VisualDude

For me, outside is the best. Artificial and dim light are worse. Is that normal? Well, it is for some. Are you still on pain killers? Any meds, even OTC?

It is great he gave you a phone consultation. Many doctors won't bother returning calls. So when he tells your docs, they will have a better idea what they are dealing with... Very excited to see his published results!

An environmental 'accident'

Since genes only define weakness, nearly all disease could be prevented with 'healthy' life style. For example, HPPD is mainly from drug abuse. Diabetes and Heart disease is almost entirely preventable. Even cancer can be greatly reduced (1/3 is from smoking, 1/3 is from diet, and a large portion is from pollution). Multiple sclerosis is almost entirely a disease of Western industrialization. Epigemetocs is important. But changing how humans live is an immediate solution that has been known and available for years. All it takes is personal discipline, political determination and the elimination of business greed - lots of luck!

There have been reports of people getting HPPD then having it go away. Then with continued drug use, it came back even stronger. So, yea, it can go away. Lifestyle is important. If Dr A says you have 50% change of getting well, believe him - he has been studying the disorder and is not a fool. Do you try the drug trial? And, if so, did it have any affect on you?

Actually, people can get HPPD without recreation drugs (though uncommon). However, as mentioned by David, codeine is an opiate. And the major opiate system is connected with the dopamine reward system. Dopamine problems have been implicated in some with HPPD. How is your vision outdoors in a park on a bright sunny day?

I find books far less fatiguing than the computer screen. OliverW, How is your reading effected if you lower the contrast on your screen? How about the opposite - if you make contrast strong?

Wow, you got a lot to deal with. As far as "Everyone I've talked to said it is a pretty atypical", what you describe sounds like your brain need to relearn emotional control, memory control, etc - classic with certain brain injuries. The fact that your dreams are mostly 'normal' may indicate that the majority of your problem is sensory perception and control - not your core 'self'. This is very promising and gives strong hope. There are things a counselor can guide you through to gain better emotion control - find one who doesn't knee-jerk put you on meds. Meds are useful, but you need to learn attention control and there are mental exercises for this. HPPD is a sensory/perception disorder. Some of your symptoms seem like a dopamine disorder (my favorite topic) but your situation is complex. And being compounded with addition issues, you need to work very carefully with your doctors. What have your doctors suggested you do now? Do they think you have HPPD? Are you currently on any medications?

Dexedrine, an enantiomer specific form of adderall, whereas adderall is a racemic or equal mixture of the chiral isomers, is probably more useful in this case because I have pretty severe ADHD issues that stem from in-vitro exposure to methamphetamine due to my biological mother... So there is a good chance that my input would be entirely useless to anyone reading this. Your input is helpful, so don't feel depreciated. Like to point out that Adderall (and the like) boost dopamine. And at least for a significant percentage, dopamine is a key neurotransmitter involved in HPPD symptoms. Meth is well know to blowout dopamine systems, so it is no wonder moms behavior has caused you difficulty. How did you get HPPD? What are your symptoms?

If you can survive 40-60 hits, LSD must be a lot safer than I thought, lol . They must have been mini hits - slaps?

Yea, several things. Using wrong words (sound similar, similar meaning, or completely off the wall). Occasional bits of stuttering. Jumping topics without completing the current sentence. A little bit of Gabapentin helps but too much makes it worse - there seems to be a 'dosage dance' (PRN) to adjust for. If I don't take any, end up with lots of this and eventually a micro-seizure type situation.

Was wondering about experiences with Klonopin (clonazepam) since it is supposed to be one of the best for managing severe HPPD. Is it better than 50% effective for people?

Note on fish oil - you can 'load-dose' for 2 weeks. After that, do not take more than 1000mg per day. The reason is that initially high doses reduce inflammation. But after 2 weeks, high doses cause inflammation. As for thought processes, A hallmark symptom of my diagnosis is attention/focus problems. Not that these mean one has toxic encephalitis, since anxiety (for example) causes such difficulty. So it takes a lot of effort to stay focused. One complication is the feeling of information overload. To illustrate, take the alphabet - something simple that we all know by heart. Look at 3 letters in the middle, say JKL, no problem. Now look at 7 letters, HIJKLMN, this is a struggle. Look at all 26, ABCDEFGHIJKLMONPQRSTUVWXYZ, I feel so confused and frustrated I have to look away. There are cognitive areas that work fine (have always been and still am very analytical). Others are sluggish (vision) or troublesome. Tried to correct my granddaughters 2nd grade math test and it was all I could do (and I used to be an engineer, lol). It is like being shot it the head by a shotgun with microscopic pellets. It seems random what works and doesn't (though it is consistent). And what is missing is realized only when trying certain tasks.

There is always hope. And you are doing well to be so clean for so long. What is the blood pressure med you are on? How much tylenol do you take?

If you search "Abraham" on the forum, you will find some actual experiences from people. Because of patient-doctor confidentiality (which works both ways), full details are missing. He clearly doesn't want to prescribe over the phone and probably doesn't want the details of which drugs he trialing out on the internet. Yes, $1000 is a lot of money. And seeing any doctor is a gamble. Obviously after trying for 13 years, you don't need to hear the same story. If you haven't done so, make a list of all the meds you have tried and how they have affected you. Whether you see him or other doctors, it is important documentation. HPPD is a nasty bugger to resolve. It might be helpful if you shared the list here as well. How soon is your appointment with your local neurologist? If he does give you a med to try, then you may wish to have a few weeks to evaluate them before the more expensive adventure. Also, if you see Dr A, he will want you off all meds for a while. (Klonopin takes a full month to be out of you, though you are not on it now). So you need to coordinate this activity. Economically, it makes sense to try the two meds you have already mentioned interest in - the problem (always) is getting local doctors to venture there. From the reports I've read, the main benefit from seeing Dr A is the diagnosis and report that he sends to your doctor (and get a copy for yourself as well). Also his drug trial is informative as well.

I don't know. To be continually worked with you would need to live in the Boston area. But it would seem he would get you started (get your doctors up to speed).

Hell, I have so many issues that I can't even join group therapy I relate to this statement, and have stumped my counselors with this. It isn’t funny to live with, but it sounds interesting to read. Know you have made it this far. And it is good to hear that you are ‘hanging in there’. Believe it or not, more people have ‘messed up their pecker’ than is generally known. That aside, focus on the positive. Yes, yes, yes … the old ‘glass is half full’. To start with, you CAN get erections – perhaps not at the times you wish (but that is actually rather ‘normal’). The drug mix that miniaturized you for over 2 days must have been quite strong. But that doesn’t mean you can't get most of it back. And lots have people have diddled to porn to the point of changing their member. Drugs often numb a person’s senses so they don’t realize the full extent of what is happening. One fellow said that he was circumcised at birth but now has a foreskin from all his activity. Others have reported numbness problems from using vacuum 'enlargers'. You need to change your viewpoint about your new appearance. Some people find genitals ugly across the board. Others feel quite the opposite. Many people have genital piercings, Prince Alberts, and wear heavy rings – these changes are irritating to the urethra and people just get used to it. Some people completely split open their urethra. [ See penile subincision http://en.wikipedia....ile_subincision ] 　 The first thing to suggest here is getting your life in order (if you haven’t already started). This includes good eating and sleep habits. Getting out around people. No more recreational drugs. Let your member rest. Limit alcohol (perhaps eliminate for the next couple months). Some of the drugs you took work by overloading the dopamine system (such as cocaine). The combinations were also probably neurotoxic, raising havoc with your neurons. But your body wants to heal and you can help it. Your numbness may involve some peripheral neuropathy. And for this (as well as for HPPD), I strongly suggest this simple dietary intake that helps to encourage nerve repair/growth with nutrition (the CNS loves this stuff), ~5000 mcg of sublingual methylcobalamin (B12) – 3 days on, 2 weeks off ~1000 mg GPC – 3 days on, 2 weeks off ~3000 mg MSM – 3 days on, do what you want the rest of the time Take as one dose in the morning. This 'pulse' dosing works better than continuous use of them - especially B12. For GPC, the best I've used is a liquid form (1200mg) made by Crayhon Research. Then there are more common things: Vitamin C, NAC, Vitamin E (mixed tocopherols), and a little selenium. If you decide to try any of these, look for quality – which usually means it isn’t Walmart cheap. The stresses you are under and these changes you are dealing with are huge and draw a person into excessive self-focus, just as panic attacks can ‘cripple’ a person. So making efforts to focus and help others will help with this. Since you have worn your best friend down, now try to build him up – it will help you both. As strange as it sounds, you need to get used to HPPD, etc. I doesn’t mean giving up. Rather, it means not letting this nightmare dominate and ruin you – it is bad enough as it is. The anxiety just drives the pain deeper. As you get used to it all, then your energy can be directed both to living and learning how to enjoy life, and to finding solutions to manage these symptoms. There are always solutions, it is just that they can be difficult to find. As for meds, I am a big proponent of dopamine boosting meds (such as Sinemet) and mild antiseizure meds. Whatever you try to do, just work with small doses and feel your way through it. Everyone is unique in how meds affect them. As you work with your doctors, you will build a history of what types a meds are useful and what are not. This, unfortunately takes time. Just keep pressing forward – your life will get better as you do. And know that people do care and will try to help, each according to their ability. You have already emailed with Dr Abraham. Perhaps seeing him will help as well. Afterall, he is a HPPD researcher and apparently doing drug trials as well. I realize that opinions are a dime a dozen. And advice doesn’t always fit. And even if it does, it is not necessarily easy. But hopefully this is helpful to you.

Your doctor's assumption sounds good - so many just react to anxiety with visuals as being psychotic, which sends one down the wrong path It is good to see Dr Abraham if you are able. He can provide useful direction and forward the info to your doctors. Even his willingness to return calls promptly and speak with you is exceptional and impressive. Much of what you describe was helped with Sinemet, some symptoms greatly and others just slightly. The light sensitivity and hyper-response was helped with Gabapentin. Klonopin has very little effect on visuals. The amount of Sinemet is small (1/2 pill of Sinemet 25/100, 3 times a day) and dose can be PRN as well. Initially Gabapentin use was high but now is 300mg 2 times a day. I've also found some simple (and somewhat unusual) visual exercises were helpful with hypersensitivity. It is hard to know what your neurologist will try. Likely he will order an MRI and EEG to rule out major stuff (as if your HPPD isn't major ). While less common, neurocognitive tests can be useful - these are tedious written and oral exams (6-8 hours worth) that test different areas of brain function. One neurologist I saw was quite familiar with using dopamine with brain injuries. A neurologist (in USA) will more likely try Requip before Sinemet - which is ok. I found it affected visuals but was not near as useful as Sinemet. Another med that is much easier to get is Wellbutrin. This is actually useful but can only tolerate small doses (1/2 pill Wellbutrin SR 150mg, once a day in the morning). This med is 'rougher' than Sinemet since it has more action on norepinephrine. So if you end down this path, just keep the dose low. For what it is worth, attention and focus are largely treated with norepinephrine. It sounds like you are working down a good path. If the doc ends up being a poop, don't get discouraged since there are hundreds more to try. But if your psychiatrist is already saying HPPD, this should prep the neurologist to be more helpful. While it is good and proper to communicate that you have anxiety and depression, don't act highly anxious. Instead draw attention to the visual problems, feelings of overload, and focus and brain fog issues. Also, discuss that from your understanding Klonopin is the best management for HPPD but it hasn't worked for you. And that there are positive reports about low dose Sinemet (30-50% help) and would he consider a two week trial. Perhaps ask if you might have a mild brain injury, a toxic encephalitis - this may help point his attention in a productive direction. Please don't be scared or worried about the idea of "brain injury", I know it can really push some people's buttons. What you know for sure is vision, etc., are not working in a normal fashion. Whatever it is called is irrelevent from what your life is like. But what it is called can greatly assist your doctors it helping you. Part of your goal needs to be building a working relationship with them. Once this developes, they are more willing to prescribe just about anything. [For what it is worth, I've tried over two dozen meds] Hope this helps. Do you have tinnitis? Do you feel pressure in your head sometimes?

Most of the symptoms of HPPD are very subjective to describe - hence lots of questions [ After all, most of us are just people, not linguistic PHDs ] My personal experience excludes stuff like CEVs, geometric patterns, and seeing smears/streaks of color. And these exclusions seem to be the least to be helped by increasing dopamine (Sinemet). However, sluggish motion (walking, TV), trails, negative afterimages, halos, depth perception and contrast (night vision, TV) have had very strong positive responce for me. As with yourself, sunlight is great. I find yellow light the worst (incandesant or high-pressure sodium street lights). That said, based on your info so far, it appears that Sinemet may be your best bet. And probably some mild antiseizure type meds (such as Gabapentin or Keppra). I have very little visual snow and then only in dim light and when my dopamine levels are low. Am not sure how effective Sinemet alone would be for your VS (which is substantial). So these are some thoughts for starters. Some more questions, What does your psychiatrist think? Does he think HPPD? How much Klonopin did you take? Do you feel you have attention/focus difficulties? Feelings of sensory overload (too much info)? Some thinking tasks are sluggish yet others are as quick as ever? A little bit of short-term memory issues?

How and why is your lifestyle introverted? As far as visuals, a few more questions: How is your vision at night or in dim lighting? Difficulting watching TV? Do you have 'tunnel' vision? Are you 'hyperresponsive' to movement in your peripheral? Do you see color distortions (like seeing purple everywhere)? Have you tried Klonopin?

For what it is worth, Effexor (the 'parent' of Pristiq) was a rough experience for me. That aside, you can start with a small dose. If you find it intollerable, then you stop. The only real obsticle is that they want you to try these kind of meds for 2 months minimum. But if it worsens visuals, then it isn't likely to be useful. Most quys would feel suicidal if they messed up their penis. If this and living with HPPD symptoms is the main cause of depression, then counseling is most important. Meds for depression are best for temporary 'emergency' use. But thoughout all this, you need to work with your doctors and not hang yourself (or whatever). Also, two months is new to this disorder - it usually takes some serious time to adjust to living with it while also trying to find ways to make it better. Do you have friends and/or family to be around?

To begin, first it would depend on your symptoms. Second, generally it would be good to discuss all with your neurologist. Third, some will depend on what your psychiatrist has diagnosed you with and his report to your neurologist. Naturally it would help to have a large database of symptoms and the meds that helped (as well as those tried) A few points to recap, Lamictal – has some support for off-label treatment of depersonalization. Klonopin – seems to be the ‘workhorse’ for management Keppra – has reports for visual snow (a main symptom you mention of yourself) Sinemet – has the fewest reports. It seems to help anything to do with visual contrast processing including motion and halos, as well as some more ‘external’ symptoms (depression, libido, pains and spasms, ...) . There are some reports of helping DR though not in my case. It also may require combinations (which makes things more complicated) Sorry this isn’t definitive, but HPPD is very individualistic. Hopefully this helps with ideas and some focus

David, This is a VERY interesting discussion and possibility – and especially in light of studies connecting LSD with gene expression. This would be consistent with the absence of predictable onset, the non dose-dependent linear/etc relationship with symptom severity, the sudden on and off of symptoms, and the individuals who have similar symptoms but do not associate them with hallucinogens often report antibiotics, specifically those with activity as inhibitors or altering DNA/RNA replication. While genes clearly play a part in disease susceptibility, so does environment. Many report high anxiety states contributing to developing HPPD and the like bucket of symptoms. For some there is a characteristic deterioration that may go on many weeks. Is this not in the fashion of nerve degeneration? When looking at Parkinsonism as a model, the primary damage is reportedly synaptic, due to high oxidative stress factors. Again, environment plays a major role in oxidative stress, whether ‘toxic’ or just high metabolic activity. When looking at Toxic Encephalopathies, particularly with solvents, symptoms also involve primary and secondary demyelination, and even death of distal axons. All of these models seem valid in explaining breakdowns in nuclei (brain neuronal systems) or, even greater, between them, which produce our symptoms. And none of these would show on medical imaging (except if axonal death was vast). All are ‘stubborn’ to correct (there is yet no anti-LSD pill to reverse LSD – ‘underloading’ does not correct past ‘overloading’). While life is simpler if problems can be distilled to single factors, we could be looking at multiple types of injury in many cases. Reversing gene silencing to correct gene expression has to be, handsdown, beneficial. It would be fascinating to see any relief of symptoms from such a method. Are there any such reports? Any thoughts?

Recently a member in a DP forum reported using Benztropine (anticholinergic) to treat his DR and has been doing so for 20 years. In this case the individual is taking Pimozide (anti-psychotic) for Tourette’s – and this med specifically causes the DR. Also, he takes Anafranil (a tricyclic antidepressant) for OCD. 　 This prompted a search and finding articles such as this: Neuroleptic [antipsychotic/anti-dopamine] effects in Tourette syndrome predict dopamine excess and acetylcholine deficiency – http://www.ncbi.nlm..../pubmed/6128037 "Tourette syndrome (TS) may be characterized by relatively excessive CNS dopamine activity and by relatively deficient CNS acetylcholine activity" I thought this very interesting in that there is a similarity with Parkinson’s – the similarity being that the symptoms are caused by an imbalance between these two neurotransmitters. 　 Anticholinergics are on my list to try – it just takes a long time to try everything. That said, expectations have not been high but one doesn’t know until they try.

Excellent point. It seems that gene expression - particularly gene silencing - is very much part of 'malfunction' (disorder/disease). It is known that stressors (diet, environment - physical and emotional, sleep, outlook, drug use, etc...) can silence genes. Once silenced, then the body dose not fully function and one becomes susceptible to breakdown. Likewise, to some extent, changing how we live and react can reawaken a silenced gene. But mankind is a long way from charting exact correlations and how to fix a specifiy expression. Peptide research has been the most technically useful. As an example of how gene expression is involved: by the time a person is in their 20s, 90% of their genes are silenced. This is because they were used to construct (develop) a human being and are no longer needed since you are now grown. However, as a person ages, needed genes get silenced and we break down - this is where 'gene therapy' would be useful. HPPD is complex since it is a group of symptoms and very individualistic - in essence it is multiple 'diseases' under one roof. Thus medication response varies widely. Still, there are definate patterns and if these were more specifically catagorized, it would be helpful for treatment.