Looking for actual mitigation of symptoms

[yarkadin]

Hello everybody,
 

I haven't had incentive to write anything on hppdonline for a long, long time but this year in particular, for some reason, certain problems that I have been dealing with for the past 25 years (I was afflicted by this disorder back around 1999) have become worse, esp. the tinnitus and depersonalization.  On occasion I have been checking to see if any new or remarkable discoveries have been made in treatments and I see that the net of potential medications has increased which is a positive thing.

To give you a bit of background, I got this disorder after doing LSD just once, back when the term HPPD wasn't even coined, I think it was tentatively called something like PHPD at the time, and this site didn't exist.  I was in touch with David Kozin (Dave, please write to me if you see this, my email hasn't changed) years back and even had a session with Henry Abraham, who coined HPPD and who "officially" diagnosed me.

I'm putting this post up because I want to have a substantive discussion on relief of symptoms IN THEMSELVES.  I don't want any information on mitigation of psychological issues like depression, anxiety and so forth - which is not to diminish them, I know this is a huge and critical issue for many - but to get information on mitigation/elimination of the SOURCE SYMPTOMS - i.e. palinopsia, after images, visual snow, tinnitus, depersonalization, all of the actual zoo of symptoms tied to the disinhibition at the core of the disorder.  I've read some posts of people taking drug X, write such things like, "I don't even notice the symptoms now" and then a few sentences down, "but the visual snow is the same as it was".  I have no interest in succeeding in duping myself that something that is happening is not happening.

Here's one of the things I've learned over the past 25 years, and also talking to other people who have it: HPPD fluctuates and is not stable.  Actually, this is one of the most frustrating parts about it.  There are days when it is worse, there are days when it is slightly better.  Lately, my tinnitus has not been better.  So I've decided to talk about it here and see what I can do.  Maybe it's unrelated?  Fuck knows... but pumping myself up with some tranquilizer or calming agent to the point where I barely know where or who I am and forget that I have HPPD is not a remedy to a real problem.  Using alcohol or benzodiazepines to temporarily and psychologically pull one's conscious awareness away from a problem is not a remedy. 

Let's have a discussion about people's experiences with drugs that truly, qualitatively, made things better, even if it was temporary...

I remember about 20 years ago Klonopin helped a bit... I distinctly remember (though I could have been fooling myself) the visual snow decreasing... so I got myself a prescription at .5 MG just a few months ago but I'm afraid that it hasn't done anything except loosened me up a bit and eased my anxiety.  Again, important things, but not what I am looking for.  I didn't see ANY abatement of symptoms.  Zero.  Is it too low a dose?  Possible... If anyone had a different story, please let me know.  I would take a higher dose, temporarily, to see what is going on, but I'm not going to take some massive dose on a regular basis of an addictive drug... so I've been taking it on a sporadic basis... maybe once a week.  Has anyone had any luck with the visual snow improving on a higher dose or with more frequent intake?

There are some interesting stories of Lamictal helping, I haven't heard of this drug the last time I was doing research on meds, but then I read a post of someone saying it didn't do anything for them at all... do we have any stories here of people really improving from this drug, not just "feeling" better?

I have taken SSRIs in the LONG past that have done nothing... I'm glad that people are well aware of this now and they are contraindicated for HPPD.

I truly hate that anecdotal evidence is all we have, or mostly what we discuss here.  Abraham put up some interesting empirical studies but they are far and few between.

Alright, sorry for the long ass message.  Hope this finds everyone well and this can be the start of a some solid conversation about improvement of CORE problems at the heart of this disorder.  Thanks for reading.

 

[James3524]

2 hours ago, yarkadin said:

Hello everybody,
 

I haven't had incentive to write anything on hppdonline for a long, long time but this year in particular, for some reason, certain problems that I have been dealing with for the past 25 years (I was afflicted by this disorder back around 1999) have become worse, esp. the tinnitus and depersonalization.  On occasion I have been checking to see if any new or remarkable discoveries have been made in treatments and I see that the net of potential medications has increased which is a positive thing.

To give you a bit of background, I got this disorder after doing LSD just once, back when the term HPPD wasn't even coined, I think it was tentatively called something like PHPD at the time, and this site didn't exist.  I was in touch with David Kozin (Dave, please write to me if you see this, my email hasn't changed) years back and even had a session with Henry Abraham, who coined HPPD and who "officially" diagnosed me.

I'm putting this post up because I want to have a substantive discussion on relief of symptoms IN THEMSELVES.  I don't want any information on mitigation of psychological issues like depression, anxiety and so forth - which is not to diminish them, I know this is a huge and critical issue for many - but to get information on mitigation/elimination of the SOURCE SYMPTOMS - i.e. palinopsia, after images, visual snow, tinnitus, depersonalization, all of the actual zoo of symptoms tied to the disinhibition at the core of the disorder.  I've read some posts of people taking drug X, write such things like, "I don't even notice the symptoms now" and then a few sentences down, "but the visual snow is the same as it was".  I have no interest in succeeding in duping myself that something that is happening is not happening.

Here's one of the things I've learned over the past 25 years, and also talking to other people who have it: HPPD fluctuates and is not stable.  Actually, this is one of the most frustrating parts about it.  There are days when it is worse, there are days when it is slightly better.  Lately, my tinnitus has not been better.  So I've decided to talk about it here and see what I can do.  Maybe it's unrelated?  Fuck knows... but pumping myself up with some tranquilizer or calming agent to the point where I barely know where or who I am and forget that I have HPPD is not a remedy to a real problem.  Using alcohol or benzodiazepines to temporarily and psychologically pull one's conscious awareness away from a problem is not a remedy. 

Let's have a discussion about people's experiences with drugs that truly, qualitatively, made things better, even if it was temporary...

I remember about 20 years ago Klonopin helped a bit... I distinctly remember (though I could have been fooling myself) the visual snow decreasing... so I got myself a prescription at .5 MG just a few months ago but I'm afraid that it hasn't done anything except loosened me up a bit and eased my anxiety.  Again, important things, but not what I am looking for.  I didn't see ANY abatement of symptoms.  Zero.  Is it too low a dose?  Possible... If anyone had a different story, please let me know.  I would take a higher dose, temporarily, to see what is going on, but I'm not going to take some massive dose on a regular basis of an addictive drug... so I've been taking it on a sporadic basis... maybe once a week.  Has anyone had any luck with the visual snow improving on a higher dose or with more frequent intake?

There are some interesting stories of Lamictal helping, I haven't heard of this drug the last time I was doing research on meds, but then I read a post of someone saying it didn't do anything for them at all... do we have any stories here of people really improving from this drug, not just "feeling" better?

I have taken SSRIs in the LONG past that have done nothing... I'm glad that people are well aware of this now and they are contraindicated for HPPD.

I truly hate that anecdotal evidence is all we have, or mostly what we discuss here.  Abraham put up some interesting empirical studies but they are far and few between.

Alright, sorry for the long ass message.  Hope this finds everyone well and this can be the start of a some solid conversation about improvement of CORE problems at the heart of this disorder.  Thanks for reading.

 

There is some real research going on for Visual Snow Syndrome, which (from what I’ve heard), shares the same etiology as HPPD for the shared symptoms. Most research points to HPPD/VSS being a condition of damage/destruction of serotonergic inhibitory interneurons with GABA outputs. 

A VSS researcher named Dr. Christoph Schankin is currently doing a study using EEG signatures to test a type of magnetic brain stimulation called trans-alternating direct current stimulation (tACS). It seems very promising and the results of the study should be published by the end of this year. 

An HPPD patient underwent a different form of brain stimulation called repetitive trans-cranial magnetic simulation, and the results were very promising: https://www.brainstimjrnl.com/article/S1935-861X(23)01980-0/fulltext

The idea is that targeting a certain brain region with magnetic stimulation, overtime, creates a long term inhibitory effect.

[James3524]

Also, you can try levetiracetam (keppra). 

[Jay1]

Your clonazepam dose was likely too low to see visual improvements. 

I get very obvious, very real visual improvements from 1.5mg onwards. It is the only thing that works for my HPPD and thankfully helps the anxiety and dpdr as well as the visuals. It's a magic bullet, for me. Of course, you have to understand the risks of any benzo, especially at higher doses.  

[brake]

28 minutes ago, Jay1 said:

Your clonazepam dose was likely too low to see visual improvements. 

I get very obvious, very real visual improvements from 1.5mg onwards. It is the only thing that works for my HPPD and thankfully helps the anxiety and dpdr as well as the visuals. It's a magic bullet, for me. Of course, you have to understand the risks of any benzo, especially at higher doses.  

Yes high doses are effective at temporarily improving visual symptoms. At 2 milligrams of Xanax I was in a mini vacation away from HPPD lol. Low doses are good enough to "loosen" you up like Yarkadin said. 

Edited July 18 by brake

[yarkadin]

I really appreciate the responses here.  I suspected that the dose I was given was too low for any improvement... but I've grown very paranoid with medication and don't want to trade more negatives against a few positives... I definitely have no interest in regularly taking clonazepam.  I could try gulping down 3 or 4 .5mg tablets and see what happens... I suppose I won't become an addict overnight?  Jay, are you taking 1.5mg on a regular basis or just when needed?

RE: James's posts, have you (or anyone in the thread) taken Keppra and seen actual improvements?  What are the downsides? 

The Trans-alternating direct current stimulation experiment sounds quite interesting but the study has no control group... and a sample size of one   It would be great to chase that person down from the study and interrogate him/her mercilessly... but that's not going to happen.  I am going to guess that most insurance, at least in the USA where I live, does not cover this treatment either...?  It could cost a fortune, I'm going to guess.  20 years back I had a woman trying to convince me that biofeedback will almost definitely improve my condition (without knowing anything about my condition).  It was very expensive, and I wasn't going to make the gamble on something with zero evidence.  It was a gamble for me, a guaranteed profit for her.

Edited July 18 by yarkadin

[Jay1]

10 hours ago, yarkadin said:

Jay, are you taking 1.5mg on a regular basis or just when needed?

I rarely take 1.5mg any more,as i've come to realise the visuals don't overly bother me if I deal with the anxiety/dpdr, which I can get relief from with 0.75mg or 1mg for more stressful events. I do occasionally take 1.5mg if I am going to, say, a wedding. 

I generally take 0.75mg on friday/saturday/sunday, then 4 days off.. rinse and repeat. I then have occasional 2 week breaks to make sure my body is not becoming tolerant. This isn't a strict regime, sometimes I have more, sometimes less... But always a 4 day break and, if I do take more (eg, every day on a week long vacation) I then have my 2 week detox.

This has worked now for 15 years or so with no sign of tolerance or withdrawals. Having a little weekend break where I can socialise and have a bit of fun has really changed the quality of my life. 

[Jay1]

btw - If you smash back 3-4mg, you will just sleep all day and not remember anything much when you were awake! 

I would try 1mg and go up by 0.25mg each time until you find your sweet spot (even 1mg does bring me some reduction in visual symptoms).

[yarkadin]

That's an intriguing regimen that you have... I will take that advice into account, thank you.  Actually what I wrote in my last reply is that I would considering taking 3 or 4 half (0.5) milligram tablets, so either 1.5 or 2mg total... but what you wrote is very curious to me, you say "the visuals don't overly bother me if I deal with the anxiety/dpdr, which I can get relief from with 0.75mg or 1mg for more stressful events" - you are saying that you get relief from the anxiety/dpdr at these dosages, but not the visuals?  The visuals only are impacted at 1.5mg or more per what you said earlier?  I'm sorry for being very anal about this but this distinction is quite important.

I've certainly considered, as probably everyone here, whether a reduction in anxiety and stress would have some direct line of causative impact on the visual symptomology, but from my experience if there is such a factor it would be minimal and not, how should I put it, under our control no matter what psychological circumstances are in play.  I could be mistaken.  I think the feedback loop is more strongly along the lines of Visuals > Anxiety rather than Anxiety > Visuals.

[yarkadin]

Sorry I just caught that you wrote 1mg brings reduction in visual symptoms... okay... I will try some tiny experiments (when I am not working or need to drive any place), and see how it goes

[yarkadin]

Also, speaking about GABA and stress, in another forum today I saw a post about this - is it BS or really works?  Anyone have any comment?  If it brings the visuals down some percentage points it seems like a pretty light and harmless investment...

https://www.amazon.com/OLLY-Goodbye-Stress-L-Theanine-Supplement/dp/B0BMPNSNHD?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&smid=ATVPDKIKX0DER&th=1

Edited July 19 by yarkadin

[Jay1]

16 hours ago, yarkadin said:

Actually what I wrote in my last reply is that I would considering taking 3 or 4 half (0.5) milligram tablets, so either 1.5 or 2mg total... 

ah yea!... i did think that was a big leap from 0.5mg to 4mg , haha

[Jay1]

16 hours ago, yarkadin said:

I've certainly considered, as probably everyone here, whether a reduction in anxiety and stress would have some direct line of causative impact on the visual symptomology, but from my experience if there is such a factor it would be minimal and not, how should I put it, under our control no matter what psychological circumstances are in play.  I could be mistaken.  I think the feedback loop is more strongly along the lines of Visuals > Anxiety rather than Anxiety > Visuals.

Yea, i've thought about this a lot too...

I can get my anxiety down to a very low level if I am at home, alone, watching a film or playing music... My visuals and DPDR stay the same though, so I don't think anxiety directly affects the visuals. 

Likewise, with alcohol, I can get both my anxiety and dpdr down quite a lot, but my visuals stay the same.