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sami

HPPD or VSS? Does it even matter? My story.

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So I guess it was finally time for me to register and introduce myself. 41 yrs old, male.

Don't really know where to start, but I suspect I have HPPD, but it could also be Visual Snow Syndrome, since there is no clear indication on what has triggered my issues - there are so many different things it could be. I am becoming more and more depressed and worried about my condition, and would just appreciate your thoughts on what you think is going on. So here is my (long) story:

I developed PTSD when I was a child because of several years of sexual abuse. I've had enormous issues with anxiety, panic attacks and depressive periods because of that my whole life.

First time I was medicates was in my early 20s, with anti-depressants and benzodiazepines. 11 years ago I got neuroborreliosis with my half face going numb. After being treated with heavy antibiotics everything seemed fine but about a year later I developed some bad nerve pain in my arms and feet after a flue. I got zero help from the health care system so about a year later I started with cannabis against the pain, and it became a bliss. My pain started to go away and the more I smoked the less pain I had. 

Unfortunately all the issues with pain affected my mental health extremely negatively, having difficulties performing my job, which led to fatigue syndrome, extreme anxiety and huge amounts of stress. Until then I had never done any other drugs than cannabis, alcohol and pharmaceuticals, like benzo. 

6 years ago I started with Effexor and Mirtazapine which seemed to help me with my insomnia and anxiety, slightly at least. I also had Benzos, and Zopiclone and other sleeping pills on and off.

4 years ago, I had returned to work but too early. Still had issues with fatigue and bad stress, and had started to smoke cannabis daily. I also got in touch with other drugs: MDMA, speed and later on shrooms, DOB, LSD, Ketamine. I was basically going from one drug to another, trying to find something that would make me feel better. At the same time I was also on my anti-depressants but I was in some sort of desperate mode, not caring about the risks, just looking for some sort of relief. I also did a lot of benzo to deal with downs from MDMA and speed, which is why I turned to psychedelics instead. This was during a period of 1.5 yrs, until I realized I was doing just worse and worse, so I stopped basically all drugs except cannabis, about 2.5 yrs ago.

At that time I was unable to perform at work, anxiety, stress, fatigue, I lost my best friends and got a depression, that kept on getting worse, until I started to become suicidal. I smoked more and more weed but did nothing else except for some ketamine and shrooms once on my birthday 1.5 year ago. 

After that I pursued professional help. My new doctor and therapists suspected that I had bipolar disorder, so I was taken off Effexor and put on Lamictal. And that's when I noticed some changes in my visual perception, about 3-4 months into starting with Lamictal. When it was dark I had started to notice some noise, but since it wasn't that bad I just thought it was related to my new medication.

At the same time I did one evening get a visit from the police, as a neighbor had informed them about the smell of cannabis from my appartment. They found loads of cannabis, and some minor amounts of speed and ketamine in some old bags. My depression had just started to get better, I had less suicidal thoughts and suddenly started to have some good days during my weeks but my stress levels went up the roof because of the incident with police. Trial was set for fall and it completely occupied my mind. I therefore also stopped smoking weed. I got Zopiclone from my doctor for sleep, which I knew I had to be careful with but it was the only way I got some sleep and was able to deal with the anxiety.

In August last year I started to notice the noise during nights even more. I also had a case of diplopia/ghosting at the same time, and had started to get pattern glare on certain surfaces. Had no idea what was going on but if course I was suspecting that it might have had something to with either my medications or all the psychedelics I had done a couple of years ago. Still, I had the trial coming up so I just basically tried to not think about it, not let it worry me too. Now I was eating Zopiclone 5 nights a week.

In November the trial was over, no jail time but one year parole. Finally, I thought, I could start focusing on doing better. I was on my meds but zero other drugs. But then the next bad news came, which was the I might have become type 2 diabetic. That once again put my stress levels through the roof. And I ate even more Zopiclone to be able to sleep. 

Now my visual problems got even worse. My tinnitus flared up too. I had also started to get hallucinations in the mornings when I woke early and I had not had proper sleep. Since I was doing no other drugs than my meds I started suspecting that the Zopiclone was the reason, so I thought the best decision is to just stop with them, go cold turkey. And boom, a week later I started seeing visual snow both day and night, I got palinopsia, floaters, photophobia, I got constant diplopia. Panic, anxiety. I went back on Zopiclone and started tapering it off instead. Together with my doctor we also decided to start tapering off Lamictal, since my first symptoms had started when I started eating it. So end of January I was off both Lamictal and Zopiclone. I also quit nicotine. Symptoms did not get much better so I wanted to taper off Mirtazapine too, just to rule out that it wasn't the issue. Only thing that got better was that my morning hallucinations were actually going away.

So end of February I was off Mirtazapine too. Now I started to feel alot of sensations of DP/DR, was unable to focus on TV, games, etc. General anxiety. I knew this could be because of quitting Mirtazapine but I also know it could be related to VS or HPPD.

At this time I had read on everything that people suspect could cause Visual Snow. Medications (check), drugs (check), Lyme disease (check), PTSD/Anxiety/Depression (check), TMJD (check), Panic attacks (check), and on.

At this time I also noticed that when I rubbed my eyes I would see hallucinations, i.e. photopsia. First the visual snow would grow in intensity a lot. Then that would turn into  triangles in a vortex, spiraling.

I went also back to my masseuse and acupuncturer, that has helped me a lot through the years with tense muscles. During my second treatment, he noticed my third vertebra was slightly out of place.  When he was massaging around it, and some places in my neck and head my eye sight started to flash. This was the first time some sort of external stimulus affected my symptoms. He recommended me to go to a chiropractor to get help with the vertebra. So I went middle of March, and the day after my first treatment trying to put the vertebra in place, my photopsia improved by 50 %. Suddenly I could sit in front of my computer late at night which I was unable to do the days before. Was it the treatment? Don't know but at least there seemed to be some correlation. Or maybe it just correlated somehow with me stopping all my meds. No idea. While doing the third treatment at the chiropractor I saw new visual disturbances: this time glowing worms moving around in my eye sight. I only saw the shortly, moments after the treatment. But after those sessions my photophobia had improved by 95 %.

Now it was a month after tapering off Mirtazapine, and I started to notice I had issues with depth perception. Everything felt a bit 2D. I was on vacation and just tired of everything. My visual snow was still getting noticeably worse. My palinopsia was slightly better. My diplopia was terrible. Nothing I did seemed to stop it, so during the vacation I started smoking nicotine again and drink loads of alcohol.

Back from vacation, second week of April, I went off the nicotine again, no alcohol. About a week later I suddenly was feeling a bit better. The DP/DR improved by 80 %. Diplopia seemed to improve or maybe I just got better at ignoring it. My palinopsia was slightly improved since January. Not so many positive afterimages, but still negative. Depth perception improved. I was able to concentrate again. I could watch movies and TV, play games and focus on things. Maybe because of getting rid of the symptoms of quitting Mirtazapine? But started with nicotine again a week later.

Now it's been a month since that. For the past two weeks my visual snow has gotten a lot worse again.  My palinopsia has gotten slightly worse again, and changed character slightly. It's more noisy. My diplopia is better, but also seems more noisy. Got more pattern glare (lines vibrate, guess it has to do with more visual snow). But I've also had hallucinations several mornings in the row now. I see everything from Roman letters to clipart, to like the colored test screen from TVs. When I rub my eyes the visual snow is even more intense than before, it becomes really bright, until I start to see triangular patterns in a vortex. I am thinking maybe it has to do with the nicotine, so going off that again. Now I don't really have any other poison. 

I eat properly and healthy, try to take care of myself. I do keto which supposedly is good for the nervous system. No caffeine, no nicotine (anymore), no meds, no drugs. But still stressed, still anxiety, because of all these issues and difficulty performing my job. 

I try to relax, but it is hard when the feeling I have is I might go blind in the end, since nothing seems to stop the visual snow from getting worse. Blind in the sense tat all I see are visual snow and distorsions. Suicidal thoughts have come back. I try to focus on other things, keep myself busy, but since I already have issues with fatigue I can't really do that all the time either. I get some work done, fortunately I am a freelancer and work with web development, so I have a lot of flexibility. Worries about my economy makes things worse of course. I feel at moments I am about to give up... Don't have a lot of friends left after all I've been through past years (my own fault). Don't have a family, but at least a sister that supports me through this.

So do I have HPPD? Do I have Visual Snow Syndrome? Right now I suspect it is actually HPPD since I've got the hallucinations back. But who knows, right, but any feedback on my conundrum is appreciated. 

Right now I am focusing a lot on my diet. Trying to lower my glutamate, suspecting that I have low GABA production. I well supplement with THC free CBD oils that help me a bit with relaxing, sleep and especially the PTSD. Soon, I might be ready to try some medications again, maybe benzodiazepines, but at the same time, they scare me since they might make things worse. Otherwise, just a lot of hopelessness. It would be one thing if my symptoms would not keep on getting worse, but since they do, it adds new worries constantly. Every day is spent analyzing, is it worse today? At times it feels like I adjust, I feel okay with how it is but every time it gets worse it really kills my motivation on doing things that are good for me. And of course I feel really bad over that I probably have inflicted this on myself, but at the same time I try to not think like that, since done is done, nothing I can change. I can only change what will happen from now on.

Anyway, that's it. Long story. Just looking for some support, thoughts, opinions, advice, whatever really. Just talking about this seems to help. 

 

Edited by Sami
Text became doubled, spelling corrections

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I'd like to add that I've never had any so called flashbacks, never relived the visuals from my trips. I usually never had very intense trips, but quite subtle hallucinations, that though got a bit more intense when I added cannabis, nitrous oxide or the two times I candy flipped.

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Hello, 

I’m sorry to hear about all you have gone through; life can be very difficult and each of us have our own battles.  From my experience if we focus on our problems they only get bigger. In the age of the internet this can have terrible results because there is an endless stream of information available that can make us feel worse about ourselves.  My advice to you is to try and not focus on your condition or the troubles from your past. Therapy can be very good with the right person to address what’s troubling you.

 

Meditation is also an incredible tool that is free and can be very effective for treating depression, anxiety and other issues. The important thing with meditating is consistency; it’s like working out. You will not reap the benefits unless you put in the time and energy. It also is a subtle business that comes only after a few weeks of practice but then eventually one day you realize everything is okay and as it should be. 

For mediation it’s always worth investing in some course to help learn the basic techniques and ask all of your questions.  These are typically pretty cheap and you only really need to attend a few classes.

 

Anyway it sounds like you’re on the right path. Remember the ‘here and now’ is all we can influence and all that matters. It’s so easy to forget that. Keep pushing forward and believe things will get better and they will. Keep seeking peace and you will find it. I’ve messed up so many times but those low points provide lessons. Also hope is essential to keeping a good additude. 

Take care and keep posting on this forum.

 

Nick  

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