VisualDude

Jay, Do you remember (would you describe) what this "very ill" was? BTW your approach with Klonopin seems a good idea. Occasion PRN with a once-in-a-while Klonopin vacation (if I understand this correctly). Something you can't do with SSRIs or SNRIs.

Amitriptyline Amitriptyline is a tricyclic and tricyclics are 'dirty' (affects at lot of neurotransmitters). That sounds bad but usually works better with our types of problems (complex). Curiously, Parkinson's people generally tolerate tyicyclics well (but not SSRIs). I've used 10mg before bed and it helps sleep. While one visual feature was affected, it didn't cause serious problems (again I've used only a pediatric dose) So, don't be afraid to try ... just start with small doses. It wouldn't be for HPPD overall but rather insomnia, anxiety and depression. If you take large amounts it is blunting - makes you feel like being 3rd person. Gabapentin You notice effects within hours. When I started, I was curled up in bed 20 hours a day for a few weeks (losing 3 lb a week). Two doses (300mg each) and a day later, was no longer in this state - merely felt like the snot had been beaten out of me (which, of course, it had). Within a week was using 1800mg per day. Over the course of 2 years have reduced this down to occasional doses (PRN). Just got a 100mg prescription to be able to use smaller amounts more easily. Never found dependence like typically with benzos. And its action is reminiscent of benzos but adds relief from nerve pain. However, as with all anti-siezure meds, taper slowing (don't 'cold turkey') - this can be done fairly quickly. When tried to get off after about a year, started going in to the 'curled state' ... so resumed moderate doses. The 'dependency' was to original condition still needing to be treated. [Note: several doctors have warned me that Lyrica has dependency issues that Neurontin (Gabapentin) does not]

One of the problems with SSRIs and SNRIs is that in spite of how you feel on them, doctors insist that you give it at least 2 months to adjust and see if it works. Another is the dosage recommended by the pharmaceuticals (and thus written by your doctor). While these meds are considered relatively safe for most people, ours may be a different lot. My experience with SSRIs (Zoloft and Lexapro) is they increase anxiety. This physiology for some is known to psychiatrists. While each person is different (and apparently the famous Dr A does not say you cannot take a SSRI), I have to agree with 415. If there is relevance to 'dopamine' and 'brain injury' theories, then these are opposite of what most HPPDers need. My experience with Effexor was very bad even though using a graduated blister-pack (low dosage). By day 8, had to stop. Terrible headaches for 2 months. Afterwards, some cognitive functions were damaged - it has been 1 1/2 years and they haven't resolved. While it could be coincidence, it is a serious possibility. Anxiety can be a response to situations. It can also be a symptom. Chronic anxiety is about being out of control. IMO it is best addressed by learning to change ones thinking. Seeing a counselor to get an outside perspective to identify wrong thinking patterns. To learn to view life as 'the glass is half-full'. Then if still needed, use short term anxiety meds (benzos) to take the edge off and gain control. If the situation is too persistent/severe, then look at meds that calm the sympathetic nervous system. Save SSRIs and SNRI as last ditch effort. But if you are able to continue in work or school, then you already have some control over anxiety - try the non-long-term-meds-methods first.

Yea, both dopamine and GABA affect the parasympathetic nervous system (being calm). PD people have irregularities there, not just movement.

Seems everything imaginable is used recreationally. Flexeril (mellow yellow), NMDA (anaesthetic), gasoline, cough syrup, and even injecting ice cold water into the veins and watching a person convulse. However, it seems that drinking ice water in 'controlled' amounts is perfectly safe. But you never know ... maybe water should be a controlled substance obtainable only by prescription. Afterall, some people have died in water drinking contests (electrolyte imbalance). Water has been used in torture. And enema bags, wow, those things should be banned - look what it did to Sybil. They could even make out-patient-clinics to drive up to whenever a person feels dehydrated. Optional colors and flavoring could be added for public appeal. Competition would keep the price low. "Hold the pickles, hold the lettuce, Special orders don't upset us, All we ask is that you let us have it your way. Have it YOUR way, at Hydro-King. Have it ..." I must admit I'm addicted to water ... really feel like crap without it, killer withdrawals ... just don't have enough will power to break free ... there is nothing quite like the pure stuff! Sometimes you just got to super-size-it !!!

Sinemet (and any dopamine agonist) *ACTUALLY* makes my *VISUAL* symptoms improve - dramatically. Effect is noticeable at low doses. Klonopin and Gabapentin have minor effect on one small symptom. Highest doses tried were 3mg and 1800mg repectively Keppra cleared up DR (as defined as "looking at the world through an invisible barrior") for about an hour the first 2 times I took it. Never worked again (yet). Highest does tried 1100mg

Well, don't have much social life. But am strong willed and rarely do things because of others (am inclined to not do things because of others). As far a limiting drinking, the more I drink the worse I feel. Especially when taking little or no meds. So the feeling like crap the next day (even from one drink) does discourage use. Also some weeks I can have a shot a day without real problems. And on rare occations can feel better the next day. My brain is probably just a moody son-of-a-bitch so just have to go with the flow... Zokov, do you feel the klonopin changes the way you feel after you drink?

Dopamine may repair damaged connecting axons in vegetative and minimally conscious patients Perhaps we would get better faster if we went into a persistent vegetative state for a while ... On a more serious note, a neurologist told my primary to try me on amantadine but the latter was too nervous (though the med is mild). Have a new primary now and may try this one later. But have tried other dopamine increasing meds besides levodopa (Sinemet) - requip, selegeline, wellbutrin, and a COMT inhibitor. At anyrate, the neurologist was familiar with using dopamine agonists for brain injuries. He said, too bad I didn't meet him 2 years earlier (as I already had found this out) and that it is common to use these.

http://www.dpselfhelp.com/forum/index.php?/topic/28968-dating-sites/

Glad this is helping. It can be a useful med and has low toxicity and minimal tolerance issues.

As far a opioids go, have tried tramadol, vicoprofin (hydrocodone with ibuprofin instead of acetaminophen), and oxycodone. None help visuals, usually worsens. Overall feel better but have always been concerned about addiction/tolerance that can happen with taking pain meds we not needed.

While "Somatoform disorder" is considered 'mental', it is important to look beyond the surface. First, HPPD is a 'mental' disorder (it is defined in the DSM-IV which is 'mental' stuff). Any alteration of mental function is a 'mental' disorder including obvious things such as behavior changes from stroke or head injury. Since you took a neuropsych test, they were looking for 'mental' things. If you took a neurocognative test, they would look for more 'organic' (physical) things. Note that brain damage from solvents (a toxic encephalopathy) features "psychiatric symptoms of organic brain damage, including high somatic distress, depression, anxiety, and concentration difficulties." - Differential Diagnosis in Adult Neuropsychological Assessment, page 203. The primary characteristic of Somatoform disorder is high somatic distress, but with reasons unknown. "In people who have a somatoform disorder, medical test results are either normal or do not explain the person's symptoms" - http://en.wikipedia....toform_disorder Remember that HPPD does NOT show in an EEG, MRI, or CAT scan. This gives medical professionals latitude to call it whatever they see fit (and this will be biased according to their training). Therefore, it is important to consult with 'experts' familiar with HPPD. Even doctors who treat brain injury exclusively often are not familiar with HPPD - HPPD falling under the 'psychiatric' category. The important thing at this point is, what do the doctors expect you to do now? How are they going to treat you? If it in antipsychotics, that is unlikely to help. Find a doctor who knows or will accept (learn) HPPD.

Wow, can't image what that felt like! Has anyone experienced withdrawal problems or problems reducing dose?

Anyone else experience this during their EEG? I don't ... but CEVs and OEVs are not symptoms of mine. I want another one lol. Spectacular display. Get a Strobe Light for "Home Therapy" Dr A's report should get them in the right direction

From incontinence to water on the brain

Recently spoke with a doctor about trying Mematine (Namenda). He is willing so it is in the cue (which is getting rather long). Its considered a crapshoot but should be harmless to try. If possible it is best to work with meds that have minimum side effects and are not hard on the liver or kidneys. try to avoid things like sunglasses and such as much as possible Curious, what has your experience with sunglasses been? Visuals? I would imagine vestibular rehab would help too i.e. gaze stabilization but take it one step at a time Do you have vestibular problems? A doctor who specializes in visual problems from brain injury mentioned vestibular problems can be involved since the function helps to establish a baseline for where you are in space. Also, one technique employed is to do multiple things at a time – such as walking in a figure 8 and reading out loud from a page taped on the wall. Multitasking exercises help the brain to ‘expand’ function since often injury causes focus problems.

Thank God! I tend to get miffed about so called 'persistant migraine' and VS being 'persistant migraine'. Seems to be the don't-know-what-it-is-so-brush-the-patient-off approach. Especially since migraine is largely considered a vascular problem. Simple try - just take some Fioricet and see if it changes VS. Curious how they lumped VS with other visual anomalies common to HPPD.

Well, you've been major freaked out and stress will bring out more problems. Yes, SSRI is better than killing oneself. However, they work by blunting emotions which has its own problem (depersonalizing). Many on the forum report problems but there are a few who claim benefit. Also, Lexapro might be easier (less problems) than an SNRI. I am not a doctor [there - made the disclaimer]. The first thing to try is simple something to cut the edge off so you can get control of your anxiety. SSRIs are supposed to take several weeks to start working. A piece of Xanax will help panic anxiety in minutes. SSRIs are addictive (difficult withdrawals colorfully called 'discontinuance problems'). Benzos are too but if you use less than you want - just to cut the edge, they can be a godsend. If your doctor is willing to prescribe just 15 pills (0.25mg), it is easy to find out. And then just use 1/2 pill and see. Did you ask Dr Abraham about Klonopin? Someone here indicated that he thinks it is a good med. You may wish to search the forum and read about Klonopin, lots of love-hate info. However, as you are so new to HPPD (yes, 2 months is hell but still 'new'), the simple trial of Xanax may be better start. Tackling anxiety will be your top priority. Everything else will fall in place afterward. Since you have a lifetime history of anxiety, you have a big learning curve. But you are highly motivated and your counselors can help whether you take meds or not. Most anxiety is viewpoint in origin (the old, "glass is half-full"). So everything you can do to be around positives and even 'distract' yourself from these problems will prove useful. Various meditation techniques are also beneficial. Hope this helps

I do them together. And take in the morning.

An interesting quote from Dr Abraham (one of the very few researchers in HPPD) http://amrglobal.pow...es-no-undecided "Is pot dangerous? An old joke went, “Sure, marijuana is dangerous. A ton of it can crush a man.” But for the majority of kids a ton of dope is never at play. Saturday night adventurers are likely to be at no greater risk than abstainers. Far greater dangers await a kid using the gateway drugs tobacco and alcohol. The problems from pot arise in daily smokers, half of whom will move onto the felony drugs of cocaine, heroin, and the like. And pot should never be used by vulnerable persons, such as the mentally ill or addicts in recovery. If a kid claims to need pot as self-medication, he needs professional care, not backwoods chemistry." It would seem that the issues are dosage (amount, potency and frequency) and vulnerability. The biggest problem with vulnerability is you often don't know until it is too late - like the proverb, "How tight do you turn a bolt? Stop 1 quarter turn before it breaks" Also, there seems to be more vulnerability in growing bodies (before 20 years old) - links between developing schizophrenia from weed, especially Skunk and other 'stronger' versions. [Curious, ADD and schizophrenia disorders involve dopamine ] Ultimately, living is not totally safe and life comes without guarantees. However, you can improve your odds with life style choices. The surest way to not get HPPD or to get over HPPD is to forgo all recreational drugs - find other sources of pleasure/happiness. See http://hppdonline.co...general-advice/

Yes, but they are giving names to socially unaccepted behavioral patterns, and blaming physical, scructural problems for them. This is insane! I agree with this one I'm convinced that doctors don't know crap. The human body and especially the human brain are just too complex to do trial and error on Human knowledge is very limited, but if you are smashed in a car wreck, doctors can be quite useful. Medical practice and medical research are about 20 years apart. And drugs are big business, which skews the whole thing. I definitely won't be using any med until we KNOW what HPPD is. That may be wise. Certainly developing HPPD is a wakeup call about potential effects of drugs - but remember prescription meds are milder then recreational drugs. They are also consistent in potency. Also, HPPD is a multiple system malfunction. OliverW and Visual dopamine has nothing to do with our problem, men. Trust me. I swear You can swear all you want - but dopamine is a primary factor in my problem. Quality of life is substantially improved. You say "trust me" regarding an opinion on a med you haven't tried. Are you saying I, Merkan, or the few others who have benefited to not trust their own reality? Even if you had tried it and it didn't help - that is you, not the whole world. Dopamine's involvement for many with HPPD is too obvious to ignore. The evidence literally screams from the air. It is simply a matter of time before researchers rigidly define it through reductionist methods. Perhaps they will even work up models to help an individual know if it will help them personaly. One can wait or one can try... It is used by our entire brain, everywhere, from our motor coordination to hormonal balance. Good luck targetting a specific problem with dope meds. You are right, you can't target one spot. I am fortunate to need such as small amount since that minimizes side-effects. And yes, all meds (including Sinemet) have downsides. As far as Sinemet goes, it is simply an option besides Klonopin. It will probably help fewer than Klonopin will. And it may only help in conjunction with another med. But it not adictive and one of the safer meds available. And it is cheap (not sexy) Ultimately, if a person is able to pursue goals, keep a job, have a family (if they want), etc. - there is little reason to take any med. OliverW, I really don't know if Sinemet will help you - noone can know for sure. But it is a something you could talk to your doctors about. They may blow it off or they may be interested. But your famiily history is interesting from an "epigenetic" standpoint. And you already take a med that increases dopamine.

For B12 you will need sublingual (since this is where it is absorbed - though you can use shots, but they contain aluminum). Also use methylcobalamin since it is the most usable form (there are at least 5 forms of B12) As for cost, at least with the 'pulse' dosing, you don't use so much. Why do I believe in 'pulsing' ... mainly experience and based on the principle that when you megadose anything, your body counter-responds. With some supplements staying on high doses is actually harmful. I learned a few years ago about B12 for nerve damage from treating dogs that were paralyzed from disk injuries. I hate to plug brands but I use: Methylcobalamin from Klaire Labs, MSM from Vital Nutriants, Q-Avail and Ultra Gamma E from Designs for Health (learned the hard way with cheap vitamins). Neurons in the brain and spinal cord cannot replace themselves but are capable of slow repair (as long as the axons are not severed like poor Christopher Reeves). Peripheral nerves can regenerate new neurons and do considerable repair. In both cases, anything that supports these processes is a plus. It may seem fairly slow, but as you are already addressing, a change in lifestyle is needed. So after a lifetime of severe anxiety, worry, nervousness, laziness, sadness and general lack of taking any happiness out of life... this will be a key area to work with your counselors. While happiness is a personal accomplishment, there are many tools that help. Certainly anxiety is a life crusher. I have a similar history and it stemmed from childhood abuse. One thing that might help is that when you experience a moment of happiness (or any positive emotion), focus on it and see how long you can make the feeling last.

What symptoms are characteristic of dopamine disorder and what are symptomatic of HPPD? … I have never had anyone suggest I have dopamine disorder … I have a doctor who I am seeing now that specializes in addiction. He has not conjectured about l-dopa issues, but considering my symptoms he is fairly certain I have HPPD. I simply draw attention to the reports of people with HPPD responding favorably to dopamine agonists (dopamine boosters). As an example, response to Sinemet is ONLY if there has been injury to dopaminergic systems (like with Parkinson's) – that is its pharmacology. Yet apparently 30-50% of HPPD sufferers who try respond favorably. There are a handful of people here who have tried it. For some it does nothing at all (like drinking water), for others, the response is substantial. Schizophrenia, Bi-polar, and addiction especially runs in both sides of my family... Schizophrenia is a dopamine disorder treated with antipsychotics (anti-dopamine) http://en.wikipedia....f_schizophrenia Addiction is also a dopamine issue (the entire reward system is dopamine dependant) http://en.wikipedia.org/wiki/Substance_dependence#Role_of_dopamine Even Bipolar has some dopamine connection http://en.wikipedia....ine_transporter I am on dexedrine, 20mg twice daily Dexadrine increases dopamine http://en.wikipedia.org/wiki/Dextroamphetamine#Pharmacology As far as the ADHD stuff goes, I know i don't need it, but I do much better in school when I do take it ADHD relates to dopamine http://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder#Pathophysiology 　 You guys should stop believing all that dopamine, seretonin, noradrenaline bullshit. They discover 5, 6 different neuroreceptors and them suddenly they are the cause of every mental disease. "Lack" of a chemical. Seems legit. LOL. There are dozens of neurotransmiters identified. However, only the major players have enough research to give ideas of how and where they are used. The real issue is how all your neuronal circuits are functioning. If a med helps, bravo. Seriously, THINK. The neuroreceptors are just a tool used by it to perform some physical tasks. They are like the diodes in our computer ships. They have NOTHING to do with the internal software and have NO ability to "fix" something broken there. Please just think about it, and stop those meds! How long can you drive a car with a broken axle? Will driver skill make the car go indefinatily? Believe me, if a diode or transistor in your computer is blown, no amount of programming will fix the problem. Some cases, such as a specific memory location can be masked out with software (since how memory is used is a parameter of software) but if a piece of the CPU is blown – good luck. Time to buy a new machine. We cannot buy new brains. But there is a distinct advantage with a brain – plasticity. But note that only the most superficial damage can be rerouted without affecting the whole system. Larger repairs are detectable if not outright noticeable. 　 In the end, meds can be useful. But it is impossible to know what helps until you work with your doctors and try things. If a med helps (and its rewards are greater than its risks), then by all means use it a while. Now if HBB, who was at the point of suicide for years, feels 90% better on Keppra - then we should consider this. Also, bring out the party balloons and celebrate his success.