tlehmbecker

Jay, I would consider going longer than just two months, but that's just my opinion as I'm about 1.5 months into lamotrigine and still dosing up to 200mg (taking it very slow to prevent the rash), and I've noticed some slight improvements.

The other thing is that AEDs take a few months to have noticeable effects (as in you really start to notice them) and for HPPD this could take upwards of a year (according to the case reports though some improvement was noticed during dosing, but this is all individual and in your case, it may not be until a ways down the road that you notice improvements). I'm planning on sticking it out a full 12 months to see what improvements are to be had, if any.

I get this sometimes, they're what is known as scotomas or auras. It's somewhat of a common symptom in HPPD. 

It could also be negative after-images of blue tinted/colored images since yellow is blue's negative.

Did it help your hppd at all?

Now i'm on lamictal as well if you know about it and clonazepam, do those help if you know?

I have yet to be put on haloperidol, but I likely will be within the next few months depending on how the psychotic symptoms develop/evolve (presently they're at a very minor state, hearing voices a few times a week, mostly just gibberish/non-sensical statements).

I'm on lamotrigine (generic lamictal) and clonazepam right now. Doses I'm taking currently are 100mg lamotrigine, tapering up 25mg each week to a target dose of 200mg, and 2mg clonazepam in split doses. Been on the lamotrigine for about a month and the clonazepam for about 2 months per the Lerner study. 

As far as lamotrigine goes, I'm still dosing in and it takes weeks to months for lamotrigine to start working. The studies showing it working for HPPD show a timeline of 6-12 months with some improvement during the dosing in phase, which is about 2 months on average. I've noticed some minor, though hopeful improvements and I'm really hoping this med works out. If not, the next on my list is clonidine followed by naltrexone and then levetiracetam (levodopa is a no go because of the underlying psychotic disorder). One of the most significant is it has certainly improved my depression, which although has been present since my early teenage years got worse when I got HPPD, which of course improved my outlook on this shit situation to be quite frank. 

Clonazepam didn't do much for HPPD, but it improved my anxiety about it a lot, almost to the point that I don't care/worry about it anymore, which I think is sort of the point of the medication, make the person not care about their disease and let their body do the healing while they do other things. It basically made me functional again. Before, I could barely get through the day without breaking down or hiding away somewhere. Afterwards though, everything became sort of alright. The symptoms were still there, but I just didn't worry about them as much anymore. 

I think there was one case study awhile back on some Army prisoners about treating LSD 'flashbacks' with haloperidol. Since I have a developing psychotic disorder, my psychiatrist suggested haloperidol as well saying that it would either have a positive effect on the psychotic symptoms and potentially HPPD symptoms, or be completely benign and only treat the psychotic symptoms without touching the HPPD in a positive or negative way. I think this stems mostly from the fact that haloperidol acts primarily on the dopamine receptors at low doses (doses used primarily to treat positive psychotic symptoms like hearing voices, delusions, etc.) rather than the serotonin receptors, which seem to be at the root of HPPD hence why SSRIs and most other APs are a no go for us. However, for some people though, their HPPD seems to be linked primarily to their dopamine receptors and a potential lack of sufficient dopamine levels, as is apparently the case for a prominent member of this forum, Visual (a few others as well, but for the majority affecting dopamine levels through the use of pharms doesn't seem to help). If it's linked to dopamine, than any AP and non-SSRI AD is a definite no go, but that doesn't seem to be the case for you.

Have you considered a lower dose of Clonazepam? It seems that it is helping with anxiety more than the visual side of things, so perhaps a 1mg dose would be enough to reduce anxiety and be easier to taper off? 2mg is a pretty big dose to withdraw from.

 

re: drinking... It is a risky business on this combo, both in terms of physical harm (respiratory failure) and also having reduced inhibitions from clonazepam, which will lead to the "just one more beer" mindset. I'm not gonna preach, as I often drink on this combo too.... Just tread carefully, like you say, a few beers is probably fine... I just hope you have a better off switch than me when it comes to that "last" beer

I have considered a lower dose, but getting to that lower dose is still going to require a taper down to it. Ideally, I would follow the Ashton protocol and transfer to an equivalent dose of diazepam, which, if needed for managing anxiety I could take every 3-5 days considering it has a half life of 36-200 hours, with I think the average being around 80-100 hours (I think, not entirely sure so don't quote me, haha). My other option, which is what I'm considering, is a direct taper completely off clonazepam over the course of about a year to 5 years (long time, but best for avoiding WD symptoms) with a liquid taper and daily cuts of 0.1%-0.5% (2,000 days for 0.1% cuts, 400 days for 0.5% cuts, assuming I go completely to 0mg instead of jumping off at a very, very low dose, say when I get to  < .0625mg daily or thereabouts [that seems to be when most people "jump off" on a liquid taper]). 

The good thing is that prior to my official diagnoses, I was seeing a psychologist for my anxiety, which helped a lot for coping and dealing with anxiety/panic and still helps.

For drinking, I've never been much of a drinker, but I still like to enjoy a beer every once in awhile and I would still like to enjoy a beer when I go out with friends. With the exception of that one time, I'm remarkably good at self control when it comes to drinking, I always limit myself to 1 beer and often I don't even completely finish a beer (now) because of the lowered tolerance, thus feeling "buzzed" sooner than most and recognizing I should stop drinking. I guess it comes from the fact I've seen firsthand what alcoholism and substance abuse does to a person and a family (alcoholism/substance abuse has been prevalent on both sides of the family and in my friends, even costing one of mine his life). If only I had that much self control when it comes to eating, lol 

I've been on the cloneazepam for about 1.75 months and the lamotrigine for about 3 weeks, increasing dosage by 25mg each week until a target dose of 175mg-200mg is achieved (started at 25mg so I'm at 75mg daily right now), after which treatment is to continue for at least 12 months. Here is a short report of what has been going on so far in terms of symptoms:

Improvements:

• Anxiety/panic is almost non-existent (as expected with the clonazepam). I'm also much more social, and to be honest, I seem to be more bold, especially with regards to the opposite sex, you know flirting and whatnot (even went on a pseudo-date with a coworker whom I'm sort of pursuing as a romantic interest  ) even though I'm not the most attractive fish in the sea. Social interactions no longer scare the living shit out of me.
• Eye strain used to severely increase symptoms, to the point of almost being blind after sitting at my computer for a few hours. Eye strain now, while it still increases symptoms, does not worsen symptoms as severely as it did. 
• Ghosting/double-images are reduced in intensity and seem to be only concentrated around brightly lit or colored things now (gets worse when it's really sunny out). Also it seems I have to focus on something in order to get ghosting. Can also read text on a computer screen much more easily now.
• Depression. Significant improvements here, while I'm still fairly depressed, I'm nowhere near where I was about 2 months ago (constantly suicidal, self harming, engaging in purposefully risky behavior, etc.) 
• Brain fog/confusion/cognitive impairment/concentration problems. Again, much improvement here. I can think much more clearly now and no longer get frustrated when presented with a hard problem. I'm also currently participating in a research internship and am able to understand the rather abstract and hard to grasp concepts fairly easily (coworkers not so much  )
• Somewhat related to the depression, but I have a much more positive outlook on things now and am more optimistic and accepting about my mental/neurological disorders, of which there are 4.

Symptoms lacking improvement:

• Image trailing. Trailing is still constant and at the same level as it was when this all started.
• Oscillopsia/breathing objects. I still get visual jittering (things look like they're buzzing or otherwise moving) and when there are areas of high contrast gradients/edges (light to dark/dark to light), I still get severe breathing phenomena.
• Palinopsia/after-images. Still get both negative and positive after-images that last about the same time as before (a few seconds to a few minutes depending on image intensity).
• Light beaming/beams/star-bursting. Still get long beams of light that emanate from light sources and still get starbursting around highly concentrated points of light (headlights, streetlamps, LEDs, etc.)
• Visual snow. Same as before.
• Scotomas/auras. I still get the odd scotoma/aura every one in awhile, usually at random times and usually in the form of shapeless, colorless blobs. 
• Ghosting/double images. While there has been some improvement, it is still not to the level I would like it to be
• Depersonalization/derealization. While the grounding/coping techniques my psychologist taught me (and ones I came up with by myself like breath holding and cognitive interaction with my environment) help to ease and stop an attack, I still get episodes of DP/DR.

​Negative side effects:

• Fatigue, though this is expected with the combo of lamotrigine and clonazepam.
• Drowsiness and oversleeping. I have, on more than one occasion since starting this course of treatment, overslept by a large margin and either ended missing class or being late to work.
• Some sexual dysfunction. It's kind of difficult for me to keep and get a you know what for you know what purpose (a man has needs  ). Also difficult to *ahem* sow my seed in a timely manner.
• Decrease in motivation to do things. While I've always been kind of a lazy person, the fatigue and drowsiness from the meds just make me want to sit down and chillout for a few hours listening to some quality tunes. Sort of a stoned, couch lock feeling.
• Increased appetite, though this isn't that much of a bad thing.

Also, question for those who have taken this combo, is having a beer or two here and there while on these meds harmful? I do know these meds when used with alcohol increase drowsiness and decrease tolerance to alcohol, but so far I've found that small amounts of alcohol, like a light beer, don't do much. The only sort of scary experience I had was when I stupidly drank a few shots worth of high quality bourbon in a homemade cocktail. Woke up naked on top of a pile of clothes in my laundry room and not having a clue where the hell I was or how I got there.

I plan to continue treatment with the lamotrigine for the recommended time of 12 months. I know it seems long, but I think it will be the key to being rid of this disease. I would also suggest lamotrigine for the people of this board. It will take awhile for it to have any sort of significant improvements on symptoms, about 6-12 months at least. The improvements I described are minor, but nonetheless hopeful for me as they tell me the medication is working and having a positive effect. I do plan on tapering off the clonazepam though as I would rather not have to deal with benzo WD on top of all this.

Anyways, that's my report so far and I'll probably post another report at the end of the summer since I should be at the full 175-200mg dose of lamotrigine by then. If you have any questions, feel free to ask! 

That what I was thinking, I'm just not a big fan of the speediness it supposedly have.

Approximately one week ago I saw a psychiatrist for the first time and was prescribed escitalopram and risperidone (which I have yet to try for obvious reasons) for MDD/panic disorder and mild/residual psychotic symptoms, respectively. On thursday I decided to start the escitalopram @ 2.5mg per day in the morning after careful consideration. Here's a short chronicle of what happened:

Thursday, April 2nd (Day 1): Dose @ 8:20 AM as I'm leaving for work and class. At approximately 9:15 AM I start to feel it come on (sinus/head pressure, random "tingles" in arms and face, possibly placebo). Around 10:30 AM I start feeling a sense of calm and indifference, my mood is completely neutral. I feel neither depressed nor happy, a not necessarily pleasent in between, possibly placebo. My face, particularly around my eyes starts to feel tight, as if I were squinting or just came in from the cold, this lasts for another 3 or so hours. I'm sitting in my final class of the day, around 2:00 PM. I feel extremely fatigued and begin to noticeably nod off and almost fall asleep in class. I drink some water and focus my attention on the lecture. Still feel extremely fatigued though not to the extent of nearly passing out. Class ends and I go back to work for a few hours. The bus ride home is extremely hard as the fatigue and drowsiness will not go away. Food, beverage and homework alleviate this. I finally crawl into bed around 2:00 AM. The sleep is deep and beautiful with insanely vivid dreams (I awoke thinking I was still in one until my 2nd alarm went off). Visual symptoms remained unaffected thoughout the day, neither worsened or lessened by the escitalopram. There was also some mild anxiolytic effects.

Friday, April 3rd (Day 2): Dose @ 8:20 AM again as i leave for work and class. Same come up as before. Same neutral mood as before. A little before my final class of the day at 2:00pm I begin to feel a weird tension in my shoulders, arms and hips/thighs, similar to the soreness after a good workout. It isn't painful, but it is very unpleasent. I also get a headache on the left of my head (I've had these before though). I start to get a very weird feeling thoughout my body in addition to the muscle tension, like a buzz feeling, very similar to how I feel during panic attacks. I feel the need to get up and move. I excuse myself from the class and go to the restroom where I splash water on my face which helps to calm me down and I return to class. I notice my pupils are extremely dilated and my cheeks appear somewhat rosy. I also feel very warm in an unpleasant way. On the bus ride home I feel very, very fatigued/drowsy again and it is hard to keep from nodding off.  Again, some food helps to alleviate this. I go to bed around 4am and sleep for perhaps 4 hours and the sleep is nowhere near as pleasent as it was on the first night, surprisingly I don't feel too tired. I also woke up with very bad cramps and had to use the restroom almost immediately after waking up. The visuals remained the same as they had been all day, no worse or better.

Saturday, April 4th (Day 3): I dose around 12:15pm because I had slept later than usual from the previous night (bed at 4am followed by an awakening around 6:30, restless laying in bed for awhile followed by dosing back off again around 10:00am) and I just really wasn't feel too into taking the escitalopram again. Much the same as the first day, little to no adverse SE like I had the day before. I do notice a strange lightheadedness and feel sort of spaced out the whole day. There is also no fatigue like there had been the previous two days. I go about my saturday as usual. Late into the night I start feeling very strange, can't tell if it's the escitalopram or the lack of sleep. I almost feel delirious, very out of it and very on edge. I also start to feel that extreme drowsiness and fatigue again, though this is probably more because of the lack of sleep then the meds. I crawl in bed around 4:30am. I wake around 6:30 feeling unpleasently energetic, agitated and spaced out (the agitation was likely because of the lack of sleep). I toss and turn for awhile before getting up. After being up for awhile, drowsiness and fatigue hits like a train. I almost literally crawl back to bed and sleep untl 11:00am.

And that brings us to today. The visuals today were much worse, particularly the trailing and ghosting (i.e. double vision). The trailing today was much more noticeable, distinct, pronounced and longer lasting. The ghosting is also much more pronounced and severe. Reading text on my monitor is extremely straining and hard on my eyes now because the ghosting is so bad. Because of these reactions I am now thoroughly convinced I have HPPD and as a result, I will not be continuing to use the escitalopram. As much as I would like to be rid of the depression, I don't think I could handle potentially 4 weeks of worsening visuals just for some reduction in the depression. Not only that, by my anxiety now is linked to the visuals, so an increase in visuals will no doubt cause an increase in anxiety. Further, I also won't be trying the risperidone as that will no doubt worsen symptoms much more than the escitalopram. I also think the insomnia is linked to possible precipitation of a brief hypomanic episode by the escitalopram.

I'll be seening my psychiatrist again in a few weeks, so how should I go about telling him I think I have HPPD? I don't want to come off as dismissive of his diagnoses, which I feel are correct, or as resistant to treatment. I'm also fairly certain that he doesn't know about HPPD and if he dose, has very little experience with treating it.

Further, are there any antidepressants that won't interfere significantly with HPPD that I could recommend to my doctor? I would assume they wouldn't be anything that has to do with serotonin, but it seems like all the common ADs have some sort of effect on serotonin. Also, how long will it take for the escitalopram to clear my system and for the visuals to return to what they had been before?

Thanks

I don't experience visual snow or static or any other visual disturbance other than the ones described.

And please excuse my naivety, until reading through this site more thoroughly everything i had read and came across up until this point suggested that HPPD from anything other than LSD was rare and that it was even more rare for it to occur after a single dose. That being said though, I do think it is somewhat important to distinguish poly drug use from single experimental use. It seems like, to me at least, those who use MDMA are also more likely to use other, more potent hallucinogens which seemingly carry an increased risk of HPPD. But that is a topic for another discussion.

Anyways, the depression and anxiety are what gets to me the most since they've been present for much longer than this HPPD. I've been dealing with them since middle school and they took a turn for the worse this summer about the same time when I officially moved away from home. And at least for me, these two things are the most debilitating and therefore the two things I want treated most. The visuals are annoying and contribute somewhat to the anxiety, but I can still function with them. Sure, my eyesight might not be great, but at least I can get out of bed, go to class and go to work. The other two just seek to lock me away in my room, isolated and alone.

And I do understand that depression and panic disorder are often co-morbid with HPPD, but they've been around much longer for me.

This sounds (to me at least) like a clear case of HPPD or 'visual snow syndrome' (mostly the same symptoms as HPPD but not drug-induced)

 

If this is the case, drugs that aim to increase the availability of serotonin or decrease the availability of dopamine could make your symptoms worse.

 

You would be very unlikely to have a sudden occurrence of astigmatism in both eyes.

 

Some of your symptoms sound very similar to mine. See images:

 

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Symptoms are similar to those shown in the pictures, though not exactly. As I understand it, HPPD from MDMA is rare and even rarer for DPH (benadryl), which acts like a deliariant/hallucinogen at very high doses (typically 300mg or more, but my doses were nowhere near that). Which of course leads me to want to believe that I don't have HPPD. The other thing is that there are physical things I can do to alleviate some of the symptoms, such as holding my eyes wide open. Which again somewhat leads me to believe that the vision problems are of physiological origin rather than psychological.

But of course, it is known though exceedingly rare that HPPD can result from single doses and regular light dosing. If I do though, my symptoms appear to very mild compared to what others experience. When I see my doc in a couple weeks I'll mention HPPD and see if he's familiar with it. If he is, I'll talk about possible treatments. After reading through this site I'll suggest Keppra and clonazepam if he's familiar with the disorder. 

In the meantime, I'll try my prescribed medications at low doses and see how that turns out.

One of the few researcher into HPPD is a Dr Abraham.  He states "Developing HPPD without ever tripping on acid can also happen, but in my experience this is quite rare, and suggestive of another disorder in the nervous system that needs medical attention." http://amrglobal.powweb.com/category/hppd

 

I happen to be one of those "rare" individuals.  Time will tell where you are with it all.  You sound calm in your post, which is good.  Just patiently work with your doc and see how you respond to the meds.  I would suggest you start with just 1 at a time and see how you do ... if you do both at the same time, you won't know which one is helpful or otherwise.

 

As for glasses, if you have an astigmatism, that can cause 'ghosting'.  However, if you didn't already have this symptom, then clearly something changed 2 months ago.  HPPD itself resolves for most people in time.  If you have a "disorder in the nervous system", then it is likely that the symptoms will skim along throughout your life until addressed (if it becomes important enough to do so).

 

More questions: Do you find a correlation with anxiety and your visuals?  Or are your visual issues steady?  24/7?  Since you have suffered depression and anxiety (a hypervigilant state) for a long time, either you got more hypervigilant or something changed a little in your visual processing.

I do notice that during times of high anxiety and stress, the visuals don't seem to get more intense, but I notice them a lot more, probably because of the hypervigiliant state. Other than that, the visuals are a 24/7 occurrence and get much worse at night/in low light areas, which again pushes me more towards believing it's some sort of eye problem, whether that be astigmatism, rare early onset cataracts or something else entirely (Fuch's dystrophy comes to mind).

After doing some research, I think it unlikely that I have HPPD and more likely that some yet unknown stressor kicked my anxiety into overdrive, which in turn made me much more aware of already present vision problems. 

I don't think my doctor is familiar with HPPD, but this is kind of expected as the trend seems to be that most psychiatrists are unfamiliar with the disorder. 

The visual symptoms started about 2 months ago and have developed gradually since then. Further, the visuals have been relatively mild and more of an annoyance rather than an impairment. I'm still able to function and ignore the visuals for the most part. The only time the visuals had any sort of impairment was when they first started and worsened my already bad anxiety as I thought something very bad was happening to me.

7 months prior to the first visual symptoms I had tried MDMA with a dose of 100mg. It was enjoyable, but I had no desire to try it again and haven't used it since. 6 months prior to start of symptoms I tried a massive dose of oral THC, 45mg to be exact. As stated earlier, all this did was launch me straight into the worst and longest lasting panic attack I have ever had. Because of this, I have absolutely no desire to ever try THC again.

A few weeks prior, I also stopped taking my regular 50-100mg dose of DPH for sleep figuring naturally induced sleep was much better than chemically induced regardless of actual quality of sleep. Also, at this time I started a fairly stressful quarter at college with a full course load and my father voluntarily admitted himself to a psychiatric hospital following an extreme depressive episode and for treatment of his alcoholism, after which he entered into an IOP for continued treatment.

It should also be of note that eye problems do run in my family with most of my family requiring glasses, the only exceptions being my siblings, mother and one of my aunts. This is what somewhat leads me to believe it's just ordinary eye issues causing these things. 

Thanks again.

Greetings,

I stumbled across this forum/site while researching some mental issues I was/am having and basically I'm just looking for some answers and guidance. 

First and foremost, the already present mental illnesses. Severe anxiety and depression have been a fairly constant presence for me ever since my early high school days. I've managed and dealt with them for the most part, but within the last year they've taken a turn for the worse with almost weekly panic attacks and frequent suicidal ideation. Also, within the last 2 months or so it feels like I've been gradually losing touch with reality in the sense of continually questioning what is real and what is not.

Because of this I finally got in to see a psychiatrist. After the visit I was diagnosed with major depressive disorder, panic disorder and probable schizophreniform disorder (probable pending further diagnostic imaging and meetings, though he feels fairly confident that I have some sort of mild psychotic disorder). As a result, he prescribed me escitoprolam and risperidone for my symptoms, both of which I am supposed to start next week with low doses and tapering up to the effective dose over a few weeks (he emphasized that I may not need the full therapeutic doses of either medication if a lower dose is effective).

While I did mention my vision problems and illusory hallucinations, he attributed these to the anxiety and psychosis stating that they were my brain trying to make sense of a weird situation.

However, I think these visual problems are HPPD and not related to any of the diagnosed illnesses. I say this because a lot of my visual symptoms are similar to those of HPPD. Furthermore, I have experimented with drugs in the past, namely MDMA (100mg one time over this past summer) and THC (45mg orally once this past summer. Not enjoyable at all since I was just launched straight into the worst panic attack I have ever had). I also used to take 50-100mg diphenhydramine 3-5 times a week to help with sleep, something I haven't done since I started having these symptoms of mild psychosis and potential HPPD. These were all mentioned to my psychiatrist. A summary of my potential HPPD symptoms is below:

• Lights appear to streak/downward beams come from lights, especially at night. Gets better when holding eyes wide open and when in bright areas.
• Monocular double vision in both eyes (i.e. double vision still occurs when one eye is closed or covered) especially with brightly lit objects and where there is high contrast.
• Glare, halos and star bursts, especially at night.
• Blurriness/cloudiness in vision
• Very mild trailing when moving something across visual field
• Some distortion of peripheral vision and perception of movement in peripheral vision
• Walls and other objects sometimes breathe usually after staring at them for awhile

So, are those symptoms consistent with HPPD, or are they just a relatively normal eye problems that I'm getting too paranoid about? If it was HPPD, would the medications I'm supposed to take worsen it? I've been reading stories, articles and studies about how these two drugs interact with HPPD and how they almost universally worsen symptoms. I can deal with where I am right now in terms of VS, but if those get worse, the combination with the other 3 issues may be too overwhelming. 

Anyways guys, thanks for reading and I would greatly appreciate any help/advice you can give.