ludwig80

I also came back after maybe two years or so when I thought I had gotten better too. Relapsed about two years ago with worse symptoms than originally and no drugs since the onset.. . I feel like HPPD cycles sometimes. Which is fucking frustrating.

Comfortably numb- are you the same guy who used to frequent the DP boards back in 07' under the same name? If so, what's up! I have no idea what my login was back then but I know we talked a bit back in the day on that forum. To the point, I've heard of many people developing symptoms a while after their trip. Mine took about two weeks before it came on. I've heard tons of stories that include a few months between and even some that don't develop until many years after they last took drugs(but there was normally a trigger like surgery, lots of stress etc..) I even developed new symptoms many years after quitting all drugs except alcohol. So it can certainly happen.

1998- I can relate. For some reason, I assume stress, I have Bruxism bad at night and just clench my jaw. I wake up and have a slight pressure headache sometimes that fades. Also wake up with really tight neck and shoulder muscles. So I try to stretch before going to bed haha, and after I wake up.

Hey Sara Sorry to here about your HPPD returning. Don't fret too much though, if it goes away once- it can again. Especially if you haven't been complicating things with drugs. I'm similar to you in that my first bout of HPPD came on hard for about 2 years then faded. Then a year and half later it all came back worse. Still with me but i'm managing. You sound like you have your wits about you which is good. Did you take anything when you had the flu? Antibiotics, flu meds etc..?

Yes Boogres it's strange for sure. Where it overlaps with my astigmatism I have no idea.. Actually that and most other HPPD symtpoms don't bother me after this long. The frames vision is by far the most frustrating. Although I seem to be slightly better than a year ago, so I"m not sure quite yet if I can thank keppra or what. Funny you say you used to get the Frame vision after smoking- me too, before I had HPPD. Only when I was really really high would it happen and it'd fade away a bit. For some reason drinking brought it on and it stayed. Got much worse a year later and then now a year later it's better. I think Keppra may be helping slowly, very slowly. As far as HPPD goes, at one time or another i've had most of the recognized symptoms. Some have gotten better some are the same. Definitely deal with Dp/dr but more so early on when overly terrified and full of anxiety. Less now, at least I don't notice it as much. Fatigue is always been an issue with me. I have zero energy, very little ambition and really am rather apathetic to most things- ketogenic diet helps keep what little energy I have, constant if nothing else. Body pains not so much, just bruxism at night which leads to jaw pain in the morning. Yes, I found out at 18 when I first got HPPD, thourhg a blood test that I also had hereditary liver problem called Gilbert's syndrome since i was born. They told my parents it was asymptomatic(jaundice & elevated billirubin) when I was born so my parents never thought to tell me. I'm convinced it had something to do with how things worked out though. 1998- Ya some symptoms do resemble withdrawals interestingly enough. I can't even begin to tell you had bad hangovers became even after a few drinks. So strange. Until two years ago I had associated all visual increases to panic attacks, wish I had known I was having some kind of seizure problems and causing damage. I didn't want to give up drinking cause of some stupid panic attack. I know better now I guess. I really didn't even drink excessively, average socially engaged college kid i guess. I took milk thistle when I first got HPPD 5 years ago. But my particular liver issue requires something that helps phase two detox(NAC) as opposed to phase one(Milk Thistle). If I remember correctly that is.

I get these occasionally out of no where. Don't know why.. they're isolated and only last a few seconds for me normally. But sometimes.... Also, If had what's been refereed to as "simple seizures" which not only give me increased visuals, dp/dr, and slow frame rate vision but also during the duration I have sensation of pulsing going through my body at a certain rate. It feels very electric but reminds of the feeling you guys are describing. Sounds tend to peak as the pulsing peaks. The physical side of this will last for 30 min of so and the visuals tend to relax through out the day. Once the vision issues were much worse for a long time. Since taking Keppra I have only had one and it was much much less intense as before Keppra.

I voted yes, drinking(&stress) caused me to re-develop HPPD after my first run in faded away to where I could go a day or two without noticing. They came back much worse and have been persistent for a long while now. I should add I do have a liver problem and hangovers for me became unbarely after a couple years of drinking. All day hangover from two drinks. I'd have shakes, couldnt eat, muscle pain/sorenss, headache, intense visuals, then eventually a simple seizure while hungover at school which brought everything back on. Plus some visual symptoms that aren't recognized by HPPD like frames, monocular double vision etc.. I think alot of this stems from my liver problem and lack of ability to detox neurotoxic substances.. For most here, drinking probably is negligible besides increaded visuals during hangover. But i'd say be careful and stay in control and pay attention to your body.

This has also been pretty close to my experience. It's helped the dp/dr a bit and cognitive abilities. But not so much visuals aside from slightly less visual snow. Fatigue was the worst symptom I had at the beginning. That abated after some time. Depression is probably slightly better than it was before keppra. I take 1000 mg a day right now by the way

This comes up quite a bit with new folks... What I can say is I would listen to the advice everyone has giving you here and not bother with any drugs anymore. It's normal to not want to give it up at the beginning, especially since it'll likely impact the relationships you have with those friends. I know it did me, and it was really difficult. But please understand, things can get much much much worse. It can easily get way beyond what you experience now and be really debilitating. Fold your cards, count your losses and move on is what I recommend because if you try to call HPPD bluff's things can go south quickly. Best wishes

Wow, so in the past year when my vision got worse I also developed extremely oily skin on my face around my nose and eye brows. I was always fortunate and had clean skin with rare acne but now it's a bigger problem. I get a small persistent rash on the sides of my cheeks near the nose because of it(seborrheic dermatitis I've been told).. My father has it too, and of course, no real cure for it.. I thought the ketogenic diet with all the fats just made my skin more oily.. Strange coincidence. Sorry did not mean to hijack just found that relevant

Part of the problem is that candida is not well accepted unless you have a low immune system etc. So generally speaking it's not recognized in the mainstream and aside from the spit test (which accuracy is questionable if you ask me) there isn't much as far as test goes. Wish there was. However, if you start the diet and start seeing die off symptoms and relevance changes then you have a good idea if it's effecting or not. Lots of stuff to read on the net. I don't know a whole lot. Just following the diet strictly and adding basic antifungals along the way.

Thanks for coming back and telling the story for all us newer folks.. Although, you were on the old boards too right? Think I remember reading your story there at one point a few years ago.

Wow, very interesting read. Ecstatic they're finding something to help those suffering with MS.

Do you wear contacts? Could definitely be allergies..

Good luck with this one Jay. Also, glad you guys are seeing some improvements. Dopamine issues seem like they play a HUGE role. May try to get my hands Sinemet after riding Keppra out for a while.

Just to add a bit, i've essentially been on the Ketogenic diet for about a year and actually it's almost the same as the Paleo or Candida diet(which is what pennyarcade and I have an ongoing thread on, he's seeing some serious benefits so it seems) . Very very low amount of carbs, and even lower amount of sugar. Pretty much as close to none as you can get. I can't say I have necessarily have more energy but what I can say is I don't have the severe crashes of energy after eating anything. For me this was bad, I'd eat anything and seriously need to just sleep afterwords. If I avoid carbs and sugars then I don't have this issue. I'm not sure it's helped my visuals really, but hopefully the combined with keppra will help slowly. Google these diets and work your way towards them if you're interested in a natural approach. i'm kind of merging Ketogenic with Candida diet and taking anti-candida supplements. Candida is controversial though, feel free to make your own informed decision. Merkan, i find it interesting Cocoa does that to you. I eat a lot of it (unsweetened stuff, which is super bitter but bearable with the right foods if you are decent in the ktichen) because I thought naturally helps boost Dopamine....

Essentially had the same reaction as you. 250mg made my just want to pass out. I went up 250mg ever two weeks or so and each time i'd be super tired for about a week. A bit of depression as well. I made it up to 1000mg a day now which was my goal and have been here for about two weeks now. Getting used to 1000mg and not as tired when I take it. Not sure about going up any futher, at least the doctor thiinks 1000 mg is where I should stay. We will see. Do you use the cheaper generic version or actually Keppra? I think definitely taper up slowly as to not get nailed with side effects. Take b6 specifically (so i've been told, may want to research more) and a normal B multi-vitamin may be useful as Jay mentioned. .

Dude, still feeling good!? Really stoked for ya. I hope things stay well. I've suspected candida being an issue for a long time now, glad to see getting rid of it is helping someone. How strict is your diet nowadays? Ya really bummed about the lack of understand in alternative medicine. i think some of it's quacky but some of it is legit and can be a much safer/better option for people. I wonder how long it iwll take before Candida is accepted as a mainsteam issue. What are you doing music wise lately? Still playing, recording? Playing out? Trying to get signed?

Haha, that's funny, ya I remember that old habit... . Seems like a lifetime ago when I was ignorantly free from the grasp of hppd and experiementing with drugs. I want to avoid irritating stomach issues now so I just make sure I eat something. I feel better when i do at least. Going to hop up to 1000mg this week. the jump from 500-750 was easier than from 250-500. Strange.

Gill how long were you on it? I've noticed weakness and tiredness. But I find as long as i eat alot before taking the medications I'm not as zoned out and tired. As well as making sure to supplement b6 as helped I believe. I take it 3x a day and spread it out which also is supposed to reduce some side effects. Also, agree with Merkan emotional slightly blunted. But no worse than Dp/Dr. And I often get lazy and don't feel like doing things, I attribute to the medication although the longer im on it the more I feel like this is just me getting used to the medication. I have noted that I think i'm slightly smarter with it. I don't have to reread a long sentence 12 times to understand what it means. Which is nice, I don't forget what I'm trying to say midsentence as often and I can recall words i want to use more quickly. Although, when I don't eat and take the medication sometimes I feel out of it a bit. I write a lot of music(lyrics, guitars, drums), I suppose you could consider it slightly abstract as just make something out of nothing basically. I feel like my writing hasn't really been effected that much. Which is one issue I was reall worried about alot. Think alot of it depends on the person, the dosage, supplements, eating and personal environment. I think the ketogenic is a good diet to supplement with the medication.

Hey friend, Many of us here have probably been where your son is now. Most important thing now is to support him as best you can. Get him to a decent doctor and psychiatrist if necessary. They can help through therapy as well as pharmaceuticals to get his life back on track. Something like Keppra (anti-seizure med) and benzo's have help many here, but understand Benzo's need to be used carefully and monitored. Early on they can help calm things down, but you don't want addiction to rear its head down the road. If he can make it med free while postiively working through HPPD symptoms he can live a very happy and fulfilling like many people on this board. Make sure he knows he has options, there is help and hope out there. Exercise is likely something he start immediately, this will drain all energy, help Dp/Dr issues and also relieve some tension. I believe a good, clearn diet can go a long way, and if you're history warrants it, perhaps ketotonic or candida diets may be of use, though controversial here. This roads not easy but it's our road. Support him the best you can, push him to stay social and not wall up, clean up the diet, seek treatment & help, keep his ambitions alive and exercise alot! Oh and most important, make sure there's no more illegal drug use. This can make this exponentially worse. Even alcohol for the time being should be avoided for right now, as hangovers tend to make the next day unbearable. This should be a good start to get things turn around, please take some time and rummage through the rest of the boards information! Best wishes.

Keppra is not a instant fix like klonopin, it takes time to help, if at all. However, so far it seems like you find it fairly quickly based on some people here on the boards. Also, it's something you will need to take for a while, according to Merkan, his visuals return upon lowering doses back. Are you new to HPPD and Dp/Dr, if so I'd be cautious with your benzo intake. Attemp refocusing techniques, get out and exercise. I can't stress that enough, run- as far as you can and when you're done you'll be much to tired to worry too much about HPPD. This can help you cut back on benzos. Time will ease the anxiety which likely is fueling your DP/DR issues. Once you can control those you'll hopefully see a reduction. And you don't want to be relying heavily on benzos down the road. Or as mentioned before, you'll be dealing with withdraws and forced to deal with HPPD then, tough situation. Keppra is a worthy trial if you can manage to get it. Follow closely with a doctor and taper up gradually.

This is certainly true, been taking it very slow easy and working my way up. I remember you were taking a pretty significant amount, notice a big difference past 1000mg?

Alright so about 4 weeks out on Keppra. Not a huge noticeable change yet. For documentation purposes I thought I'd relay how things are going. Started .125 mg x2/day for about a week then .250mg x2/day for three weeks this week started .250 x3/ day Each time I jump my main side effects are extreme fatigue. After a week or two I start to get used to it and doesn't effect me as much so far. Well see as I increase to 1000mg/day. Haven't had any seizure like issues since starting it. Vision hasn't changed to much at this point, however I "want" to say it's gotten slightly better. If nothing else then perhaps the Dp/Dr has gotten slightly better, We will see when I moved up in dosages. The trails don't seem as bad as they were, though, very much still present and I could just be over analyzing and wanting this. Some vision issues not common to this board that i've seen have seemed lighter but I find a fine line between hppd and my myopic astigmatism in some symptoms. Cognitively, I feel a bit quicker to the draw, forget my words less, can recall quicker, despite the fatigue. Don't necessarily see dramatic change in vision at this point. Perhaps I feel that Ii'm not fixated as much on these issues as i was. Still there though. I feel myself subscribing to Gill's thoughts about OCD being a factor to some degree. Getting locked in this loop of constant checking and dwelling on it seems to be a factor. Today I did notice that PULSING visual snow was a bit more intense in the classroom than normal. Lots of pulsing, I think I remember jay have something similar. Read alot about Keppra's dekindling ability to heal certain injuries that occurred to the brain. So i think it general it may be a good medication to give a good long run if significant side effects are initally present. Sorry if this post is a bit scattered, i'm rather tired at the moment.

Ya, I know man, if HPPD has done anything for me it's made realize that most "normal" issues are pointless and futile to be upset about. The days are gone where my biggest worry was some totally insignificant shit. When I got hppd 4 or 5 years ago I was in a dorm- and so I had no choice but to mostly stay social etc. So now, I still have some close friends and still go out- but things have changed drastically in the last year when I quit drinking. Every time I'm forced to quit something, such as weed now alcohol- I find myself losing people who I thought were friends. Now i'm left with a very close few that I've just known forever. But there is the gap that wasn't there since we were always drinking buddies. No one wants to go out and drink by themselves with the sober guy so I feel slightly ostracized and only get calls when there's is a group going so it seems. I've also thought that, perhaps in a way this is some kind of test. Some way to learn something or teach me something I was lacking initially. I suppose I used to be a bit of agnostic. I always thought religion was for people who couldn't handle life and that depression was for the weak. I never understand really. Ironically enough, HPPD came along and knocked me on me ass. There I was anxiety ridden, full of depression, and seeking some kind of relief. Figures right, hence the Isn't it ironic song? So now i feel jaded, and watch what I say just in case. Which annoys me cause no body else cares/ or does but I still just don't want anything to get worse .. I know it ain't right or unlikely.. but still find myself doing it. Now, I want there to be something better after life, I want to believe in finding peace through something. I still struggle with religion to some degree, but I want to believe- I want there to be something better after life- somewhere to finally find peace again. So, i'm spiritual, I believe/hope there is something, but I take religion as more of a good set of morals to live by. I don't believe humans have the capacity to understand what awaits beyond the grave. I think it'd be nieve and egotistical to think that we humans could understand a higher power, just as a bug can't really comprehend us. Wow, I really can relate to your ma's situation. Basically, i'm pretty damn sure my dad has candida as well, but like you- no way will he listen or take such drastic measure to change things. He's got bad dandruff and has been using shampoos like head and shoulder for yearssssss. He's got tons of those vague candida symptoms like fatigue etc. but in the last year or two developed diabetes and went through some bad health issues. He wasn't producing white blood cells and they diagnosed some kind of mystery autoimmune problems as well bone marrow issues, reoccurent sinus/ear infections, it was a ruling out diagnoses so they are still watching him closely and as of now are waiting to make sure nothing gets worse. It's really really sad to hear these kind of things and I know the depression/anxiety all to well from it, you're right, it is really hard to watch them suffer when I think I could help. I remember eating a whole loaf of french bread with him once, we both love bread, he still eats it, i don't. I don't think I could convince him of candida issues though. My ma, she gets bad migraines and takes topamax (antiseizure med) plus thyroid issues. She started going to to a more natural doctor which convinced her to go on a candida diet. But she doesn't really take it seriously and basically fails the diet within 24 hrs of starting it all the time. Man, it's def tough to approach someone about it. Idon't have any advice really because no one really listens to me. They don't understand my diet, health issues and just think i'm an overreacter so I don't have much pull. But I had seeing take more antibiotics knowing that perhaps it's just making it all worse. I can't really fathom how my life would be if I didn't have hppd. Things have been forced to change so much. Anthony Bourdain described himself in one episode as a man with "perpetual malcontent," That's basically me these days. So my aspirations are basically to find contentedness, somehow, someway. Working 9-5 and buying nice things won't work for me, not with hppd, even with anthony bourdains job i still likely be unhappy to some degree, even though that'd be a really cool way to make a living and i love traveling...So, I've decided i'm just goiing to try and reach my most far fetched dreams because that's the only way, at this point I think I can find that elusive feeling of content.