VisualDude

Klonopin – Am only taking 0.25 mg before bed. Also take 300mg Gabapentin before bed. I sleep well and it helps anxiety. Just a little recent history on these: Went off all meds for a month for a doctor visit. Some visuals were worse, as were sleep, cognitive issues, sexual function, depression and killer anxiety. After exam, resumed Sinemet with enormous relief within hours. In a few days all these symptoms improve with anxiety about 75% better. Klonopin and Gabapentin added to help anxiety. However, while effective immediately, in a week it takes 2 doses, in another week it takes 3 doses. With the brain counteracting this way, it doesn’t make sense to keep upping the dose. So largely do the evening dose only and live with some mid day suffering. As a side note, both of these improve cognitive functions which is usually contrary to how people are affected. It seems that those who get significant improvement of their visuals with Klonopin need higher amounts (>2mg). 　 some kind of film over my eyes, it's like they need a good clean or wipe – This was my first symptom. And it will not wash out with water, eye drops, etc – hence I describe it as ‘oily’. This causes diffusion, especially in direct light, in the manner of cataracts. Only 2 things help this: 1) Patanol [prescription eye drop antihistamine] works for about a week; 2) dopamine agonists such as Sinemet. Please note this topic http://hppdonline.co...-itchy-ass-eyes problems with shapes, four sided ones mainly – This type of distortion has been directly affected by dopamine! Even flat surfaces can appear convex – especially if light is uneven/shaded. Negative afterimages – If I’ve been off Sinemet 6-8 weeks, I can get it to last over a minute by blinking. Otherwise, it is natural to have some negative after-imaging. http://upload.wikime...agenpov.svg.png There are dopaminergic neurons directly connected to the photoreceptors on the retina. One job is local (‘spot’) adjustment of contrast and, to some degree image persistence. Note: "…distinct functional modes of DA cell spike activity regulation in the dark and in the light that can subserve the observed sustained, transient, and light-independent circadian modes of dopamine release…" http://www.jneurosci.../3/692.full.pdf 　 sometimes things seam to sort of zoom in and then back to normal but this hasn't happened for a while now. – I also experience this, but it is unclear how much Sinemet helps here. DA is a key player however. This type of movement is due to lack of synchronization of the two major visual systems – Focal Visual Processing and Ambient Visual Processing. The former builds on the latter. And the latter system ties heavily in the mid-brain (major dopamine area). It also ‘pushes’ anxiety. ghosting – Clearing up the fogginess/blurriness will help. I do have some residual that is something else that doesn’t seem to be effected strongly by DA worse/more noticeable when i am in artificially lit environment – This is a common complaint. Yellow (incandescent) light is the worst for me. static vision but only at night – I have only the tiniest amount of visual snow and this is only in dark. It is effected by dopamine levels in my brain but it seems others on the forum get help with Keppra and/or Klonopin. 　 Based on the information you provided, it looks like Sinemet might help you a lot.

Couple thoughts: 1) If you still have the meds you picked up in Boston last year, you can still do the drug trial. 2) Tylenol - be careful how much you take. High amounts damage the liver and increase anxiety. How much are you taking?

Since Prozac (SSRI [serotonin agonist]) brought on DP and panic, perhaps somewhat the opposite would due. There isn't much in the antagonist department - mostly atypical antipsychotics which are not known to help HPPD. Usually antipsychotics are troublesome with HPPD. However, from the standpoint of the circadian rhythm, dopamine is an 'opposite' - it's levels see-saw with serotonin. There are a few who report help with Sinemet - perhaps 50% (but only a few on this forum have actually tried) For me, Sinemet helps these that you listed: anxiety, strange movement, brain fog, cognative issues, irritability and depression. Are you still taking Prilosec? Was this for h pylori ? You said you went to Boston to see Dr A. Did he forward suggestions to any of your doctors of things you could try?

Have you developed any muscle cramps, tension or soreness - particularly in upper body or calves (mild or otherwise)?

Wow ... I don't get VS but have an opaque white-out effect I call 'lack of black'. Your statement, "black doesn't exist" really hit home. Have wondered if I had 'smooth visual snow' ... but perhaps it is something else. I remember the first week starting a dopamine agonist - could see the stars so clear for the first time in over a year. This is one symptom that responded well.

Propranolol effectively reduces epinephrine (adrenaline) and norepinephrene (noradrenaline). It encourages the parasympathetic nervous system. Its uses are primarily for hypertension, anxiety and panic. Also for irregular heartbeats (sorry 1998, guess it caused them for you), tremor, migraine prevention, PTSD, and more. Since it effected you (both) so strongly, a lower dose would be in order if you were to try it again. Of course with HPPD (etc.), individuals get some really weird reactions. Personally, I find Klonopin an aphrodisiac and good for ED - go figure. On another note: I'll give another update towards end of week on the Sinemet. Please consider the morning only dose to 'ease in'. As far as you having anxiety from it, people with PD take a lot of Sinemet (in order to be able to move) and it can increase anxiety. Norepinephrine is made from Dopamine and Epinephrine made from Norepinephrine - so you can see the logic of stuff like propranolol. Curiously in spite of this spill over effect, Sinemet tends to lower blood pressure so you don't take high amounts of beta-blockers and Sinemet unless you have hypertension. Anyway, some ideas to talk with your doctor. Unfortunately, what is needed for one part of the brain may be the opposite for other parts. And recreational drug use weaves a tangled web. Quick question. Is the Neurontin better than Keppra for you? I had to use Neurontin for brain overactivity (not quite the same thing as epilepsy). Only recently have I tried to try Keppra. The first time it hit me like a brick but then had to stop because a doctor wanted to examine me without any medication at all http://hppdonline.co...-while-driving/ Recently tried it again. It didn't seem to do much, then got sick with the flu so the eval got messed up (again). So, will try it again later - its getting like a yo-yo with this trial. So I can't tell you which is better - they are very different. I can feel it has some dopamine effect, but it is subtle and not well documented.

Thanks for the info. I applaud you for being brave with trying all these meds. It is good to try to find out and it also is usually necessary in building a working relationship with doctors. Most docs proceed just as you have experienced – they have to really think outside the box to ever try dopamine meds (medical practice is about 20 years behind medical research). Amytriptyline is one of the few serotonin increasing meds that is tolerated by Parkinson’s Disease (PD) people … largely thought due to its counterbalancing effect of reducing acetylcholine. It does affect a lot of neurotransmitters. From time to time I’ve taken 10mg before bed to sleep. But benzos are much better for this. Also, it worsens night vision (‘lack of black’ issue). 50mg dissociates me to 3rd person status for a day. Celexa and Lexapro can be rough though they are now popular with doctors. Your reaction was predictable for HPPDers. I took Lexapro a couple weeks during a ‘crisis’ and the only effect I noticed was the need to double Sinemet. I developed anisocoria while taking Lexapro but it is hard to ‘prove’ whether it would have developed at the time anyway or not. Either way there is definitely permanent damage to the parasympathetic nervous system. (Again, PD people have parasympathetic nervous system defects). I could never in good conscience recommend SSRIs to people with brain injury, PD, DP, DR, or HPPD – but it should be noted that some claim benefits from SSRIs. Valium is very useful but develops tolerance the fastest of all the benzos (even within days) – probably why the doc won’t keep you on it (yes it is more addictive). In spite of its very long half-life, it is effective for me for only 4 hours. It doesn’t affect visuals. Cymbalta is a SNRI drug. These types of drugs are the newer generation antidepressants. Haven’t tried this one but tried a similar one, Effexor two years ago and went through hell for 2 months (after 1 week dosing). Have also lost some cognitive functions ever since. As a side note, Cymbalta can be liver toxic for some people, though it is not often published – know one lady that by the third day her eyes turned yellow from jaundice. However, it is too bad the med didn’t work for you. Lyrica – what is your current dose, 600mg? Antiseizure meds are often important with brain malfunctions. I use Lyrica’s older sister, Gabapentin (Neurontin) at fairly low dose now. Keppra and Klonopin (which you are using) are also antiseizure meds Clonazepam – In my use of Klonopin and Gabapentin, the effects on visuals are minimal. At low doses they help the night-vision issue (though usually Sinemet is enough). Initially at high doses it helped ‘visual pain’. Now this is better and higher doses increase the defect of ‘movement of static objects’ a little. Both of these are helpful with anxiety but about 75% of it is handled by Sinemet. 　 Since clonidine is making you feel poorly, have you started to reduce it? Curious that it makes you crave cigarettes since it is used for nicotine withdrawal. There is a connection with nicotine and dopamine. Smoking reduces the likelihood of developing PD in half (of course that doesn’t mean it is healthy). Smoking increases a lot of neurotransmitters: "When a cigarette is smoked, nicotine-rich blood passes from the lungs to the brain within seven seconds and immediately stimulates the release of many chemical messengers including acetylcholine, norepinephrine, epinephrine, vasopressin, arginine, dopamine, autocrine agents, and beta-endorphin." - http://en.wikipedia.org/wiki/Nicotine And there is a connection between clonadine and dopamine - here are just a couple references: http://www.ncbi.nlm..../pubmed/2569981 - Clonidine modulates dopamine cell firing in rat ventral tegmental area http://www.sciencedi...024320588905000 - Clonidine regularizes substantia nigra dopamine cell firing My gut feeling is that you would probably benefit from trying Sinemet (but as a disclaimer, I am a nobody so don’t really know). The reactions you describe so far seem to be good indicators. It would further help if you would detail your visual symptoms even though you are used to them and they are not your primary concern. Otherwise, hope this is helpful

So the amount of help you get has stabilized - no more 'progressive steps every few days'? Note about opiates. From time to time I take small amounts (am a light-weight ) - 1/2 tramadol 2 or 3 x a day or 1/4 vicoprofen 2 or 3 x a day. They certainly help pain and mood. However it does cause some visual difficulties. Basically reduces contrast ... in particular night vision is worse - a 'white out' effect I call 'lack of black' (smooth visual snow?). Perhaps DR is a little worse (if so, only very subtle). Have not tried higher doses since if you take pain meds above need you develop addiction Have no idea how others are/would be effected. Opiate circuits are related to dopamine circuits but beyond motivational circuitry, am unfamiliar with its roles. Thought it best to jot this info down for members. Thank you for keeping us posted on your progress

C Numb, So you had no visual anomalies for 5 months, then it hit you like this? You mention CEVs are better, what are your other visual symptoms? Especially since you mention symptoms more severe than most members.

I find that Sinemet helps motivation, labido, brain fog, anxiety, and a number of visuals such as halos and acuity (sharpness/clarity) - so am biased about it being beneficial. If you read the few recent trials here, Greg (who is just starting is concerned about anxiety increasing a little) but the rest either have zero effect or it helps them alot. It is good your doc is considering it. If you do try it, only a small dose is needed. I've posted a bunch about it and you may wish to start reading this thread http://hppdonline.com/index.php?/topic/495-the-one-thread-about-levodopa-preparations/ Some seem to like Keppra - certainly more have tried it - but Sinemet may be more effective in your areas. Do note however that few have actually tried Sinemet. Estimates about beneficial effects seem to be about 30 to 50% It would help if you describe the benefit you get from each of the three meds that you are currently taking. Particularly, how does Clonidine effect you?

Greg, have you tried Propranolol?

Please describe the type of visuals you have. Foggy vision? Poor contrast? Depth perception issues? Sluggish (frames or drunkenness)? Instability (wiggly, movement/bowing of stationary objects)? Color distortions? CEVs? Some of these dopamine 'cleans up' right away. Others it has no effect. Some may 'destabilize' a little as your brain adjusts - just like twitching/tremors. Do you have symptoms other than visuals and anxiety? COMT inhibitors are stronger than Sinemet. While it isn't sure how you would react, generally they are a 'punch' compared to Sinemet. They are used by PD people who do not respond to Sinemet ... and they are to be taken with Sinemet at the same time ... and (regrettably) they are hard on the liver. It won't hurt to try if this is what Dr A's trial is. He will require you be off all meds for a couple weeks (for Klonopin it will be 1 full month). Your positive responses to antipsychotics seem interesting. And Cymbalta remarkable - it boosts norepinephrine (far far more stimulating than dopamine) and it boost serotonin (usually difficult for HPPD people). Clearly the GAD is a factor to manage. I do well with Neurontin ... it is #2 and used more than Klonopin. Perhaps try this: just take 1/4 or 1/2 Sinemet just once a day (in the morning when you get up). Do you still have Neurontin in your cabinet? Give yourself time to adjust for all the changes and keep Sinemet low. Since it helps your thinking, socializing, motivation and productivity - it would seem clear you need it. The question is how to balance the other parts of your brain. Again, give yourself some gentle adjustment time.

Yea, the antipsychotics that you took/take took me by surprise - usually not good with HPPD. But, of course there can be other problems to need such meds for. Was reading some Parkinson's disease stuff and was surprised that, some can tolerate Seroquel and a few other antipsychotics. I had 3 main symptoms from Abilify. Two went away in about a week (in accord with it's half-life) but the agitation/RLS took 6-12 months to resolve (and only took 2mg dose twice). The GOODs that you mention seem excellent and characteristic of the med too. More about 'twitching' and the like: The twitching isn't surprising - especially since you've been on 'anti-dopamine'. One neurologist said that, "your brain has to relearn what is normal". These words have proven true. I've never had smooth control of the left fingers, mainly when 'releasing'. With any dopamine med (- or +) it changes the control I have for this 'delicate' type of movement. As a "hardened" Sinemet user (lol), over the years control of fingers has improved greatly. Also, it is far less affected by changes in dosing. Initially any change in dose changed movement control. Have been trying to learn to play the guitar [by the way, I kind of stink at it]. So in this context, smooth control of fingers, especially the left hand, is important - is very noticeable. I cannot say how it will be for you or anyone else. It has become clear, looking back, that I've been very dopamine depleted (but do not have PD). If I take no medicine at all, in about two months I can barely function. However, on the positive side, a number of dopamine related symptoms remain improved even without the med. You say some of your visuals are a little better. Can you tell us which visuals are better and which seem the same? You say some anxiety/agitation? You also have adjustment to discontinuing the other meds to deal with. You may do best to have a little anti-seizure type med. How was it Lamictal helped - was it anxiety or visuals? Are you taking any other meds at this time? There are lots of anti-seizures available besides Lamictal. Have you tried small amounts of Klonopin? Sorry about so many questions ... but am hoping to help members better understand what they can reasonably expect. Also, to be helpful to you, if possible. If you do fly out to see Dr A, detailing these things will help your appointment to flow efficiently. Thank you very much for sharing your experience.

I got sick from chemical poisoning in a building (not a drug). Symptoms included: fuzzy/blurry vision, poor depth perception, poor contrast, night vision problems, dull color perception, bowed walls, movement of stationary objects, anxiety, depression, brain fog and various executive system malfunctions, tinnitis, peripheral nerve damage, reduced coordination, motion latency (seeing in frames and like being drunk), loss of sexual function, reduced sense of taste and smell, DR, ... Leefulford, the symptoms that Sinemet helps seem to fall in a couple categories. Don't worry about hopes being dashed. It can be a very subtle med or it can be dramatic if you have a high need in dopamine circuits. Just be calm and keep the mindset, 'what the heck, there is little to loose' ... you don't need to set yourself up for disappointment ... that can be hard to do sometimes but if you've had this for a long time, you know the ropes. What are your symptoms? How long have you suffered? What have you tried? The answer to these questions may help gaining understanding of what you might expect. Lundgren, if you were to put a % on how Sinemet helps you, what would you estimate? (and yes, you are also taking other stuff)

Would you please ask David to share some info about what he was stunned about? Thanks Otherwise, glad you have most your life back

Yes, tinnitus has been a problem. Often connected with inflammation and/or 'hot' brain. Better now.

Without betraying personal confidence, how did your visit go? Have you tried dopamine agonsts before?

Was wondering how you would respond since you like Abilify. Abilify makes me quite sick, but everyone is different. While Sinemet is quite mild and 1/4 pill small, don't be surprized about any twinges are shaking - particularly having been on Abilify. What is the size of your Sinemet pill? 25/100? Hope things go well for you and thanks for posting

i really thought this drug was more. I'm so glad I never tried it or I just would of been so disappointed What more did you want with this drug? To make you rich and surrounded by 7 beautiful horny women just wanting to have your baby? Each person must decide what to do with your own body. If you don't wish to try, that is fine. But kindly don't mock those who have been helped. Or others working hard to get the doctors to try it for them. Its hard enough to fight for something that, at best is a 50/50 nickle toss. I've tried them all and ... speaking the truth Better read your post over, you've missed one.

The feedback system was actually a 2 lead EEG (as compared to a full 26 lead unit) connected to a computer which displayed bars in different frequency bands (like an equalizer meter). It played music and would change the volume as a 'feedback' to respond to. There wasn't a number to read as far as I could tell. The reading were wild compared to those around. The doctor strongly suggested I get my problem tested and resolved because the levels were not 'safe'. Was on10 mg valium and 100 tramadol at the time just so I could get out of bed. However, back home the doctors were so focused on anxiety and depression they would not do an EEG. A merciful doc gave me Gabapentin and after 2 doses (300mg each) things got much better. Had been loosing 3 lbs a week. Soon was taking 6 doses (1800mg/day). It took about 2 years to be able to get off. Tried a couple times but would end up curled in a ball again. Now, I can survive just on Sinemet but 300mg before bed makes the world a better place. In general, antiseizure meds help me think clearer but don't touch visuals or other stuff the Sinemet does. I've had two major rounds of 'toxic' brain injury. This crap started with the secondary injury. The first cause the visual problems which are mostly cared for with Sinemet. Biofeedback devices are supposed to be good. My trial aggravated problems. Perhaps that is more of problem of epileptic type issues, though have never been diagnosed as such. It seem a lot of people on the forum wonder if they have epilepsy, but it seems the actual definition of epilepsy is so ridged that even people that show abnormalities don't get diagnosed. Antiseizure meds are commonly used for brain injury even without epileptic diagnoses.

I find Sinemet by itself works wonders. It may be best to try one thing at a time. But if the doc will prescribe both Sinemet and Keppra, then you can phase them in as you wish. How did Lamictal help? What are your symptoms specifically? Sinemet seems best for certain ones but not much for other problems (just depends on what is going on in the brain)

In context of brain injury, this delay phenomenon is call "progressive secondary injury" and is common. Usually it is a few weeks but, as with Boogres, 5 or 6 months has been reported several times.