Davidmckeon22

My HPPD story thus far

5 posts in this topic

Hey guys, I thought I would introduce myself and post my own testimony of how I acquired HPPD, and also ask a few specific questions, maybe to provide some solidarity for others, and also seek some advice. 

I acquired this disorder following consuming MDMA on a number of instances: June 2015; October 2015; June 2016; and September 2016. I consumed cannabis on the majority of these instances as well. In hindsight, I had extremely minor symptoms from the first three instances of MDMA consumption, and it was primarily the final instance which triggered the disorder and the visual and cognitive symptoms it presents with. 

From September 2016, I began to noticeably experience: headaches; depersonalisation; pallinopsia in the form of primarily negative after images but also positive after images, especially of words from screens or pages when reading and screens, although they appear to be progressing to affecting all perceptual stimuli generally; trails and tracers, such as car lights or even my hands in bright environments; visual snow and static, evident mostly in dark environments but present when concentrating on certain spots; flashes of light in peripheral vision; Blue field entoptic phenomenon; cognitive impairment such as memory issues, difficulty with mental visualisation and forming sentences; perceptual difficulties with depth and difficulty with the process of reading (the process itself doesn't seem to be fluent or automatic like it was prior to consumption) which probably coincides with the cognitive impairment which worsens the issues with reading. The prior instances of consumption from June 2015 - June 2016 in hindsight had resulted in milder headaches and some limited visual and cognitive dysfunction, but I had associated this with a co-existing health issue which was diagnosed by a Neurologist  at the time (Non-Coeliac Gluten Sensitivity; imagine Coeliac disease but exclusively affecting your nervous system). 

Following the final instance in September 2016, I eliminated all substances from my lifestyle, including caffeine and alcohol. I saw no real improvements, and attempted drinking for a period between January 2017 to March 2017 before eliminating it again from my diet, although I began to drink tea and coffee again, which I've maintained thus far - there appears to be no acute exasperation of my symptoms following the consumption of caffeine. 

My symptoms - apart from the depersonalisation, which resolved after a few months, and the cognitive impairment which has remained the same - have gradually worsened as time has progressed. I'm currently in my third year of University, and attempting to instigate a healthier lifestyle in relation to exercise, with hope that it may still improve and make my final year of University easier. 

 

I desired to make a few general enquiries to any of you in similar situations:

1) How does condition respond to stimulants such as caffeine? Do you believe it temporarily or permanently worsens your symptoms? Or perhaps impairs the recovery process? My concern is whether caffeine in my situation has caused chronic exasperation of my symptoms despite the absence of an acute exasperation. 

2) Is alcohol likewise a problematic substance in regards to the chances of recovery? 

3) Have any of you been in the same situation, with your symptoms worsening a year or so onwards prior to their improvement? 

4) is there any particular advice you could offer, or perhaps your own anecdotal experience? 

5) Have any of you experienced the cognitive and mechanical dysfunction I've described with reading? And if so have you saw any improvements? 

As I previously mentioned I do possess some accompanying health issues such as Non-coeliac Gluten Sensitivity which manifests itself with neurological symptoms such as mild Neuromyotonia - minor myoclonic jerks and tremors. I have also attempted the anti-convulsant Keppra or Levetiracetam, but ceased its implementation due to the negative effects outweighing the mild positive effects it provided for visual symptoms. 

No doubt I have failed to disclose some information concerning my own experiences, but if you have any questions then feel free to enquire, and any assistance would be greatly appreciated.

Edited by Davidmckeon22
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16 hours ago, Davidmckeon22 said:

1) How does condition respond to stimulants such as caffeine? Do you believe it temporarily or permanently worsens your symptoms? Or perhaps impairs the recovery process? My concern is whether caffeine in my situation has caused chronic exasperation of my symptoms despite the absence of an acute exasperation. 

Effects are temporary, but you might be right about hindering recovery time.

2) Is alcohol likewise a problematic substance in regards to the chances of recovery? 

Almost certain it does. The anxiety can be crushing and lasts for 2-3 days (4-5 days now I am 40!). Can't do any good for recovery, which needs as stress free a mental state as you can get.

3) Have any of you been in the same situation, with your symptoms worsening a year or so onwards prior to their improvement? 

Not personally, but have read similar accounts on here.

4) is there any particular advice you could offer, or perhaps your own anecdotal experience? 

Try to reduce stress as much as possible. Try not to dwell on the past. Keep fit. Eat healthy. Stay away from drugs. Keep drinking to a minimum (i find a few beers here and there is ok, and gives me a bit of normal life back). Manage benzo use for maximum relief and minimum addition/tolerance risks (3 days on, 4 days off, for example).

5) Have any of you experienced the cognitive and mechanical dysfunction I've described with reading? And if so have you saw any improvements? 

Yes... Not really.

 

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For me, alcohol didn't make my symptoms worse.  At least I don't remember it making my symptoms worse.  I was in my 20s when I put down the bottle.  I can't imagine how I'd react to it now.  

As for hppd and reading, I had a horrible time reading for years.  The spaces between the words pulled at my attention as much as the text.  I'd see all sorts of shapes, and movement between the words.  I also had a very hard time understanding what I was reading almost like I had developed dyslexia.  I just kept forcing myself to read and most of those symptoms have gone away.  Took a while though.  Getting through college was a challenge!

I'm repeating myself because I mention this in most of my posts.  A daily meditation practice helped immensely with anxiety.  It took almost a year to "kick in" but once it did my anxiety got much better.  20+ years later and it's as essential as air.

My symptoms vary from day to day but over the long haul they've improved significantly.  I still have very noticeable visuals but otherwise I feel fairly "normal" (whatever that is).  People who know me may dispute my claim that I'm in the normal spectrum (:

I hope the jumble I wrote here has something of value.  Hang in and take care.

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Greatly appreciate your response and input to my questions Jay and MacDoc.

MacDoc, if you don’t mind me enquiring, what symptoms concerning the reading difficulties you experienced were the ones that improved? 

I practiced mindfulness meditation for s few months but no where near as consistently as I would desire to in order to experience the beneficial effects it can produce. 

Thank you both for the suggestions. 

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Re: reading difficulties

The space around the words became very distracting because I would see shapes, movement, and colors.  I kept getting the context of the story line confused because my eyes were jumping around so much.  Most of that has gone away as long as I stay focused on what I'm reading.  If my mind starts to wander the shapes and movement comes back but not nearly as bad as it did when I was younger.  I'd say I'm 90 percent recovered from my reading difficulties.  Like meditation, I read almost every day and have for decades.  I think some of my recovery was brain retraining.  I hope I answered your question.

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