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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

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Hey Larry, What do you mean by " and have things on choppy tv movement."

Hang in there bud. I know 1998 will chime in with some good benzo insight. Hopefully everything will pass soon.

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Just seems like benzo addiction and withdrawl. I heard that at a certain point, benzos become unable to control the level of addiction they cause. The thing about withdrawl is, even though its one of the worst feelings ever, it ends.

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Thanks guys. First, my very expensive doctor did some research and prescribe valium to change and then taper. It is no better. The fear factor is the same or worse.

Merkan, I think I have been on .25 mg/3-4 times a day of klonopin for more than 1 year but less than two years.

Ludwig, I mean that from the movement of the obects on the tv having become smooth and kind of normal, it I can see the movement as Not smooth, kind of stop action - see the movement from position A to B to C .. as distinct movements with a break in the motion, and also something like an afterimage, more like motion blurness/blurring.

The starbursts on lights had gone away completely and now back after years. I think it has something to do with excess water on the eyes but don't know why I would have that. Also the neorepinerine.

Just seems like benzo addiction and withdrawl. I heard that at a certain point, benzos become unable to control the level of addiction they cause. The thing about withdrawl is, even though its one of the worst feelings ever, it ends.

Br0k3nS42nt, I hope you are right!

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Just a question more before saying anything else, did you feel this WD before using Nucynta?

No. And it was not as I can recall just after I stopped nucynta, But also I had quit smoking completely in February and started to feel it then, after I stopped the patch a month after that. I was on Nucynta for about 1 1/2 months.

The strange thing is the way it all starts. Like in 1999 when I did not have hppd symptoms but was on xanax. Just one day I all of a sudden became fearful. It just got worse after that. Until I got a med from a psych. I could not take that med now cause it is contra indicated for hppd.

Edit: Iremember what the drug that helped way bac when. It was Remeron. While it di have no negative effect then as I was not experiencing the hppd relapse, it affects the 5ht2a receptors and can in many cases make hppd worse.

I was an idiot to take Nucynta in any case.

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Hi Larry I experienced this choppy vision after my acid trip that gave me HPPD its like the framerate is wrong like a bad internet video it gradually improved over time for me. I don't know about the benzos mate but when I started having difficulties with clonazepam I did somewhat better on diazepam if I was you I would ask to switch and see what happens. I hope you start to feel better soon man.

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Hi Larry I experienced this choppy vision after my acid trip that gave me HPPD its like the framerate is wrong like a bad internet video it gradually improved over time for me. I don't know about the benzos mate but when I started having difficulties with clonazepam I did somewhat better on diazepam if I was you I would ask to switch and see what happens. I hope you start to feel better soon man.

Larry I can relate, I suffered from the Slow frame thing still. Everyday all day for two years now. Although the first yr was a much lower severity. So i know how unnerving it can be, as well as frustrating.. I have been speaking with a guy over at the Dpselfhelp site who had the same problem as after much time has made some headway in understanding why he was inflected with it. He never did drugs etc but at his job they were using some kind of chemical that ended being damaging to him(as well as a few others). He saw in frames from 1/2 sec to 1/4 a second. He is seeing vision rehabilitation expert that is part of the NORA to help him although he said the worst of it improved fairly quickly thanks to a few pharmaceuticals. Specifically Dopamine agonist( his first was Wellburtin i believe, and when he noticed it really helped his doctor and he did some research and found out that many parkinsons patients suffer form this visual problem and so they tried a very very low dosage of a Parkinsons drug.. don't quite remember starts with a S though)- this may be where you are insufficient due to withdraws and it's causing this vision. The expert he sees says that seeing this is due to a problem with dopamine receptors of some kind and it cause the frame-like vision and also can cause trails. I would suspect that your vision problem will likely subside or get better as things level out from the withdraws. I have no idea why i'm two years out with not much relief but judging from my last EEg the doctors think I have some minor brain trauma to my occipital lobe from a long while back,. that's not the case for you so rest easy.

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Penny i didn't know you had this problem as well.. to be honest I thought I was pretty much the only one here with it.. How long did it take? was it continuous or episodic?

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it was really bad for a couple of weeks after my trip, and then it slowly got better I cant say how long exactly. I remember freaking out wondering if things were as smooth as they were before. It came back in different iterations the strangest was were things actually seemed sped up but again it was jerky like a video missing frames but running at a faster speed.

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Thinking about it I must of had this problem for maybe a few years as I remember being at work at a particular warehouse job there were loads of people and forklift trucks zipping all over the place and I couldn't handle it.

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Ludwig,

Thanks for the information. I had it for quite a while when this re trigerring of hppd occurred years ago. It did get much better (that visual anyway) so don't you get discouraged. I had 3 bouts of hppd. This is the longest and does not seem like there is any likelyhood of alleviating like it had the other two time, because of the length of time and the various vision problems (and tinnitus).

You may be correct as to it being from the klonopin withdrawel since it is not working on anxiety anymore. It never helped my visuals, so I would have ben better off if I never used it since it did not help visuals (static, phosphenes, vibrations, which are my bicg issues that I never had in my previous episodes of hppd symptoms. Hang in there yourself.

Penny, thanks also.

Larry

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Hi Larry (and everyone else),

It is joyful for me to meet people also suffering this vision crap - though it is sad that you are suffering such.

New to this forum but have visual anomalies do to toxic poisoning (am the fellow Ludwig mentioned in #10)

Am happy to share my experience - details are long so will be brief to start now...lol

Cutting to the chase,

Vision is a massive, multiple system that some feel is like the operating system (the foundation) in a computer.

It takes time to cognitively see. And so to make this smooth, instead of actually seeing in frames normally, the Ambient visual process system is a high speed, feed-forward system and pre-process information for the rest of the brain (actually feeds 99% of all cortical functions). It provides orientation and 'feeling' for ones environment. It feed right into the midbrain for motor control and balance. A lot of its processes use dopamine (anyone familiar with Parkinson's might know about dopamine and the midbrain areas).

So, for whatever reason, these pathways have been compromised (oxidative stress? placidity changes?) When this system isn’t up to snuff, then most cognitive functions suffer from this to some degree.

While everyone is different, so it isn't as straight forward as swallowing dopamine, this neurotransmitter is intimately involved. Note: virtually all recreational drugs affect the dopamine system directly or indirectly. Overloading any neuronal circuit causes changes.

I've had wondrous help with dopamine agonists - but you must use only small amounts. And sometime you need to compensate other areas with calming meds such as Gabapentin or benzodiazepine. Have just begun working with a vision rehabilitater who is familiar with many of these symptoms – time will tell on this but at least it is refreshing to find a doctor who understands.

If anyone wishes more information, then I’ll describe it. (otherwise this post will go on and on and on…)

Question: Has anyone here actually used carbidopa/levodopa (Sinemet 25/100)?

Best wishes for everyone here …

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Larry, shifting of your vision, spinning and even acid like cartoon visuals are complained about by some ppl in benzo w/d that don't have hppd. I've talked on some benzo w/d chat rooms for hrs. and found about 20% of ppl complain about visual symptoms during benzo w/d's. After the w/d's they said it went away, I thought it only happened to me due to hppd as well and that's why I continued klonopin 10yrs. ago when I completely quit just due to shifting visuals. Now I'm stuck at 3mg (better then 6mg previously) and I know I have a 12 to 18 month road of stictly benzo w/d's when I get more serious about tapering.

Just crossover to valium like your $300 doc. said and only drop 10% of your dose every couple weeks.

Go on youtube and look up benzotitration, the video w/ the most hits explains a hella lot later!

Ps I'm sure you all know that ambien, alcohol and any drug that works on benzo receptors will have to be stopped during w/d's and benzo's are more addicting then heroin to most when it comes to w/d's

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Thanks guys.

Visual, I would like to know more about your treatment and the effects on you.

1998, thanks for that very helpful information. Some disturbing thing just happened the other day. I had a book that had red squares on a green cover. Moving the book, the red squares came off the book, you know th affect. I hope you are correct in my case.

I started the valium and it was worse. Then my doc called and said she spoke to a specialist and said that there really is not a substitute and that I should not change the med. I should ween off from that.

Larry

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Larry, I actually had the same type of visual disturbances a few months ago my last drop. You'll get better but the lower your dosage becomes the more insane the w/d's will make you feel. I remember 10 yrs. ago when I got all the way off klono. The room started spinning and everything started shifting around scared the hell out of me. They were not hppd visuals but I didn't care, I took a klonopin that day and instantly everything got better(not saying that's what you should do at all :)

On benzobuddies.org there are many ppl that know more then doctors about benzo's and w'd's. There are so many crazy w/d's from benzo's and the fact that you're sleeping at all is great.

Oh yeah, valium crossover is the best way you could possibly come off. Very few ppl complain about having a hard time crossing over, but it can occasionally happen (need spell check)

Whenever you're feeling bad just think about how I have to still come off 3.25mg after 12yrs. of use. It's like knowing you have to go to prison soon, take care!

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Thanks guys.

Visual, I would like to know more about your treatment and the effects on you.

1998, thanks for that very helpful information. Some disturbing thing just happened the other day. I had a book that had red squares on a green cover. Moving the book, the red squares came off the book, you know th affect. I hope you are correct in my case.

I started the valium and it was worse. Then my doc called and said she spoke to a specialist and said that there really is not a substitute and that I should not change the med. I should ween off from that.

Larry

Larry,

So you have tinnitus as well. Am curious about other non-visual symptoms. Do you have (or had),

change in pain perception?

reduction in sense of smell?

muscle cramping?

numbness anywhere?

Or course we are all just getting older, but changes such as these should not be quick.

 

As for things that have helped, to start with I’ve always approached this as treating a mild brain injury (oxidative stress and/or undesirable plasticity changes).

‘Alternative’ stuff. Big topic. Couple pointers:

1) Glutathione – major converter of intermediate metabolites. Glutathione is mainly made from Vitamin C, E and Selenium with cystine as the major catalyst (which are cheaper to buy).

2) Encourage nerve repair/growth with nutrition

~5000 mcg of sublingual B12 – 1 week on, 2 weeks off

~1000 mg GPC – 1 week on, 2 weeks off

~3000 mg MSM – 1 week on, do what you want the rest of the time

Medication:

Increase Dopamine (agonists) – there are only a few available. You want to use small doses (think of it like super nutrition instead of medication that is often dosed like a sledgehammer)

Sinemet 25/100 (carbidopa/levodopa) has been the overall best. Dose ½ pill 1-4 times a day. But some doctors don’t like to prescribe it if you don’t have Parkinson’s disease. Note: Parkinsonism is brain injury involving dopamine pathways – thus a no-brainer for this application.

The second best has been Wellbutrin CR 150mg. Many doctors readily dole out anti-depressants. This is the first DA I tried. It is harder to take because in increases Norepinephrine (and thus pro-convulsive at high doses). Dose 50-75mg in morning only. I found 150 mg improved vision more but caused problems. Note: noticed significant improvement of visuals (and non-visuals) within a few hours of first dose of 75mg.

You can try Requip and others, but they are more selective (D3) and do affect visuals – but not good enough for me.

[ In harmony with above, SSRIs and anti-psychotics can make visuals worse ]

DA is used by some doctors for brain injuries. Perhaps not used much with HPPD as the gut reaction is ‘psychosis’ and in the medical community, you just don’t give dopamine to a psychotic individual.

Recently a doctor just recently told me that seeing trails and/or tracers is definitely a dopamine problem.

 

Increase GABA – this is common with both brain injuries (to slow excessive activity) and anxiety. Benzos are anti-seizure. You mention having problems with Klonopin – I would like to understand your story more.

I’ve used Gabapentin (Neurontin) with success. It is considered a mild anti-seizure. Only a little help with visuals, but reversed deterioration. Started 1800mg a day but now 600mg and reducing.

Well, hopefully this is helpful to you and other members here. For me there has been immediate improvement of frames, contrast issues and depth perception.

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ive been on some form of benzo(normally clonazepam cause a friend gives me 3mg's a day) tho i find lorazepam works better (as needed) i take one dose of kpin in the morning 1-3mg depending how im feeling, it lasts the hole day for me, benzos dont intoxicate me much at all anymore but they block panic attacks like a charm, ativan is great for bringing myself out of one. but ya ive become so anxiety ridden the last few years im on disability for it (mostly) benzos only lessen my anxiety maybe 25%.. alc would drop it 100% but i cant drink anymore :P

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Good to see you post lucid. I can't drink much anymore cause I always black out w/ my klonopin mixed. I'm basically ruphying (sp?) myself and I wake up like that movie hangover but I find out I was a dick to everybody, so I can't drink more then 6 tops lol sucks. Yeah I don't feel any sorta high from klono anymore but it does still help a with anxiety. Everybody says eventually it will totally stop working and if that ever happens I dont know wtf I'll do. I'm just hoping it's doing something different to help hppd rather then strictly anxiety patients.

Also how the hell did you manage to get disability for anxiety? I've had a hard time working because of it, but when I applied they denied me because they said I self inflicted this disorder due to the acid. That was 10 yrs ago when I applied...maybe I'll try again and just not mention lsd and say my problems are stictly due to anxiety! I'm willing to do anything to get on disability. My Wife does very well finacially but I definitely need to bring in some sorta income.

Still after all this time my family and wife just think I'm lazy because I can't handle working on the phones for 40 hrs. a week. But my headpressure, dp/dr get crazy after 1hr on business calls.

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yea i tried tapering off, couldn't handle it at all. visuals and everything else got worse and went back up to my normal dosage yesterday still waiting to get back to normal(my normal). don't know how long that takes? w/d can be done but i couldn't handle it right now because im a pussy apparently lol. gl to ya and i hope someone can inform on how long it might take for me to start feeling "normal" again.

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