VisualDude

tension throughout their entire body, from head to toe Would you describe in more detail? Do you mean spasm or tauntness?

Briefly tried Propranolol for a short time to see if it would address visuals, tremor (or anything). It was slightly calming but had no real change. I avoided a long term trial since, unless there is significant benefit, there is no justification to continue with a med. And didn’t want to risk ED. Am surprised that Prozac helped visuals including color. Often increasing dopamine helps, and increasing serotonin tends to lower dopamine. Graves disease is no fun. And it is difficult to know if is to causal or just comorbid. If you Google "graves disease dopamine", you will see that there is a connection between the thyroid and dopamine. However, my brain is too tired right now to grasp what is going on or what is significant about it. Perhaps you can make sense of it. I will have to try later. I identify with several of your symptoms. The eye pressure feels almost like suction cups are pulling on them. Often wished I could somehow wash them out in the ocean (strange of course). Gabapentin relieves some of this and the light sensitivity. And may partially address (negative) afterimages. Do you find that your peripheral vision is VERY sensitive to motion? I am so scared because I have a 2 year old son. I feel like God is playing a cruel joke on me It is understandable. But you will not die. You are addressing your Graves disease – the more serious than the visuals. People don’t die from HPPD. They either get better or get used to it. You will be there to love your son and provide what he need. As for God, he isn’t cruel but it takes some getting used to, the fact that bad things are allowed. As for guilt about taking LSD. What is done is done. No one can change the past. The only purpose of guilt is to prompt one to change their course of action. You have already done so – you don’t take recreational drug and you try to live a happy, productive live. So ditch the concern and focus on the positives – this may ease your burden. Hope this is helpful…

There is familiarity to what you describe - just longer to fully develop than most. What was the medicine you took in the late 1990s? What was the blood pressure med you discontinued in 2006? What was the antidepressant you started then? What was the antidepressant you started in 2008? Can you describe in what ways your eyes started hurting? So now its been about 3 years and you are still taking some meds?

With schizophrenia, people might see things that are not there. But this is the opposite – missing or not understanding things that are there. When I started seeing in frames, it happened suddenly in about six seconds as if two planes separated apart.. Vision remained sharp and instantaneous, but meaning was continually delayed one minute. This lack of meaning would cause me to walk into objects even though they were clearly visible – just without meaning. Wondered if the left hemisphere wasn’t communicating with the right one. It really stinks when people think you are making it up. The movement and wiggling of object is the loss of proper synchronization/coordination of multiple visual processes. It takes time to get used to it. However, it is possible to get well too. What medications have you taken besides Lithium? Since you see floaters in one eye, how is your vision when you close an eye?

I do understand what the seizure threshold means but can you explain why this would happen. Can’t really explain, at least in a technical way. It is more an intuitive observation and feeling. There are complex feedback and feedforward loops thoughout the brain. Take panic-attack as an illustration. Too much fear response. It is crippling instead of saving one from danger. Benzodiazepines reduce the rate of neuronal firing, quieting the brain. So while panic isn’t epilepsy, both are excess activity and run risks of damage from excess glutamate. Again, if you hold a microphone too close to a speaker you get feedback squeal. Hellish anxiety is a system in runaway mode. There is a lot of empirical evidence with my particular disorder. So while DA restores regulation and coordination. More seems to be needed to ultimately resolve too much activity. My head aches and my body feels like its been beaten up This is what it is like for me. However, much of this I had before taking the meds, so it isn’t withdrawal but rather a return to the original problem. And don’t be surprised if the original problem manifests itself in altered ways. Before Gabapentin + Klonopin, was curled in a ball 20 hours a day with ‘phantom’ pain. Recently discontinuation brought this pain back, but at lower levels so at least I can stand.

I am not very patient with this kinda things as you might understand - Watch out for this one. Don’t know if it follows the pattern of ‘addictive personality’ but you need great patients. We all need great patients. Am surprised that such a small reduction in Klonopin is causing so great a reaction. First thought is you are dropping below a ‘seizure’ threshold that the med has been resolving – even if you are not technically experiencing seizure. You ARE experiencing loss of brain balance/control. It is pure hell. Have never taken more than 1mg Klonopin a day. Also, have never taken it without Gabapentin. For me there are very similar results between the two. And it is much more tolerable to change dosages of Gabapentin. Also, the Sinemet is very stabilizing. Recently went off all meds for a month so as to be evaluated by another specialist. Two weeks were hideous but was able to do it (though never was even remotely well). Now have reintroduced Sinemet and it cares for 75% of anxiety and most of the visual crap. [ Note: I blat all this extra stuff just to put comments in perspective so each reader can extrapolate for their own situation ] Anyway, hang in there and keep us posted

I tried Inderal. It was mildly calming but did nothing for visual symptoms or cognative issues.

Sounds like my neurological problems going blank in a new world. I also live in the cold north. And hours from the sea. But years ago would snorkel for hours at a time. It is a peaceful world. A beauty everyone should get to experience.

i tried my hardest not to go on medication because im the type who doesnt like to be doped up and change my chemistry by taking pills It is ever so fascinating that people who were willing to experiment with recreational drugs for pleasure are afraid to work with a doctor and try medical drugs to improve quality of life. The idea that unregulated, illegal drugs from dubious sources and of questionable quality is ok, but regulated, quality controlled (even more consistent than McDonalds french fries) and heavily tested though decades of scientific research – these are too dangerous to consider? Perhaps it is simply ‘once burnt, twice shy’. Or perhaps it is a stigma of using a crutch – oh, it is ok if it is support for a broken leg but not if it is support for mood or perception. The stuff permanently alters the brain. And that's just the way it is I would agree, but that doesn’t mean you cannot retrain around it and greatly improve one’s lot in life. Some have made remarkable ‘recovery’. until there are facts to prove that the "voodoo" works im gonna keep to the science Science: "The intellectual and practical activity encompassing the systematic study of the structure and behavior of the physical and natural world through observation and experiment" "A systematically organized body of knowledge on a particular subject" Does study and organization mean that enough is known that nothing else should be considered? What about Neutrinos? Dark Matter? Dark Energy? Furthermore, is science silent about ‘healthy lifestyles’? Or meditation? No, both are strongly encouraged for success in quality of life. Does Western science understand about chi or yin/yang? It seems to know less about this invisible energy than it does neutrinos – does that mean it doesn’t exist? It is true that testimonials can be as annoying as hell – they prove nothing. But people can learn from each other and things that have yet to be rigidly proven with clinical trials (which cost many millions of dollars) can be tried now. Take Keppra as an example – HPPD isn’t listed in the manufactures prescribing info. Yet it has been helpful for some on this forum. This post from hppdguru – how do we know it just wasn’t 3 years of time that is fixing things? We don’t. But nevertheless, this post has merit (potential benefit) to us and is added to our collective body of experiences. CAM therapies have observable benefits. So much so that there are organizations that are trying to standardize these and incorporate the modalities into Western medicine – even to the extent of being included in health insurance coverage. Why? Because currently medical practice has gaping holes that render it non-functional for millions of people. In the end, what is the risk/benefit ratio of these things? Diet, medication, acupuncture, homeopathy, massage, … very little downside. Maybe $$$ is the biggest problem. Or perhaps getting ones hopes too high and then crashing. But both can be managed. you may chose to wait for some miracle cure that will fix all your problems, but that day may never come The downside risk of waiting could be substantial. i knew after trying to find a cure and leave it up to the "professionals" … if i can get into it, i can get myself out of it In the end, we and we alone are responsible for our physical, mental, emotional and spiritual health. And we are the primary beneficiary. It would be narrow minded to think that everyone could be cured by self-determination. But it isn’t a stretch to say that everyone can at least derive some benefit. So why not reach out and try things that you haven’t? I've had this for 16 years now and the symptoms have never really changed, for better or worse. but my outlook on life has changed from despair and depression to a generally positive, happy outlook. This has come from healthy eating, exercise, surfing, challenging myself to do things out of my comfort zone, having good friends/family and working for myself doing something I enjoy. So, it is possible for some to have a rich life even it they are still stuck with HPPD symptoms.

Try a lower amount. Also, did you by a 'cheap' brand? Supplements are like food - there is junk food and junk vitamins.

Interesting topic. Most people I’ve talked to say that Neurontin (Gabapentin) and Lyrica seem the same. Though some find one better than the other. Some tolerate one but not the other. I use Gabapentin but haven’t tried Lyrica. Gabapentin is now generic and thus much cheaper. Also, a pharmacist told me that Lyrica has addictive issues not found in Gabapentin and thus, at least in New York, has stricter prescription protocols. I find Gabapentin similar to Klonopin and use both. Both help insomnia, anxiety, and ‘backlighting’ (smooth visual snow). Gabapentin definitely helped ‘pain response to motion in peripheral vision field’. There have not been other notable changes in visual problems. Theoretically it could be used to help with Klonopin withdrawals or to allow use of less Klonopin. [i’ve never taken more that 1mg/day of Klonopin. Gabapentin is often used in the 300-900 mg/day range, though I needed 1800 mg/day for about a year] It is prescribed for nerve pain as well as being an anti-seizure. Ironically, it increases my energy, which is the opposite of what usually happens – like benzos, there is likely to be a sedation quality. Have not experienced significant euphoria other than it reducing anxiety. Hope this helps… Penny, Would you please let us know the physical problems you developed from the drug?

As for advice, humm. For me, increasing dopamine substantially helped: frames, motion problems, contrast, night blindness, and depth perception. It also helped dim vision, visual snow (very mild for me), light sensitivity, insomnia, sexual function, pain, and moods. But how to get a doctor prescribe dopamine agonists is more difficult. But most will do Wellbutrin SR because it is classified as an antidepressant. If you have depression, tell your doctor and it may help. Wellbutrin has been VERY helpful but can only take small amounts (look over some of my posts) – it can be too stimulating, but is easily managed (just take less). Again, this is a drug somewhat opposite of Risperdal Because you have dense visual snow, many with this express that Keppra has helped them. I only just started working with this med and feel that it will be useful from me. Keppra is classed an anti-seizure and has been used for migraine prevention – note visual snow is sometime classified as a persistent migraine. So, see if your doctor will work with you with either of these two. It takes no great stretch of the imagination to classify your symptoms as a very mild brain injury/malfunction. As such, Keppra is justified. Also, dopamine agonists can be argued as treatment for damage to dopamine pathways (a form of Parkinsonism, even if you don’t have tremor) – one of my Neurologists is familiar with doing this. If your doctor is uncomfortable with helping you, ask him about centers that deal with brain injuries – these type of doctors are more familiar with the stuff we suffer. If I think of some more ideas, I’ll post them. Hopefully others on this forum have some good medication ideas as well. Wish you success with your appointment tomorrow ...

Would you describe you visual symptoms? (snow? frames? motion problems? contrast problems? walls bow or ‘breathe’? auras or starbursts?) Do you have muscle spasms, particularly in upper back and calves? How is your sense of smell? Same? Less? More? Tinnitis? Do you have a restless agitation, perhaps RLS? Dietary issues – food sensitivity? digestive problems? [ Sorry so many questions but it could be useful ]

Rozzer, Why did the doctor give you Risperdal? What other meds have you tried? What does the doctor want to have you try now? When you took Remeron, did it help anything? How long after Remeron was it before you took Risperdal?

Do you also have tightness/spasm in your calves?

Well, the warning is appreciated. However, it would seem that a person would want to work precisely on the affected synapses. Whether that be 5-HT2A and/or some other ones. After all, would it make sense to have a coronary bypass and replace the blood vessels that are healthy instead of the clogged ones? The real trick is understanding what has gone wrong for an individual – let alone a whole community. Perhaps it would seem that the best thing to do is do nothing for a year. Then if you haven’t healed, why not work with some doctors to find help? And whatever medicine they are willing to try – it will have issues and you are the one who has to live with the effects, positive or negative.

I think that Remeron would be helpful to me. But I have several dopamine enhancing meds and wish to turn attention to meds with other actions to fill in areas that are not responding to this type of drug. This is the only reason I haven’t tried it yet. Have discussed it with my doctor and it is in the cue. Remeron is NOT an SSRI. It does the opposite of an SSRI. It reduces serotonin usage in parts of the brain. See Pharmacology http://en.wikipedia.org/wiki/Mirtazapine So, if someone feels worse on an SSRI, then a anti-SSRI might be helpful. Also, is reduces activity of Muscarinic acetylcholine receptor – something done to treat advanced Parkinson’s or spasming caused by anti-psychotics (anti-dopamine). [ Note: the balance between acetylcholine and dopamine is critical for emotional stability and other brain functions. If you find that increasing acetylcholine causes you troubles, then this is a further clue about the role of dopamine in a persons disorder. ] It does increase norepinephrine – which may be of concern. Wellbutrin also increases norepinephrine. It has a net effect of a slight increase of dopamine output of the VTA. So you won’t know until you try it. It is somewhat complex. Am told it is well tolerated. As for harm, always work with low doses and time. Regular to high doses of many medicines are simply too much. What meds have you tried? I would not attempt a trial with Remeron. This med affects the 5ht2a receptors. Studies have been done where an anti phsychotic (risperidol?) which affected the same receptor had caused afterimages in people who did not have hppd. Remeron is not an anti-psychotic, but rather somewhat the opposite. Virtually every med out there has made someone sick. You have to work with your doctor and decide if the potential benefits outweigh the risks. And most negative side effects pass once you discontinue a med – again low doses reduces the chance of problems. Read the Visual Snow board, it's crazy alot of people have so many visuals from just ssri's… Again, Remeron is not an SSRI. Also, we have gill here who says Zoloft (an SSRI) actually helps him.

Well, you never know until you work with a doc and try things. Have you tried Keppra? What else besides Zoloft and Reboxetine have you tried?

Interesting, was considering Remeron because of its dopamine enhancing properties. But the doctor told me it is very mild and he has only found it effective for elderly people. It would seem that with use in conjunction with recreational drugs would give effects not desired. Same with overdosing. I found with Zoloft and all SSRIs tried, one pupil dilates (not both) and anxiety skyrockets. Have you tried anything with dopamine?

Notice that the illusion is based on the brain trying to process inconsistent shading (contrast perception) Here is another one: If you concentrate and 'widen' your visual attention to 'see' the whole thing, the wheels stop (and the letters above stop too)

For various reasons I’m in an unusual period of insomnia (vary rare for me). Vision is not worse from it either. I just feel like total crap – HA. I have 750mg pills that snap in half. You are smart with the tapering, it always helps with meds since they often rock-the-boat at first. Yea, hyperawareness has its own coloring. It seems that in many cases, over alertness may be involved: anxiety, seeing floaters, startling easy to movement in peripheral field, … "spread of brain signals" This sentence is very non-specific. Especially since all brain problems involve alterations in how signals are ‘spread’. Even memory (as a healthy brain function) involves changes in signals via various plasticity mechanisms. The study seems specifically about dyskinesia – largely considered an movement instability caused by the continuous ‘pulsing’ up and down of levodopa. Kind of like a ‘learned confusion’. This is a problem with very advanced PD (about 50%) and mainly treated with anticholinergics. Haven’t yet digested what SV2A is about. And it seems to be discussed in advanced neuroscience – so it a big learning curve. I’ll guess it primarily involves glutamate. And remember that in these pathways, and the whole limbic system, dopamine is a neuromodulator of glutamatergic neural activity (via the dual, opposite actions of D1 and D2 receptors). So in some applications, Keppra is being used to smooth out dopamine dysregulation. Note also articles about Keppra being used for treating augmentation from treating RLS. In the end, it seems that this has been a useful med for a lot HPPD sufferers.

Glutathione – Used extensively in whole body for cleaning up intermediate metabolites. As an example, this is what gets depleted in the eyes (lens) leading to cataracts. Also, this is the enzyme Tylenol can destroy causing permanent liver damage or failure. Glutathione is made from Vitamin C, E and Selenium with cystine as the major catalyst. So NAC is important for the recycling of glutathione. It works so well that hospitals will give it intravenously in cases of Tylenol poisoning. As for anxiety, don’t really know. Toxicity can cause anxiety so perhaps this is a link. Maybe there is another mechanism going on. It has never had any effect on emotions for me. Nevertheless, it is a very good supplement to take.

Phew – I know my circumstances are unusual and complex. But there are just so many ‘hits’ [pun intended] with HPPD symptomology. It is ironic that SSRIs and anti-psychotics are often the first response a doctor has when we complain of anxiety and perceptual problems – Ugh

For the most part, SSRIs and dopamine agonists make things worse for hppd sufferers I understand this with SSRIs but haven’t seen people here try dopamine boosting meds other than Wellbutrin, which is much more a NE agonist. Do you have accounts from the old board you could share about people actually trying DA agonists?

I hate when something happens right when I start taking a med/supplement Well, staying up like that is a recipe for problems. But I know what you mean. I just started Keppra, then unexpectedly got an appointment with another doctor who wants me to be off all meds for the examination (if possible). Furthermore, had a small setback a couple months ago that was just getting over. So it kind of taints things. The B6 is a good thing with your liver situation besides being recommended with Keppra. My 'tainted' Keppra trail: One thing I can be certain of is that it definitely hits on some of my 'compromised' pathways. Also, I clearly have to take B6. Without it, emotions are unstable. The general pattern is (one 375mg dose in morning): In about 15 minutes, very calming – slightly euphoric. In about an hour there is a shift in focal positioning with the left eye [long topic connected with work with NORA doctor]. Vision seems less ‘derealized’ but unsure if motion latency is actually affected. In about 4 hours, agitation. And thinking is less clear. Adding the B6 eliminated the emotional swings. Also, each subsequent day was easier – yet there is something powerful going on. Am really surprised that this small dose would have such affect. When trying Depakote - 1000 mg was barely noticeable (slightly calming) and had no effect on visuals. There is no doubt about it – this drug works with dopamine pathways, however remotely so. All I knew when I got the script from the doctor is that it works with a synaptic vesicle protein, SV2A (have no idea what this is about) and that some HPPD people say it helps them. So this afternoon I Googled: "Keppra dopamine", "SV2A dopamine" (and other permutations) Get a load of this: http://clinicaltrials.gov/ct2/show/NCT00076674 "Levetiracetam blocks certain protein receptors on brain cells and thus can change the spread of brain signals believed to be affected in patients with Parkinson's disease" And this abstract: http://resources.metapress.com/pdf-preview.axd?code=52q7823518018061&size=largest 　 Right now, after this combination of events, I feel like I started a leaf-blower in a dusty old attic and am still spitting out dust. Not sure how and when I’ll proceed next. Since am attempting a complete washout, it would be interesting to retry Keppra by itself. For now, the dust needs to settle. Keppra is definitely one for the toolkit. It is so strange – was deliberately looking for something non-dopamine because I thought I’d exhausted this one to the limit. Since I don’t have VS, had felt that this med would actually do nothing – HA! Look forward to hearing how your trial goes. Do you have the XL version or regular one? Also, what dose to you have?