shrug shoulders, especially since you already have a mental health doctor saying you have real physical issues that need to be addressed. They need to find out why your aldosterone is low. Either there is a direct problem with its production, or a problem (shortage-of-materials) upstream. The pathways are known, as show in chart below. So it is a matter of them testing all upstream metabolites. This is limited by the availability of tests and the doctors willingness to get off there rear ends and order such tests,. Since you have to spend most of your life horizontal, that is the first thing to address. When you have an IV in and are receiving fluids (hospital/emergency room), does this relieve any of your symptoms?

Most with HPPD complain more about anxiety than actual visuals. The stress you mention certainly could contribute to your problems. Hypoxia isn't good for the brain. Be careful with Tylenol as well. As for doctors taking 23andMe seriously, the purpose is first to give you more to work with. If some genes of interest stand out, then you need a doctor who will consider it, possibly verify it if need be. For the most part, people with HPPD and other weird stuff are on their own. It takes time to find a useful doctor and then time to build a working relationship with them. As for meds, the most helpful for HPPDers has been Klonopin. Some report Keppra helpful. Dr Abraham did a drug test boosting dopamine in the executive center with many reporting improvement with symptoms. Generally weed aggrivates symptoms. Drink as well. You may notice if reading my posts that I encourage trying Sinemet (levodopa/carbidopa). Some have reported improvement with it. Based on researching the areas with my symptoms (and later confirmed with genetic testing), dopamine issues have been core of my problems. As you know, each person will respond different with meds. So you just have to try. As a simple guideline, start with small dosing and be patient. You seem to have autonomic nervous system issues (possibly dopamine related). Have you been tested as a carrier for CAH? Yes, most docs dismiss "carriers" as being symtomatic but that is their issue and not the facts. So xanex lowers blood pressure? Dopamine meds tend to as well. However, they can restore regulation which would then do the opposite. I've had lowish blood pressure my whole life (ranging between 80/60 to 110/80). Yet every med that is helpful for me lowers blood pressure and have less problems with them then without. So, its all weird stuff. So the med question is to build a history of how meds affect you. You end up doing detective work with it, building and understanding (diagnosis) based on med response. Obviously this take time and a cooperative docs. When evaluating response, you'll want to see which ones affect visual symptoms (such as florinef). And, obviously, your low heart rates and blood pressure. Are your visuals constant (24/7) or intermittent?

Well, where to start ... Whether it is HPPD or something else, clearly there are autonomic nervous system problems as well as visual. That often is the case with HPPD and other CNS issues such as Parkinson's disease. As for "optical migraines", they are ONLY intermittent. If your symptoms are continuous, then is really isn't that. But doctors grasp for what is common. Optical migraines and HPPD do have things in common. HPPD is a constant state of pre-seizure that doesn't actually become a seizure in most cases. Migraine and optical migraines are related to epilepsy. At this point I must ask, besides Florinef, are you on any meds right now? Please list the meds you have tried and how they affected you. As a side point, sometimes antibiotics can bring on this stuff so perhaps your pneumonia treatment was part of the current problem. As for genetic testing, you can get a lot tested through 23andMe for $100. Over 600,000 SNPs. However, at this time, you are left to ferret out the results. You can get started with http://www.snpedia.com/index.php/Promethease. If you or a friend enjoys doing (or at least can do) this type of research, it is very useful. I am also accepting raw data downloads to study the relationship with HPPD (and such profound visual crap). http://hppdonline.com/index.php?/topic/3825-genetic-testing-a-chance-for-us-to-mobilise-research/ Otherwise, welcome to the site. It is fairly quiet right now but there is a wealth of info you can search.

This is significant. How to medically treat could be problematic. First, if any are 'dopamine-responsive', they can't be treated that way without making the dillusions worse. (Don't worry Merkan, if you were schizophrenic, your Sinemet would have you over the edge). Second, how many of these suffer schizophrenia from drug use? Or have been made worse from the meds to treat psychosis? Third, for those not showing any relationship between HPPD and dopamine, these would provide a study group that filters out the ~30-40% dopamine responders (tolcapone + sinamet)

With the site down a couple times, I've been away a few months as well. This med is definitely a plus for me. Side effects have subsided. Much better motor control, its like muscles and fingers 'obey' me better than my whole life. Vision sharp. Think clearer. Sexual function better now. This is a must-try med for anyone who has had any sort of response to dopamine. Perhaps even those who have not. It did take a number of weeks to get used to it. Currently at 0.75 mg/day. Aside from adjusting, one problem was the cost, but for now it cost me $4 a month. The biggest problem is that I feel much better and then do more that I should ... then feel like crap again from overdoing 'life'. But as a rule, I get twice as much out of each day than I used to. Would like to increase dose but there is a long term risk associated with higher dosing. So evaluating other options to boost it without increasing 'fibrosing' risks. This is no longer a trial, but a 'must' med for me, along with Sinemet. Had hoped to reduce overall meds but the increase of quality of life is the better option. Merkan, given similarities between us, you should give this a try. Not sure how it will affect you with the Klonopin and Keppra doses as high as you take, but cabergoline is not contraindicated with them. My routine is: 0.25 cab + 1/2 sinemet 3 times a day. 300mg gabapentin and 250mg Keppra before bed only. Every few days toss in 25mg amantadine. So these figures are just food for thought.

Now that you've been off a couple weeks, how is your HPPD after negative Sinemet experience?

Please further describe what you mean by "for Movement".

The original research (which got everyone excited) stated that high dose fish oil reduces inflammation. However it also stated (and this has been ignored) that after 2 weeks, high dosing causes inflammation. So after 2 weeks, do not take more than 1000mg per day - that is the maximum maintenance dosing.

Good to hear for you after all that time. Sunglasses can be very helpful - a simple, non-drug aide. One often ignored. Funny that LSD would be proclaimed "one of the most inoffensive drugs". Just goes to show what agendas and/or desire-of-the-heart can do to logical reasoning... Just love how wiki says it can't cause damage, lol. While there are quirky problems (either from fatigue or very specific oddities), I don't find HPPD destroys cognition. Only when people are locked into hyper-vigilance (anxiety) does it interfere. Glad you are able to pursue life. Wish you success ...

Members: please check out this poll http://hppdonline.com/index.php?/topic/322-body-temperature-and-visual-symptoms/

Hey, may have figured what is going on here! It has been puzzling that fever > 102°F corrects my vision. Yet making body temp higher by sitting in a hot sauna or tub does not improve vision. This discrepancy discredits the idea that reduced nerve pulse amplitude (a problem suffered by people with multiple sclerosis) is involved with HPPD. Apparently, D2 is a signaler to lower body temperature (hypothermic). [ Google: dopamine D2 temperature ] Recently began working with Cabergoline - a strong D2 agonist (increases action on D2 receptors). This significantly improves my vision though not as well as being sick with fever. Current hypothesis is that at some point during sickness, the brain is trying to upregulate D2 action to lower fever. This relation may be more complex but as D2 is hypothermic, the connection is there. Perhaps knowing whether a person has visual improvement based on fever would be an indicator whether they would respond to dopamine medicine or not.

That is great! Then I presume you don't need Promethease ... is the 23andMe health reports as extensive (or more extensive)? BTW, since this thread was started last May, I've only received 2 samples from members (total = 4) ... so there is clearly lack of interest. I will still collect sample for any who wish to send them, however, until there are a lot more samples, the project is on hold. Don't let that discourage any from getting tested since the information can be helpful for each person.

Are both eyes the same or is ghosting greater in one eye?

Dopamine is a stimulant and thus can increase anxiety. That is the problem with Wellbutrin as an antidepressant - it helps depression but can increase anxiety. Apart from you drug trial, have you found DP worse with anxiety? Many on the DP forums report that. Perhaps that might be an indicator of whether dopamine helps - if anxiety connects to DP? For me, there is no connection between anxiety and perceptions, and the visual stuff is 24/7. Are/have you taken other meds too?

The name HPPD is from the origin of how it has been studied - hallucinogens. But like so many neurological fields, different groups are studying the same thing from a different perspective. When you read on visual snow forums, people will report every symptom that you read here ... it is just they've always had it or don't know what started it. And serotonin isn't the only hallucinogen. It's just, perhaps, the most striking in its effects, visual, floating, imaginative. With cocaine and other dopamine based drugs, people can hallucinate paranoia and euphoria. Both can create states of lost reality but do so very differently. Perhaps the name FUBS (fouled up brain systems). Then all we got to do is clean the carbon out of the spark plugs ...

Dr Abraham (a researcher of HPPD) states on his website that HPPD can occur without recreational drug use, and it indicates an underlying neurological weakness. There are also people getting HPPD from non-recreation drugs such as antibiotics for acne. You'll see Visual Snow forums discussing the same symptoms as HPPD (and as you) but without relating to drug use. Often born with it, again as you. Besides the drug-link, perhaps the biggest thing about HPPD isn't the obvious visual symptoms. The most debilitating seems to be anxiety and depression ... even to the point of being unable to work or being suicidal. When I was a kid, had mild CEVs which I too would 'play' with. They slowly reduced and were gone in my 20s. With my visual problems now, CEVs are not part of them. The point is, you have an underlying weakness but you are used to it. It sounds like you can get on with life and enjoy it. To understand more what might be at the root of the problem will take time ... and considering non-visual features/symptoms of your life. Since you are on this website, you have some concern. Just take it lightly (don't OCD it) and you may find something helpful. It is also tricky since you have lived with it, it is hard to know for sure what 'baseline' health should be. You are alive and otherwise healthy. As for meds for your symptoms, what helps one person often doesn't help another. But there are principles of how different brain systems work and meds that may affect them. For example, researchers now understand that CEVs (geometric patterns) come from overactivity in the part of the brain that does edge-detection (one aspect of visual processing). As for stationary objects that move/breathe, the brain uses contrast to determine depth perception. Weakness there will cause what you experience. Visual puzzles and illusions exploit contrast to make their illusions - by using 'unnatural' contrast patterns in a picture, they make objects 'move' by confusing the brain. I don't have snow but have 'white' in the dark. It is significant when taking anything that increases serotonin. It is resolved by dopamine meds, and helped with GABA meds. So ... you have an open exploration before you. Just have fun with it as you seek to learn new things. Do you still get migraines or just that one 'wopper'? Are you good with algebra but not people? Are you unusually restless or 'hyper'? How is ambition and 'energy'? How is coordination or sports? Are you taking any meds?

Recently started this med. There is much to say but my trial is new, time is needed, and thoughts difficult to express clearly. Nevertheless, wanted to ask: Has anyone here tried this medication? History: Cabergoline is an ergot derivative that mainly increases D2 receptor activity. [ Bromocriptine is a similar med ] It has been used to help with Parkinson's but is no longer used that way in USA because the effective doses for PD for long term use can cause pulmonary and/or heart valve problems. It's main use is to shrink pituitary tumors (thus eliminating brain surgery). Its action reduces prolactin. It is also used as a female fertility drug and to shrink 'man-boobs'. You will see this med talked about on muscle forums, as they sometimes get hormone problems with all the things they take to get bigger. Cabergoline is also used recreationally to facilitate men achieving multiple orgasms. The standard dosage is one 0.5mg pill twice a week. This reports to be a safe dose with people taking it for life if needed. 'Dangerous' dosage is 3mg or more per day with accumulated amount exceeding 1000mg (at this level, a person has a 0.2% chance per year of the above mentioned problems) My interest: Starting in 2008, many symptoms researched often would tie to possible D2 receptor damage/problems. Recent genetic testing also showed weakness with this specific receptor. Finally, after over 6 years of asking, I got a prescription for this. Expectations were low, in part being it has been several years, but thought there would be some slight visual improvement. My goal was simply to try this for diagnostic information. Results: The initial effects caught me by surprise, as a lot more happened. Here it gets difficult to express coherence, so a jumbley list. Dosage is 0.25mg (1/2 pill) varying from every couple days to twice a day Initial surge in testosterone for a number of days (this is always expected) Vision sharper and more natural (less DR) Feel more 'connected' to living things. (for example, amitriptyline make me feel 3rd person instead of being 1st person. this one is more 1st person) More energy, able to focus (initially hyper-focus) Focal length changed [eye glass prescription] (unexpected. My lenses always feel spasmed. Anticholiergics help for a few days) Increase tinnitus (negative [warning!], unexpected) but this is improving as I adjust Complete relieve of asthma and back muscle spasm - nice, clean, easy breathing (at higher doses, unexpected) First time in over 20 years. The sense that some lasting improvements will remain even when no longer taking med. Reduced sexual function (opposite of what was expected) though initial T surge was 'good' Somewhat calming. Often there is a 60 minute series of effects after each pill (though lessoning) calm, sinus congestion then clearing, sensation on top of head Requires Sinemet to work well, otherwise overall negative experience Issues: Very expensive: $10-20 per pill even though it is generic. My insurance will only cover enough for 2 months of each year. While improving, tinnitus is a warning sign for me Works better with Sinemet and with small amount of Amantadine - don't wish to increase the total number meds I take Effects evening out, both good and bad are less so. This med has answered some questions but also raise more questions. Still adjusting and evaluating. Overall a useful med for me. Those interested in trying it for HPPD should first try Sinemet at evaluate its effect ... suspect that if you don't benefit from the levodopa at all, then you would not from this med. Again, this is early reporting (6 weeks in) and subject to changes in opinion. But it seemed important to let members know, and see if anyone else has tried it (weight lifters, hyperprolactimia, etc...) As they say, 'Drive safely'

Melatonin always reduces the sharpness of my vision. Don't know why ... it just does that. It is too bad because it is a very good antioxidant (even used for radiation poisoning). Umit, how long have you had HPPD now?

A few months ago there was a member who reported Rogaine resolved his HPPD for a year or two. Then it stopped helping. Seems some sort of hormone related thing can be involved with HPPD. Cellphones can cause hair loss. My former boss had a big chunk fall out by his ear on his cell-phone-side. Started using hands-off and it grew back.

Largely 'visual snow' symptoms and HPPD are the same thing. But with HPPD there is a know connection with recreational drugs. Since this started after tripping, then it would be HPPD.