HPPD getting worse over time

[bobokokofulll]

Hi,

I'm new member to HPPD community, not a new member to HPPD sufferers however. I've been stuck with this condition since I was 17. I never did LSD, I got my HPPD from ecstasy pills. At that time, I used to do HUGE amounts of MDMA (up to 600mg). Why did i do it? No idea. I just liked the way it made me feel and I wanted to have some fun i guess. I don't quite remember what my symptoms of HPPD were back then, but they were significant enough to make me stop doing drugs altogether. I remember that if someone wore white shirt with black stripes on it, it would seem as if the shirt was "flickering" for a lack of a better term. Looking through a window with window blinds on them would make the same "flickering" effect.

Fast forward 5 years, I'm turning 22 in april, pretty much living like a monk, paying for mistakes that 17 years old kid made. I still haven't told anybody about my condition, so you guys are the first. I've told my mother that I have visual snow, but i didn't mention other symptoms, I don't want her to worry about me too much.
I've been xanax addict for 4 years now. I've lowered my dosage from 1mg to 0,75mg just a few days ago. Hoping to stop taking it altogether one day, but that's probably too ambitious.

For the past few months, the visual symptoms were getting worse for me, even though i haven't touched drugs in years. Palinopsia has gotten significantly worse. when i close my eyes, i still see the objects i was looking at before closing my eyes for a split of a second. Afterimages are now visible also during the day. I sometimes close my eyes when im about to turn my head, so i don't see the trailing. I'm also feeling tired 24/7.

Regarding DP/DR, i don't even know anymore. The first time i smoked weed, I got a terrible panic attack, and, as crazy as it may sound, i couldn't remember who i was. So i guess I know what dementia feels like. I was 14 back then. After that experience i developed dp/dr, but as i said, i sometimes feel "out-of-it" but it doesn't bother me.

The only positive thing about HPPD is that it forced me to abstain from drugs, as i have very addictive personality.

I don't know why I am writing this, i guess i just wanted to get it out.

I'm just hoping it will stay the way it is, and won't progress any further.

Edited March 4, 2019 by bobokokofulll

[K.B.Fante]

Xanax is a drug. If you've been taking Xanax for years then you haven't really been drug free. I'd remove anything and everything from your routine that even remotely has drug-like effects, including coffee, cigarettes and even excess sugar. In my experience you have to totally reset to figure out what's causing your symptoms to worsen. A few summers ago my symptoms were steadily worsening over the course of two weeks and I finally figured out it was due to nutmeg in a spice jar I was using everyday to flavor my food. I recently had a similar occurrence with mold. You should take stock of what times of day your symptoms worsen and ask what you were eating or doing prior that could have exacerbated your condition. I've had to do this constantly over the last four years and as tiresome as it is it's been really helpful in just making it through the day. 

[MadDoc]

I too used to take ridiculous doses but my drug was acid.  Why did I do it?  I just wanted to see what would happen I guess.  Go deeper.  We were also under the false impression that it was harmless.  

The handful of times I've smoked weed since I stopped dosing produced panic attacks and a scary psychedelic effect.  My brain felt like it was being run by some alien software.  Horrid!

I think it's great that you reached out on this forum.  You're not alone, there's a whole tribe of us who are dealing with this.  Understand, there are people in this forum who life happy and productive lives.  I've had this disorder my entire adult life but existence has been sweet.  

Welcome!

[Guest]

I was doing ok until I developed low back and pelvic pain. Shit changes as you get older and with it coping mechanisms.

[bobokokofulll]

@K.B.Fante you are right about that i haven't been drug-free, however without xanax i would probably not be able cope with it on my own. I'm emotionally very unstable person. It's a bitter pill to swallow for a 18 year old, that i have a life-long condition. I also suffer from insomnia, and other sleep pills made me feel high (ambien,halcion etc.), so i ended up taking xanax.
Im also living quite a repetitive way of life, so there are not many lifestyle changes in the last past few months, but I've had a lot of stress in life lately (life-long friend died in an accident last year) so who knows.

@MadDoc exactly, try it and see what happens. In comparison to weed, i didn't get panic attack from ecstasy so i thought, wow! i've finally found a drug that i  atually enjoy!

I don't know about other countries, but in my country the drug education was something along these lines: "don't do drugs, you will become addicted, don't smoke weed, it's a gateway drug, bla bla.." if someone told me that after single use of certain drug it can have life-long consequences, i would probably think twice before doing it, but who knows, maybe i would risk it anyway. If I ever have children, i'll make sure they won't go the same path i went.
I find it very impressive, that people can live productive lives despite this condition. Most of the time, i wake up at 11-12 and feel the rest of the day tired and end up doing pretty much nothing productive.

@hope1 so how are you doing now?

 

Thanks you all for replies!

Edited March 12, 2019 by bobokokofulll

[MadDoc]

I used drugs during the 1970s.  There were two messages.  The message from the older generation was drugs would kill you or you would end up in jail.  The message from the younger generation was that they were basically harmless.  Both viewpoints were ill informed.  

Regarding productive lives, I'm nobody special.  Just a regular Bozo making his way through "this" (whatever this is).  I contracted hppd after taking psychedelics for six years.  I managed to get through college, got married, raised two amazing kids (adults now), and have a profession that I enjoy.  As I said, I'm nobody special but I never gave up.  I picked goals and went after them one step at a time.  Sometimes tiny little steps.  

All I'm saying is that it's possible to have a productive and happy life.  Never give up,  take small steps toward what you want to do do and who you want to be.

[droppedonce]

I've heard people say that benzos have a rebound affect with HPPD like they do for anxiety. So when people go cold turkey or lower their dosage (like you did) withdrawal symptoms kick in and everything gets temporarily worse. Maybe that's your problem, I suggest getting rid of your Xanax addiction.

[Victor]

What's up bro !  First of all, I wanted to say that for as long as you have suffered from it, the disorder has a cure. I suffered from it for 2 months, but it passed. For this I did psychiatric treatment, using risperidone, paroxetine and even xanax for seizures. Risperidone is an antipsychotic and one of the main antagonists of LSD and other psychedelic drugs such as ecstasy. But please do not self-medicate, the remedies have different effects for each person and can present terrible adverse reactions. From what you said, you have not told anyone about your condition yet, I suggest you tell your mother at least. As much as she may be angry, or there is a certain embarrassment about telling her (as I did) she will understand and help you find a treatment that I can assure is effective. But what you need to combat mainly is your anxiety, which is nothing more than the anticipation of fear, you internally ruin bad thoughts that you can not simply get the focus of them, because your attention is focused on an effort not to have them. So they reappear all the time. This is the result of an unoccupied and unmotivated head (just like mine and I am also your age). First, do not be quiet, tell your parents what happens to you. Second, do not be afraid to say your problem to the psychiatrist, because your case is one of the quietest for anyone who deals with every kind of disorder on a daily basis. Third, do not search about the problem on the internet, this will only generate you more distress. Do not give up, I've gone through everything you described and I've had a good improvement, you will too. I was curious about your experience with marijuana, if that's okay, tell us about it better. (I also lost a very close friend last year, so if you also want to talk about it, go ahead)

Edited March 14, 2019 by Victor

[sami]

On 3/13/2019 at 4:06 AM, droppedonce said:

I've heard people say that benzos have a rebound affect with HPPD like they do for anxiety. So when people go cold turkey or lower their dosage (like you did) withdrawal symptoms kick in and everything gets temporarily worse. Maybe that's your problem, I suggest getting rid of your Xanax addiction.

This seems to have been the case for me. Used a lot of Zopiclone last year, almost every night to be able to sleep because of bad stress and anxiety. It calmed me down and made it possible to sleep. My visual symptoms slowly got worse and towards end of last year I started getting CEVs in the mornings and decided go cold turkey. Until then I only had slowly progressing visual snow during night time, diplopia, pattern glare, and some tinnitus. Now it just exploded. Suddenly I got visual snow day time, constant diplopia, palinopsia - both positive and negative, floaters, photophobia, bad tinnitus, etc. A couple of months later my photohobia improved 95%, palinopsia improved - almost no positive after images, and the CEVs were gone. Some things definitely got better after being off Zopiclone completely, but the palinopsia has once again been getting worse and the CEVs have come back, even though it's more rare. Find your baseline. Get off everything, even caffeine and nicotine. 

[Freeg]

On 3/12/2019 at 6:04 PM, MadDoc said:

I used drugs during the 1970s.  There were two messages.  The message from the older generation was drugs would kill you or you would end up in jail.  The message from the younger generation was that they were basically harmless.  Both viewpoints were ill informed.  

Regarding productive lives, I'm nobody special.  Just a regular Bozo making his way through "this" (whatever this is).  I contracted hppd after taking psychedelics for six years.  I managed to get through college, got married, raised two amazing kids (adults now), and have a profession that I enjoy.  As I said, I'm nobody special but I never gave up.  I picked goals and went after them one step at a time.  Sometimes tiny little steps.  

All I'm saying is that it's possible to have a productive and happy life.  Never give up,  take small steps toward what you want to do do and who you want to be.

Hey MadDoc,

Sorry to reply to a message from so long ago haha, I have been scrolling back through the forum for a personal project. I'm 23, and I've had had HPPD for 5 or so years and I'm doing pretty well! I live a normal, moderately successful life, and no-one would ever realise I had this strange disorder unless I told them. I was just curious about your life with HPPD in relation to your family - were you very open with your wife and with your children (when they were old enough to understand) about having HPPD? If so, how did you speak to your children about it/how did you talk to them about drugs in general? Hopefully I'll have a family of my own too one day, and the thought of how I would approach it with my children often crosses my mind (I come from a very liberal social and political background and perspective, naturally).

Thanks and take care.