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Hi guys, 

I'm at this point where my hppd is getting so bad that my life quality is getting low and its affecting everything. I cannot enjoy being outside by day, i go crazy over white walls, need to wear sunglasses everywhere.. I'd like some help, thoughts and advice. Thanks in advance

I'm 27 years old, i live in Belgium and i think i have hppd symtoms for over 4 years now. I have very very bad visual snow. 

I gave up on all drugs because of my hppd. The last year it got a lot worse. The only stuff i still use is alcohol and sleeps meds. 

I took zolpidem (ambien) to sleep, because it made my hppd alot worse my doc gave me lormetazapam and trazodone (ssri) to sleep. The trazodone fucked me real good. After 3 weeks my hppd doubled. I gave up on trazodone 3 months ago. Now i am building of my lormetazepam i'm on 0.3 every night. Still my hppd is getting worse. While this 0.3 and 1 evening of alcohol every week are the only substances i am using. 

I read alot that benzos might help for hppd, would there be a differance among benzos for hppd? That lormetazepam makes it worse and clonazepam would help? Or is that not possible? 

How could my hppd be getting so much worse while using no other substances then 0.3 benzo and sometimes alcohol..? 

 

Any advice is welcome, i am desperate 

 

Thanks in advance 

 

 

Edited by Bizzey1993
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Hi Friend, 

I'm sorry to hear how much you are struggling.  Unfortunately I do not have much experience with meds other than Zoloft which I have been on for about 3 years and has helped my anxiety and OCD.  I don't think it's impacted my visual symptoms and they have progressively gotten better.  I know it's hard to bear day in and day out but try to stay positive; you will recover.  Everyone's path through recovery is different, this disorder is very strange and sometimes doesn't seem to make sense.  I tell everyone the same thing which is what worked for me:

  • Stop all drugs (even alcohol for a bit if you can) 
  • Get as much sleep as you can 
  • Exercise regularly even if it makes your symptoms worse
  • Eat well 
  • Stay busy with work/ school/ hobby etc
  • Try not to worry 
  • Learn to meditate if you can (this was really helpful for me) 
  • If you're open to it, start praying to God (it doesn't have to be any particular religion just ask for help on your knees everyday.  I really believe it will come if we reach out)

There's an old saying and it goes like this: "When you're in hell the only thing to do is keep moving".  You'll get past this, stay strong and know that we're here for you.  If we can recover then so can you. 

Take Care,

Nick 

 

Edited by cosmiccharlie
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4 hours ago, cosmiccharlie said:

Hi Friend, 

I'm sorry to hear how much you are struggling.  Unfortunately I do not have much experience with meds other than Zoloft which I have been on for about 3 years and has helped my anxiety and OCD.  I don't think it's impacted my visual symptoms and they have progressively gotten better.  I know it's hard to bear day in and day out but try to stay positive; you will recover.  Everyone's path through recovery is different, this disorder is very strange and sometimes doesn't seem to make sense.  I tell everyone the same thing which is what worked for me:

  • Stop all drugs (even alcohol for a bit if you can) 
  • Get as much sleep as you can 
  • Exercise regularly even if it makes your symptoms worse
  • Eat well 
  • Stay busy with work/ school/ hobby etc
  • Try not to worry 
  • Learn to meditate if you can (this was really helpful for me) 
  • If you're open to it, start praying to God (it doesn't have to be any particular religion just ask for help on your knees everyday.  I really believe it will come if we reach out)

There's an old saying and it goes like this: "When you're in hell the only thing to do is keep moving".  You'll get past this, stay strong and know that we're here for you.  If we can recover then so can you. 

Take Care,

Nick 

 

Thanks for your response, i appreciate, could you perhaps send a link or site of wich meditation you are using? I'm new to this.

Thank you

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Glad to help.  There are many different options but basic technique is very simple.

  • Set aside a time of day (I like the morning) and a place 
  • Seated on the ground or in a chair (whatever is comfortable) 
  • Eyes open or closed your choice (maybe closed since visuals can be distracting) 
  • Back straight posture good but not uncomfortable 
  • Set a timer (start small whatever feels reasonable maybe 2-5 minutes) 
  • For that time your only responsibility is to place your attention on the rhythm of your breath 
  • Breath normally and count your breath 1,2,1,2,1,2....
  • Thoughts will come (am I doing it right, my back hurts, should I have oatmeal for breakfast....) This is totally normal this is just the chatter of our mind.  When they come, acknowledge them and let them go, try not to chase them.  It's also very common to inadvertently chase a thought, this is totally natural but when you realize you have been thinking just acknowledge and go back to the breadth.  
  • Try to have an open mind and limit expectations
  • TRY TO MAKE A COMMITMENT IF YOU WANT TO SEE RESULTS. I think of it as exercise, you won't notice a difference by going to the gym three or four times.  You need consistency and eventually our bodies become stronger.  The same is true for the mind, give it time, make it a priority if you really want to try it.  

Our minds are incredible machines and the thoughts can be very overwhelming but they really are not who we are.  Being present in the moment, that is reality and the more we do this the more aware of our true selves we become. 

Recently I have been using an app called Headspace, I think it's $5 (US dollars) per month but it's certainly not necessary.  There's some nice resources on there, guided meditations, meditation for anxiety reduction, meditation for creativity....

https://www.headspace.com/meditation/meditation-for-beginners 

Let me know if you have any questions.  Remember, the basic instructions are to just pay attention to our breathing.  This is a purely mechanical exercise that somehow stimulates our deeper selves (the spiritual side if you will) 

I wish you the best.

Take Care,

Nick 

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19 minutes ago, cosmiccharlie said:

Glad to help.  There are many different options but basic technique is very simple.

  • Set aside a time of day (I like the morning) and a place 
  • Seated on the ground or in a chair (whatever is comfortable) 
  • Eyes open or closed your choice (maybe closed since visuals can be distracting) 
  • Back straight posture good but not uncomfortable 
  • Set a timer (start small whatever feels reasonable maybe 2-5 minutes) 
  • For that time your only responsibility is to place your attention on the rhythm of your breath 
  • Breath normally and count your breath 1,2,1,2,1,2....
  • Thoughts will come (am I doing it right, my back hurts, should I have oatmeal for breakfast....) This is totally normal this is just the chatter of our mind.  When they come, acknowledge them and let them go, try not to chase them.  It's also very common to inadvertently chase a thought, this is totally natural but when you realize you have been thinking just acknowledge and go back to the breadth.  
  • Try to have an open mind and limit expectations
  • TRY TO MAKE A COMMITMENT IF YOU WANT TO SEE RESULTS. I think of it as exercise, you won't notice a difference by going to the gym three or four times.  You need consistency and eventually our bodies become stronger.  The same is true for the mind, give it time, make it a priority if you really want to try it.  

Our minds are incredible machines and the thoughts can be very overwhelming but they really are not who we are.  Being present in the moment, that is reality and the more we do this the more aware of our true selves we become. 

Recently I have been using an app called Headspace, I think it's $5 (US dollars) per month but it's certainly not necessary.  There's some nice resources on there, guided meditations, meditation for anxiety reduction, meditation for creativity....

https://www.headspace.com/meditation/meditation-for-beginners 

Let me know if you have any questions.  Remember, the basic instructions are to just pay attention to our breathing.  This is a purely mechanical exercise that somehow stimulates our deeper selves (the spiritual side if you will) 

I wish you the best.

Take Care,

Nick 

Thank you very much Nick, i appreciate the effort you put in for me. I will definitely try meditation because i also need more rest in my mind. I was a person living from high to high always feeling this emptiness, i try really hard not using any substances, i gave up on smoking for over a month now and i started running. I feel these benefits so i am open to meditation and i truly believe i can benefit from this. 

I assume that meditation can lower stress and in this way it can benefit for hppd.

Thanks alot

 

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Since you've had it for so long and it's severity i would try Keppra or Lamotrigine if i were you! Read the thread below! And i'm curious, which drug caused yours and what's you history with drugs?

 

Edited by Hall89
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11 hours ago, cosmiccharlie said:

other than Zoloft which I have been on for about 3 years and has helped my anxiety and OCD.  I don't think it's impacted my visual symptoms and they have progressively gotten better.

 

This is interesting, because i've read a couple of other cases were it actually have helped alot (see below). Did your visual snow go away while you were on them?

https://amp.reddit.com/r/HPPD/comments/6a62yr/ssri_helped_with_hppd/

And a case study, but it seems that he only had HPPD type l since it says that his symptoms "occured almost daily":

"Antidepressant treatment was begun with sertraline 25 mg and was titrated upward slowly owing to concern about these flashbacks. Mild exacerbations of these LSD-like phenomena were noted for 2 to 4 days after each dosage increase, primarily as flashes of color, positiva afterimages, and feeting hallucinations in his peripheral vision. Within 1 month after the target dose of 100 mg was reached, these perceptual disturbances decreased until they had almost completely remitted. The depressive symtoms also improved. These gains were maintained for 4 months, at which point Mr. A graduated and terminated treatment.

https://www.psychiatrist.com/jcp/depression/sertraline-treatment-hallucinogen-persisting-perception/"

Edited by Rusken
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44 minutes ago, Rusken said:

This is interesting, because i've read a couple of other cases were it actually have helped alot (see below). Did your visual snow go away while you were on them?

https://amp.reddit.com/r/HPPD/comments/6a62yr/ssri_helped_with_hppd/

And a case study, but it seems that he only had HPPD type l since it says that his symptoms "occured almost daily":

"Antidepressant treatment was begun with sertraline 25 mg and was titrated upward slowly owing to concern about these flashbacks. Mild exacerbations of these LSD-like phenomena were noted for 2 to 4 days after each dosage increase, primarily as flashes of color, positiva afterimages, and feeting hallucinations in his peripheral vision. Within 1 month after the target dose of 100 mg was reached, these perceptual disturbances decreased until they had almost completely remitted. The depressive symtoms also improved. These gains were maintained for 4 months, at which point Mr. A graduated and terminated treatment.

https://www.psychiatrist.com/jcp/depression/sertraline-treatment-hallucinogen-persisting-perception/"

It is interesting.  We are all different.  In the beginning of medication I think I did feel some exacerbation of visual symptoms but I stuck with it because I also felt some gain in the anxiety, depressions, OCD realm.  I think the flare up was short lived and once an equilibrium was reached which usually takes 8 weeks or so, maybe even longer they went back to baseline.  I still have visuals today but they are much less prevalent and I have accepted that I will likely have them for the foreseeable future. This is what one gets for taking 15 hits of good LSD in one night.  

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22 hours ago, cosmiccharlie said:

It is interesting.  We are all different.  In the beginning of medication I think I did feel some exacerbation of visual symptoms but I stuck with it because I also felt some gain in the anxiety, depressions, OCD realm.  I think the flare up was short lived and once an equilibrium was reached which usually takes 8 weeks or so, maybe even longer they went back to baseline.  I still have visuals today but they are much less prevalent and I have accepted that I will likely have them for the foreseeable future. This is what one gets for taking 15 hits of good LSD in one night.  

Yea it really is! But i'm curious, you've said that your visual snow diminished, was that when you were on Sertraline? And are your vision really clear today? 

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26 minutes ago, Rusken said:

Yea it really is! But i'm curious, you've said that your visual snow diminished, was that when you were on Sertraline? And are your vision really clear today? 

I no longer have visual snow but I still have trails, and see moving patterns on surfaces.  

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20 hours ago, cosmiccharlie said:

I no longer have visual snow but I still have trails, and see moving patterns on surfaces.  

Yea, but did that go away before you started with the sertraline or when you were on it?

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On 4/8/2021 at 3:08 PM, cosmiccharlie said:

I no longer have visual snow but I still have trails, and see moving patterns on surfaces.  

May i ask how your VS was when you had it? Did you see it pretty much everywhere when you were inside or if you looked at the sky? And if you look at a white wall now, is there really nothing? The VS is without a doubt my worst symptom along with not feeling completely awake/clear in my head. I was at the gym today and when i looked in the mirror that was about 10 meters away i couldn't see my face because it was so grainy/blurry, almlst made me cry. So the VS really has taken my ability to see things clear in the distance.

God i hate this fucking disorder, and what pisses me of the most is how unfair it is, i mean, i know people that have smoked cannabis on almost a daily basis for 5+ years with no consequences, and here i try it for the fourth time in my entire life (only two hits) and gets the worst god damn disorder one can get from psychedelics.

The funny thing is that i didn't think that things could get much worse in my life before getting this since i had been battling a fatigue syndrome for almost a year (insomnia, inability to handle stress, anxiety etc), two herniated discs for a couple of years that gives me chronic pain, the passing of a good friend a few months ago, a couple of muscle tears in november that robbed me of my training and made me unable to work and on top of that relationship problems with my fiancee and love of my life and an increased migraine frequency. All this shit was actually the reason for trying the weed; i wanted to get a small break from everything. It's like there's someone up there that has made it his or hers life goal to crack me!😅

Sorry, i just had to let that out. But seriously, fuck life! I really wish that i never had been born and now i'm to much of a coward to end this nightmare, i quess it's that small piece of hope that some do seem to get a reduction in symptoms or fully diminsh that keeps me from the noose. But there's so few success stories out there so i have a hard time believing that any of this actually can get any better and that those that claim it just have gotten used to their symptoms.

Edited by Hall89
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2 hours ago, Hall89 said:

May i ask how your VS was when you had it? Did you see it pretty much everywhere when you were inside or if you looked at the sky? And if you look at a white wall now, is there really nothing? The VS is without a doubt my worst symptom along with not feeling completely awake/clear in my head. I was at the gym today and when i looked in the mirror that was about 10 meters away i couldn't see my face because it was so grainy/blurry, almlst made me cry. So the VS really has taken my ability to see things clear in the distance.

God i hate this fucking disorder, and what pisses me of the most is how unfair it is, i mean, i know people that have smoked cannabis on almost a daily basis for 5+ years with no consequences, and here i try it for the fourth time in my entire life (only two hits) and gets the worst god damn disorder one can get from psychedelics.

The funny thing is that i didn't think that things could get much worse in my life before getting this since i had been battling a fatigue syndrome for almost a year (insomnia, inability to handle stress, anxiety etc), two herniated discs for a couple of years that gives me chronic pain, the passing of a good friend a few months ago, a couple of muscle tears in november that robbed me of my training and made me unable to work and on top of that relationship problems with my fiancee and love of my life and an increased migraine frequency. All this shit was actually the reason for trying the weed; i wanted to get a small break from everything. It's like there's someone up there that has made it his or hers life goal to crack me!😅

Sorry, i just had to let that out. But seriously, fuck life! I really wish that i never had been born and now i'm to much of a coward to end this nightmare, i quess it's that small piece of hope that some do seem to get a reduction in symptoms or fully diminsh that keeps me from the noose. But there's so few success stories out there so i have a hard time believing that any of this actually can get any better and that those that claim it just have gotten used to their symptoms.

 

 

 

Things can always get worse unfortunately, and sometimes we don't realize how much we have until it's gone (cliche but seemingly true). 

As for my VS, today it is gone but when I did have it it was very scary and made me feel extremely guilty.  I think it was the first thing to go and I'm not sure it ever came back.  This was about 12 years ago when I was at the tail end of my first round of psychedelic adventures.  It was a gradual reduction that was difficult to notice until a few months into recovery.  When I did have it, it was definitely bad.  Now when I look at a white wall, I see swirling colors and minor surface vibration.  It's not very intense and I can manage it.  One of the symptoms that bothered me the most was afterimages.  If I looked at a stop sign for example then looked away I would see a very clear image of the shape, the letters which would change! Even when I kept my eyes fixed at the different point. It would sometimes grow in size, change color and do other things.  Thankfully, nothing like that is a part of my life any more.  Even the effects of my recent experiment with weed are dissipating (two weeks sober now).  

I would try and relax man, you will get better just try to let it happen.  When your body heals from a cold or other injury do you spend large amounts of time waiting for it to do its job or try to will it away?  Probably not, we just let our systems work and trust that they will take care of business.  A similar perspective can be adopted here. You are at the whim of your body, mind and this disorder.  Accepting that can be a huge victory and enable you to get past it while it's still a part of your life.  I know things seem hopeless but they really never truly are while we still have breath in our lungs.  Suffering comes with life and how we respond to it very much dictates how happy we are.  Fighting it in my experiences usually leads to more suffering.  For me, acceptance was the answer to many of the problems that I didn't have the power to solve.

Anyway, venting is good and this is the place for it. I wish the forum was as active as it used to be, hopefully it will return to normal at some point. 

Take Care 

Nick   

 

 

Edited by cosmiccharlie
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14 hours ago, cosmiccharlie said:

Things can always get worse unfortunately, and sometimes we don't realize how much we have until it's gone (cliche but seemingly true). 

As for my VS, today it is gone but when I did have it it was very scary and made me feel extremely guilty.  I think it was the first thing to go and I'm not sure it ever came back.  This was about 12 years ago when I was at the tail end of my first round of psychedelic adventures.  It was a gradual reduction that was difficult to notice until a few months into recovery.  When I did have it, it was definitely bad.  Now when I look at a white wall, I see swirling colors and minor surface vibration.  It's not very intense and I can manage it.  One of the symptoms that bothered me the most was afterimages.  If I looked at a stop sign for example then looked away I would see a very clear image of the shape, the letters which would change! Even when I kept my eyes fixed at the different point. It would sometimes grow in size, change color and do other things.  Thankfully, nothing like that is a part of my life any more.  Even the effects of my recent experiment with weed are dissipating (two weeks sober now).  

I would try and relax man, you will get better just try to let it happen.  When your body heals from a cold or other injury do you spend large amounts of time waiting for it to do its job or try to will it away?  Probably not, we just let our systems work and trust that they will take care of business.  A similar perspective can be adopted here. You are at the whim of your body, mind and this disorder.  Accepting that can be a huge victory and enable you to get past it while it's still a part of your life.  I know things seem hopeless but they really never truly are while we still have breath in our lungs.  Suffering comes with life and how we respond to it very much dictates how happy we are.  Fighting it in my experiences usually leads to more suffering.  For me, acceptance was the answer to many of the problems that I didn't have the power to solve.

Anyway, venting is good and this is the place for it. I wish the forum was as active as it used to be, hopefully it will return to normal at some point. 

Take Care 

Nick   

Yea, ain't that the truth! But besides going fully or partly blind this is on the top of the worst things that could've happened to me. I'm serious when i say that i would rather have lost both my legs than this because, because the top things that i love doing here in life is working in photoshop and gaming, now i can't do neither, or well, i "can", but it looks like shit, so it just makes me more depressed and reminds me of what i've lost. 

That's comforting to hear, that this actually can decrease or go away! Because you're not only saying it to make me and others feel better/give us hope right?😅 But i'm glad that you got a clear vision back, because the VS is literally breaking my balls. Same with your afterimages, thankfully i don't have that! How long did it take for that to go away for you? What did the experiment with weed result in? And what in gods name drove you to try that again?

I will do my best mate, and that is very true! I have much experience with injuries, so one would quess that i'd be a pro at this by now. But this is different since there's so little research and so many question marks around it, so with an injury i 100% know that it will heal, but with this there's not that guarantee and many seem to be stuck with it for life, and the not knowing is a nightmare of it's own. But i know that acceptance and trying to not think about it is the only way i'll be able to go on while this hopefully do heal, but every part of my body is fighting it and i have such a hard time accepting that something so life ruining have happened because of two shitty puffs of cannabis. I'm not kidding, if i had the ability to vape every drug that can cause this of the face of the earth i would have done it in an instant, because no know should ever have to go through this shit.

Thanks for answering, i appreciate it!

 

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On 4/17/2021 at 4:48 AM, Hall89 said:

Yea, ain't that the truth! But besides going fully or partly blind this is on the top of the worst things that could've happened to me. I'm serious when i say that i would rather have lost both my legs than this because, because the top things that i love doing here in life is working in photoshop and gaming, now i can't do neither, or well, i "can", but it looks like shit, so it just makes me more depressed and reminds me of what i've lost. 

That's comforting to hear, that this actually can decrease or go away! Because you're not only saying it to make me and others feel better/give us hope right?😅 But i'm glad that you got a clear vision back, because the VS is literally breaking my balls. Same with your afterimages, thankfully i don't have that! How long did it take for that to go away for you? What did the experiment with weed result in? And what in gods name drove you to try that again?

I will do my best mate, and that is very true! I have much experience with injuries, so one would quess that i'd be a pro at this by now. But this is different since there's so little research and so many question marks around it, so with an injury i 100% know that it will heal, but with this there's not that guarantee and many seem to be stuck with it for life, and the not knowing is a nightmare of it's own. But i know that acceptance and trying to not think about it is the only way i'll be able to go on while this hopefully do heal, but every part of my body is fighting it and i have such a hard time accepting that something so life ruining have happened because of two shitty puffs of cannabis. I'm not kidding, if i had the ability to vape every drug that can cause this of the face of the earth i would have done it in an instant, because no know should ever have to go through this shit.

Thanks for answering, i appreciate it!

 

The afterimages went away over the course of a few months I believe and no I am not pulling your chain about my symptoms getting better.  They really have and I am extremely grateful for that.  As for the weed, I found myself in an emotional hole about 1.5 months ago with deep depression and high anxiety.  When talking to a therapist, she mentioned that I may have PTSD from various childhood and military events.  I live in a state in the US where medical marijuana is legal and it's pretty easy to get a prescription so I did.  Weed had helped me out of funks in the past and at this point I had been fully sober from all drugs and alcohol for over 2.5 years so I said let's try it.  I ended up eating edibles 4 times over the course of one month.  I think it did something spiritual for me but ultimately it made me realize that at my core I am an addict and if I want to have a happy, successful life I cannot have drugs alcohol in it.  As for the symptoms, like I said for me I have always had some level of visual distortion in the form of trails and undulating surfaces (again I at 15 hits of acid in one night 13 years ago plus many other trips).  The weed seems to have slightly increased the intensity of these visuals and made me feel a little spacey and less sharp.  I believe this will go away with time as it has in the past.  Overall, it was probably a reckless experiment but when one is desperate you get to the point in which you are willing to try anything.  

Hang in there, you'll be okay just give it 6 months and see where you're at then.  I think you have a good shot at a full recovery. 

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On 4/18/2021 at 1:49 PM, cosmiccharlie said:

The afterimages went away over the course of a few months I believe and no I am not pulling your chain about my symptoms getting better.  They really have and I am extremely grateful for that.  As for the weed, I found myself in an emotional hole about 1.5 months ago with deep depression and high anxiety.  When talking to a therapist, she mentioned that I may have PTSD from various childhood and military events.  I live in a state in the US where medical marijuana is legal and it's pretty easy to get a prescription so I did.  Weed had helped me out of funks in the past and at this point I had been fully sober from all drugs and alcohol for over 2.5 years so I said let's try it.  I ended up eating edibles 4 times over the course of one month.  I think it did something spiritual for me but ultimately it made me realize that at my core I am an addict and if I want to have a happy, successful life I cannot have drugs alcohol in it.  As for the symptoms, like I said for me I have always had some level of visual distortion in the form of trails and undulating surfaces (again I at 15 hits of acid in one night 13 years ago plus many other trips).  The weed seems to have slightly increased the intensity of these visuals and made me feel a little spacey and less sharp.  I believe this will go away with time as it has in the past.  Overall, it was probably a reckless experiment but when one is desperate you get to the point in which you are willing to try anything.  

Hang in there, you'll be okay just give it 6 months and see where you're at then.  I think you have a good shot at a full recovery. 

I'm glad to hear mate, it would be a dream come true if just my VS would go away, i really don't want to open my eyes in the morning because the flickering everywhere drives me nuts.

Ok, i hope that it calms down for you again and i'm happy you didn't get your afterimages or VS back! 

I will mate, thanks!

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