[Puppeteer]

Hi everyone! First post here.

I'm currently enduring a pretty severe case of neurological impairment/dysfunction and I'm trying to understand what's going on as best as I can. I was hoping you guys might have some insights.

I've just gotten into quite a panic after considering an incident I had earlier this year. I've been primarily convinced that my issues are related to HPPD (Hallucinogen Persisting Perception Disorder), though this incident has always been on my mind to some extent I suppose. I suffered from acute hyponatraemia at a festival I went to in January: it was incredibly hot, so I was drinking a lot of water (and only water, I was 100% sober the whole time). When I got quite a bad headache, of course I've been told all my life that water's the best solution, so I kept on drinking :S. After jumping around for a bit at a concert, I left and had a tonic-clonic seizure, accompanied by falling over and hitting my head. The next 12 or so hours are missing from memory save what I've been told and blurry pieces here and there. A couple found me and took me to the paramedics, I can recall having very slurred speech and laboured comprehension interacting with them. They didn't really stick around to describe what had happened very thoroughly which is unfortunate. Apparently I was very dazed and out of it. I "woke up" in the ER, while peeing for a drug test managed to drop the bottle of **** all over the floor before falling asleep again, so I guess that's an indicator of how gone I was at the time. I'm really not sure just how adequate the initial treatment was because they'd assumed it was all because I'd taken drugs (I hadn't) and were trying to "flush anything out" before treating whatever else. They tested my vision and I had a blindspot in the left field where I couldn't see the torch they were holding. This lead to me being kept in the hospital over the weekend (not a fun time). When I got out, people were telling me for a couple of weeks that I still didn't seem completely with it.

What's followed has been a year of hell, of course, but I don't know what role that episode has played.

Of course, at the time I was already experiencing pretty unpleasant HPPD (hallucinogen persisting perception disorder). I really can't remember too well how different life was before and after the incident, save that it was really shitty all around.

I had an MRI and EEG at the time which weren't remarkable save for a slight white spot on the MRI in the upper-right (really not sure exactly where and don't have the scans on me at the moment) "consistent with having bumped my head" which I was assured was mild and would recover quickly. I'm aware though that a lot of brain damage just can't be picked up by typical scans and now I'm fretting that I'm not only looking at HPPD but also an undetectable TBI.

I guess I'm just hoping for some insight and reassurance here... How likely it is that the whole episode did result in brain damage, how extensive it could potentially be, any way I could have it tested, treatment options, etc. I've got a follow up appointment with a neuro in March...I know there's not really all that much I can do. HPPD and TBI have relatively different treatment options and I just don't know which I should be primarily pursuing. I've been out of school and work for over a year now with little sign of things getting much better and it's incredibly difficult to not know if I'll ever be anywhere near my old self again.

Sorry for the gloomy first post! Thanks so much for reading this.

[Mark in Idaho]

puppeteer,

Welcome to NeuroTalk. Your post and question is difficult to answer because you don't say what your current symptoms are. I am also confused by your comments about the tonic-clonic seizure and slurred speech. It is usually difficult for a person to self-perceive both since the brain is dysfunctional during both events.

Regarding brain damage, a history of using hallucinogens and your fall suggest you do have an unknown level of brain damage/dysfunction. The term brain damage should not be scary because many people live full lives with damaged brains. It sounds like a bigger issue you have is anxiety. Anxiety can be the result of a brain injury or from psychological and/or psychiatric issues.

What are your current symptoms ? (How) Are they keeping you from working or school ? Have you tried to develop work-arounds to your limitations ? Are you currently receiving any treatment for your symptoms ?

With a better understanding of your current condition, we may be able to better help you.

[Puppeteer]

Thanks for your response. Sorry for the ambiguity/confusion! Evidently conveying things clearly isn't exactly a strong suit of mine currently.

The couple who took me to the paramedics saw me having the seizure and that's what they wrote down - "tonic/clonic seizure". Additionally, I have "islands" of memory in the post-seizure amnesia - I recall the couple helping me walk, telling me I'd had a seizure and they were going to get me help, asking if I'd taken anything, not to touch my face (I'd scraped it up pretty bad), etc. I remember being unable to respond properly, comprehend what they were saying etc. - you know, I knew what I wanted my brain to be saying and doing but it wasn't happening correctly - when they first asked if I'd taken anything I said "yes", followed by "no", and can recall saying "I'm sorry" to them quite a bit. Quite unfortunately, that, as well as the general disorientation I was displaying, led everyone involved in treating me early on to assume that I had taken something and to respond as though they were treating intoxication/overdose - I can't help but fret that that delay in treating the actual problem may have led to more damage than there might've otherwise been...

Anyhow. My current situation... I say with as much modesty as I can that I was of quite above-average intellect - top 10% student at an academically selective high school - prior to incurring this damage to my brain and thus am acutely aware of the fairly considerable deficits in my cognitive ability... An article called "The High IQ TBI" on the blog "Dancing Upside Down" (can't post the link) really resonated with me. My symptoms: The visual issues most likely due to HPPD: tracers, geometric/contrast-y patterns in grass/leaves/carpet/etc., occasional flashes in my peripheral vision, exacerbated visual snow (I've had it since I can recall), starbursts, after-images, light sensitivity, focusing issues... Those which are more ambiguous: anhedonia, difficulty concentrating, difficulty absorbing information, spatial memory/navigation, all forms of memory quite messed up, aphasia (language/writing/vocabulary were my greatest talents and so this is especially heartbreaking) difficulty speaking clearly, jumbled thoughts, a sensation of "head pressure", and depersonalisation/derealisation. It's hard to say if there's any "physiological" cause of the severe anxiety and depression, as naturally such a blow to cognitive capability/associated lifestyle would greatly upset anyone...

And I guess, even though I'm physically capable of carrying out various tasks if I put my mind to them, I feel absolutely messed up no matter what I'm doing, and the thought of committing to something high-stress and high-responsibility in this state is incredibly daunting - not just the menial/mental tasks themselves but also the inherent socialising. And yeah, anxiety is a huge part of it... I've endured a pretty shitty life and the thing that got me through it all was my intelligence - my one blessing - and now so much of it is gone... I don't want to move on from that me. That life. The thought of just letting go of it is incredibly scary and upsetting. Every waking minute I'm acutely, intensely aware of how utterly messed up my brain feels... I never feel comfortable or relaxed in myself. Continuing to exist feels hard enough... Adding the responsibility of a long-term vocational commitment feels unfathomable... I suppose I'm kind of waiting on some kind of significant gain, or something near a guarantee that I can/will be able to reach something close to my former self... Which I know is incredibly unrealistic/wishful thinking but like... I don't know. If I were to be blinded, or to lose multiple limbs, I wouldn't want to live. This is starting to feel equivalent to those things.

Yikes. I'm sorry to be such a total downer... I'm doing CBT and stuff and am aware of how futile and destructive all this dwelling and regret and self-loathing is, and I know I ought to be grateful for my relative fortune and I really do try to be, but it still manages to consume and dominate how I think and feel... So in seeking help it wouldn't be honest to obscure it.

What I'm trying to focus my energies toward is "fixing" my brain as much as possible so hopefully I'll eventually feel able to put myself back out there. I haven't been doing too brilliantly with the more effort-intensive stuff over the past year - studying, diet, exercise, etc. but I've done a lot of research into medications/supplements and have been trying a few here and there. Nothing's really seemed to make a huge difference, thus far though, unfortunately, but most of the promising things - those which promote neurogenesis, neurorestoration, etc. take time.

Blah, rambling on. I'm so grateful to anyone who's taken the time to read through this.

[Mark in Idaho]

First, stop fretting about the delay in treatment. There is no treatment for a concussion unless there is a brain bleed. Regarding TBI with high IQ, it is a double edged sword. We are usually acutely aware of our changes/limits but we also have the intelligence to devise work-arounds and other accommodations to allow us to continue on with a full life. We may need to reinvent ourselves to do this.

You have not told us what your symptoms/struggles are. Please tell us more about your symptoms and the treatments you have had. Also, what is your nutritional and supplement regimen ?

The worst thing for recovery is anxiety. Finding a way to let go of your anxieties will be beneficial for your recovery. You do not want to take on high stress activities. The concussed brain will not be reliably successful in high stress situations. It is possible to live a lower stress life. Even healthy brains should avoid high stress.

Please tell us more about yourself. Your age, time since injury, your history, etc. Many of us have likely been through similar situations.

My best to you.

[Puppeteer]

I've read that a delay in treating acute hyponatraemia/water intoxication increases the risk of brain damage which is what I'm concerned about... But yeah, fretting isn't going to change anything. Incidentally I'm curious: do you think it's likely that I did suffer a concussion when I had the seizure, from what I've described? The fact that there was detectable minor damage on an MRI makes it seem likely but TBI/concussion was never mentioned during my hospital stay, only the seizure...

Did you read this part of my previous post? Or do you want some other kind of elaboration...

Anyhow. My current situation... I say with as much modesty as I can that I was of quite above-average intellect - top 10% student at an academically selective high school - prior to incurring this damage to my brain and thus am acutely aware of the fairly considerable deficits in my cognitive ability... An article called "The High IQ TBI" on the blog "Dancing Upside Down" (can't post the link) really resonated with me. My symptoms: The visual issues most likely due to HPPD: tracers, geometric/contrast-y patterns in grass/leaves/carpet/etc., occasional flashes in my peripheral vision, exacerbated visual snow (I've had it since I can recall), starbursts, after-images, light sensitivity, focusing issues... Those which are more ambiguous: anhedonia, difficulty concentrating, difficulty absorbing information, spatial memory/navigation, all forms of memory quite messed up, aphasia (language/writing/vocabulary were my greatest talents and so this is especially heartbreaking) difficulty speaking clearly, jumbled thoughts, a sensation of "head pressure", and depersonalisation/derealisation. It's hard to say if there's any "physiological" cause of the severe anxiety and depression, as naturally such a blow to cognitive capability/associated lifestyle would greatly upset anyone...

Treatments - I was prescribed Cymbalta which obliterated the 24/7 relentless anxiety I was experiencing in February which I came off around July/August I believe... I fear it may have worsened certain symptoms/contributed to lasting anhedonia issues, but memory really doesn't serve me well enough to be confident about that, so I don't let the possibility bother me. I recently came off 200mg of Lamictal after being on it for four months due to perceiving no benefit at all.

Nutrition - I eat a vegetarian diet and do my best to keep it varied and wholesome but I could definitely be stricter and more thorough with it. Motivation, alas. I try to eat a large bowl of quinoa daily as well as a variety of vegetables, and am cutting down on junk.

Supplements:

Multivitamin
B Complex
5ml concentrated fish oil (~2g EPA, 1g DHA)
Vitamin D3, 1000IU
Zinc, 25mg
Creatine, ~5g
Magnesium, 600mg
And soon I'll be taking two tablespoons of extra-virgin unrefined coconut oil, a Vitamin E complex, phosphatidylserine, and Vitamin C.

To promote neurogenesis:
Lions Mane, ~1g BID
Tianeptine ~20mg TID
Ashwagandha, 2g (dubious quality)

I've recently added the following based on a popular stack for dopamine modulation, receptor proliferation, mood, concentration, lots of other claims (choline, DHA, uridine):

Uridine Monophosphate BID
Tonight I began taking CDP-choline, so I'll see how it goes... might swap to or add ALCAR, depending, given ALCAR's role in increasing NGF production/sensitivity

I'm particularly excited to try something called NSI-189, which I'll be receiving in just under a month if all goes to plan. It's a novel drug which has been shown to promote hippocampal growth of up to 20% and is being trialled for MDD but will undoubtedly be valuable in all disorders involving hippocampal damage/atrophy including TBI, PTSD, etc. as well as having nootropic value. As MDMA played a fairly significant role in my anxiety/depression/cognitive dysfunction prior to the seizure episode confusing the whole situation I think hippocampal injury is likely a fairly significant part of my condition and thus healing it ought to provide at least some level of improvement. It seems far and away the most hopeful option I've come across thus far, with another compound called 7,8-dihydroxyflavone coming a close second as it's been shown to promote considerable neurogenesis specifically in the dentate gyrus, a part of the hippocampus involved in some of the processes I struggle the most with... as of yet there's no reliable, accessible source for it, though.

I'm aware I'm probably going a fair bit overboard with it all, and that there's never going to be any silver-bullet pharmacological solution... Given my current wherewithal it feels like the most productive investment of my modest means. I'm planning to channel the spending into other avenues this year though... possibly a Lumosity membership, and maybe even a gym membership.

Bleugh, again I'm just rambling on with little rhyme or reason, so I'll wrap up. I'm 18, Australian, male, endured the drug-related damage late 2012, had the seizure/head-bump/hospital stay episode in January 2013. Had a history of anxiousness/depression prior to any drug use, high academic performer/perfectionist from a dysfunctional, high-stress household... Not sure what else might be "of use".

Again, thank you so much. My best to you as well.

[EsthersDoll]

Hi There,

We all go through the process of grieving what we've lost. It's a different process for everyone. Knowing intellectually that you should accept what has happened and being able to accept it emotionally are two different animals.

It took me well over two years to finally accept that I was limited and 3.5 years later I still have moments of grief or anger at the loss. And I'm still improving significantly due to some treatment I'm receiving for pituitary dysfunction that was caused by the concussion I sustained.

Remember that you are human and you are going through a rough time (which is really putting it lightly). I think most importantly you should be gentle and patient with yourself and understand that this process can be very difficult.

You're not a downer. Your post is not a downer. You have to be honest about your experience and your experience might not be what "the average person in America wants to hear" but we are not average. Many of us have been through pure hell and we get it.

[Mark in Idaho]

puppeteer,

I saw your list in the quoted paragraph but you posted them like a laundry list taken from an internet search, not a list of personally experienced and identified symptoms. If they are your current symptoms, please list each individually and include how that symptom is manifesting in your daily life. Everybody experiences these symptoms from time to time. It is when we experience them is ways that are more frequent, chronic, and intense that they become a symptom of concussion. You do not state what symptoms pre-existed and are likely due to the HPPD beyond a casual reference.

The jumble thoughts and speech are often linked to stressful activities or environments.

Personally, I have experienced many times where I had limited cognitive functions compared to my functions at time of peak performance. My concussion history goes back to 1965 with multiple deep valleys of academic/cognitive performance followed by returns to very good or excellent academic and cognitive performance. For example, one year post injury, I scored 650 on the Math SAT. A year later with absolutely no math courses in the prior year, I scored 700. My verbal score stayed the same.

btw, Most of my WAIS-II (Wechsler Adult Intelligent Scale version II) scores put me in the top 1 or 2 %. My memory scales put me in the bottom 5 to 12%. My processing speed is at 25% or as low as 10%. There is such a drastic difference between my WAIS scores and my memory scores that the two Neuro Psychs doing the assessments believe than I faked the memory scores. This is despite scoring 48 and 49 out of 50 on the two validity (malingering) tests scales. A subject would need to score under 37 to be considered a malingerer/faker. I almost Aced the validity scales.

Since then, I have come to realize that my verbal understanding is far better than my verbal expression, especially in stressful situations. This is likely due to my history of concussions. My struggles with word finding limits my expressive ability in spontaneous or immediate situations but not in the long term. I have many work arounds for dealing with my word finding struggles.

You writing and verbal expression skills can be restored with practice. I find that I do best with a keyboard and computer screen. I did not have access to this aid when it would have helped me academically. You are fortunate to live in the computer age. I use the screen as my verbal memory. I can easily reread my thoughts to restart the chain of thought. I can edit and make all combinations of verbal gymnastics as I work to get my ideas into print.

I have even gone so far as to connect multiple screens to my computer so I need not cascade different windows of information as I work. If I hide a window behind my working document, I easily forget where the information was sourced. By having what I call digital spread sheet (sheets of digital text spread across multiple computer screens), I can quickly scan from my working document to the multiple pages of information. I have used up to three screens at a time.

I start writing freestyle with little attention to format, grammar, or organizational structure. Then, I go back and start editing with cut and paste to set an understandable order to the information. Finally, I edit for grammar and ease of understanding. These are all things that I would have been able to do in my head if it could remember all the information and sort and organize it as it did in my high functioning past. It takes a bit longer but I think the end result is actually better. I have become intimately familiar with Control X (cut), Control C (copy) and Control V (Paste).

Spell check has also become a good friend. I just need a spell check dictionary with more 50 cent words. Google works for the complex words.

I see you are not taking any B-12 specifically. A B complex rarely has adequate B-12 or even B-6. A vegetarian diet (yours is a limited pescatarian or pescavegitarian diet due to the fish oil) is lacking in many Essential Amino Acids/Essential Fatty Acids with Branched Chain Amino Acids almost totally absent. They can only be found in meat protein with pork the best for BCAA's.

You also have not told us about your timeline. How old were you when you developed HPPD ? Was it due to drug abuse or some other factor ? How old were you when the seizures started with the likely concussion ? How long ago was that ? What is you history of using intoxicants (age, type, intensity, frequency) Do you or did you participate in contact sports with head impacts of any frequency or intensity ? These all play in to how your body responds. Brain insults during the adolescent years can be especially problematic because the brain is working overtime just to handle the rapid maturing factors on all fronts. This can extend into the early 20's.

As you said, fretting isn't going to change anything but even more, fretting about something in the past that would not have made a difference is all negative with zero positive value. Low sodium due to water intoxication is temporary. Unless you have chronic hyponatraemia, acute hyponatraemia tends to be self-correcting to a point.

From what I've read, the dangerous acute hyponatraemia is that which results in coma that is not treated to restore sodium levels. It sounds like your seizure may have been a response to your hyponatraemia and as you got past the acute phase, your body started to balance out because your water intake was curtailed.

I can understand some of the medical care you received, especially after you dropped the UA sample. Many would attribute this to an attempt to conceal UA evidence. I can't blame the medical personnel from making this wrong assumption. They see patients' skillful avoidance techniques routinely.

btw, It will help if you put a double paragraph space every 5 or 6 lines so those of us with visual tracking problems can follow what you post.

I have already likely given you a fire hose dose. Sorry for that. I am passionate about your situation since I experienced very similar struggles except mine were all due to physical traumatic brain injuries except for one episode of extreme high fever resulting in convulsions and paralysis and one episode of extreme hypoglycemia resulting in muscle contractions/spasms.

Please don't feel a need to hide information. We have seen people with problems due to self-inflicted injuries, injuries at the viscous hand of another, totally innocent accident to foolishness or even stupidity. The what's and why's of the past don't matter. How we move forward is what is important. Doctors rarely take enough interest to effect change. We have most of the control as we move forward.

My best to you.

[Derekjeter]

Hi everyone so I'm 19 years old and yes I am a female I've done lsd around 9 times and it was different times throughout my teenage years. I haven't always had good trips but for the most part they were okay. I recently just had a concussion and it feels like my symptoms are worsen I feel like I'm in a acid trip I feel like I can't express my feelings without feeling dumb or I can't say words correctly I just want to give up on life I have no motivation to do anything I feel like a loser but I'm trapped in my own mind. I want to stop smoking weed and drinking but it's so hard because you want to block it out. Is there anything I can do that can help my visuals not be so intense. It's cool here and there but it seriously gets old.. I was looking into vision therapy maybe it can help it? Idk I know I'm not the only one out there and yes I am religious. But when it comes to big task I feel like I'm gonna be a loser and never succeeed..

[Mark in Idaho]

DJ,

Welcome to NeuroTalk. When did you suffer your concussion ? What happened ?
What symptoms are you having ?

Do you have these symptoms when you are sober ?

I doubt anybody here understands what you mean by 'in an acid trip' so your help to help us understand how you are feeling will be good.