jbalsa2

Hi there @PjTx It took me about 4 years to get to any major breakthrough point in my HPPD where I could say that things really started getting a whole lot better. I've been through the medical system in every fashion that is available. I've had CT-Scans, electroencephalograms (EEG), and any other tests that could be performed, all to no avail. HPPD is a change in the way that your brain works and unfortunately medical technology today cannot measure this change, at least not for the everyday layman being diagnosed with some disorder. But just know that it is real and certainly there are medical professionals who know exactly what's going on in much greater detail then you or me. I'm on over 6 years now, and my HPPD doesnt bother me anymore, my palinopsia although perhaps still there, doesn't cause me distress, along with all my other symptoms. My brain has adapted to having this and has developed its own workaround that happens in the background at the most basic level. Basically my experience with it is that over the course of years your brain slowly adapts and overcomes the thing, eventually until it fades into the point of being a negligible thing that you don't think about like shaving 3 times a week or having to do the dishes after you cook food. But for sure the first 4 years were an impossible task for me, and I think I'm making it sound easy. But I dont take any medication at all anymore, and I dont think that they ever actually helped me. Good luck, and keep yourself busy and your goals alive - eventually this will become a phase that you move on from.

Hi @liamnugent I used to be on all of the medications that you are currently taking, although not at the same time. I wasn't able to stay on lamotrigine for long because it gave me muscle paralysis/rigidity that wound up being pretty uncomfortable - chock that one up to bad luck Mirtazapine, along with any other type of antidepressant generally caused negative effects for me - making my HPPD symptoms worse and drawing me farther into the state of having HPPD. Obviously Clonazepam was helpful - but I wound up taking it every day and then taking street xanax on top of it., and then subsequently having to go through those withdrawals when it was time to stop. (Plus I wound up using methamphetamine, and then using the benzodiazepines to ease the psychotic symptoms of meth when they creeped in) Having had HPPD for over 6 years, I don't think any medication actually had any long term effect. They helped me to feel better at the moment by allowing myself to believe I was doing everything I could to help - but now I don't take any medications at all and my symptoms are not bothersome at all. My HPPD these days is just a background thing that doesn't cause me any sort of anxiety or DP/DR anymore, its just a thing that exists. I have a great career, and can do everything I used to be able to do beforehand.

Palinopsia took about 4 years to become negligible. (Don't worry - the first 3 years sucks, and it breaks my heart to have to say that the only way to get better is to literally embrace that there is no easy answer to recovering from this - all I can say is that you will) I never really had tinnitus - at one point during my HPPD things got really bad, and after winding up in jail and other really crappy things started to happen I started using methamphetamine and benzodiazepines pretty religiously, and I think those two coupled with my HPPD caused me to get really bad tinnitus because I was constantly in withdrawal or psychosis from one thing or the other. Once I stopped doing those drugs, my tinnitus went away - but even then it took like a year for it to go away because those withdrawal symptoms take so long to fade. But definitely the major symptoms of HPPD take years to really get to a point where they improve. I cant say if they will ever go away, because much like you, I still live with this - it just doesn't really affect me anymore, its as engrained into my life as having to shave every 2nd or 3rd day, or having to do the dishes after I cook. I am not. I used to take every prescription medication a doctor could throw at me. None actually really helped in the long run. Maybe keppra or lamictal or whatever helped to ease the mind in the shortrun in at least convincing myself I was doing something to help myself, but now I don't take any medication or drugs at all and my symptoms are negligible in the grand scheme of things. At one point I even convinced a family doctor to prescribe me high doses of Clonazepam and Dextroamphetamine while I used street Xanax and Methamphetamine - provided allot of short term relief and was allot of fun for a year or two until the negative health effects really started shining through, which is when me and my family knew that I needed to stop. When I stopped I faced MONTHS long withdrawal symptoms, and then stopped taking all my meds altogether. Way better off.

My visual symptoms are still present to a very minor degree. They are not bothersome anymore and have the same effect on me as other visual artifacts that everybody experienced before they had HPPD, like when you stare at the sun too long and you get retina burn - you notice it for half a minute or so and then it slips from your mind, and you don't think about it anymore nor does it bother you. I go entire weeks without even paying attention to the fact that my visual symptoms still exist - and the odd time that I do pay attention to them or notice them, it always seems like either they are improving or my brains ability to heal from them is gradually improving from month to month or year to year. I can't speculate on whether I might still have these symptoms 5 more years from now or not, but either way they will not have a considerable impact on my life going forward.

Well folks I just wanted to make a post regarding my situation. Some of you may remember me from a few years back - I haven't been active on this forum in something like three years or so. I've just started replying to some of the personal messages I've been getting and figured maybe it wouldn't be a bad idea to share an update both to give some of the newcomers hope and to reacquaint the old timers. Anyways - the first 3 years of my disorder were utter shit. I lost my entire career path, I wasn't able to work or keep attending school. I wound up on social assistance, and faced trouble with the law. For each of these things it was a mound of work to deal with and get over whilst having HPPD. Later on, after I dealt with my legal troubles and found a more permanent living situation, I wound up getting into using methamphetamine and benzodiazepines, both prescribed and purchased from the street. I felt at the time that the short burst of pleasure chemicals provided by these drugs were helping my symptoms of HPPD. Little did I know what peril they were putting the rest of my life in. This drug use went on for 2 years and got extremely bad, causing many problems for myself and my life. I would wind up in the hospital waiting room trying to explain my symptoms of HPPD and methamphetamine psychosis to nurses who wouldn't listen, probably thinking that this guy is another one of the nutjob sob story guys that you see roaming around on the streets every day. (Bless their unfortunate situations and their hearts) My life deteriorated to the point where I attended rehabilitation, and realized that I had to get clean and sober or I would wind up dead from one thing or another. And so I did. I stopped taking all of my prescribed medications, and all of the street drugs. (It was like prying candy from a toddlers hands, I really did not want to give up what I thought was helping me) That was almost 2 years ago. And in that 2 years I started playing catchup with my life. Working at lower paying jobs for long enough to buy a car and have a decent enough living situation before starting to apply for jobs in my former career path. And as of this date I am working successfully in that career path at the same or better capacity then before all of this shit started. I still have minor symptoms of HPPD. I have no depersonalization or derealization - just very faint distant visual symptoms that have no impact on my ability to function. I have learned that the ungodly and horrible truth (in my opinion, of course) is that I do not think that the HPPD heals from your body - I think that your body heals from the HPPD. The newfound mutation in the chemistry of your brain is something that now cannot be disturbed, and your body needs to adapt itself to learn how to make it something that works for you instead of against you. By way of being a human ragdoll and guinea pig, I have come to the conclusion that most or all of the recommended medications that can be prescribed for this disorder will not do anything to make the disorder go away faster, and that most street drugs will make your HPPD worse for a time being, but will not make your HPPD worse permanently. Of course given this information I can say wholeheartedly that anyone with HPPD should do whatever it is they think will make them feel better by way of human nature and wanting to find a solution to their problems. I found that being held back from this human right and part of the learning process often riled me up with anxiety due to the unknowns. Acceptance is key in this disorder, and accepting change and being open to the future, as well as the drive to fight for another day are what makes or breaks this disorder. Anyhow, I hope this post finds some of you well - and I am happy to be back here after 6 years, and off of my 3 year hiatus from this forum.

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I tried CBD oil for a while, it helped calm my senses to a degree, but wasn't a significant enough product that would warrant its continued use in my opinion. But I can confirm it doesn't have the effect that smoking weed has. (Thank god)

Your absolutely right, That's been my absolute largest struggle is finding a single psychiatrist out there who actually listens to what most of us HPPD'ers have to say without brushing us off with seroquel or olanzapine. My original intention with this thread was to be a quick go to reference for something that most doctors or psychiatrists would easily prescribe in a bind for those experiencing a struggle with HPPD as I most certainly have. I suppose that goes in line with the nature of an ever evolving forum and userbase. Proper moderation is more than welcome.

It's more along the lines of if you had Parkinson's disease, and someone gave you a medication that made your Parkinson's disease better. That being said, there's also a chance that over time it can cure you completely with sustained use. For example a year ago when I started keppra versus now, my cognitive and functional state is significantly better, and continues to improve. For that reason im not discontinuing keppra. There are also others who have cured their hppd by combining keppra with a responsible regimen of benzodiazepine use. The way I see it, is if you've had persistent hppd for over a year, you're not losing anything by giving it a shot.

Honestly I would say that keppra is your best option for that aspect specifically. You can always start slow - even 250 mg per day to guage the effects. Bear in mind it'll take a week or two for you to get used to the effect. If it's tolerable you can increase to 250 mg twice daily, so on and so forth. Keppra is the better of the meds for treating the depersonalization and brain fog that comes with hppd. Il put it this way - I've been on 1000mg of keppra daily for about a year now, and I don't even feel any side effects when I take it anymore. It's just become a part of my daily routine. I'd be scared to say what the outcome of my life would or could be if I wasn't on the keppra. Keep in mind as well the occasional use of clonazepam or any benzo for that matter isn't a bad thing either, as long as you're not taking it too often. For example you can easily take clonazepam two days per week, or Ativan 3-4 days a week in moderate doses and not face any repercussions. Just bear these things in mind. Medications are medications, they all carry side effects - in this case I'd take the side effects of these medications over the side effects of other commonly prescribed psychiatric medications any day of the week, having been on more then a few myself.

Sigh... I read through them too. Either a troll or a music festival vagrant. Can't live without doing drugs 5 days a week I guess.

Actually Jay I personally know people who continue to go to raves and music festivals despite having HPPD. It's they're own choice... I feel for their futures.

Stop using any drugs whatsoever and eat healthy, live healthy, and ignore the fact that it's there. Perhaps in 6 months to a year if the symptoms are still very prevalent you can try the keppra or lamotrigine method, but it's certainly not guaranteed. If you need some immediate and temporary relief for the moment, a benzodiazepine can help. But definitely not something you want to use on a daily basis as it'll likely make the problem worse.

I did mushrooms after developing hppd, my visual symptoms became three dimensional for several months after. 0/10 would not recommend. EDIT: by three dimensional, I mean I'd look at cracks in a sidewalk or cement patterns and what not and they would have 'depth' to them that was not previously there before my mushroom trip. Fighting fire with fire will only result in a bigger fire. This should be common sense.