VisualDude

Very skilled hypochondriac if you can generate a fever. Still, they don't much recognize low-grade fever .... aauughh. They don't much recognize Lymes here ... even though it was named here

If you are open, try amantidine

Was surprised that it affected liver function so much ... so much for the reports you can't OD or otherwise hurt yourself with it. Elevated liver enzymes is the sole reason for not taking Tolcapone. Welcome to "Keppra Rage" with its subtleties Loosing friends is a serious side-effect and a good indicator of how a med really affects ones behavior without them realizing it. Anticholinergics tend slow visual processing so can be helpful. And part of Keppras action is acetycholine. (You can look up how anticholinergics reduce response in flick-rate vision tests) Often use a small dose (~200mg) before bed to sleep through the night. More 'normal' doses trash memory and mood (rage). It does some funky visual changes but mainly improved DR a little and sedates. It is curious that something sedates yet promotes rage ...

If you have fever then you likely have infection. Take a long coarse of Doxycycline. BTW Doxy and many antibiotics can alter neurological function. However if you have an infection or parasite bothering neurons, it is imperative to treat aggressively and immediately.

Also, get a doctor (usually endocrinologist) to do an ACTH challenge test. Be sure to specifically ask that they also measure androgen and aldosterone. Often the test is just ACTH and cortisol.

Have you had a blood test for prolactine and testosterone? If not have these checked (urologist or endocrinologist). If so, what are the values? E messes with dopamine and serotonin. And who knows what it was cut with. E causes dehydration and now you seem stuck with the problem. Do you have dizziness connected with the dehydration? It is hard to know what the skin problem is about. But it is noteworthy that the skin and the brain are formed from the same tissues so there are sensitivities shared between the two.

As far as I know, you cannot get Lymes from a cat scratch. It has to be a tick bite ... and the tick needs to be attached to you 24 hours or longer (that is what docs here say). So if you didn't have a bloated tick to remove from your body, it is not likely. It is possible to get HPPD from a single trip. A few have got it from one trip on weed. And a few got it from antibiotic meds. Was your weed mixed with antipsychotics? - that would be nasty.. Often peoples symptoms of HPPD don't show up immediately after their trip. But it depends on the individual. I never did drugs and got it from chemicals from a badly manufactured carpet. Guess there can be many causes. Don't worry about your English ... with HPPD we all have bad English, lol.

Lyme is very heavy where I live. Lots of people with it. Don't have it self, though. Everybodys' dogs have it (but they tolerate it better than humans). People often think of it as rheumatic but it is primarily neurological is damage. Lyme can mimic most neurological problems. Rash is often absent. Blood tests sometimes give false negatives. The longer you have it, the longer it takes to treat. It is treated with doxycycline. No point being afraid, just get tested and ask for antibiotic. But you know that your HPPD was drug related don't you? There are lots of reports of pain (anywhere) with HPPD. Some feel it might just be more self awareness - just more perception weirdness. But some have frank, chronic pain. Ear pain is reported but mostly tinnitus. Be sure to ask for Prolactin test. Urologist do it anyway and it probably is fine. However if it is high or high-normal, that is a sign of low dopamine. Also, high prolactin causes lower testosterone which causes sexual changes or problems.

Bravo ... look forward to reading it Been thinking (uh oh lol). Wonder if one problem with getting help is that HPPD is solely a psychologically defined illness. It is in the DSM. Psychiatrists and Neurologist are trained at the same schools but eventually diverge into their respective speciality. Stroke, Alzheimers, MS, ALS, PD are treated by Neurologists. Whereas depression, bipolar and schizophrenia are treated by Psychiatrists. Dr A is a Psychiatrist. So his 40 years of HPPD research are primarily published in those journals. But HPPD is a neurological problem ... not an emotional one (though anxiety and depression are frequent comorbid conditions). Visual Snow / Visual Migraine are not considered psychological, so neither should HPPD. One problem with HPPD being treated by 'emotion' doctors is that they are oriented toward anxiety, depression, addiction/compulsion and delusion and think in terms of antipsychotics, SSRIs, and SNRIs. There needs to be a move toward consideration of HPPD as a 'hardware' problem, not a 'software' problem. And really, all the research agrees with this orientation.

Yes, some of us have this. How long ago did this all start? It would help if you answer the questions posed in your thread, "Do I have HPPD".

It is not likely to show on any sort of imaging since the problem is diffuse, not focal. And in spite of suffering, it is considered mild. A doctor will likely do an MRI and an EEG to rule out major stuff - which is a good idea anyway. Diagnosis is done "clinically". Clinical Diagnosis just means observing a persons problem and making a judgement. Medicine used to be done mostly this way. Even common neurological diseases such as Parkinson's Disease are diagnoses this way. The only accurate way is to dissect the brain when a person is done (dead). A growing field of testing is Neurocognitive testing. Basically a more extensive IQ type of test with written and verbal questions and pictures. A few questions: While you are searching for a doctor, do you have a primary care doctor who is willing to try stuff besides a SSRI? Did the SSRI change your hallucination visuals at all? (moving patterns with eyes open are OEVs, and with eyes closes are CEVs) The depression with inability to enjoy things may involve dopamine (hard to know). Wellbutrin is a dopamine based antidepressant you could ask for. Do you have problems with anxiety? Also, if you get Wellbutrin, work with a small dose only ... and get a pill that you can cut in half such as Wellbutrin SR. The relevance of getting a diagnosis is because medicine has become a business. So technically doctors can't legally prescribe medicine without a diagnosis ... at least that is what has happened in the USA. It is probably true in many countries as well. The good-old-days when the doctor was a god are gone. Now money is a god.

HPPD doesn't have a particular treatment protocol, so not sure how that particular diagnosis would open doors for you. There are some members in Europe that report getting diagnosis ... will just have to wait for those members to post a reply. However, if you want a diagnosis with broad treatment options, find a doctor who will diagnose you with Toxic Encephelopathy which simple means chemical brain injury. A Neurologist or an Environmental and Occupational Medicine doctor should be able to help you. Look for a Neurologist that specialized in brain injury such as TBI or drowning. Have you tried any medications and, if so, how did you respond? What are your particular visual symptoms? Also, any physical symptoms? HPPD is most often managed with Klonopin. Some have reported Lamictal helping. Also Klonopin. More recent some have had results with Sinemet. It is highly individualistic which meds you will respond to.

Thank god he knows ... Given the behaviour of mankind over the thousands of years, we clearly are insane, clueless, and stubborn. And all that without HPPD!

Nope

Try Keppra at bedtime

Never had actual DP, so can't speak for that one. Though Merkan got relieve from DP with Sinemet. However, it has done a lot for my visuals. Before, I had a 'motion-blindness' ... slow frame rate like a poor web connection ... about 1 second between frames. Also, poor contrast, night vision, dull colors, flat depth perception, fuzzy/blurry vision, lingering negative afterimages. These are fully addressed. There are things that are not addressed fully which include DR, starbursts, halos. Other things too but it gets tiring to remember and think about them all. Dopaminergic neurons often are in small regulating circuits. They use the term 'signal-to-noise ratio' in the same sense as with sound/electronics. These mini-circuit choose/fine-tune actions. For example, behind each photoreceptor in the eye is a dopamine neuron that 'decides' how much signal to pass on, thus spot adjusting contrast. They even link up groups affecting how much signaling goes to detail (focal visual processing) and how much shunts to movement (ambient visual processing). When these neurons run out of fuel (in the form of dopamine), they get stuck in whatever state they were in. Levodopa provides raw material to make dopamine. While there are interrelations, such as my halos are better because vision is sharper (so less blur to mush around into the halo problem), it seems that each HPPD symptom has is own circuit/set-of-circuits involved. So the mechanism is slightly different. But if the defect involves micro-managing, there is a good possibility dopamine is involved. If scientists ever get interested in us, they would have a whole lot of fun. Great job if they were paid by the hour. Would that it be so simple that we could just take a pill and make it all go away ...

'Original' antipsychotics work with suppressing D2, not serotonin. Modern 'atypical' antipsychotics reduce D2 less strongly and increase serotonin - and according to current understanding, shouldn't actually work at all for delusions (just another we-don't-know-what-is-going-on). Levodopa (Sinemet) has no direct effect on serotonin. That being said, nudge one transmitter and it will affect another to some degree. I'm a 'Sinemetty' ... it is very helpful for me. Dr A's dopamine hypothesis is based on COMT metabolism so, technically, his point of view is that Sinemet would have little response. His Tolcapone + Sinemet trial had about 1/3 of people with good response. And there was a clear distinction with non-responders. Therefore only some of HPPDers have a frank dopamine problem. 5HT2a is an inverse receptor in the visual system (inhibitor), and it is the 'active-point' for most hallucinogens, therefore it is implicated besides dopamine. There have been no studies on Sinemet alone ... and I may be part to blame because of my promoting that people try it or other dopamine enhancing meds ... it's just that when the shoe fits it is extremely comfortable! ... and it is also an avenue that all doctors ignore.

It is a mild anti-seizure med thats been around for 30 (?) years. Neurontin is the brand name. Gabapentin is the generic name.

Only for the rest of the day ... no lasting harm done.

It has been 19 days so far. Good stuff. One pill (100mg) was too strong so went to 1/2 pill. Still a bit strong so stopped Sinemet. Five days of that started problem as levodopa levels went down. Had to boost gabapentin. So then took with Sinemet and leveled off. Finally stopped Keppra before bed (for sleep). Sleep a little choppier but ok. Schedual now is: 50mg Amantadine with 1/2 Sinemet 100/25 upon arising. 1/2 Sinemet at noon. Sometimes 1/2 Sinemet in afternoon. 300mg Gabapentin 1 hour before bed. Not a lot of medicine really. Am better off than before trying this med. Time will tell though... Amantadine is odd. It was developed for bird flu 50 years ago. Accidently discovered it helps people with Parkinson's. Still don't understand how it works in this regard. It: increases dopamine release inhibits dopamine reuptake increases norepinephrine mild MAO inhibitor (increase dopamine, norepiniphrine, serotonin) anticholinergic mild NMDA receptor antagonist reduces brain inflammation (neuroprotective) With all this it is difficult to understand which parts are most useful for HPPDers Anyone else tried this med?

How is the Sinemet trial going? How much do you take each day?

Aaaaahhhh ... was waiting for someone to pickup on this. Think he was talking about diagnosis more than treatment ... not sure Anyone read about this http://en.wikipedia.org/wiki/Flicker_fusion_threshold Something to think about by those affected by floursent lighting, especially older ballasts. I've done this work with an Optometrist. The colored light were helpful ... particularly with DR and hypersensitive peripheral vision. It widend the area of focal visual processing which was surprizing - thought these areas were strickly static, not dynamic. I strongly recommend visual therapy and training. Anyone near Albany should try this guy http://www.optometrists.org/fox/

With me it heat would trigger it particularly the beginning of summer. Just sitting in a place about 70 degree F, heart would be 120bpm (normal for me is 55). This, along with uneven pupil dilation, are from autonomic nervous system problems. While not as severe, people with PD have autonomic problems. Dr A also mentioned autonomic problems with HPPD in his recent interview. For me, gabapentin helps both rapid heart and pupil symptoms.

I've used it and it reduces DR - the sense of being disconnected to world like a glass barrier. Any anticholergic med I've tried helps this including Keppra and Amantadine.

Several years ago tried neurofeedback. It involved a 4 probe EEG, a screen and headphones. Had to eventually stop as things started to get worse. The 'instructor' kept saying "you're a very strong person". Finally asked why and was told that normally "a person with that level of wave activity would be hanging from the ceiling screaming ... and better get some meds" as it is a serious problem. Couple weeks later got Gabapentin. Haven't tried feedback since. Well, that's my feedback, ...