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I'mNotQuiteSure

Possible relation in PAWS and HPPD?

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Hey guys, 

 

in the past I have used a lot of benzos (oxazepam) for what I thought was an anxiety disorder. Well that cleared up very well over the past few months and I don't consider it as a disorder, just natural anxiety. I did some research on benzo withdrawal the other day, and came across something very interesting. 

https://en.m.wikipedia.org/wiki/Post-acute-withdrawal_syndrome

this is a popular term on the forum: Benzo Buddies. PAWS: Post Acute Withdrawal syndrome. 

This may have nothing to do with a lot of people on this forum, but some can take this in consideration. PAWS is a syndrome that can occur after using benzos for a period around 1-3 months or longer. I read about some people who were suffering from this on the Benzo Buddies forum, and they were suffering from very similar symptoms as HPPD. Suddently my mind became rather clear and i thought: 'why didn't i think of this before.' They reported similar symptoms like afterimages, trails, static, seeing shadows, stuff in the corners of their eyes that arent there, light flashes and tracers. Could this be related? And maybe for some people this was the answer all along?

 

I'm not quite sure if this is the case for me, i used oxazepam for about 3 months but not always everyday. I stopped semi-cold turkey, i stopped in a week so i'd consider that sort of cold turkey. So what do you guys think? Is it PAWS in my case or HPPD. The only symptoms i have now are afterimages and floaters.

 

Just think about it, have you used benzos for a long time and stopped? Or still use them and got weird symptoms. I think this might be the case for some people on this forum, and maybe myself.

I'm not a specialist or anything, just curious what you guys think about this. I never experienced mine as 'trippy' but just visual distortions. Ugh i hate the label 'trippy'. 

http://www.benzobuddies.org/forum/index.php?topic=131814.0 

this is the thread I was talking about. Take a look if you want! 

I read that these symptoms usually fully diminish, but this could also take months and for heavy users even years. So a little bit the same as HPPD. But there are people in that thread who actually fully recovered. Some of them also considered it as a little bit 'trippy'. I think there is DEFINITELY a connection between these two, and for some of you who still use benzos, try to not use them (if you're mentally able to, believe me i know how hard it is) for a few weeks/months and wait for some improvement.

 

houdoe, adios, ciao!

Hope this was useful for some of you!

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And also: I noticed that my symptoms literaly decreased to what i consider as 5% the two times I did use benzos in my so thought "HPPD" / "PAWS". But I also had a bad trip so I don't really know where I belong at this point...

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I was reading somewhere recently that benzos can be neurotoxic and cause neurodegeneration, which could also be the cause of HPPD, so if that's the case it's not unlikely they possess similar symptoms. 

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23 hours ago, K.B.Fante said:

I was reading somewhere recently that benzos can be neurotoxic and cause neurodegeneration, which could also be the cause of HPPD, so if that's the case it's not unlikely they possess similar symptoms. 

Yeah, exactly. Maybe it was the combination of the two for me. I think it's practically the same disorder, but with different causes. I read a story about someone who stopped benzos cold turkey too, he never used psychedelics, and had these exact same symptoms. He went to his nearest dr. and he confirmed that his dopamine receptors were inbalanced/"burned out" because of medicine use. The doctor made some kind of plan for him to give his brain enough rest and to let the dopamine receptors recover/heal. He also followed the YBOP program (Your Brain On Porn). Which just means you stop masturbating for a long long time. This does make some sense though, while ejaculating your brain also fires off dopamine, that could mean shortage of dopamine in overmasturbation. Going a bit off topic right now guys, I know. But my point here is, isn't it a good idea to quit masturbation for a while then? I'm going to try at least, just to see where it leads me. And I thought there was also dopamine in the visual cortex/eyes? So maybe that could be the cause of some visual symptoms that don't get filtered out. This was just an hypothesis of mine, it's quite a long shot, but who knows. If it works, it works... 

BTW, a man in England reported on a visual snow forum that his visual snow and other symptoms disappeared after not masturbating for a while. He does still see visual snow on darker objects (very mildly he said), and just thinks it could've been like that before, you just don't have anything to compare it with anymore which is understandable.

Chronic lyme disease/late stage lyme disease also has very similar symptoms to HPPD. I guess it's overstimulation of the brain/chronic or long term fatigue. We just need to find a cure that will decrease the neural activity to an extent, and thats a freaking hard thing to find ahah. 

I believe that there is something to cure it, 1. Time 2. Welllll, haven't quite figured that out but yeah. 

I'll keep y'all updated if I see some progress!

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1 hour ago, I'mNotQuiteSure said:

Yeah, exactly. Maybe it was the combination of the two for me. I think it's practically the same disorder, but with different causes. I read a story about someone who stopped benzos cold turkey too, he never used psychedelics, and had these exact same symptoms. He went to his nearest dr. and he confirmed that his dopamine receptors were inbalanced/"burned out" because of medicine use. The doctor made some kind of plan for him to give his brain enough rest and to let the dopamine receptors recover/heal. He also followed the YBOP program (Your Brain On Porn). Which just means you stop masturbating for a long long time. This does make some sense though, while ejaculating your brain also fires off dopamine, that could mean shortage of dopamine in overmasturbation. Going a bit off topic right now guys, I know. But my point here is, isn't it a good idea to quit masturbation for a while then? I'm going to try at least, just to see where it leads me. And I thought there was also dopamine in the visual cortex/eyes? So maybe that could be the cause of some visual symptoms that don't get filtered out. This was just an hypothesis of mine, it's quite a long shot, but who knows. If it works, it works... 

BTW, a man in England reported on a visual snow forum that his visual snow and other symptoms disappeared after not masturbating for a while. He does still see visual snow on darker objects (very mildly he said), and just thinks it could've been like that before, you just don't have anything to compare it with anymore which is understandable.

Chronic lyme disease/late stage lyme disease also has very similar symptoms to HPPD. I guess it's overstimulation of the brain/chronic or long term fatigue. We just need to find a cure that will decrease the neural activity to an extent, and thats a freaking hard thing to find ahah. 

I believe that there is something to cure it, 1. Time 2. Welllll, haven't quite figured that out but yeah. 

I'll keep y'all updated if I see some progress!

I heard or read somewhere that Dr. Abraham, who's basically one of the leading researchers on HPPD, also believes there's a connection to dopamine. Also interesting you say that because I've been reading a lot everywhere I go about how beneficial it is to stop pleasing yourself for long periods of time and so I've tried it myself for the last three weeks and I have to say I feel pretty good. I'm doing a lot of other things to heal but I think there could be something to what you're saying.  

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18 minutes ago, K.B.Fante said:

I heard or read somewhere that Dr. Abraham, who's basically one of the leading researchers on HPPD, also believes there's a connection to dopamine. Also interesting you say that because I've been reading a lot everywhere I go about how beneficial it is to stop pleasing yourself for long periods of time and so I've tried it myself for the last three weeks and I have to say I feel pretty good. I'm doing a lot of other things to heal but I think there could be something to what you're saying.  

That's good to hear! There could be a connection between these two because if your dopamine is imbalanced it's not a very smart thing to stimulate it a lot? I'm also going to try it for a while. Just trying to get the chemical imbalance in the right order again. Who knows where this will lead to? Did some symptoms improve? I read that overmasturbation can cause some other neurological disturbances like brain fog / derealization, some people also noticed depression. At this moment I only suffer from palinopsia which really sucks, I should actually be happy that things are improving so good and considerably fast for me, but still I am trying to put my mind in this. It's a very disturbing experience...

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Actually, while i'm at it, have you ever used benzos? And if you did, how long did the full on effect last. Like when your visual disturbances diminished or something, did they come back after 1 day or not? Just curious how long it works ahah. And has anyone else?

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13 hours ago, I'mNotQuiteSure said:

Actually, while i'm at it, have you ever used benzos? And if you did, how long did the full on effect last. Like when your visual disturbances diminished or something, did they come back after 1 day or not? Just curious how long it works ahah. And has anyone else?

I had a bad experience with benzos, got hooked, had terrible withdrawals, insomnia for months, the whole nine yards. They did seem to give me slight relief from HPPD but nothing significant. I didn't see them as a longterm solution anyway so I've had no problems touching them again ever since they nearly killed me. 

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So I just stumbled on this and because we were talking about it above I thought I'd post. It's just the summary of the Wikipedia entry for Excitotoxicity. Basically excessive glutamate kills brain cells and occurs not only in strokes, brain injuries and neurodegenerative diseases but also from rapid benzo withdrawal. 

Screen Shot 2017-03-25 at 12.25.39 PM.png

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I find this to be a very interesting topic especially in regards to keppra and how sometimes it can help hppd so much. See keppra can negate the effects of negative alosteric modulators on GABA receptors in the hippocampus. Who knows for the rest of the brain. I don't think it has to do with the reduction in glutamate activity that helps the hppd. In fact with my experience with racetams such as oxiracetam increasing glutamate funnction made my visuals all but disappear. I have a hunch that keppra corrects malfunctioning GABA receptors in the brain which allows for its beneficial effect. It does however have a multitude of other mechanisms of action and those can lead to unsavory side effects such as abnormal thinking and anxiety etc. I've read somewhere it decreases neurotransmitter release of acetylcholine and that can cause anxiety in some. I had way ramped up acetylcholine function from using too much coluracetam and keppra helped with that so much with those high symptoms. Especially the physical ones and depressive symptoms. In fact a lot of my dopamine disjunction was corrected when I got my acetylcholine levels down because of their competitive nature. Haha the decrease in acetylcholine was so fierce that I actually felt kind of manic for three days every time I increased the keppra before my receptors sensitized to normal levels.

 

if I had to guess there are many components to hppd involving acetylcholine function, glutamate function, dopamine function, and GABA function. 

 

http://onlinelibrary.wiley.com/doi/10.1038/sj.bjp.0704766/full

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1 hour ago, Onemorestep said:

I find this to be a very interesting topic especially in regards to keppra and how sometimes it can help hppd so much. See keppra can negate the effects of negative alosteric modulators on GABA receptors in the hippocampus. Who knows for the rest of the brain. I don't think it has to do with the reduction in glutamate activity that helps the hppd. In fact with my experience with racetams such as oxiracetam increasing glutamate funnction made my visuals all but disappear. I have a hunch that keppra corrects malfunctioning GABA receptors in the brain which allows for its beneficial effect. It does however have a multitude of other mechanisms of action and those can lead to unsavory side effects such as abnormal thinking and anxiety etc. I've read somewhere it decreases neurotransmitter release of acetylcholine and that can cause anxiety in some. I had way ramped up acetylcholine function from using too much coluracetam and keppra helped with that so much with those high symptoms. Especially the physical ones and depressive symptoms. In fact a lot of my dopamine disjunction was corrected when I got my acetylcholine levels down because of their competitive nature. Haha the decrease in acetylcholine was so fierce that I actually felt kind of manic for three days every time I increased the keppra before my receptors sensitized to normal levels.

 

if I had to guess there are many components to hppd involving acetylcholine function, glutamate function, dopamine function, and GABA function. 

 

http://onlinelibrary.wiley.com/doi/10.1038/sj.bjp.0704766/full

I don't think it's as simple as increasing or decreasing glutamate. Neurotoxicity stems more from a rapid increase of glutamate during a short time that causes all sorts of different reactions -- including potential strokes, biochemical cascades inside the brain and so on -- that lead to necrosis. Even after neurodegeneration when glutamate returns to normal levels the damage has already been done. It's sorta like a bomb, I guess: It takes a lot of different elements interacting at the same time to cause an explosion but once the blast occurs you can't just pick the pieces up and put them back together.

Like you said, I'm sure the aftereffects of HPPD are far reaching and have an impact on many different types of cells and pathways inside the brain, but I still think the idea that neurotoxicity of some kind makes a lot of sense. 

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I agree with you that it's definitely brain damage in part at least. The medications I've used to treat the synptoms I believe are just modulating what remaining cells I have left to make the overall functioning more like it was before but it usually doesn't last and has unfortunate side effects. I think my next goal is to get stem cells shot into my brain in Thailand and see if that does anything. Even then I'm dubious since I believe a lot of my problems are coming from hypothalamus issues from oxidative stress due to the oxiracetam. Not sure how I could get stem cells that far into the brain. 

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For me the worst thing I got is anhedonia and that happened after 9 months on baclofen. I think the intense GABA agonism screwed with my reward system somehow. Keppra brings back my ability to enjoy things though and I speculate it's because it's bringing some of those semi permanently misfunctioning GABA receptors back into the normal fold of activity. But it's all just speculation.

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9 hours ago, Onemorestep said:

For me the worst thing I got is anhedonia and that happened after 9 months on baclofen. I think the intense GABA agonism screwed with my reward system somehow. Keppra brings back my ability to enjoy things though and I speculate it's because it's bringing some of those semi permanently misfunctioning GABA receptors back into the normal fold of activity. But it's all just speculation.

Have you improved at all? How'd you first get your HPPD? And I'm a bit confused -- did you take something that made it worse? 

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After reading so many articles I too believed that hppd/vs which is drug related ( including ssri's and benzo's) is caused by neuronal death . But I've also read that some ppl have fully recovered( after taking keppra or even without any meds) According to dr Abraham 50% fully recover . But does he mean the visuals completely disappear or that 50% of hppd patients recover mentally despite having disturbing visual symptoms?

http://thosewithvisualsnow.yuku.com/reply/25645

this is an old thread but apparently this guy 100% cured his vs .

Honestly I'm just looking for something to get rid of vs . I can live with some negative after images and slight trailings .

 

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45 minutes ago, SaraSara said:

After reading so many articles I too believed that hppd/vs which is drug related ( including ssri's and benzo's) is caused by neuronal death . But I've also read that some ppl have fully recovered( after taking keppra or even without any meds) According to dr Abraham 50% fully recover . But does he mean the visuals completely disappear or that 50% of hppd patients recover mentally despite having disturbing visual symptoms?

http://thosewithvisualsnow.yuku.com/reply/25645

this is an old thread but apparently this guy 100% cured his vs .

Honestly I'm just looking for something to get rid of vs . I can live with some negative after images and slight trailings .

 

I don't believe it's caused by neuronal death at all. A lot of people get symptoms after months. In my opinion it's a chemical imbalance/overstimulated neurotransmitters. I read a lot of stories of people that also got rid of the visual symptoms. I personally suffer from palinopsia only.

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Here is an example of someone who recovered from it from benzo withdrawal. I think this should also be considered as HPPD because it's long lasting, and all the symptoms are the same. There are a lot more succes stories on the Benzo Buddies forum because it's a community that is not based on one condition, but on everything that has to do with benzos. Some people on that forum also suffered from these symptoms for multiple months and even years. So it's just a process of healing and patience. When dr. Abraham states that 50% fully recovers, I think he's telling the truth and also includes visual disturbances, because that's the main issue for most sufferers. 

IMG_8585.PNG

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I really hope that we're dealing with a chemical imbalance which is reversible. 

Ur lucky ur vs and trailings are gone . To me the most disturbing symptoms are vs and trailings . Trailings are a bit more bearable than vs coz I only see it in the dark from time to time and it's not 24/7  . My negative after images are more than the trailings but they don't freak me out .I just find them annoying.

Ur already pretty much cured of vs and trailings so I think and hope the after images will go away as well :) .

 

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3 hours ago, I'mNotQuiteSure said:

I don't believe it's caused by neuronal death at all. A lot of people get symptoms after months. In my opinion it's a chemical imbalance/overstimulated neurotransmitters. I read a lot of stories of people that also got rid of the visual symptoms. I personally suffer from palinopsia only.

Just because you get symptoms slowly doesn't mean it isn't neurodegeneration. Many neurodegenerative diseases like Alzheimer's and Parkinson's come on slowly over the course of years and even decades. 

Last week a member of this forum posted a link to the first published study I'm aware of that proved hallucinogens can be neurotoxic: https://www.researchgate.net/publication/14821234_Degeneration_of_Purkinje_cells_in_parasagittal_zones_of_the_cerebellar_vermin_after_treatment_with_Ibogaine_or_harmaline

So we now know hallucinogens have the ability to cause necrosis, aka cell death. In addition, we also know many people who get HPPD suffer from anxiety. Science has confirmed that with increased stress follows increased cortisol which creates a surplus of the transmitter glutamate: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181836/

In addition, we know glutamate produces free radicals which attack and kill brain cells: https://link.springer.com/article/10.1134%2FS000635090905011X

But glutamate is also excitotoxic, activating and killing NMDA receptors, which are the same receptors targeted in certain hallucinogenic drugs: https://www.sciencedaily.com/terms/excitotoxicity.htm

Finally, it's thought glutamate is the missing link to signal necrosis after ischemia (loss of oxygen) wherein during even a very brief episode of blood loss glutamate is activated and thus triggers cell death: http://www.sciencedirect.com/science/article/pii/S0301008213001305

On the topic of blood flow, it's also been noted how LSD and other hallucinogens can decrease blood circulation in certain parts of the brain: http://www.nature.com/news/brain-scans-reveal-how-lsd-affects-consciousness-1.19727

I'm just saying, between anxiety and chemical drugs there's plenty of potential for excess glutamate, loss of blood flow and a possible triggering of necrosis. When I saw a neurologist this past winter he said he didn't know what happened to me but that I had symptoms of a stroke. I also know that in the weeks leading up to taking LSD I had a period of extreme anxiety where I didn't hardly sleep for about 10 days. It was without question the worst acute stretch of anxiety I've ever had. So for me there almost had to be some sort of a glutamate overload, and I assume for those who suffered from anxiety already prior to taking drugs or had a really bad trip that triggered an incredible release of anxiety and glutamate there's a good chance they were in the same boat as I was. 

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So I just searched "glutamate" on this site an about 150 different results popped up. Datismane's "CURE" thread is by far the most scientifically introspective on the topic of what causes HPPD and I think everyone here should try and read through it at some point. He suggested a link to glutamate excitotoxicity four years ago (three posts from the top): 

 

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I have took Benzos over a lengthly time (on and off for over a year now)and have HPPD and have noticed brain zips which are visual disturbances and also noticed it had an impact on my memory. I noticed brain zaps but also the swirls sometimes i get in the dark before bed... like light orbs all seemed to be correlated when i am on xanax. Further more I noticed muscle weakness also. Recently i have been testing them in very low amounts of xanax and still getting huge disturbances from the medicine which i find strange.

Edited by FCDE
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54 minutes ago, K.B.Fante said:

 When I saw a neurologist this past winter he said he didn't know what happened to me but that I had symptoms of a stroke

A resident neuro at USC told me that she thought I had been exposed to chemicals/toxic encephalopathy. Another disorder that occurs due to organic brain damage. 

This is annecdotal, and there are plenty of other anecdotal accounts of this phenomena with people on MDMA, but after I had taken Eth-lad, I did lose my sense of smell, taste, and experienced aphasia, which are also symptoms found in people who have suffered strokes. The glutamate release and GABAergic inhibition also is an important mechanism of action in Ketamine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3883303/ , which is also known to induce HPPD. 

And then there's all that research showing a link between brain inflammation and anxiety states/induction of schizophrenic states

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4612505/



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181922/ - There's a section here that outlines excess glutamate in its relation to anxiety and depression. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604071/ - Impaired Olfactory and Taste function in Chronic stroke patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3777265/ 

But is it all glutamate mediated neurotoxicity? 5HT Receptors do have some pretty gnarly effects on temperature regulation as well. 

I wonder if hyperthermia plays a role as well, in regards to inducing apoptosis in the cerebellum? If I recall, the purkinje cells are particularly susceptible to heat, and die off pretty rapidly when temperatures exceed 40 degrees Centigrade.

Edited by Azureazalea
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I think you could be on to something.. I noted earlier I am only taking small amounts of xanax right now but during December I was using xanax and vodka 4mgs aday and I quit that for some months... and during this time after I developed photopsia at night for awhile. I quit using vodka and xanax one night when I experienced full closed visuals from vodka+xanax+benadryl

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could it be that those who get fully cured of vs or hppd are dealing with some sort of chemical imbalance and those who are stuck with vs and/or hppd are suffering from neurodegeneration? I'm no expert what so ever but after reading these posts and articles I'm starting to think that maybe various things can cause/trigger vs/hppd just like in Tinnitus. Some ppl get it after hearing loss some ppl get it after a stressful event .

I personally got vs and palinopsia after ssri withdrawal . I've never used any illicit drug but xtc , lsd and SSRI's are all serotonin related that's why vs due to SSRI withdrawal might be caused in the same way as hppd rather that idiopathic vs .

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2 hours ago, SaraSara said:

 could it be that those who get fully cured of vs or hppd are dealing with some sort of chemical imbalance and those who are stuck with vs and/or hppd are suffering from neurodegeneration? I'm no expert what so ever but after reading these posts and articles I'm starting to think that maybe various things can cause/trigger vs/hppd just like in Tinnitus. Some ppl get it after hearing loss some ppl get it after a stressful event .

I personally got vs and palinopsia after ssri withdrawal . I've never used any illicit drug but xtc , lsd and SSRI's are all serotonin related that's why vs due to SSRI withdrawal might be caused in the same way as hppd rather that idiopathic vs .

I think you're right. That would also explain why benzos affect the intensity for some people, and for some people not. The brain is possible to recover from a chemical imbalance, but not from neurodegeneration (maybe in a few years with very advanced technology). A chemical imbalance isn't considered as damage I believe. This would be way easier to resolve. I'm trying a lot of things to get my dopamine levels up and cortisol levels down. I feel it's improving significantly, which could conclude (not 100% sure) it's a chemical imbalance, behold in MY case, don't know if this is the case for everyone.

 

It would be a very logical conclusion because benzos can also cause it, and benzos aren't known for inserting brain damage. It truly differs from person to person. It's just a question how to get everything back in order, and that's why you really have to help your brain a lot to do so. If people can recover from strokes/benzo withdrawals with the exact same symptoms/lyme disease and some other cases, like in your case SSRI's makes me believe that HPPD can also be cured 100%! (Not sure if that's the case in every case). Remember, the brain is a very complicated organ, like I saw on some forum, the brain is a big lump of meat with electricity running through it which can be shook up real bad. But it can also be trained and altered. If these distortions can happen, there is also a way to make them reverse in some way, maybe time i guess, or a pill that we just haven't found yet. My guess is that time is the healer, and for a lot of people it really was. There are not a lot of succes stories on HPPDonline because this is a support forum rather then a forum to post succes stories. If you look around on the bluelight forum you'll find a lot more succes stories, really a LOT. But they just didn't need support forums like this or maybe left after a while. I saw a post yesterday on the bluelight forum with someone who recovered and stating the exact same thing. "Once my visual disturbances were gone I just felt normal, I completely forgot about HPPD, it's like a trauma that you don't want to look back to. But after a few years I got remembered by a friend of mine, and I thought about how I felt back then. But I'm here for you guys to show that it can happen, and I'm very happy in life. Never forget where you came from!" He wanted to help people who are suffering from it now, but that shows that even if you recovered, you just want to let it behind you.

We'll find a way!

keep your hopes up guys...

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