Shadowplay

Yeah well,  My visual snow is extreme , cant even read the text almost , 

And cant sleep to good. 

My thoughts are screaming in my head always 

When peeople talk around me , i hear messed up stuff even though they dont say it so my sound decoding system is messed up to 

And it always hurts my stomach like , low emotions 

Need music on 24/7 to even function. 

psychotic paranoid stuff to  , so 

Cant enjoy time passing,

 

 

Last chance ...  Im going to smoke weed now everyday , and if things dont get better

very soon , its Game over , 

Yeah, weed will definitely not make it better. You need treatment for your illness. Keppra, Sinemet worst case Clonazepam. To live on these meds is better then giving up on something that can be fought and defeated. You probably need an anti-depressant as well. Don't be afraid of asking for help.

I'm sure it's powder within the pills anyway. It's suppose to be neuroprotective and regenerating for some areas in the brain.

 I've had it for roughly 7 months now. But since my visuals hasn't improve a bit I'm positive that it will be a long case out of me.

Sorry, sinemet helped the delay. Keppra some but most visual snow and some DP/DR, and the racing seizure like mind race

I see. Thanks for clarifying that. May I ask you how you got your hands on Sinemet? Would that be possible without showing the study that Dr. Abraham founded regarding the COMT-inhibitor?

Because you see that to my neurologist I don't have a history of hallucinogenic drugs, because I wanted to go another route for some reasons. However, I wonder if it's possible to try out Sinemet without actually having the diagnose HPPD.

Another thing, Sinemet is what I know taken three times a day, do you have any side-effects if you would skip one day for example or do you feel long term side-effects?

Thanks for your advices.

Wait shadowplay you still trip? How do you plan to recover?

No, I don't trip with drugs. I trip 24/7 without them because of HPPD. That's what I meant. Without Keppra and even with it sometimes I get high spikes. Woke up few weeks ago felt high on acid and had one of the strongest CEV:s I ever experienced. I'm talking DMT like visuals. But I had no substances in my body. I believe so far that HPPD is when you use any hallucinogen drug and for some reason your brain gets stuck and repeat the same signals and distortions in the brain that the drug did to you.

I've been taking Keppra now for one week, 250mg twice a day.  Can't really say I notice any difference.  I know it's a really low dose, but can anyone out there provide a timeline for it's effectiveness?  I don't have another nereuologist appointment until a month from now, but was thinking of increasing my dose by another 250mg/day if I still don't feel anything by next week. 

 

Oh, and as Shadowplay mentioned (maybe because of the low dose), a few drinks even with a low dose benzo didn't feel any different than usual. 

 

Not giving up hope for this drug yet!!  Not excepecting a miracle cure, but a small reduction in anxiety / DP/DR / brain fog would be awesome!!!!

I don't know if it was the medicine or not but my DP/DR is probably reduced with 80% by now. Brainfog is gone more or less. And I barely did even recognize my face nor family members during start of HPPD. I couldn't feel emotions and I felt like a floating head on a pillow when going to bed, so yes it was quite severe. I don't believe it's an actual DP/DR at all anymore, it's just a dissociation from the drug used. Stuck in a trip with mental and psychical effects.

For me it took roughly 1-1,5 months to notice effects and then it's just been getting better and better with time. I followed the doctors advise starting like yourself, then after 1 month going 1000 mg a day, until I upped myself from 1000 mg to 1500 mg as the study advices and told her so. She was fine with that. As my spikes in the EEG was shown to be reduced it means it really works and my blood is on an analysis right now to see if I should up the dose even more.

 

Thanks for cheering me up but none of docs doesn't want to do the surgery, that's the issue.

Besides I have to find a surgeon abroad because it's quite expensive here.

 

What a shame. I'm kind of it the same situation, the eye doctors can't help me with my floaters here in Sweden. If they would, it would still be too dangerous and I'd risk getting a cataract. Cataracts with HPPD woudn't be too fun.

So I'll have to go to the best specialist regarding FOV:s which is based in England. And it's roughly 4500 pounds for an eye.

U know any easy methods to end life ?

, im 21 now , had this for 2 years

, gettin worse everyday ,

like im 50 % blind now 

I will do a "Floaters only vitrectomy" surgery for my floaters when I'm getting contacted and can afford the treatment. It might lead to blindness, and I have no idea what the side-effects from doing a such surgery will lead to. But I need to believe that it will remove a lot of floaters so I can continue to recover with HPPD. Glasses and or lenses should work for you fine right? I'm nearsighted as well, HPPD made my vision sharper but I use contact lenses sometimes. Well, I'm sure that you can do a laser operation and that it will fix your bad vision, but it can leave spots in the eyes as a side-effect. It doesn't mean that it will, but there are chances. It's up to you to weigh the risks to the benefits.

Have you tried Keppra? My visual snow was never severe, but it's gone with Keppra, so it might help you too. Suicide is the most irrational decision a human being can take, so it's not an option because everything can get better and you will too. But it takes time. We will have to be patient, but if we struggle for 5, 10 or even 20 years and get the help we need and in the end do recover to a decent level, then everything was worth it in the end. And you will forget these bad days. And focus on the good ones instead.

Create a life that's suitable and works for your right now. That's what I'm pushing myself everyday to do and that's the best option for you in order to "end the life" that you are living right now. Not to take it away from you, but to build something worth living for from nothing. I'm sure that you can do it.

Thank you so much for the answer. Just wondering how would i get a doctor to do do these tests? What should one say to get these tests done and motivate a test like these? Thank you again.

What i have Done so far: major eye check. Checked the "yellow spot", colorsight and so on. Nothing wrong there. IF i don't remember it wrong i've Done a CT and an MR. Looking for a tumor. Nothing wrong. They have teated medications on me for migraine and got me to psychologists who prescribed other meds. Worsening the symptoms.

Sorry for a late reply. I think that I've answered your question already through PM. But just for the sake for the discussion I'd say that the easiest way to get effective help for HPPD is to simply asked to be escalated to a neurologist and claim that if nothing is wrong with your eyes nor mental health, it has to be neurological, which is true in this case.

Well , have u heard of anyone who tryed lazer after having hppd , and how many , whats the result? 

Its important to draw conclusions from real data or it it a guess ?

Well, no because HPPD is that rare I don't think such experiences exist, if they do it would still not be enough to be vauleable for consideration. However, I know that laser surgery to improve your vision can leave particals in your eye that might get more visible if you have HPPD. If you already got a lot of floaters and is photosensitive I wouldn't recommend it. And you can read about the laser treatment and it's side effects at a lot of places where they mention what I just brought up.

Acceptance is the best recover you will ever get. Strife for a greater mental health and it will get better with time.

Laser operations can end it leaving parts in the eye that you don't especially want when you got HPPD. You can get floaters from such an operation as the vitreous slightly can detach from the laser. If you have HPPD you might end up with a lot of dusts in your eyes. I would never do it as I already have a few hundreds spots in my vision. What's wrong with lenses? I use that.

Don't need drugs to feel high. As you age you will probably forget about weed, it's not that fantastic. As people that have been fightning HPPD for years relapsed due to a few puffs of a joint, I would never touch it again, so you should forget about that thought and get high on things naturally in life that won't effect your HPPD.

Keppra and alcohol is just fine, don't worry about it. However, it can make the effect of Keppra less effective. So if you want to achieve it's full potential effects, especially when you are setting up your dose, drinking often isn't adviced. Once a week or something like that shouldnt be a problem, or a beer or glass of wine occasionally either. Xanax+alcohol can be lethal though. Got some friends that died from that combo. 0,5 mg isn't that much just make sure that you don't bring more, or get too drunk and goes home and pop more. I don't think you would do that, but I've seen it happened and it has its costs.

Just had to Mo but seriously if you are that young I wouldn't advise any usage of drugs at all! Where are your parents, where do you live? What a distressful society that allow such things to happen.

If you stop using I'm sure that your mental health will get better with time. Psychological illness can be triggered by any stress factor, HPPD is stressful so I'm sure that some experience panic when it starts.

You shouldn't even drink when you are 13.. There's a reason that we got a legislation for this. Try to search for some help or change your life dramatically, it's not suppose to be like this. Try to get clean and focus on your studies and get some professional help. Don't be ashamed of your problems, tell your parents how you feel and talk to your friends about it. No matter how hard it will be or feel like, when you have done it they will try to understand and help you. Good luck and take it easy, your life hasnt even started yet so get these bad thoughts out of your head.

Brown/orange polarized lenses works best for me. If you want to take it to the next level you can get FL41 tinted lenses to minimize light sensitivity and other visual disturbances when the sun is out.

You know it's HPPD when it's really bad. Life-changing. Stay clean and you will be fine. Don't think about it. Dont expect anything just try to live as usual and it will most-likely fade away.

I experienced my first flashback which happened yesterday night. I went to bed, I was quite tired, completly sober.

Woke up after 1-3 hours and it was still dark outside. I felt really high and had quite strong CEV:s, then I closed my eyes to try to shut any light out. And it hit me like a rock.

Went into spirals of fractals with thousands of colourful gigantic letter formed objects which appeared in red, green and yellow. It was a superfast zoom into this fractal. I would say it reminded me about my strongest acid trip I ever had. After roughly 1 minute it faded and I fell asleep again. I'm on 1500 mg Keppra a day which should prevent flashbacks too according to a study. Then I wonder.. what would have happened yesterday if I wasn't even medicated?

Anways, I enjoyed it, but now afterwards it's a bit tricky as you wonder what your brain is up to when things like that goes down.

You can share your flashbacks here, if you got any.

What is a qeeg?

http://neurodevelopmentcenter.com/neurofeedback-2/qeeg/

Got some great news through a letter today. I spoke my my neurologist last week and mentioned the QEEG as I know some guys here had success with that. It's the best instrument known so far to find the spikes related to HPPD if I'm not mistaken. I got an appointment at Lunds university in 2 months. Hopefully this will bring something to the table regarding the research of HPPD. It might also give me some kind of relief.

I will get back to you guys with the results.

Great news to hear that! Keppra did wonders for me. There's also a drug called Naltrexone that seems effective. Seems to be various of ways to treat DP/DR, atleast to lessen it to not be something life-imparing. I wonder why the guys at DPselfhelp hasn't managed to get that help or working medicine. It tell the tales of the what we are suffering from, isn't actually DP/DR but some kind of hallucinogen dissociative state that's stuck from the trip. The trauma did not cause it. When you are tripping you are already completly depersonalized but you don't question it as you are having a good time. So there are definately a lot of questions regarding the DP/DR symptoms when it comes to HPPD.

OK, that's what I thought. Just go for it I guess. Don't let HPPD stand in your way of treating other issues. It's not an auto-immune system illness so it shouldn't hinder you.

I have some other physical problems too which I'm trying to fix and I'm not getting HPPD get in my way for it. One thing is that I will try a floaters only vitrectomy for my floaters. Anesthesia is required but it should be fine.

Keppra improved all my symptoms. Starting with the visual and emotional. Its like the delay disappeared. A good test for this was entering the bathroom switching the light off, instant adjustement. Depth perception almost fully improved from seing everything in 2D

That's great to hear! I maybe didn't make myself clear enough but I was wondering about sinemet and how it did help you. Or did you simply mistype Keppra instead of Sinemet? If so, then I should definately give it a shot as my trails are quite annoying.

Shapwplay> Tried sinemet? Keppra is great that it inhibits the ion channels and puts the lid on but doesnt taget the serotonin/dopamin dysfunction in HPPD, for some balanced with l-dopa.

For the record, i am no longer sure that i was ready to trip in the beginning, although it enchants me (the idea). MDMA though in the right doses is something that i really would like to try. However i would never risk my brain anymore. Not until there is a certain fix for HPPD and at that time i have probably moved on and will be to old to bother about such things

I asked my neurologist about a COMT-inhibitor and if she could do some tests about it, but she was highly sceptical but agreed to a point where dopamine is important for the vision. I don't have blurry vision though and I don't think that I feel depressed or have number emotions. I know though that I'm a seeker of noradrenaline and dopamine, was never addicted to these drugs but I always loved action and had some other addictions linked to that. So maybe it would be good both psychologically and for my vision. Do you know what exactly sinemet did for you?

Things Keppra helped me with - DP/DR, visual snow, CEV:s, thinking patterns, headaches, brainfog, emotions, 5-10% reduction in visuals (or if I'm getting more used to them). Or I'm recovering and the meds are placebo, but I doubt that as there was a significant change after 1,5-2 months on Keppra. And the spikes in my brain from the sleep-EEG has been normalized.

Alcohol gives me my personality back, but the hangover takes me to hell.

 

I now try and find a good balance. 4-5 beers, if i go out... Then a klonopin the next day. I try not to get blackout drunk, these days.

I agree with you, however I tried with 1/4 of Lorazepam the day after (used like the last 3 of em in 3 months). Which was neccessary as I was having an important apointment so it did help very temporarily. But, now I've been having restless legs ans arms and joint pain and acheing skeleton for 3 days. I don't know if that's related to alcohol but it's probably the lorazepam as it has some hypnotic and very muscle-relaxing effects. Next time I'll probably just gonna sleep the worst part out instead.