I am starting to genuinely believe suicide is my only way out

[dom]

Sorry to be dramatic but I am struggling so much. 
 

I’ve had hppd for over 4 years, I completely recovered after the first two with visual snow, light sensitivity and tinnitus being my only symptoms. I then forgot about hppd until I went to Glastonbury (a festival) a year ago and stupidly sniffed a drug again which brought back all my symptoms and also increased after images. After a year of recovery I managed to get these symptoms under control and started to forget again.

 

then 2 months ago I had a really bad cold and I took some cold medicine and it brought my symptoms back ten fold, the worst they have ever been - after images on everything, can’t watch TV anymore because every time the scene changes the after images are still on the screen for a split second so it constantly reminds me, anxiety is absolutely destroying me I can barely think. I then went on holiday for a week with my girlfriend and I hoped after waiting 2 months and trying keto, fasting, exercise, etc I would be okay to drink alcohol as it has never affected my symptoms before. Until I tried it on holiday and got instant trails on everything for the first time - I had managed to avoid this before and now it won’t go away. Everyday I have panic attacks, I throw up every morning and genuinely hate the way I feel. Nothing I tried the previous two times to get better is working. All of this has culminated in my girlfriend leaving me and me signing off sick from work as I am just not myself.  
 

I went to the GP today, no surprise there that was a complete waste of time, referred to neurology where there’s a year long waiting list to be seen.

can anyone recommend a uk based doc?
 

someone please give me some advice, is there any hope this will get better - I feel like my head is going to explode. How can cold medicine turn a rational human being and completely destroy his life and effectively turn him into a vegetable afraid of everything that moves.

 

Sorry for the rant but I honestly feel the only way to make myself feel better would be to be dead. 

[brake]

5 hours ago, dom said:

Sorry to be dramatic but I am struggling so much. 
 

I’ve had hppd for over 4 years, I completely recovered after the first two with visual snow, light sensitivity and tinnitus being my only symptoms. I then forgot about hppd until I went to Glastonbury (a festival) a year ago and stupidly sniffed a drug again which brought back all my symptoms and also increased after images. After a year of recovery I managed to get these symptoms under control and started to forget again.

 

then 2 months ago I had a really bad cold and I took some cold medicine and it brought my symptoms back ten fold, the worst they have ever been - after images on everything, can’t watch TV anymore because every time the scene changes the after images are still on the screen for a split second so it constantly reminds me, anxiety is absolutely destroying me I can barely think. I then went on holiday for a week with my girlfriend and I hoped after waiting 2 months and trying keto, fasting, exercise, etc I would be okay to drink alcohol as it has never affected my symptoms before. Until I tried it on holiday and got instant trails on everything for the first time - I had managed to avoid this before and now it won’t go away. Everyday I have panic attacks, I throw up every morning and genuinely hate the way I feel. Nothing I tried the previous two times to get better is working. All of this has culminated in my girlfriend leaving me and me signing off sick from work as I am just not myself.  
 

I went to the GP today, no surprise there that was a complete waste of time, referred to neurology where there’s a year long waiting list to be seen.

can anyone recommend a uk based doc?
 

someone please give me some advice, is there any hope this will get better - I feel like my head is going to explode. How can cold medicine turn a rational human being and completely destroy his life and effectively turn him into a vegetable afraid of everything that moves.

 

Sorry for the rant but I honestly feel the only way to make myself feel better would be to be dead. 

I stay away from Theraflu, coffee, weed and any drugs that are not FDA approved completely. For some reason other OTC medicines don't affect me bad but Theraflu does. It's been almost 12 years and yesterday I didn't get enough sleep and got too much caffeine from other sources and took 0.75 of Klonopin and I still had the floor moving and trippy stuff.     -_____-

I called one of the neurologists from the visual snow initiative website and the wait time was until 2025 as well -___- although I was cleared by a random neurologist like years ago when I first got it

I'm 34 and I was sure I'd have kids by now, it was a very important goal for me but the worldwide population is plummeting nowadays and some girls are just very difficult nowadays so try not to sweat it! My parents thought they would have grandkids but I'm sure nowadays that kind of thinking makes you a rapist or something lmfao.

This sucks dude but you do find little things that help throughout your lifetime. Trial and error brother.

Edited September 12 by brake

[yarkadin]

5 hours ago, dom said:

Sorry to be dramatic but I am struggling so much.

May I ask what cold medicine you tried?  I think all of us should be aware of it and its ingredients if it has that extreme an impact.

It sounds like you had your ups and downs over your 4 years and you are in a rough period.  You need something to calm you down and allow you to ride through this difficult period.  Have you tried any benzos?

It's really interesting to me what you say about visual snow, light sensitivity and tinnitus being your only symptoms at first... and then later the after images coming into play.  That was sort of what happened to me... but in my case there wasn't anything that would have triggered it... except maybe something like the Paxil I was taking on a psychiatrist's recommendation.  It was a dark period of my life and I don't remember a lot, some of the chronology is even mixed up in my head.  But it's possible when my after images started (and they did start only later) I was on some antidepressive or some other drug.  I'm not convinced it would have never happened since I know for a fact my vision was damaged already, before this happened. 

I don't want to diminish what you are experiencing, many of us have experienced traumas and PTSD from this... but I think the psychological problems can all be remedied and WILL get better.  Some people claim that their visual problems also improve.  I've gone through weeks and months not thinking about it.  I joined this site a few months ago again because my tinnitus and anxiety suddenly got worse.  My vision is more or less the same though as it has been for years (25 years!), so rest assured that it does not have to get worse!

 

[Spartan]

13 hours ago, dom said:

Sorry to be dramatic but I am struggling so much. 
 

I’ve had hppd for over 4 years, I completely recovered after the first two with visual snow, light sensitivity and tinnitus being my only symptoms. I then forgot about hppd until I went to Glastonbury (a festival) a year ago and stupidly sniffed a drug again which brought back all my symptoms and also increased after images. After a year of recovery I managed to get these symptoms under control and started to forget again.

 

then 2 months ago I had a really bad cold and I took some cold medicine and it brought my symptoms back ten fold, the worst they have ever been - after images on everything, can’t watch TV anymore because every time the scene changes the after images are still on the screen for a split second so it constantly reminds me, anxiety is absolutely destroying me I can barely think. I then went on holiday for a week with my girlfriend and I hoped after waiting 2 months and trying keto, fasting, exercise, etc I would be okay to drink alcohol as it has never affected my symptoms before. Until I tried it on holiday and got instant trails on everything for the first time - I had managed to avoid this before and now it won’t go away. Everyday I have panic attacks, I throw up every morning and genuinely hate the way I feel. Nothing I tried the previous two times to get better is working. All of this has culminated in my girlfriend leaving me and me signing off sick from work as I am just not myself.  
 

I went to the GP today, no surprise there that was a complete waste of time, referred to neurology where there’s a year long waiting list to be seen.

can anyone recommend a uk based doc?
 

someone please give me some advice, is there any hope this will get better - I feel like my head is going to explode. How can cold medicine turn a rational human being and completely destroy his life and effectively turn him into a vegetable afraid of everything that moves.

 

Sorry for the rant but I honestly feel the only way to make myself feel better would be to be dead. 

I hear you brother 

Hang in there please! 

You will see brighter days. Life and especially your life is precious!

Immediately contact 

Professor Dominic Ffytche UK based 

He is a HPPD specialist and has contributed to advanced studies. 

Will track him down for you and post details bellow. 

The darker the sky the brighter the stars will shine brother, you will pass through this. Please weather the storm. 

Please feel free to reach out to DM me at any time if I can support in any way shape or form. 

 

Edited September 13 by Spartan

[Spartan]

Please find the link here 

Request urgent assistance.

Explain its severe HPPD as he will prioritise this. 

 

https://www.kcl.ac.uk/people/dominic-ffytche

 

I am here for you 24 7 brother! 

 

Edited September 13 by Spartan

[dom]

9 hours ago, yarkadin said:

May I ask what cold medicine you tried?  I think all of us should be aware of it and its ingredients if it has that extreme an impact.

It sounds like you had your ups and downs over your 4 years and you are in a rough period.  You need something to calm you down and allow you to ride through this difficult period.  Have you tried any benzos?

It's really interesting to me what you say about visual snow, light sensitivity and tinnitus being your only symptoms at first... and then later the after images coming into play.  That was sort of what happened to me... but in my case there wasn't anything that would have triggered it... except maybe something like the Paxil I was taking on a psychiatrist's recommendation.  It was a dark period of my life and I don't remember a lot, some of the chronology is even mixed up in my head.  But it's possible when my after images started (and they did start only later) I was on some antidepressive or some other drug.  I'm not convinced it would have never happened since I know for a fact my vision was damaged already, before this happened. 

I don't want to diminish what you are experiencing, many of us have experienced traumas and PTSD from this... but I think the psychological problems can all be remedied and WILL get better.  Some people claim that their visual problems also improve.  I've gone through weeks and months not thinking about it.  I joined this site a few months ago again because my tinnitus and anxiety suddenly got worse.  My vision is more or less the same though as it has been for years (25 years!), so rest assured that it does not have to get worse!

 

The medicine was Sudafed, it seems a couple of people have experienced something similar 

 

 

such as this guy a couple years ago, almost identical story to me. What a fucking bummer, I wonder if he made it. 
 

 

regards to medication- with how bad it’s gotten this is the first time I have considered medication but I have no idea what road to go down. I have heard when you come off benzos everything gets even worse so I definitely don’t want that I would rather just die. But I have heard that Lamotrigine hasn’t affected people negatively and has helped sometimes? Can anyone attest to this? 

[dom]

1 hour ago, Spartan said:

Please find the link here 

Request urgent assistance.

Explain its severe HPPD as he will prioritise this. 

 

https://www.kcl.ac.uk/people/dominic-ffytche

 

I am here for you 24 7 brother! 

 

Thank you for this I will send him an email but I believe he might be retired as I tried to contact his clinic previously which has since shut down

[dom]

11 hours ago, brake said:

I stay away from Theraflu, coffee, weed and any drugs that are not FDA approved completely. For some reason other OTC medicines don't affect me bad but Theraflu does. It's been almost 12 years and yesterday I didn't get enough sleep and got too much caffeine from other sources and took 0.75 of Klonopin and I still had the floor moving and trippy stuff.     -_____-

I called one of the neurologists from the visual snow initiative website and the wait time was until 2025 as well -___- although I was cleared by a random neurologist like years ago when I first got it

I'm 34 and I was sure I'd have kids by now, it was a very important goal for me but the worldwide population is plummeting nowadays and some girls are just very difficult nowadays so try not to sweat it! My parents thought they would have grandkids but I'm sure nowadays that kind of thinking makes you a rapist or something lmfao.

This sucks dude but you do find little things that help throughout your lifetime. Trial and error brother.

Thank you, which neurologist did you contact, was it a uk based one? 

[Jay1]

You have managed to get control of this twice before... I'm sure you will get there again this time. Just try to de-stress your life as much as possible, even if that means locking yourself away from the world for a while and just watching films, gaming... whatever relaxes you a bit. 

The UK is pretty bad for mental health, no doubt... Could you find a way to go private? Also, if you say you are suicidal, you may be able to fast track your case... That's the harsh reality of it. 

Stay strong mate, you've got through these rough patches before and can do again. DM me any time you need support. 

PS - I'm also a Glastonbury casualty, LSD microdot in 1995 snapped my mind

[Jay1]

41 minutes ago, dom said:

I have heard when you come off benzos everything gets even worse so I definitely don’t want that I would rather just die.

Remember that you don't have to take it every day. I use it a few times a week to enjoy social events, get through stressful times, have more relaxed vacations etc. I generally do 3 days on, 4 days off... 2 weeks cold turkey every few months. Done this routine for 15 years now with no signs of withdrawal, tolerance or addiction.

[Spartan]

2 hours ago, dom said:

Thank you for this I will send him an email but I believe he might be retired as I tried to contact his clinic previously which has since shut down

You are very welcome. 

I know he is at king's college. Tho has multiple clinics.

I don't believe he is retired as his recent contributions to hppd protocols etc 

Possibly give this email a try.

I have been in direct contact with him using this email 

dominic.ffytche@kcl.ac.uk

 

Wishing you the very best !! My thoughts are with you.

Edited September 13 by Spartan

[dom]

5 hours ago, Jay1 said:

You have managed to get control of this twice before... I'm sure you will get there again this time. Just try to de-stress your life as much as possible, even if that means locking yourself away from the world for a while and just watching films, gaming... whatever relaxes you a bit. 

The UK is pretty bad for mental health, no doubt... Could you find a way to go private? Also, if you say you are suicidal, you may be able to fast track your case... That's the harsh reality of it. 

Stay strong mate, you've got through these rough patches before and can do again. DM me any time you need support. 

PS - I'm also a Glastonbury casualty, LSD microdot in 1995 snapped my mind

Thanks jay I’ve already started seeing a therapist etc but I’m honestly so lost on what route to go down medically even with private healthcare which I will be doing due to the state of the NHS. 
 

Do you have any experience of Lamotrigine by anychance? 

[dom]

3 hours ago, Spartan said:

You are very welcome. 

I know he is at king's college. Tho has multiple clinics.

I don't believe he is retired as his recent contributions to hppd protocols etc 

Possibly give this email a try.

I have been in direct contact with him using this email 

dominic.ffytche@kcl.ac.uk

 

Wishing you the very best !! My thoughts are with you.

I’ve sent him an email on that hopefully he can come back to me with a suggestion of someone I can speak to.

[yarkadin]

1 hour ago, dom said:

Thanks jay I’ve already started seeing a therapist etc but I’m honestly so lost on what route to go down medically even with private healthcare which I will be doing due to the state of the NHS.

Do you have any experience of Lamotrigine by anychance? 

I'll second what Jay said above.  His advice really put me in the right direction personally... as I also am afraid of addiction.  So I got the psychiatrist I worked with to prescribe me Klonopin on an "as needed" basis.  Perhaps it's not the best route to cut the visual problems down persistently, but it does help with stress and in your case, panic.  It's what I've been doing for a few months now with absolutely no issues.  Lamictal/Lamotrigine gets mixed results here.  It may work for you but it seems to have bigger side effects than Klonopin (taken irregularly).

Hang in there, my friend!

[Jay1]

1 hour ago, dom said:

Thanks jay I’ve already started seeing a therapist etc but I’m honestly so lost on what route to go down medically even with private healthcare which I will be doing due to the state of the NHS. 
 

Do you have any experience of Lamotrigine by anychance? 

Yea, i tired it for about 6 months, sadly did nothing for me... But everyone is different, so worth a try.

Literally the only thing that works for me is benzodiazepines. That's why I tread carefully with my clonazepam regime.... I've found something that actually works, so want to be able to have this relief for the rest of my life. 

(note to anyone who takes them every day... please know I'm never looking down on your choices, we all do what we gotta do!). 

[brake]

6 hours ago, dom said:

Thank you, which neurologist did you contact, was it a uk based one? 

No I was only seeing doctors in Florida and New York. They basically test your reflexes, vision and hearing. I had no problem with sleeping then so everything seemed to be alright. I passed all of those basic neurologic tests. Now I do have more sleeping problems.

[dom]

19 minutes ago, Jay1 said:

Yea, i tired it for about 6 months, sadly did nothing for me... But everyone is different, so worth a try.

Literally the only thing that works for me is benzodiazepines. That's why I tread carefully with my clonazepam regime.... I've found something that actually works, so want to be able to have this relief for the rest of my life. 

(note to anyone who takes them every day... please know I'm never looking down on your choices, we all do what we gotta do!). 

Jay as your uk based, what kind of doctor started prescribing stuff for you? My GP says he can only prescribe me SSRI’s which I think make things worse so I told him no thanks.

[dom]

21 minutes ago, yarkadin said:

I'll second what Jay said above.  His advice really put me in the right direction personally... as I also am afraid of addiction.  So I got the psychiatrist I worked with to prescribe me Klonopin on an "as needed" basis.  Perhaps it's not the best route to cut the visual problems down persistently, but it does help with stress and in your case, panic.  It's what I've been doing for a few months now with absolutely no issues.  Lamictal/Lamotrigine gets mixed results here.  It may work for you but it seems to have bigger side effects than Klonopin (taken irregularly).

Hang in there, my friend!

Thank you buddy, I’ll take a look into klonopin too then. As I agree the complete state of panic I’m in that im just completely unable to get out of no matter what I do this time

[yarkadin]

The active ingredient in Sudafed is Pseudoephedrine hydrochloride.  Do any of you guys with a chemical knowledge know any more about this?  What is it about this that may have caused the bad reaction in Dom?

I take Nyquil with no problems at all... also Levocetirizine for my allergies.  Either of those have no relation to Pseudoephedrine hydrochloride it seems.

It seems it should be really important to notify everyone in the community to avoid this drug if it has such a deleterious impact, but I'm curious as to WHY.

[AF44]

19 minutes ago, yarkadin said:

The active ingredient in Sudafed is Pseudoephedrine hydrochloride.  Do any of you guys with a chemical knowledge know any more about this?  What is it about this that may have caused the bad reaction in Dom?

I take Nyquil with no problems at all... also Levocetirizine for my allergies.  Either of those have no relation to Pseudoephedrine hydrochloride it seems.

It seems it should be really important to notify everyone in the community to avoid this drug if it has such a deleterious impact, but I'm curious as to WHY.

I always wondered why as well. Weirdly enough, (before being on any sort of benzo or other psych med…or any meds at all in general) I was able to take Sudafed without an issue. I was pregnant with my first (so about 23 years ago) and the only cold medication pregnant women were allowed to take was Sudafed. But then years later if I tried NyQuil or any other medicine for a cold, it wrecked me Now if I get a cold I’d rather die than take anything for it. I also heard Theraflu is awful for HPPD. Who knows the whys.

[AF44]

23 hours ago, dom said:

Sorry to be dramatic but I am struggling so much. 
 

I’ve had hppd for over 4 years, I completely recovered after the first two with visual snow, light sensitivity and tinnitus being my only symptoms. I then forgot about hppd until I went to Glastonbury (a festival) a year ago and stupidly sniffed a drug again which brought back all my symptoms and also increased after images. After a year of recovery I managed to get these symptoms under control and started to forget again.

 

then 2 months ago I had a really bad cold and I took some cold medicine and it brought my symptoms back ten fold, the worst they have ever been - after images on everything, can’t watch TV anymore because every time the scene changes the after images are still on the screen for a split second so it constantly reminds me, anxiety is absolutely destroying me I can barely think. I then went on holiday for a week with my girlfriend and I hoped after waiting 2 months and trying keto, fasting, exercise, etc I would be okay to drink alcohol as it has never affected my symptoms before. Until I tried it on holiday and got instant trails on everything for the first time - I had managed to avoid this before and now it won’t go away. Everyday I have panic attacks, I throw up every morning and genuinely hate the way I feel. Nothing I tried the previous two times to get better is working. All of this has culminated in my girlfriend leaving me and me signing off sick from work as I am just not myself.  
 

I went to the GP today, no surprise there that was a complete waste of time, referred to neurology where there’s a year long waiting list to be seen.

can anyone recommend a uk based doc?
 

someone please give me some advice, is there any hope this will get better - I feel like my head is going to explode. How can cold medicine turn a rational human being and completely destroy his life and effectively turn him into a vegetable afraid of everything that moves.

 

Sorry for the rant but I honestly feel the only way to make myself feel better would be to be dead. 

I’m so, so sorry to hear about all you are going through! There were times (especially when I first got HPPD) that I thought I would be better off dead, but was too stubborn to do anything like that lol. Cold medications are awful, I’m not surprised you had a reaction to it. I think it caused a terrible flare but that flare will go away. The only thing that worked for me was Klonopin. I like Jay’s advice about how to take it. I take it everyday and am always terrified that one day I won’t be able to have it and I’ll lose my damn mind. So Jay’s way of doing it is really smart. I hope you start feeling better soon. I promise it will get better, even if it doesn’t seem like it right now.

[dom]

27 minutes ago, AF44 said:

I’m so, so sorry to hear about all you are going through! There were times (especially when I first got HPPD) that I thought I would be better off dead, but was too stubborn to do anything like that lol. Cold medications are awful, I’m not surprised you had a reaction to it. I think it caused a terrible flare but that flare will go away. The only thing that worked for me was Klonopin. I like Jay’s advice about how to take it. I take it everyday and am always terrified that one day I won’t be able to have it and I’ll lose my damn mind. So Jay’s way of doing it is really smart. I hope you start feeling better soon. I promise it will get better, even if it doesn’t seem like it right now.

Thank you for your kind words and also thank you to all of you who have commented. I hate feeling like this.
Sorry to come and moan but you know when you reach a point that’s your limit and then it gets worse, I just have this awful feeling that all my hope is gone. 

[cosmiccharlie]

Hang in there my friend, I'm sure things are scary but know that you're not alone and many of us have been exactly where you are now.  Your situation will change eventually given enough time.  Try not to obsess over the condition and at the same time try not to avoid it.  The visuals, the feelings and sensations are what they are.  You did not ask for this.  For me, once I got a handle on the cycle of anxiety that HPPD creates I started feeling better.  What I mean by this is not avoiding and not judging the experience but allowing it to unfold as it is and comforting myself because I am a suffering human being caught in a difficult situation and I still deserve to be loved.  So what if I see the walls breathing and colors flashing over the face of my boss as I discuss my work with him; this happened to me a few hours ago and today that no longer disturbs me.  It's just part of my experience of being alive and I don't hate it.  We can give this condition so much power over us, but we have the ability to take it back.  DM me if you'd like to chat on WhatsApp.  
 

[James3524]

1 hour ago, yarkadin said:

The active ingredient in Sudafed is Pseudoephedrine hydrochloride.  Do any of you guys with a chemical knowledge know any more about this?  What is it about this that may have caused the bad reaction in Dom?

I take Nyquil with no problems at all... also Levocetirizine for my allergies.  Either of those have no relation to Pseudoephedrine hydrochloride it seems.

It seems it should be really important to notify everyone in the community to avoid this drug if it has such a deleterious impact, but I'm curious as to WHY.

Its primary mechanism of action is agonizing alpha-1 adrenergic receptors, which causes blood vessel constriction, reduces blood flow, and can help relieve nasal congestion. Pseudoephedrine mimics the effects of the sympathetic nervous system, and can have a downstream effect on other neurotransmitters, like increased release of norepinephrine/noradrenaline. I would guess Sudafed caused some downstream effects on norepinephrine, and that made his HPPD worse. The same thing happened to me with methlyphenidate, which is a norepinephrine reuptake inhibitor used for ADHD. Anything that interacts with serotonin or norepinephrine should be avoided in patients with HPPD, IMO.

I'm honestly surprised it hurt Dom that much, though. But, I think he'll recover in time. 

Edited September 13 by James3524

[James3524]

1 hour ago, yarkadin said:

The active ingredient in Sudafed is Pseudoephedrine hydrochloride.  Do any of you guys with a chemical knowledge know any more about this?  What is it about this that may have caused the bad reaction in Dom?

I take Nyquil with no problems at all... also Levocetirizine for my allergies.  Either of those have no relation to Pseudoephedrine hydrochloride it seems.

It seems it should be really important to notify everyone in the community to avoid this drug if it has such a deleterious impact, but I'm curious as to WHY.

Be careful not to take too much NyQuil (dextromethorphan). It is an NMDA antagonist, similar to ketamine, and can cause HPPD, albeit rarely. I'm sure its fine at regular doses.