Persistent spike and what to do about it / neuro-ophthalmologist?

[yarkadin]

Hey everyone,

I'm into the third week now of a mysterious high spike of my HPPD with three major aggravated symptoms: visual snow, after-images and light sensitivity.  Things are flying around left and right as it seems the threshold of trails has increased, and I'm seeing more glare from lights, especially artificial light, i.e. car and traffic lights.  I've experienced something a bit similar in the years before, since HPPD is often changing in severity (at least for me), but only when I'd have a really bad flu, for example.  This seems on the other hand almost worse than a normal flu or physical exhaustion.  Now it's just full on STUCK.  I have no clue of what brought it on!  Only thing I can think of is that I've been really stressed after my job loss, stressed about the U.S. election (I'm trying to avoid all politics and talk of politics now, don't even ask as I'm certainly not going to go into it in this forum) and that I've been taking Klonopin again in uneven and irregular doses (about 1-2 consecutive times a week, total, i.e. Friday and Saturday, with dosage at maximum 1mg per day, but mostly .5 mg).  I don't take any other drugs.

Has anyone had a problem with taking Klonopin off and on, feeling worse ?  I found at least one post where someone wrote that after skipping Klonopin for a week their symptoms shot back hard.  This is sort of what I'm going through.  Truthfully, the Klonopin may have nothing at all to do with it... for all I know... but the correlation is suspicious since I haven't experienced anything like this in 20 years and I haven't taken Klonopin in 20 years. 

My other question is if anyone has seen a neuro-ophthalmologist and if it was worth your time?  I actually found one not far from me.  I'm curious about how such a specialist might react to this and what advice they may have... chances are they'll have no clue about HPPD, but then again, I would think they will have better knowledge than any of us here on the mechanisms behind these phenomena and what could possibly dampen them. 

Edited November 20, 2024 by yarkadin

[James3524]

22 hours ago, yarkadin said:

Hey everyone,

I'm into the third week now of a mysterious high spike of my HPPD with three major aggravated symptoms: visual snow, after-images and light sensitivity.  Things are flying around left and right as it seems the threshold of trails has increased, and I'm seeing more glare from lights, especially artificial light, i.e. car and traffic lights.  I've experienced something a bit similar in the years before, since HPPD is often changing in severity (at least for me), but only when I'd have a really bad flu, for example.  This seems on the other hand almost worse than a normal flu or physical exhaustion.  Now it's just full on STUCK.  I have no clue of what brought it on!  Only thing I can think of is that I've been really stressed after my job loss, stressed about the U.S. election (I'm trying to avoid all politics and talk of politics now, don't even ask as I'm certainly not going to go into it in this forum) and that I've been taking Klonopin again in uneven and irregular doses (about 1-2 consecutive times a week, total, i.e. Friday and Saturday, with dosage at maximum 1mg per day, but mostly .5 mg).  I don't take any other drugs.

Has anyone had a problem with taking Klonopin off and on, feeling worse ?  I found at least one post where someone wrote that after skipping Klonopin for a week their symptoms shot back hard.  This is sort of what I'm going through.  Truthfully, the Klonopin may have nothing at all to do with it... for all I know... but the correlation is suspicious since I haven't experienced anything like this in 20 years and I haven't taken Klonopin in 20 years. 

My other question is if anyone has seen a neuro-ophthalmologist and if it was worth your time?  I actually found one not far from me.  I'm curious about how such a specialist might react to this and what advice they may have... chances are they'll have no clue about HPPD, but then again, I would think they will have better knowledge than any of us here on the mechanisms behind these phenomena and what could possibly dampen them. 

I've noticed the same thing in my case, particularly the increased glare/halos. It turned out to be caused by an astigmatism that was progressively worsening--a problem with the physical eye, not a neurological issue. 

I don't think the clonazepam has anything to do with it. Your dosing seems too occasional and small to cause issues. Oftentimes, people who experience a rebound phenomenon take benzodiazepines every day, at high doses (at least 1.5 mg+), and for a prolonged period of time. 

Regarding the neuro-ophthalmologist, I visited one, but they weren't of much use, as they couldn't prescribe me any medications. However, I did get a referral from them to a neurologist who could, which was helpful. 

If I remember correctly, you mentioned you were from Pennsylvania on another thread. There is an HPPD specialist based in Philadelphia who may be helpful: 

Dr. Gail Serruya - Philadelphia-based psychiatrist

https://www.perception.foundation/specialists-directory 

https://www.gailserruya.net/

  

Edited November 21, 2024 by James3524

[yarkadin]

James, thank you for your reply. 

I thought of astigmatism but I had an ophthalmologist eye-exam just a few months ago and the doctor claimed nothing was wrong with my eyes (except that I've become short-sighted, which is 100% age related).  Unless this astigmatism occurred in such a short period...?  I know him shining a light in my eyes was painful as hell... could that have caused some damage?   I did check online tests for astigmatism and I didn't see anything wrong.  I'm going to keep my mind open on this and see if I can get a new doc visit scheduled.

I felt absolutely miserable yesterday, some of the worst I've ever felt from HPPD, so I took 1 mg of Clonazepam and I slept pretty tight... I'm feeling better today.  Not sure by how much though... yesterday it literally hurt to look at the screen, while today I'm at the computer for close to three hours and feel alright - a definitely good sign!

Gail Serruya I have heard of...  Thanks for bringing her up.  She may have some insights working with others.  I'll see if she accepts my insurance.  I'm not thrilled that she treats people with ketamine, though, and appears to be a huge advocate of psychedelics. This is from her website:

"

Do you provide other psychedelic treatments, like MDMA and psilocybin?

In our dreams…  But at this point, ketamine is the only legal psychedelic medicine, and we only engage in legal activity. Our hope is that other psychedelic medicines will be legalized in the coming years, as research suggests they are beneficial for a variety of mental health conditions. If and when MDMA and psilocybin are legalized, we hope to offer these treatments. We are also looking into becoming a research site for other psychedelics, which may allow us to provide certain psychedelics, within a research study framework, before legalization."

Edited November 22, 2024 by yarkadin