4 Months in... Pretty bad so far.

[glmelton]

Age 23

Date got HPPD 03/29/2013

Medication's: Klonopin .5 X2, Depakote 250mg X2, Keppra 250mg X2,

Supplements: Melatonin 3mg w/B6 2mg X2, St. Johns Wort, Ginkgo Biloba, Multi-Vitamin, Omega 3

 

Symptoms

Shutter Vision

Static Vision/Visual Snow

Tracers and After Images

Dark Frame Surrounding Peripherals/ Tunnle vision

Depersonalization/Derealization/ Numbness

Massive Depression / Depressed and Insane Thoughts

General Anxiety/Social Anxiety / Impending Doom feeling

attention/focus difficulties

Loss of libido

Lack of Self Meaning/Unmotivated

Lacking Cognitive Function/Confusion

Severe Loss of Sort Term Memory

Complete lack of ego

Extreme Paranoia(People are out to get me every time someone tells a story I think its pertaining to me, when people laugh I think there all laughing at me)

Everything looks clear/sharper (textures look really detailed)

Sensory overload

 

First off I want to apologize for any grammatical errors. I'm pretty sure I had mild Asperger's syndrome before I got hppd at least that's what a psychologist mentioned to me a few years ago but never had an official diagnosis. But regardless I was never fluent in reading and writing but excelled in math and science.

I first noticed the visual snow after I went on a intense whip-it and molly binger one night I split a case of about 400 whip-its with a lady friend of mine i was loading my cracker with 5 at a time and after every hit I would take I would breath it into a large balloon then after the cracker was empty i would start inhaling/exhaling what was left in the balloon until I got to the point where I completely lost control over what my body was doing and I was so far dissociated I didn’t realize it. After id come too I noticed that there was a small/light vail of static over everything I looked at but it wasn’t that bad and I didn’t care that much at the time because I thought it would fade away in a few hours or days. And it did for the most part.

 

But when I “REALLY” got hppd from staying up all night on about a gram of mdma and then when I started coming down I took 2c-I around 8am to hopefully keep it going and at first it was awesome for the first time in my life actually seen open eyed hallucinations like I saw thing that whernt actually there and I felt like I was rolling. It really was one of the most incredible experiences of my life  but after about 4 or 5 hours it turned into a horribly bad trip I felt anxious and depressed and insane and this is when I felt the depersonalization for the first time and it hasn’t went away sense then. I noticed that everything looked a lot clearer and sharper and that everything has like a lot of static of visual snow over it. After a couple days of not sleeping I ended up getting a taking a antianxiety pill and got a several hours of much need sleep but when I woke up I noticed that I still had persisting images, visual snow, tracers, and most of my symptoms.

 

I never feel completely calm. Now everything looks completely different sounds different I can’t feel anything physically.  Every time I look at a bright light and look away I see the after image of the light for a few seconds. Or if I look at something and look away really fast the previous thing that I looked at is still there like an after image. And im not to entirely sure but I feel like a piece of my brain isn’t functioning anymore but I can’t seem to notice it. After the initial shock of hppd I kinda calmed down and living with my friends I found it hard to stay away from drugs. I just thought I should stay away from hallucinogens and so I did but I continued to use other drugs and found myself slightly addicted to smoking 4-fa and sometimes doing apvp(bath salts). And continued to do molly and whip-its. It wasn’t so bad having hppd at this point even though it completely scared me Id still do drugs without any noticeable change to my hppd symptoms. However I did end up getting really depressed over so girl problems I was going through at the time and the depression got so bad I just wanted to kill myself so I attempted to do so with a massive dose of a sleeping pill containing (diphenhydramine) little did I know it was an ssri and made you trip out in large dose’s and it considerably hard to actually OD on. And im pretty sure this actually made my hppd way worse.

 

I finally came to the conclusion that I need to stop doing all drugs in general and get a grasp on my life. So I completely quit all drugs in general and moved to Williston North Dakota and landed a well-paying job I just assumed at the time that my symptoms would subside over time and I could just reintegrate back into society normally. But quit the opposite happened I actually was extremely nervous around everyone I meet at my new job. I didn’t talk to anyone about anything unless they asked me a question or told me to do something. I could tell that people defiantly new something was wrong with me. My shift was 12 hours a day everyday for 6 weeks I also lived where I worked and my phone ended up breaking so I literally talked to no one at all I would just spend all of my spare time in my room and the other time I spent working and trying my hardest to avoid any social contact with anyone I could. I was stuck there for 6 weeks and for some reason every minute felt like an hour time moved so slowly. And all I could think about was that I need to get through this and get back home and everything will be better being around my friends and people I could actually talk to. Toward the last 2 weeks I was the I acctuly started seeing a psychologist who of course never herd of hppd before in her life and just thought I had drug induced schizophrenia and prescribed me olanzapine an antipsychotic. I tried one that same night and it was so horrible made me feel a hundred times worse and like I was having a really bad trip. She later prescribed me with a anti-depressant Lexapro which made me feel really happy for like an hour or two then really shitty for the rest of the day. I eventually got fired from where I was working because of my worsening symptom and came back home.

 

Now I barley talk to people. Ill hardly look people in the eye’s when people try and talk to me ill be quite the entire time then try and end the conversation and  leave. Now I usually just try and avoid people because its always awkward. Most days I spend without talking to a single person. Then most days I’ll get really nervous and no matter what I do I cant seem to calm down and my inner voice just keeps telling me that im worthless, that my whole life is a joke and that im not good enough. Out of a 24 hour day I leave my room for about a half hour and its only to eat and shower.

 

                Iv been seeing this psychologist back here at home and when I originally asked for keppra she got really tense and hissed a little like as if I insulted her beliefs or something. And instead she put me on Depakote 250mgs 3 times a day and Klonpine .5mgs twice a day to treat my mood and hopefully my visuals. Depakote did nothing for my visuals but did help my mood some I noticed that I was slightly less depressed but not necessarily happy at all. Plus I noticed taking Depakote 3 times a day gave me a sever headache so I lowered it to twice a day. When I saw here again to weeks later I told her that my mood was a little elevated but no change in my visual symptoms. She proceeded to tell me she had done some research herself and I presented her with the case study on keppra. And she agreed that it was the best liable treatment from my condition. So now I take 250mgs of both keppra and Depakote in the morning and right before bed.

 

                Results well I’m still very nervous around any person even close friends of mine. However keppra a reduced my visual symptoms a lot I still notice visual snow but its about %70 less, after images have significantly reduced, trails and tracers are about %90 reduced, my depersonalization, de-realization, and numbness is down like %70. My anxiety is down like %40 I feel like I can think better with less brain fog and confusion. And its only been 4 days now im excited to see how ill be after 3 months. However there is a down side to keppra when I was taking Depakote and klonpine I bailer noticed any side effects at all. But with the addition on keppra I fell heavily sedated almost like a drunk zombie. I feel like im shit faced without the head change sometime ill stumble or bump into walls. I fell a little dizzy as well. I do fell a little more agitated but nothing like the infamous “Keppra Rage” iv been hearing about.

 

                Iv also been taking gingko for memory and St Johns Wort because its an mild ssri and I haven’t noticed any sever changes in symptoms I’m just really desperate to get rid of this intense depression. I feel like I don’t have any emotions at all anymore like I can’t feel happiness or anger or anything anymore only a really low baseline sadness…. And I’m hoping that just maybe it’ll help my increases my mood.

 

                Is it normal for people with hppd to feel so insane it repeats all though out the day in my head? All I think about is “I’m insane, no im normal, nope I’m defiantly crazy, no its just the hppd I’m fine it’ll get better.”

I also notice for a very brief period in the morning when I every first wake up calmly is that I feel completely normal I can feel the bed sheets brushing against my legs. I run my hand through my hair and it almost tickles because I can feel my hair move. Then after about five minutes my body pretty much goes numb and my symptoms slowly fade in.

 

Any advice form anyone would be great I defiantly want to stay positive and get through this and get on with my life. Because my psychologist isn’t sure I can qualify for disability because I can still function and communicate but when I’m around people I freak out or end up getting fired from jobs. So financially I’m in a bind which doesn’t help my depression.

[glmelton]

I will try and keep you guys posted on my success with keppra. 

[onedayillsailagain]

Welcome to the forum
I'm just gonna answer the only question you asked, seeing as I just woke up and have little to add at this moment.

Yes, sometimes I get insane thoughts that would burn the devil himself in jealousy. Like seriously fucked up shit.
At first it scared the hell out of me. Somehow though, I managed to just recognize the thoughts and go "Oops.. that's just another mind-fuck" and I don't linger on those thoughts as long as I used to. It still sucks, but when you've had this for a while, you kind of grow numb to it I guess.

I suggest you see a new psychologist to get disqualified for work. If you told her about freaking out on the job and getting fired because of it, and she still refuses to see that you can't work like this, then she's not supporting you (which is what psychologists are supposed to be for).

Anyway I suck at reading between the lines nowadays, so maybe you might wanna be more specific as to what kind of advice you would like?

All the best,
Odisa.

[glmelton]

Yeah my therapist thinks i should defiantly apply for disability at least until this all blows over.

 

But my psychologist is certain that if i keep on my medications i will get better and that theirs no need to even apply she also doesn't think i should get an eeg done.. Which i would actually really like to see for myself. 

 

In any case the keppra is actually helping even though is still feel extreme social anxiety.

 

And thanks for answering that question about being crazy.  I wasn't sure if that was normal for us hppd'ers or if i was slipping into so from of schizophrenia. Because alot of the time i truly believe iv gone completely insane and that theirs no going back.

[onedayillsailagain]

Well then tell her that whilst you appreciate her views (or even if you don't, just smooth it over somehow.. Just bite your tongue if you must), that you still insist on having an EEG done.

Apparently you have both a psychologist and a therapist.. I don't really know the difference, but perhaps have your therapist talk to your psychologist. Alternatively, have your therapist advocate the your necessity of disability payment, and leave your psychologist out of it. Seriously, these people tend to suck at communicating between one another, so if you play your cards right, you can get what you want/need.

I also have that social anxiety, albeit not as extreme as in the first few months. Only thing that helped me with that was Phenibut, but that is insustainable, moreover I doubt it's wise to combine it with Keppra. However, currently the only people I interact with or happen to meet, are usually idiots, so I don't really care much for them, hence my anxiety isn't so high. Though the people I do care for, I avoid. Weird shit.

Regarding the fear of psychosis.. Dude I went through a psychosis with Amphetamines. It scared the living shit out of me, and for a long time I was extremely anxious that I would somehow go back to that state of consciousness. However, as time passed, I noticed that through all the weird mind-states I went, I never went back to that state (the whole thing was irrational anyway; it was drug-induced after all, not endogenous). The only thing that sort of fucked me up were a few times with weed, but even then it was more of an insane panic attack rather than a psychosis. So as long as you stay away from drugs, you'll be fine (well, regarding psychosis that is). Whenever my mind does weird shit, and it starts being a burden or bothersome or anxiogenic, I just take a brake from whatever I'm doing, sit down, and I sort of just watch how thoughts go by (I guess some form of meditation you may call it, though definitely not enlightening in any way.. sometimes it spaces me out, but it sure is better than latching on to every strange thought and over-analyzing it). The more I do this though, the less the impact is of the strange thoughts. I mean I still get fed up from time to time, but whenever I have some fucked up thought, I've learned not to be (as) alarmed by it. They're still there, still intrusive, but they don't cause me hours of intense anxiety. Seconds to minutes at most, sometimes longer but not as intense as the previous "Holy fuck I want to rip my brain out" level of pain it caused me.

Honestly though, besides not having much memory of it, the first few months of HPPD were downright freaking horrible for me. Time didn't heal me, but it sure somehow procured a strategy to deal with this shit. Compared to the anxiety I initially had, I'm actually pretty lucky now. Still feel like complete and total shit most of the time, but I don't have to deal with extreme ubiquitous anxiety on top of it. But I'm also in a position where I can afford not to give a shit about a job etc. I basically do nothing throughout the day. I can go outside if I want, I get anxious, but not bat-shit insane trembling on my knees wanting to hide in a public bathroom anxious.

Really don't know where I was going with that.. feeling rather fogged up at the moment. I just guess I'm trying to say that the initial anxieties may still persist, but they'll lessen over time. Not to say I feel confident again, but I'm not spending each day wondering if I'll lose whatever is left of my mind either. I.E. still feel like shit, but without the impending doom flavor.

EDIT: I must note however, that this could be due to Keppra. Though not consistently every night, mostly I've been sleeping better since on it, which in itself helps me.

[hppd33]

Cool man, you have reduced your symptoms, thats great to hear!

You tell your visual snow reduced, did you also had closed eye visions? Did it reduced because of the keppra? or is it the klonopin.

The anxiety you feel i understand very well, sometimes i look into someone's eyes and i know i have a meaningless face, thats what disturb's me the most. Its not spontainious anymore. also the fact, people can all of a sudden turn into "puppets" scares the shit outta me.

 

I am taking lamotrigine, isnt this the same as keppra? The sedative shit is most likely because of the klonopin, in combination with other meds , when the klono kicks in i want to go to bed, and when im out of bed, my anxiety begins again, so i take another klono. It is fucking not normal.

 

I still want to quit klonopin, but i need something what keeps the visual snow in the air, and when my eyes are closed away.

[Sam93]

Cool man, you have reduced your symptoms, thats great to hear!

You tell your visual snow reduced, did you also had closed eye visions? Did it reduced because of the keppra? or is it the klonopin.

The anxiety you feel i understand very well, sometimes i look into someone's eyes and i know i have a meaningless face, thats what disturb's me the most. Its not spontainious anymore. also the fact, people can all of a sudden turn into "puppets" scares the shit outta me.

 

I am taking lamotrigine, isnt this the same as keppra? The sedative shit is most likely because of the klonopin, in combination with other meds , when the klono kicks in i want to go to bed, and when im out of bed, my anxiety begins again, so i take another klono. It is fucking not normal.

 

I still want to quit klonopin, but i need something what keeps the visual snow in the air, and when my eyes are closed away.

Hey man,

Have you tried magnesium? That reduces my snow quite a bit and is also very calming.

[glmelton]

@ Odisa

Thank you so much for you long detailed feedback it really helps right now. I can defiantly see why you’re an advanced member of this form. Not just with my post either, you seem to help a lot of people. Which I find to be the most help next to therapy and keppa.

 

The mental health clinic I’m going to has me seeing both a psychiatrists (which I got confused for psychologist), and a therapist (which is probably my psychologist). Basically the difference is that my psychiatrist only listens to my symptoms then prescribes me medication where as my therapist or psychologist will actually listen to everything I have to say and help me with short term/long term life goals. Like overcoming social anxiety (through behavior cognitive therapy) and having me apply for disability. I’m not too sure if they communicate with each other that much but I do know they have the same network/software where they post there notes, symptoms, and medical history about me so either one of them can review what they have said about me.

 

But yeah I have another appointment tomorrow and I’m still going to politely insist that I would really like to be seen my a neurologists because I truly believe iv done some form of brain damage/restructuring and I would like to see it for myself if anything.

 

I find it’s interesting that you’re taking Phenibut as it has anticonvulsant effects much like keppra, and acts on the GABA receptor much like a benzo but also has properties of a nootropic. I just recently started dosing on a highly concentrated nootropic called Noopept as it helps with memory, learning, and relives anxiety. It doesn’t really help with any of my visual hppd symptoms but seems to help me concentrate better and think clearer/faster.

 

Do you think that Phenibut is worth trying though? I’m not really worried so much about the combinations either because I’ve been on there sedatives for the past 2 weeks with little adverse side effects other that the drunk zombie feeling that I can handle. And I’m also dropping depakote because I really don’t think or notice any positive changes with it and its extremely expensive.

 

As for the psychosis episodes it weird I fell like I’m just completely insane and no matter what I do or where I go I can’t seem to calm down and I get this strange lonely feeling like I’m fucked and there’s nothing or no one that can help me. But I still appear to be completely calm if other other people are around me(afraid of losing my cool and embarrassing myself, or making other people feel uncomfortable around me) , but on the inside I’m completely freaking out…  Also as time passes it seems to be lessening in frequency of occurrence.

 

 

 

@ hppd33

I would now say that keppra only reduced my visual snow and overall visuals around 40% to 50% “with” the addition of Klonopin, rather than the 70% I had originally stated. I’m not sure the first few days on it had some placebo effects with it or if I’m just growing a tolerance (if that’s possible). But in any case it “is” helping at least visually. The Klonopin reduced my visuals a little before I started taking keppra. But keppra seems to be helping the most. Well for me at least. So I do notice the difference.

 

And no Lamotrigine “Lamictal” isn’t the same as Levetiracetam “Keppra” but it is in the same class of medications as an Anti-epileptic Agent. So it should hopefully be helping you.

 

To update my med list

 

Medication's:

Keppra 250mg X2 - Most effective visually so far

Klonopin .5 X 3,     - Most effective with anxiety and some visualy

Depakote 250mg   - Dropping - little to no positive effect visually or mentally

 

Supplements:

Melatonin 3mg X2 - Helps Sleep and Mood

Noopept   30mg    - Helps Mental clarity and thinking

Multi-Vitamin         - No effect but still taking

Omega 3               - No effect but still taking

St. Johns Wort      - No effect dropping

Ginkgo Biloba       - No effect dropping

 

And now adding magnesium thanks to Sam93’s advice about visual snow  

 

Thank you all for replying, sorry it took so long to get back, and again I’m sorry if my post is riddled with grammatical errors. I’m defiantly not as smart as I used to be.

[onedayillsailagain]

Your welcome! I do my best. Though I think all it takes for advanced member status is 50+posts, haha.
Yeah the terms tend to be confusing.. on top of that they also have mental "nurses" and other paraphernalia.
How's the disability application coming along?

And yes there's no reason not to see a neurologist, so hopefully they'll be good citizens and comply with your request.
I no longer take Phenibut, though it sort of helped, albeit only the first few times. Didn't feel natural so to speak.
It's anticonvulsant effects are actually not so much like Keppra's, but indeed anticonvulsant activity has shown to be helpful in HPPD and I won't nitpick about pharmacology .
Noopept! Interesting that it's working for you. At the time I hadn't given it a fair trial, but it did absolutely nothing for me.
IIRC it promotes BDNF correct? It sure tastes horrid, haha!
Though Depakote is indeed an anticonvulsant, I doubt it's likely to help, yet I haven't looked up its MOA. Good thing your dropping it, I've read some nasty stuff about it which I don't recall at this moment.

And yes those are more anxiety episodes rather than a psychosis. A psychosis is distinctly different from anxiety, trust me (and read about the difference for yourself if you wish). If that what you describe, is what you think is psychosis, then let me assure you it is not. Psychosis is by far a lot worse, and high anxiety fits your descriptions far better.

Your medication/supplement stack is really decent, and you've made good decisions regarding what to drop and what to continue.
Indeed the Magnesium is a wise choice. What form are you taking? Also, perhaps you can share what multi-vitamin you are taking and I might be able to suggest a better or complementary supplement (as vitamin B in multi-vitamins can be low). Supplements can really help if you take the correct ones in the right way.. It's usually a financial factor that's the issue though, as some (or all combined) can be quite expensive.

Anyway, if you need any other help just let us know.
All the best!

[glmelton]

Again sorry for the delayed response

 

Well my disability application is long and strenuous I was told it’ll take them about 2 to 4 months to make a medical decision and that ill most like have to be seen by one of their doctors before they can make the decision. Because the psychologist and psychiatrists that I’m seeing now nether are doctorates or MD’s I guess. Basically they don’t have the authority to make a decision on whether or not I’m fit to work or not. So ill probably end up seeing a special disability doctor and I’m pretty confident that within the first half hour of explaining my symptom’s to he or she that they’ll know that I’m unfit for work and approve me for disability.

 

Noopept did make me think faster but I stopped taking it, for some odd reason I felt well “weird”

 

My last appointment well sucked! They asked me all the wright or I guess wrong questions and I kind of cracked as in just melted into a puddle of despair and started crying because there asking me about “thoughts of suicide” and I told them how I really felt on the matter. But this lead to my psychiatrists (med manager) thinking that I was more depressed because I dropped my Depakote and that it was a side effect of the keppra… So she insisted I continued the Depakote and halved my dose of keppra.. FML because iv always felt this depressed I just never really told them about it until then. “Bad timing” She also wanted to arrange transportation for me to a psych ward for suicide watch. I told her id drive there myself and never really went. I didn’t have a chance to ask to get referred to a neurologist either because it was basically all her over reacting, and me just crying and not talking haha so I felt like that was a waste of an appointment and also counterproductive..

 

Also my Therapist has me writing down all my negative thoughts I have and I think after she reads this notebook iv filled within the past week and a half sense I’ve seen her she’s probably going to need therapy as well lol But my next appointment on the 28^th I’m going to ask to see a neurologist for sure and I’m still going to be completely depressed like I was so she’ll notice that the Depakote isn’t really working for me.

And yeah I think your right about me mistaking my high generalized anxiety all day for psychosis although Im sure i have experienced true psychosis a few times in my life like when I first got hppd for example.

 

My multivitamin is 21^st century for males it contains 100mgs of magnesium, 2mgs of b6 and 6mg of b12, I’m also taking to melatonin tabs that has 3mgs of b6 in them so I’m totaling around 8mgs of b6 a day 6mgs of b12 and 350mgs of magnesium. My “nature made” brand magnesium just says 250mg magnesium but the ingredients say magnesium oxide, and magnesium stearate, plus some other fillers….

 

I also have to confess that I’ve been taking about 5mgs of oxycodone a day for the past few dyas and is has helped with my hppd a lot. Its helped with my visuals probably due to my pupil constriction and also my mood is really elevated. It’s weird because before I ever got hppd I never really like opiates but now they make me feel happy/euphoric and I feel like I care a lot less about having hppd because well they take away my depression for a little while… But when I’m off them it’s the same old hppd as usual but I haven’t noticed any increase in symptoms when I’m off them or on them either. I’m also growing a tolerance to them and I’m about to run out so I hope I don’t withdrawal to bad but I doubt it due to only taking a small dose a day.

 

To update my med list

 

Medication's:

Keppra 125mg X2        - Most effective visually so far

Klonopin .5 X 3,            - Most effective with anxiety and some visualy

Depakote 250mg x2     - No Effect 

Oxycodone 5mg          - Helps with visuals and mood

 

Supplements:

Melatonin 3mg X2        - Helps Sleep and Mood

Magnesium 250mgs     - Helps little with visuals I think

Multi-Vitamin                 - No effect but still taking

Omega 3                      - No effect but still taking

Noopept   30mg            - Dropped

[onedayillsailagain]

Well shit, sorry to hear! No worries about the delayed response.. I've yet to get back at some odd dozen messages myself. Tend to put it off I guess.

It would seem like your dealing with some incompetent doctors, but perhaps that's my personal bias.
Psych ward doesn't really sound like the most appealing, supporting environment to be honest. Guess you saved yourself there. I was suggested the same, but I was blatant about it and told them that unless I become a danger to others, I wouldn't be found dead in one of those pits. Perhaps again a bit biased, but I think that's a road that's hard to return from once traveled, sucking dry the last bit of freedom one may have. And yes well.. psychosis is a broad term. I guess it can be easily said that one is psychotic under the influence of drugs. Nonetheless unless it is something endogenously produced, I wouldn't worry too much about the times you think you did have one. I had one too, from which I still to this day have lingering anxiety, but I figure that unless I'd be stupid enough to do Amphetamines again, it won't happen.
Anyways man, IME don't settle for anything less than good doctors, and you'll come a lot farther. I might've said all the above before.. Forgive my memory.

As for the multi-vit.. Yeah could be a lot better I suppose, but already better than nothing (though that's questionable too as some vitamin forms are rather avoided).
Too bad about the Noopept.. As for the magnesium, it could be better form and higher dosage. Note: these are just my views, obviously you should make your own decisions.

Wow oxycodone.. Don't really know what to say 'bout that. I've no experience with opiates. From what you describe, Damiana seems to do more or less the same for me, so perhaps that's a viable alternative? Though idk about interactions with Clonazepam, and I've never used Clonazepam myself. To me it would seems like something I'd rather avoid if I can.

Pff I just woke up, and I'm still having thoughts about the rather vivid dream I had, so forgive me if this post is useless to you.
But anyway, here's what I would do, if it's any help to you:
 

• Be assertive with the professionals you're dealing with; tell them what you will and won't do, set demands, and don't give in.
• Wean off the Klonopin, Depakote, and Oxycodone
• Replace with Damiana and/or Passiflora (these have been superior to benzodiazepines IME)
• Half Melatonin dosage down to 1 x 3mg, and only use higher when you have insomnia, also try to use on an as-needed basis
• Up magnesium to at least 1gram/day, possibly 2, and use at night, or split dosage over morning and night
• Get a better multi-vitamin
• Keep the Omega's but spare your money when you run out.. also if you get a good multi-vitamin it will have Omega's already
• Possibly double up Keppra if it's helping you.
• Do your research on pharmacology/interactions/etc. when adjusting/introducing etc. medications/supplements/etc.

Though of course, the usual disclaimer is in place: Discuss with your doctor, blablabla. Just use your head, even if it may seem compromised at times.
Personally I don't discuss much with my doctor, as I rather take things in to my own hands.

As for getting disability: there's no need to act.. Just be honest. A little exaggeration might flavor the cause, but don't over do it. Or that's how I would do it. Again; obviously you've the best insight to how your situation is and how to best approach it in regards to any and all actions.

If you've any questions, ask away
All the best,
Odisa.

[glmelton]

Your post is never useless to me.

 

No questions here, your advise seems to help alot and yeah iv just been using oxy as more of a band-aid rather than a treatment. Anything that can keep my mind off of hppd is like a vacation from hell imo. But never the less i shouldn't be on it or else it'll lead to a bad lifestyle that id rather not endure. Same with the klonopin it only helps when im on it but doesn't treat the condition.  

 

Damiana and/or Passiflora is something im defiantly going to look into.

 

​As for disability it wouldn't be an act i know if any one of us with hppd explained our symptoms to a doctor that had that authority we shouldn't have to be put in situations that cause us extreme anxiety and crazy visuals and lack of concentration and focus plus the mental mind fuck that come with this all.

I'm not sure how other people do it but having hppd at least for me so far has been the most life crippling thing iv experienced ever... i feel like i would rather have lost a limb that have to experience this on a daily base's but of course im still only 5 to 6 month in so far so maybe it'll get to some point where i can function better in life. Or manage. 

 

It just weird when you lose a loved one for example your sad about it for awhile but you can eventually move on as the pain slowly fades... its not like you see a flashes of that person every time you close you eyes or are constantly reminded of the pain it caused when you lost the person... Where as with hppd its always there it always reminds you, it never goes away, it only gets a little better over long periods of time....

 

And i guess i do have a question where exactly you learn about the neurology and pharmacology of all of this?

 

Because see so many people on this for talking about GABA receptors, serotonin antagonist, visual cortex synaptic and neuroplasticity, ect  and i feel very intellectually inferior. When reading about it. I feel like im in the first grade compared to most people on this forum. Not to mention hppd has taken a toll on any intelligence i had left. 

 

I picked up a book "neurology for dummies" hoping to gain some insight on the matter but if you have any recommendations on any books that wouldn't be to over complicated that i can learn about pharmacology and neurology that'd be awesome.

 

Again thank you so much 

[etardnow]

^ I was a noob and still am a noob but i got obsessed with hppd and i basically stayed home all day reading the forum and doing wikipedia.

 

If its not your 'thing' you dont really have to research about it and stuff. I now get the basic gist of receptors and stuff but even if we understand it, we are all still "theorizing" that its connected. If we knew the actual problem, im sure a cure is not that hard.  

 

What my basic understanding is that our sensors(receptors) and the chemicals(neurotransmitters and such) that activate those sensors are imbalanced and or rewired to work differently. Certain EEG's show that its overactive and in relation to that, it makes sense that benzos and anti-seizure meds are commonly known to be helpful. 

 

But even with that understanding, HPPD seems to be relatively unique to each of us. Some respond more to dopamine stuff while others to serotonin (ex/ a temporary remission of symptoms after mdma use) while some are unaffected by alcohol,weed,and benzos, to some it brought on a new hell for them.

 

Imo, the best way to cope/accept/handle hppd is to understand yourself. Im still a newbie and only 3-4month in. When i first realized it was hppd(though i still have a little 'hopeful' doubt to lyme :\), i was obsessed and a couple month in, i developed anxiety and a hint of derealization.(though that faded within 2-3weeks and i also have a little doubt that it wasnt 'developed' vs a symptom')

 

One thing that made me cope well with hppd is, "at least im not blind."

 

But mines pretty mild and i dont know what to say for those with cognition problems. Believe that you can fight it off and hppd is mainly visual! 

[onedayillsailagain]

Ok great hope it helps then
And yes, I also use most things as a "vacation" rather than a treatment. Sure helps though.

​As for disability it wouldn't be an act i know if any one of us with hppd explained our symptoms to a doctor that had that authority we shouldn't have to be put in situations that cause us extreme anxiety and crazy visuals and lack of concentration and focus plus the mental mind fuck that come with this all.

I'm not sure how other people do it but having hppd at least for me so far has been the most life crippling thing iv experienced ever... i feel like i would rather have lost a limb that have to experience this on a daily base's but of course im still only 5 to 6 month in so far so maybe it'll get to some point where i can function better in life. Or manage. 
It just weird when you lose a loved one for example your sad about it for awhile but you can eventually move on as the pain slowly fades... its not like you see a flashes of that person every time you close you eyes or are constantly reminded of the pain it caused when you lost the person... Where as with hppd its always there it always reminds you, it never goes away, it only gets a little better over long periods of time....

 

I absolutely agree. I've never experienced anything more crippling than HPPD, and I've been through some weird shit in my life already. As for the doctors; I know it sucks, got me all up in a knot too, but I just asked them what the hell we were talking about anytime I lost track of the conversation. Or told them to give me a second cause I was seeing some trippy shit. And that's why it's hard to fully accept HPPD for me, because it's always there. Every second of the day, in your face. So indeed I'm inclined to believe that once it is cured, one could go about catching their breath, process what happened, be grateful it's over, grieve, etc. and move on with their lives. But without that I'm just sort of stuck in a semi-acceptance.

As for where I learned about the neuroscience and pharmacology etc.. I don't know man. Sometimes I'm writing some neuro-lingo and think: How the hell did I come to know this? But anyway, I think most of the stuff I learned was by searching. For example I would start out with the HPPD article of Dr. Abraham with the COMT inhibition, and I'd just look up each and every thing I didn't know yet, and within those also things I didn't know, too be able to comprehend the initial article. Just you know.. the internet is sometimes full of BS, so you gotta be meticulous about your sources of education. If there's a statement on wiki, there's a citation usually. Read it from the source they provide instead, and if that doesn't suffice, try searching and finding a better source.

Other than that I've also bought and rented some books here and there. One book I have is "The Principles of Pharmacology", and I believe you can also get books of a similar "The principles of" fashion, so you could find some basic introductory neuroscience books. Just one very important thing to consider is to exclude all pop-science books/articles where possible. I mean you can read them, but they won't give you an accurate description or in-depth info about how stuff works.

No worries though.. When I first got HPPD, all I knew about the brain is that I have one and that I probably damaged it. If you wanna learn, just start reading the HPPD articles and go from there. That's how I did it.. I don't remember how it went but I presume I just thought that if I would want the slightest chance of curing myself, I should get familiar with this shit, and that's what motivated me to push through all the daunting terms etc. And yes, it's quite the fucking paradox to try to understand neuroscience in an attempt to repair your cognition, don't you think? An analogy: like a one-armed man trying to make a prosthetic arm for himself because nobody else will. Not impossible, but it tends to slow any progress.

I can't recommend any books alas.. I do remember inquiring for recommendations though, but I forgot which I got recommended!
I'll check.. Ahhh yes this one is in my bookmarks (I'd love to get my hands on this): Principles of Neural Science 5th edition.
It covers a lot, and has a whole section on perception. Also, The Neuroscience of Hallucinations, and Vision: from Neurons to Cognition.
Though these are just in my bookmarks, as a "well if I happen to come upon a million bucks I'll buy these".
If you're going to invest your money in to this, I suggest the Principles of Neural Science though, because you know.. "Principles" haha.

Don't worry about comparisons mate.. At least you're motivated to learn about it, which is the most crucial step of the process. Conversely, some here don't really bother looking in to it, for which I'm sure they have their own reasons. Perhaps "Neuroscience for Dummies" is a good start, though I haven't read it. You don't want to be overwhelmed by 100 new terms per paragraph of course.

 

Anyway, everyone copes in their own way, and mine just happened to be understanding this the best that I can, so that I can have a chance at fixing it. I've spent most of last year looking into neuroscience etc. Some may call that obsession, I prefer to call it necessary. Perhaps that'll help a little for motivation haha

Cheers!

[glmelton]

No worries though.. When I first got HPPD, all I knew about the brain is that I have one and that I probably damaged it.

 

 

And yes, it's quite the fucking paradox to try to understand neuroscience in an attempt to repair your cognition, don't you think? An analogy: like a one-armed man trying to make a prosthetic arm for himself because nobody else will. Not impossible, but it tends to slow any progress.

 

These made me laugh  haha Thank you because laughing isn't something i do often these days.

 

And i do find it ironic that i spend alot of my time obsessing or focusing on my condition, what caused it, and how to cure it. Its like most people here will tell you to stop focusing so much on it and think about something else and just ignore it until it either goes away or you learn to cope with it. But me, i find solace in studying it , what and how it affects me as a person... Almost like as if someone hurt me and i was studying there weakness to plot revenge. (In our case a "cure") 

 

Because someday with the vast majority of information, people who are studying the brain, and neuro science. I believe that well will be able to find a cure within our generation and stand on the edge of the rabbit hole of hppd that we ventured out of and be able to look back at the hell we endured and give it a final fuck you and get back to our lives. But until then im going to stick with studying it and learning about neuroscience and pharmacology.

[lemondrop]

Holy shit. we're hppd twins. My onset date is exactly the same. Mine is from MDMA too. and we have VERY simular symptoms. Shutter vision.. the clear vision. so weird.