VisualDude

I tried a system a couple years back. There was a demonstration booth with 8 stations. The doctor that hooked me up to the EEG leads said I must be strong because anyone else with that much brain activity would be clinging to the ceiling screaming. I looked at the other stations at the feedback waves were only a tenth as on my screen. As far that the feedback, it made symptoms worst.

A few years ago, saw a psychologist and asked about HPPD. She knew about it and said it wasn't what I had because is wasn't from recreational durgs. Point 1 - There are some docs out there that know it. Saw an HPPD 'expert' who knew you can get it outside recreation drugs. He said that people with HPPD can live normal productive lives. And that HPPD was only a subset of my problems. Point 2 - You can live normal, happy productive lives if the problem is just HPPD Lastly, an old saying: "When 20 you worry about what people think about you. When 40 you stop worrying. When 60 you realize they weren't thinking about you anyway" Point 3 - Be selective about seeing help and wanting people to understand. Most cannot understand, and frankly their interest too understand is limited. Find happiness in understanding yourself and finding ways to function better. Humor helps. If anxiety is unbearable, find something to cut it. Solutions are there, even if it is just coping. We have a somewhat 'private' battle.

Also, banannas help with muscle spasms. Bananas have dopamine (mainly in the skin). Many years ago, nursing homes used banana skins to make a tonic for people with Parkinson's I wanted to try rhodiola rosea, but idk, it has an effect on serotonin Wouldn't worry about a little serotonin ... it isn't poison ... just that many people with HPPD don't do well with serotonin meds. As you see, some people feel Tryptophan help (and Tryptophan is a precuror to serotonin) Are there possible problems with taking Tryptophan? Tryptophan is a precursor to Serotonin. But also for the Kynurenine pathway. Increasing tryptophan increases inflammation. If a person is stressed at all, inflammation greatly increases. Prolonged inflammation is considered destructive to your health. So, another lesson about low dosing - even with supplements. Quality is also an issue. In USA, the supplement was banned because of causing deaths due to poor quality by the manufacturers. (Yes, another lesson about quality). A couple interesting links http://www.ncbi.nlm..../pubmed/1418026 http://en.wikipedia....yalgia_syndrome

This combo (and cycling technique) encourages nerve repair/growth ~5000 mcg of sublingual B12 – 1 week on, 2 weeks off ~1200 mg GPC – 1 week on, 2 weeks off ~3000 mg MSM – 1 week on, do what you want the rest of the time You got to use good quality ones. Also, take in the morning only

Curious, NAC - anti-oxidant and slight reduction of glutamate (reducing glutamate would be like increasing GABA) Valerian - binds on GABAA (the benzo site) Tyrosine - precursor for levodopa The first two are like Klonopin (only extremely mild). The last one increases dopamine very slightly

Funny, before my injury, used to take Xanax from time to time. Just a little amount was effective - 1/2 a 0.25mg pill. After the injury, it is like water - 5 pills does nothing. But then 10mg Valium helped a little for a few hours only ... whereas in the past it was useless. But Klonopin is helpful - but like most benzos, slow tapering is advisable. The change seems revealing. There are 5 different types of benzo receptors. So each benzo med has its own particular affinity. The shift from anxiolytic to anticonvulsant is significant and indicates the very nature of the anxiety. Both Valium and Klonopin have strong anticonvulsant properties. Xanax is a weak anticonvulsant. From a psychological angle, previously, all anxiety could be traced to thinking (even if buried deep). Now, this 'new' type is abstract ... without 'roots' in thinking. These 2 kinds of anxiety can feed each other - so both must be manages. Both Klonopin and Gabapentin (antiseizure meds) address the abstract anxiety. Now that a couple years have passed, take only a little Gabapentin and rarely Klonopin. Xanax is useful again but really needed - at least it is better than water again. Has anyone else noticed differences in their anxiety since HPPD (besides severity)? The very nature of their anxiety(ies)?

Red, Have you tried any meds since it all started? Are you taking anything now?

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Do you have any Gabapentin? I can interchange them somewhat, and it isn't a benzo. In a way, the lack of sleep may be the worst - that will spawn a lot of the other, though anxiety is hellish.

Glad you are getting help. Let us know how things go. Wellbutrin is often used to help stop smoking. Also, for me, it helps reduce some visual problems. Take care...

Boogres, would you please describe your eye pain? Also, have you had this same type of pain in the past? As far as NAC, it is in your body to clean up intermediate metabolites. If taking it helps you feel better - great. If taking it make you feel worse, just lower the dose for a while. It should be something that helps your brain be healthy or even repair some (antioxidant). Expect it to be something healthy to do for months or years. Since it is used to counter Tylenol poisening, it is pretty cool stuff. But like anything, you can take too much. It is being tested for psychiatric conditions as well.

Wow, 5 or 6 tramadol a day would wipe me out. What dose did your PCP prescribe you Sinemet for? 1/2 pill 3 times as you are taking now? Since you respond for 2-3 hours, you could try either 1 pill 3 times or 1/2 pill 6 times (with PCP permission). This is still considered a low dose. [For trial you can go up to 4 pills a day before needing a different formulation.] You could also extend dopamine with an agonist. Doctors seem to like Requip (it was useful but not well matched for me). 75mg Wellbutrin SR ever so often has worked as well but not everyone can tolerate this med. And there is time as well - as you are already noting progressive improvements. I forgot, do you have pain issues besides headache?

shaolinbomber, One word describes it for me. - Terrible. Although Sinemet helps a lot when it is active, the times when i'm at 100% dissociation are bad. To put it in perspective, mine is/was so terrible that I ended up descending into a heavy opiate addiction to escape. http://hppdonline.co...r-derealization You are taking ½ pill of Sinemet 25/100 (not CR) 3 times a day? How long does it stay active? Before Sinemet, did your DR vary and if so, do you know any contributing factors? The only other thing that I can say for sure that drastically reduces both visuals, anxiety and DP/DR are opiates http://hppdonline.co...nch-of-placebos So opiates help more of your visuals than Sinemet. But Sinemet helps DP/DR the best? But because of the high levels you must take and the corresponding dependency, you can’t continue on opiates? How much of which opiates help you the most? (this might be an important clue) It still has a reducing effect on my afterimages as well Negative afterimages? Positive ones? Both? [Warning, another boring lecture about the dopamine system] While dopamine has been called a ‘pleasure’ neurotransmitter, it is actually more ‘primitive’. At its best it is about motivation and reward. [Lets face it, what is sexy about how dopamine in the retina adjusts for contrast?] This main limbic dopamine system has 2 partners – oxytocin and opioid. You know all about opiods, lol. In context with dopamine, it is feel good. Oxytocin is also feel good, but more ‘sophisticated’ – it is about bonding, about friendship. Take marriage as an example. You meet a girl, fall head over heels, and can’t stop thinking about her. This is endorphins (dopamine-opiate system). While in this state a lot of life falls to the background. Generally your job performance goes down. You are likely to get into accidents. This level of endorphins cannot be maintained and falls away. After 3 years or so, relationships deteriorate (this is the biochemical reason behind '7-year itch'). But endorphins have done their job – you got hooked. Now it is time of oxytocin. While most commonly known as mother-baby bonding, it is ALL bonding. If a couple doesn’t not cultivate being best friends with each other, then as the endorphins go, so does the relationship. How does one stimulate oxytocin? In progressive intensity -- a smile … a handshake … a helpful hand … a hug … a kiss … XXX. The point here? Understanding dopamine role in pleasure. As a contrast, serotonin is the major ‘feel good’ neurotransmitter – but it is about self and is blunting. It doesn’t motivate. It doesn’t build friendships. It is highest when you go to bed – to help you to sleep. Whereas, dopamine helps you to screw first, sleep later. It feels like plateaus. Every 2-3 days after my 1st-2nd dose a new wave of emotions and familiarity washes over me and i feel even more connected to myself and my surroundings Are you saying that, even though the Sinemet looses ‘activity’, when you take it again you are progressing? When it wears off, are you back to the way you were before ever trying it?

One thing seems sure, there are no long term studies. But you can also be sure there never will be. It is very common for meds to loose their effectiveness over time. For some, like valium, it can be a matter of days. Glaucoma eye drops usually have to changed every 3 years or so. It doesn’t mean they are placebos. Some doctors use Sinemet for RLS. Often after a couple of years it no longer works. Perhaps this will happen with HPPD. I’m 3 years strong with it. Merkan G Lundgren is about 6 weeks strong … lol With meds that affect the brain, it’s plasticity response will inevitably change things. Other factors are involved as well. People are different – just read the variety of symptoms on this forum. And the combination of symptoms. And many are self-diagnosed as well. One can sit on the sidelines and wonder. One can intellectualize. One can try with success. One can try with regret. How skeptical should people be? People need hope. And hope isn’t hype – at least it shouldn't be. Which is more gullible – to give into fear or to try things? In the end it is a personal decision. Perhaps I should apologize if I’ve created hope. It has never been an intention to create unrealistic expectations of this drug. Only that dopamine is a major player that is ignored across the board – for DP, DR, HPPD, anxiety, and depression. And this is an industry bias – no other reason. It helps me. I’ve shared this experience. And given medical info as to the mechanisms involved. What other reason has this forum been created for than to share successes and failures and ideas? What is left? For people to do their own research. Set their own goals. Decide if fighting for one more try is worth the effort. Or even if they have the energy for it right now.

From everything I've read about people's reports here, I havent read much of people saying that Sinement helps much directly with hppd symptoms. Well as of this writing, six people so far isn’t much to report -- four people love it, two people didn’t respond at all positive or negative. [As a side point, how many meds do we know of that have virtually no side-effects?] However from "Dr. Abraham trial with DA substances there were 30-50% success rate" – that is pretty damn good http://hppdonline.co...et/page__st__16 As an example, I know longer see in frames – a HPPD symptom. And this is before ever trying Klonopin or Gabapentin. Seems to be more of an anti-depressant than anything. Dopamine is at the heart of consciousness, motivation and perception. So, theoretically it should help DP/DR (which a couple reports so far confirm). It should also help HPPD symptoms that fall within the domain of dopaminergic neural circuits (anxiety, contrast, depth perception, acuity, …). Depression by medical definition involves anhedonia. And anhedonia, according to neuroscience, is low dopamine. Furthermore, as indicated by both autopsies and lab experiments, depression is actually a type of anxiety. Dopamine is a key player in the amygdala – fight or flight (anxiety and numbness). However, if you don’t have a low dopamine problem, then Sinemet isn’t going to do much. SSRIs are used for depression but their effect is downstream and poorly understood – thus it takes 4-8 weeks to get results. These meds work with depression from other reasons. And klonopin does seem to help with some hppd symptoms for people. But being a depressant, it also dulls certain aspects of perception. If you check slide #5 in the previous mentioned link, http://www.pmr.vcu.e...ps/tbi_meds.pps, you will see that benzodiazepines (which include Klonopin) are "Cognitive Impairing Medications". However, Klonopin may increase a person’s energy and thinking which probably indicates too much ‘clutter’ is going on in the brain. This is the purpose of antiseizure medications. Perhaps this is why it helps some with HPPD – too much activity is cause OEVs and/or CEVs. So if a person is on klono and takes this, a lot of it may be simply the countereffect to the klono effects. My results were 9 months before ever trying Klonopin. The improvement in life from Sinemet alone was remarkable and beyond any expectations. I’ve had very little inter-effect from these two meds. But it might be different for others, perhaps both are needed to really notice anything. Klonopin and Sinemet are not even closely related. It is true that since prolactin is lowered in rats this is a strong indication that Klonopin raises dopamine, nevertheless, the drug isn’t noted for it. In the end, HPPD is symptomology of the breakdown of very complex systems in the brain. It would make sense that multiple drugs might be needed to treat an individual. what im still confused about is the recommended dosage. Reread this post - http://hppdonline.co...ons/page__st__3 Until we get more feed back, this small dose is what has worked with people so far and if a generic brand of Sinemet has had the same results or no? So far, generics are working fine.

Brain Injury There are a couple ‘models’ of brain problems the have been helpful is trying to understand HPPD. These can be very important for getting help from doctors. One, DP (Parkinson’s Disease), I mention a lot. The other TBI (traumatic brain injury) is also helpful, though it can be quite broad. While we don’t have TBI, please note this link http://www.pmr.vcu.e...ps/tbi_meds.pps As you browse, note slide #6 -- Cognitive Improving Medications. In eight lines of drugs listed, 6 that increase dopamine are recommended: Amantadine (D1 agonist used for PD and bird flu) Bromocriptine (D2 agonist used for PD) Dextramphetamine (Adderall) Methylphenidate (Ritalin) Sinemet Wellbutrin Moreover, NO meds that lower dopamine are recommended. So it is well known with brain injury that increasing dopamine is an important and accepted treatment. The question is, is HPPD a type of brain injury? That depends on the individual and on viewpoint. And in context of getting help, this view may help your doctor to help you. While HPPD is not TBI and it is not Parkinson’s disease, these models can give insight to what may be going on in our particular list of symptoms. This can help your thinking and raise points to discuss with your doctors. Some are hoping that medical research will eventually provide an answer. However medical research requires a lot of money. Drug companies are not going to develop new meds for us – we are too small a market. Furthermore, there isn’t much money in researching the effectiveness in existing drugs (especially if they are generic). This leaves much in our own hands. And in the hands of sympathetic doctors who are willing to try things even if it is ‘off-label’. Asking your doctor to consider your symptoms to be a mild brain injury may help. He may actually reply that this is obvious (some have said so to me). Again, this leads back to the point of the previous post about finding helpful professionals.

went to the neurologist, was hesitant to give me sinemet, instead sent me to get a neuropsychiatric exam so he could pinpoint what areas of my cognition were affected and thus close in on the brain areas that need help It isn’t so easy to get a doctor to prescribe stuff for you. Doubly frustrating is not even knowing if a specific med, such as Sinemet, will work for you. There are a lot of docs willing to try meds, but it is often limited to ones they have experience with. In general it takes developing a working relationship with a doctor over time. And a lot of these guys are a pain in the rear end. I’ve heard doctors say blatantly incorrect things. Part of the problem is the lack of number of cases. Most docs deal with the same old issues day in and day out. Take diabetes, it must be very boring to be an endocrinologist – the same answer: ‘lose weight, eat less, exercise, take insulin’ … then much of the time patients don’t really comply. (given that 95%+ of all diabetes is the result of lifestyle) As far as Neurocognitive testing goes, this is a very good idea if you can get it paid for. These tests are often about 8 hours and ‘exercise’ different parts of the brain to identify strong and weak areas. The quote in post #17 about cognitive problems with PD was, in the end, established by these tests. These tests will show LOTS of things that will NOT show on a MRI. 1998 has good advice about scheduling several doctors. At the same time, go ahead and see if you can get the testing done – the doctor is actually doing you a good service on this point. Summery – Try to work with your general doctor. If he won’t help, then seek a doctor familiar with treating brain injuries. Also, if someone is involved in research as well, then they may be more alert to try things (not just the same old boring things). If one doc won’t help, then shop around – you are buying a service, so require that they perform it.

I also use Gabapentin and find it similar to Klonopin. Have never taken more that 1mg / day of Klonopin. Both have minimal effect on visuals.

Strictly speaking, they are not opposites. And some people with Parkinson’s disease do take SSRIs. They are on opposite ends of the circadian rhythm – dopamine is highest in AM and lowest in PM while serotonin is lowest in AM and highest in PM. I am one of those who feels worse with increasing serotonin (something some HPPD sufferers report) but since you are taking one, it apparently doesn’t bother you. My experience with Lexapro (a SSRI) was I needed to take more Sinemet. And all meds tried that increase serotonin increase anxiety (a lot) and make vision worse (a little). Here is a New York Times article http://health.nytime.../treatment.html "Although depression is very common in PD, there have been surprisingly few controlled studies. Antidepressants used for PD include tricyclics, particularly amitriptyline (Elavil). Some studies have found that selective serotonin-reuptake inhibitors (SSRIs) -- which include fluoxetine (Prozac), sertraline (Zoloft), and paroxetine (Paxil) -- may worsen symptoms of Parkinson's. Doctors should monitor patients taking SSRIs." Obviously if Paxil is making you feel better, then you may wish to keep using it. And while you don’t have PD, the above quote indicates some problems with the two – it isn’t interaction but rather the underlying need these people have. Hope this helps…

Sinemet and PFC (prefrontal cortex). The PFC is where executive functions are performed – something that many of us complain about. "Executive function is an umbrella term for cognitive processes such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, multi-tasking, initiation and --monitoring of actions" -- http://en.wikipedia....xecutive_system There is a close relationship between dopamine and norepinephrine (see post above). Again using PD (the ‘gold standard’ disease of low dopamine): "Parkinson’s patients have marked PFC cognitive deficits, … show a progressive profile of deficits resembling frontal lobe lesions. These include working memory deficits, impaired recency judgement, decreased planning, and impaired set-shifting. Depletion of NE in the PFC may contribute to the array of PFC cognitive deficits … Ironically, the medications given to Parkinson’s patients often worsen their cognitive impairment. High doses of [sinemet] (which increases both dopaminergic and NE transmission) … are often required to restore movement … However, these doses are often too high for the caudate and PFC. These sites have a more modest depletion, and in the case of the PFC, requires more delicate catecholaminergic manipulations. Thus, patients are often left with substantial cognitive impairment." – Brain Norepinephrine, Norepinephrine and cognitive disorders, p417 To better understand what is happening here, small increases of NE in the PFC improve the ability to focus and remain undistracted. Larger increases of NE do the opposite and stimulate the amygdala (fight/flight) and ‘alertness’. Point 1 -- Some are wondering if Sinemet will improve fogginess and thinking ability. Low doses of Sinemet may help because of small increases of DA and NE in the PFC. Large doses may make thinking worse. Point 2 – This is another reason for low doses. PD patients who are advanced must take a high doses in order to walk, thus part of the problem reported in the above quote. Again, the chart above shows the trickledown effect of levodopa -> dopamine -> norepinephrine -> epinephrine.

i was looking at keppra but then sinemet came about and i dont want sinemet, keppra, and klonopin you know? also i dont wanna wait the 2 years that it would take to get completely off klono to get on sinemet. so any suggestions or ideas would help. If you wish to try Sinemet, there is no need to change anything else that you are taking – keep the Klonopin the same. what im confused about is if Klonopin decreases dopamine and helps people, how can Sinemet increase dopamine and help as well? "Clonazepam exerts its action by binding to the benzodiazepine site of the GABA receptors, which causes an enhancement of the electric effect of GABA binding on neurons, resulting in an increased influx of chloride ions into the neurons. This results in an inhibition of synaptic transmission across the central nervous system. Benzodiazepines, however, do not have any effect on the levels of GABA in the brain ... decreases the utilization of 5-HT (serotonin) by neurons … Clonazepam decreases release of acetylcholine in cat brain and decreases prolactin release in rats" http://en.wikipedia....wiki/Clonazepam Klonopin isn’t known for reducing dopamine (though the effect on prolactin in rats indicate the opposite effect - increase). By reducing both acetylcholine and serotonin, it will help ‘balance’ the ratio if you have low dopamine (another important topic). However, in the end, Klonopin acts like it increases GABA (through benzo receptors), which reduces brain activity. GABA does the opposite of Glutamate. These two neurotransmitters account for about 80% of all the body’s neurotransmitters. There are many complex feedback loops between all the brains systems but, again, Klonopin isn’t known for reducing dopamine. Klonopin, by design, is an antiseizure drug. These drugs reduce brain activity. Thus also calm anxiety (an overactivity) and make a person drowsy. If it doesn’t make you drowsy, then you may have an overactive brain. Just wondering, if adderall increases dopamine and norepinephrine, then why does it affect our symptoms so negatively? Good question and leads to a distinction between meds. There are many drugs that increase dopamine or its effect: Requip, Wellbutrin, Selegiline, Adderall, Dexedrine, COMT inhibitors, amphetamines, methamphetamine, cocaine, LSD, etc… Each of these drugs work in different ways. [ And a few report positive results from Adderall. ] Point 1 -- Sinemet (carbidopa/levodopa) is unique in that because levodopa as a precursor, it is not as forceful as many drugs. It will cause increase throughout the brain but it doesn’t cause huge changes unless there is a shortage in an area – then it is largely supplying a need. Point 2 -- Most drugs affect several areas and are complex. Take Wellbutrin as an example. It is a weak DA reuptake inhibitor [makes it stay in the synapses longer so is more effective] yet at the same time tends to reduce the production of DA, it is a weak NE reuptake inhibitor, it reduces acetylcholine (nicotinic), and weakly inhibits the H1 histamine receptor. Point 3 – Chain reaction. Norepinephrine is closely related to dopamine (one peroxide molecule different). Norepinephrine is made from dopamine (just as dopamine is made from levodopa). Epinephrine is made from Norepinephrine. Epinephrine IS adrenaline. Both epinephrine and norepinephrine are stimulating by nature. Whereas dopamine is more ‘enabling’. All drugs that increase DA will exert some increase in NE. Some drugs increase NE a lot – and this often makes HPPD symptoms worse. Furthermore, if a drug forces dopamine too high, then this will likely have negative effects as well. (see next post for some more details) So by increasing levodopa, you increase dopamine, norepinephrine, and epinephrine. Ultimately in the end, how much of any drug you take will determine its effects and side-effects.

It is good to proceed cautiously with meds as many of us have experienced some negative effects from things. For example, eight days of Effexor made me sick for 2 months (yet there are a few who like this med). Unfortunately the research we hope for may never come to anything. Right now we only know of a couple people researching dopamine and HPPD (please correct this if different). Fortunately, Sinemet is one of the safer meds to try. So far the reported response has been either it is helpful or does nothing - haven't seen people getting bad sick from trying it.

Balance, what are your visual symptoms?

I took dexedrine today ... almost all my symptoms except visual snow and and a bit of afterimages are gone If you had success with Dexedrine, then it is likely you will improve with Sinemet. Dexedrine increases DA and NE about the same (NE is more stimulating than DA). Sinemet mostly increases DA and doesn't make one feel speedy. does sinemet interact well with klono Yes, no problem. It is compatible with most meds. Anti-psychotics however do the opposite as Sinemet (anti-psychotics = anti-dopamine) does it improve memory? or fogginess? It usually helps thinking but it may not be the complete answer. In general, if you have any dopamine weakness, Sinemet will help things work better - and 'things' are a broad list. Sinemet often helps anxiety. Some get help with DR but it may also require Keppra. Do you feel that Klonopin is making you feel foggy or other negative effects?

Getting better depends on how bad you have it and how you live now to better your health. Since it has stayed with you for 3 years now, it is being 'stubborn'. A few questions: In what ways does Citalopramum actually help you? How much of each med are you taking each day? What other meds have you tried?