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Puppeteer's Progress Thread


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So I figured it might be a good idea to have a thread where I just generally post about everything that's been happening with my situation specifically, so as to have a solid record of my progress in one place but also to have input from others. I'll still post other threads and comments elsewhere on the site of course, but this'll help to keep me coming back and engaging with the forum hopefully.

 

Of late my mood has improved a lot, though I'm not sure that there's been any lessening of symptoms. I'd say the lack of pressure to do anything specific i.e. study/work is part of that, though doing nothing of much importance is stressful in itself... also, I'm still taking Cymbalta, and it's definitely been instrumental in my improved mood.

 

I've organised to hang out with a friend I haven't seen in a while tomorrow, which is good. Always a bit stressful to interact with people who are still functioning, but he's got mild HPPD as well and has a good understanding of how I got to where I am so he's empathetic and a good bud overall. I spent a few months completely off the social radar, ignoring any attempts at contact and so on, so I'm glad to feel comfortable talking to people again, even though I'm still very aware of the pressures that come with having largely fallen out of step with the rest of the world. I've been looking into volunteer positions and getting some qualifications under my belt so that I can seek employment soon, so fingers crossed for that working out... TAFE courses open next semester and I'd like to feel good enough to enrole in something.

 

I mentioned to a couple of people in the chat room that a doctor had been very kind and receptive to me describing my symptoms and agreed to look into Keppra... well, it turns out that Keppra's a restricted drug in Australia and I have to see a specialist to be prescribed it :( so here's hoping I land an open-minded and kind one straight up rather than bouncing back and forth like so many people wind up doing. The GP said that if she could've prescribed it she would've as well. Odd that GP's are able to hand out prescriptions for potent antidepressants and benzos here but not something like keppra :S ah well. I've got an appointment with a psych I saw for my depression issues about this time last year on the 4th of June... wish me luck!

 

After reading around I've once again decided to look into the herbal/nootropic treatment options, and I've ordered a capsule-filling machine and some powdered valerian, ashwagandha, and ginkgo. At the very least it'll give me a mundane activity to do while listening to some of the albums I've been wanting to check out, hah. Oh, I managed to get some kava shipped from the UK as well, so here's hoping it gets to me! I'm very excited to try it. Not sure if I ought to wait until after my psych appointment to try this stuff, though...

 

Symptoms at present are much the same; very troubling cognitive stuff going on, as usual, with DP/DR being the big ones - I can't help but feel that a lot of my other cognitive issues stem from them, which sucks but is also reassuring because then it'd be a two-birds-with-one-stone situation. Guess we'll see. Quite stupidly, I guess, I've partaken in marijuana a few times over the last few weeks, and today I've felt the most out of it I have in a while... Hopefully just related to oversleep. What's reassuring is that I've been able to be high without it triggering the horrible anxiety and looping, negative existential thoughts it used to... Maybe that means I'm nearing the end of the tunnel. Definitely not going to be using it again though until HPPD is far, far, far more cleared up, though. I've been back into coffee lately but I'm going to drop caffeine again too.

 

Oh, incidentally, does anyone else have trouble distinguishing between different mental states? I feel like I'm in such a fog that, for example, there's no clear distinction between being sober and high or drunk. Nor is there really a huge difference between feeling rested and tired. It's a bit concerning...

 

Finally, even though Cymbalta has helped enormously with anxiety there are definitely some troubling side effects going on so, if the psych is funny about keppra or anything, I'm going to at least ask him to swap me to Lexapro. Basically it's definitely exacerbated DP/DR, absolutely killed my appetite to the point where I only ever feel satiated or very slightly peckish - not good for a slim, growin' boy, makes me feel drowsy all the time - I woke up after 7 hours of sleep today, mowed the lawn, had breakfast, then crashed out for another 5 hours... i've been up for 5 more and am about to head off again, and has made reaching orgasm quite the challenge, which is a heap of fun.  I've heard SNRI withdrawal is the absolute pits, unfortunately :(

 

That's about it for the moment, I guess. There's definitely stuff in the future to look forward to :)

 

 

 

 

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Golly. Tiredness and feeling more dissociated than normally are definitely part of it, but I really can't help noting how much less articulate and concise HPPD has made me. Can't help but cringe after reading through anything I write at length :(

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The capsule filler arrived, last week, so I figured I'd give piracetam another shot while I wait on the valerian, ginkgo and ashwagandha powders to arrive. I've noticed a slight increase in anxiety from it, but also I believe improved awareness and alertness - good and bad at times. I've certainly been doing a lot better in Age of Empires II, haha. I'll try to take it for a month or so to see if much really happens. It was definitely a positive thing when I was taking it last year before MDMA really threw me back into the mire - after that it was hard to tell if it was making things better or worse.

 

I've also got some schisandra, gotu kola, and bacopa around as well, but I'm wary of throwing too many things into the mix. Bacopa gave me terrible brain fog when I first tried it, unfortunately, but I'd like to try it when I'm otherwise cognitive supplement free. I never noticed much either way from the gotu kola, but it'll be easier to take it with some regularity now that I've got the capsule filler so maybe I'll give it another try. Would definitely be nice to take the edge off the piracetam angst, so maybe it in combination with valerian will do the trick.

 

Also, I ordered some melatonin after reading about the numerous and profound benefits it's been found to have - I'd only heard about its usefulness in insomnia before, but it's also a powerful antioxidant, is instrumental in memory and learning processes, and shows promise in treating/reducing Alzheimer's related brain damage, depression/SAD, and migraines.

 

The kava arrived unexpectedly early, and I've tried it a couple of times. It's hard to pinpoint exactly the sensation - it's definitely there, and reminiscent of a mild, less euphoric and disorienting drunkenness. Doesn't seem to do much for sociability, unfortunately.

 

I'm wary of how easy it is to spend money and pop a few pills instead of putting real, focused effort into changing one's life, so I'm working on bettering my sleeping habits and getting back into reading, as well as looking around at gym memberships that are covered by my private health care.

 

My psych appointment is ten days. Got my fingers crossed!

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Hmm, no, piracetam has definitely caused my anxiety to flare up significantly. This is the second night in a row that I've felt significantly, painfully anxious. I'll try taking more choline and skipping the evening dose over the next few days, and if things don't improve I'll cut it out.

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I applaud you for retaining your eloquence through all this. I can definitely relate to social isolation factor.. It's tough.
And don't get me started on medical regulations, haha.

Regarding the noots you're taking:
Ginkgo is ok, just make sure you don't use a cerebrovasculair constrictor concurrently.
Valerian... hmm not much words to spill over that. Generally accepted as useless.
Ashwagandha could be helpful, haven't tried it myself. Aiding in cognition and having anxiolytic activity, I could see how you came to your choice.
Just remember that Ashwagandha is a GABA agonist, and hence could cause GABA downregulation (which you'd want to avoid at all costs basically).
Cycling Ashwagandha on/off is recommended. Cycling between Ash and nothing, or between Ash, another anxiolytic (Gotu Kola is a good one for this, also a GABA agonist), and nothing, is common.
Kava Kava is definitely a plant to be grateful for. As many anxiolytics merely relieve anxiety, that's really all they do. I've found that in addition, Kava also promotes calmness, which is different. Just remember that Kava can interact with certain anti-convulsants such as Keppra and Clonazepam.
Also, initially the effects may seem too subtle or completely absent. With Kava a person can experience reverse tolerance, which you need to break through. There's plenty of information available here.


As far as weed goes: try to just not smoke. Makes your life a lot easier. If you do, forgive yourself and regard it as a reminder.
Trouble between distinguishing mental states: Yes, very much. There's a strange disruptance of the normal seemless (sensory) experience, which can manifest in a plethora of unsettling ways. I would call it more of a ubiquitous fluctuation.

Now then, the loss of articulation is plain and simple freaking horrible. I experience that too. Came to the theory that the strange body feeling (DP) is partly to be blamed for this. I've also noticed how, at times, language can seem like such an alien vessel of conveyment. Hard to grasp, much less to use. Ineffability comes to mind, and no description seems to adequately portray what you're experiencing. Or at least, in my case.

Coming back to noots again.. Bacopa has been tested for acute effects. Turns out, there aren't any. It takes 12 weeks (!) to take effect, but when it does, apparantly the effects are quite the profound experience. I have this one written down as well for future augmentation. I recommend you give it an honest shot, at the appropiate doses, be it the brainfog subsides. Remember, sometimes things are just coïncidental.
If you want something pro-social, Phenibut has worked for me in that area. But be sure to read up as much as you can on the stuff, there's a few "guidelines" one should adhere to when using it, for it to remain safe.

I've never read of Piracetam being useful for HPPD, quite the opposite actually. For me personally, it made no difference.

 

Some other things to consider are: Melatonin (for sleep), L-theanine (light anxiolysis and GABA receptor upregulation), Modafinil (instant cognitive enhancement.. again: do your research)... hmm can't think of more for the time being.

If you could give a succinct prioritized discription of what you hope to achieve with nootropics/supplements I might be able to give more specific recommendations. Sorry for the chaotic structure of this post, it's late and all.

I feel like I'm forgetting a lot, so if I think of anything more that could help, I'll add it later. I have no doubt you're one to investigate, however I must emphasize to always do diligent research into supplements/nootropics/pharms before taking them. Especially their interactions, as even nutraceuticals can interact in a harmful way.

Let us know how things go :) Ohh! Lastly, if Keppra turns out to be a no-go, Lamotrigine is the next best thing to try.

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Hi there. I feel like I ought to come here more but the lack of activity is discouraging; however, thinking about it more, I realise that the best way to promote activity is to participate more yourself, so I'm definitely going to begin posting more regularly.

 

Thanks so much for the lengthy response, onedayillsailagain. Incredibly concise and informative. Unfortunately it's quite late at the moment so I'll respond at length when I get the chance. There are just a couple of things I'd like to share.

 

First off, the psychiatrist appointment went incredibly well. He's such an understanding, genuine guy (and ridiculously attractive haha) and although I wasn't immediately prescribed Keppra I think it went as well as I could've realistically hoped for - It seems like it'd be odd for anyone presenting with this relatively rare condition, with numerous symptoms which are common to many other diseases - to be prescribed an experimental treatment on the first visit to a decent psychiatrist.

 

I took a bunch of information: the DSM-IV's definition of HPPD, some excerpts from Wikipedia, the summary of the study of levetiracetam's efficacy in HPPD treatment, and a bunch of informative posts from the forums, particularly those related to Keppra.

 

He was curious why I'd stopped seeing the psychiatrist he'd referred me to about a year prior, and I explained the poor rapport we had and that though she's likely very good for other types of people, I found her difficult to talk to, anxiety-inducing, and condescending. He seemed to genuinely appreciate my reasoning and got straight into finding out the important stuff.

 

(Feel free to skip over here, I just thought it'd be beneficial for myself and others to have a pretty in-depth summary of my experience with a psychiatrist - I know I thought a hell of a lot about this appointment, and fretted about having one of those hellish, unproductive responses some people have received. It's good to know there are sympathetic, open-minded psychiatrists outside of the seemingly far-less medically conservative US.)

 

I described how my situation had evolved over the past year, and he took notes about my state of mind, family/living situation, lifestyle, routine, hobbies, and the current state of my depression/anxiety, and asked thoughtful questions. I comfortably brought up the topic of HPPD and he was instantly receptive. I didn't tell him about the more "exotic" psychedelics I've used - I feel the like relatively rare substances I've used (which I was only able to acquire through an international anonymous trading website), i.e. my past use of 25-I-NBOMe, MXE, and 2C-B, are only likely to increase skepticism and judgement of potentially-dangerous, illicit substances without providing worthwhile additional information; however, that might be presumptuous on my part. I also didn't mentioned my occasional experimentation with various mild nootropics. I told him two LSD trips had triggered milder, primarily-visual symptoms, and two MDMA trips exacerbated them significantly and caused great cognitive dysfunction.

 

I described my symptoms, explained that though the visual disturbances were irritating it's the cognitive dysfunction that's most debilitating, and detailed my experience with derealisation and depersonalisation. I was also certain to describe my issues with focus, memory, and disordered thoughts.

 

He said that while it sounded like I had researched thoroughly and was well-informed, it would be reckless to not be as certain as possible before proceeding with diagnosis and prescribing medication. He said that an MRI would be necessary to rule out tumours and so on, but when I mentioned that I'd undergone an MRI, CT, and two EEG scans when I had that hyponatraemic seizure in January - at the time my symptoms were much the same - he said they'd be adequate. He still wants to have a look over the scans and blood test results, just to be certain from a psychiatric perspective; he also wants to be able to contact the other medical professionals I've seen if necessary, so I signed a release form for that. He said it'd be useful to speak with my dad as well, though was careful to take note of the aspects of my situation that I'd prefer to keep from him. Oh, finally, I asked if he'd be willing to look over the notes I'd brought and he gladly accepted.

 

He mentioned that a primary concern is the possibility that I may be experiencing a "prodrome": basically the state of reduced-function that precedes psychosis. Though I'm not experiencing many of the typical pre-psychotic symptoms - e.g. paranoia, true hallucinations, and so on - things like thought disorder are also associated with diseases like schizophrenia. He told me to acquire a high-dosage Omega-3 supplement as it's been shown to greatly reduce development/worsening of pre-psychotic symptoms and generally promote better functioning (relevant page: bit.ly/11pv2Tc).

 

We discussed my experience with Cymbalta, and I mentioned that I was experience a few frustrating side effects - most troublingly reduced diet, drowsiness, worse DP/DR, reduced sensation - though it seemed wise not to press my interest in being put back on typically more HPPD-friendly Lexapro which I had a relatively successful experience with pre-HPPD, and he concluded it'd be better to retain Cymbalta for the moment given it's definitely tolerable, and to tend to the more important things without having to worrying about tapering, withdrawal, waiting for a new antidepressant to begin acting, etc.

 

Anyhow, to conclude, he told me he'd track down my blood test results and brain scans, talk with the specialists I'd seen previously, and consult with me in a fortnight - the assured me that was the shortest realistic window for him to be available and ready to provide further treatment options. He acknowledged my wariness of being bounced between specialists given the vast lack of familiarity and knowledge of HPPD in the mental-health professioned and concern about fruitless delays and costs. He acknowledged this and said he'd only send me to another specialist if he thought it were truly necessary in his professional opinion. He said something I really liked just as I was leaving: "In the end, we mightn't be entirely sure what the nature of your illness is and of its cause. Then the best we can do is to try the medication that seems most applicable and see."

 

Finished description of psych appointment)

 

I'm feeling pretty good at the moment, but so much happens in life that it's frustratingly difficult to know exactly what's responsible for the improvements.

 

Since regaining the confidence to contact my friends I think my spirits have definitely lifted up. It's surprising how much you're affected and changed by relative isolation without realising it at the time.

 

------might stop here because it's much later than i realised and i've gone on more than i meant to. i'll update soon.------

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Hi Puppeteer.

I will respond at length when my mind is more in place again.
Perhaps by then you will have replied more lengthy as well.
However, I'd just like to say that your views on the activity on the forum are good.
I look forward to your participation!
I myself sometimes find it discouraging, but indeed: One needs to be active themselves to promote this.
Also, there have been several new members having trouble with being approved, and as such there should be a spike in activity once they get through.
There are some (quite a few actually) members who remain active despite this, and some contribute to research.
I would name them, but wouldn't like forgetting to mention anyone.
Those that don't actively engage in research are equally interesting to talk to, and on many days make me laugh.
One could say that being too active on the forums can make you focus too much on HPPD.
Views differ on that though, and I actually find it one of the few things that puts my mind at more ease, whereas doing other things (or nothing) can make me far more aware of my symptoms, for I notice how dysfunctional I have become. So with that said, thanks everyone!
I quote: "Obsession is such an ugly word"
I find it more a necessity to spend enough time on HPPD, as how else does one expect to recover from this, moreover help others in doing so?

Anyway, these were just some personal views on the subject. Like I said, I'll respond to your situation later, most likely tomorrow.

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Thanks for sharing your thoughts and descriptions. For what it's worth, I thought your posts were very articulate and easy to read and take in.

 

I think organisation and good sleeping patterns are very beneficial regardless of anything else that is going on, so if you can get that side of things sorted out I think it will be very helpful.

 

As onedayillsailagain pointed out a lot of the lack of activity is due to problems new users are having getting their accounts validated. Hopefully this can be sorted soon and the forum will become a bit more active.

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Hey. Time flies - I meant to get back here earlier but in addition to being a bit busier with family and friends I experienced an unpleasant spike in symptoms thanks to indulging in a cannabis brownie mid-way through the week that kept me pretty down. Unfortunately with all the positives of increased social activity comes the temptation of drugs as social lubricants; I figured that since I haven't especially noted any lasting issues from occasional smoking/vaporising in the past couple of months an edible would be okay, but I guess the comparably stronger/longer/more psychedelic nature of the trip was too much.

 

It's nothing too bad and I seem to be getting back to my baseline state, but it's interesting to note just how much worse HPPD can be/has been. As thing's in my case have gotten, in a lot of ways, better, it's been tough to really note how my life has changed because of how gradual the process has been, and so it'd seem I've taken a lot of the positives for granted. For the past few days DP/DR have been worse, I've been a lot less optimistic, that perpetual feeling of impending danger/doom that came with the anxiety was back a bit, and so on. No fun, and definitely the final nail in the coffin as far as my weed use is concerned.

 

Regarding supplements and nootropics: presently I'm taking gotu kola, ginkgo biloba, ashwagandha, melatonin, fish oil (still waiting on the high-strength stuff to arrive), a multivitamin, b-complex, zinc, iron (once every few days), and of course the Cymbalta. I also drink a lot of white tea because I really enjoy it. Quite potentially overkill, but I really want to as certain as possible that I've got diet stuff covered.

 

As for the nootropics, I'm yet to really notice anything especially apparent: prior to the brownie it seemed like I was a lot more sociable and talkative than I have been for a while, but it's always difficult to definitively attribute that to anything. I'm taking two capsules of gotu kola three times daily, two ginkgo twice daily (none at night because it seems to make me less tired), one ashwagandha before bed, and 1-2mg of melatonin. Planning to take a two-day break from all of them once a week. I'm looking into l-theanine, magnesium, and NAC because of the success people have reported with them here, but I want to be certain they won't have any negative effects given what I'm already taking and that they'll definitely be of use given that the cost of this stuff adds up and it gets a bit odd to be swallowing so many pills of a day, hah.

 

Yeah, I'm definitely wary of giving HPPD too much attention through activity here and research and so on, but the impact it has on my life is so damn pronounced that even if I were to somehow ignore it and just "get on with things" I feel I'd likely have a very unpleasant time of things. As such, I figure a concerted effort to combat it as best as I can, at least for a while, is the best option, because the sooner it's gone (or significantly reduced) the sooner I can live properly. Of course, that might just not happen, or only happen with time, so once I've exhausted all the viable options I suppose all I can do is just move on as best as is possible with HPPD as a ~part of me~. Until then, again, I'll try to be as active and productive here as I can.

 

Thanks again for your responses guys :) Hope all is well.

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Well, after talking to some friends for a bit and takin' it somewhat easy I'm definitely feeling a lot better generally. Just got my high-strength fish oil, eager for my next psychiatrist appointment in a week, and put in an order for a small amount of NAC, magnesium citrate, and l-theanine. Of course I'll post about my experiences with them here once they arrive. I'll be available over the weekend to respond to other threads and such! In the meantime I wish the best for anyone reading this.

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Just a quick little post since I can't sleep: it's 12:30AM on the 17th, so it's just gone the day prior to my follow up appointment. I've been taking the fish oil (somehow still very unpleasant despite being deodorised and fruit-flavoured), spending time with friends, sorting out education stuff for this coming semester and so forth. I'm desperately hoping something comes of tomorrow. A prescription for keppra would be absolutely ideal, but I can't help but feel that there's a ways to go before that's a reality. Utterly frustrating given that it might not do anything and is so bloody safe. Even if it's a lacklustre appointment, it's another step in the process and there's always something to be said for that. I feel like I'm in really good hands with this guy, so I'm as optimistic as seems realistic. Anyhow, no matter what happens, there are always the other avenues of treatment to explore, and the NAC, magnesium and l-theanine should arrive soon enough so it won't just be another week of going through the established motions. Sigh. I just fucking want to be normal again.

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So I just found out I probably used a synthetic cannabis product a while back, most likely what's sold as "Kronic", without even realising it. Once when I bought some weed I got a little baggy of fine plant material along with it, and being unfamiliar with synthetic cannabis I just assumed it was clippings from the grower's crop. I saw some pictures of Kronic today and it looked very similar. Damn. Luckily I didn't wind up in a full-blown hellish trip like others have spoken about -  though my memory's foggy I seem to recall it feeling like a really mild cannabis high, which cemented the assumption that it was just shake or something.  Given the nasty experiences some people have reported with spice and HPPD I really hope it didn't have a role in fucking me up because it seems like spice-related HPPD is far more resistant to treatment than other kinds, but it's hard to be sure. I guess my case is too muddy to really concern myself with it much. Still, damn.

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Hey Puppeteer!
I planned to respond earlier as I said, but you know, withdrawing behavior and such. I'll skip commenting at length to your post about your psych appointment, but it sounded like it went very well! Well, aside from the fact that he told you you might be pre-psychotic. When I shaved my head to do my tDCS experiments, my shrink told me that many psychotic patients shave their heads. He wasn't really the re-assuring type. Come to think of it, he was a downright fool. Even though it may feel like a prodrome (thought they called that a "fugue state"), I sincerely doubt you're in one. Anyway, one thing to know is that time totally screws up when you're psychotic (e.g. you look at the clock, it's 3:30, you blink twice and it's 4:15). At least, so it was IME.

Anyway, regarding the nootropics: probably a bad-ass combo you got going there.
Melatonin can be upped if you feel the need; there's no lethal dose.
Ashwagandha can take a while to have effect, and you might consider altering dosage (schedule) if no effects are apparent after a while.
By the way, Citrate is not the most preferable form. Malate is. But either way it's better than Oxide.
I wouldn't know how well all of those combine with Cymbalta though.
And not all spice has synthetic cannabinioids in them, so no reason to worry that much. Unless you're absolutely sure it was Kronic. Besides, some people just sell grindings as well. Anyway, unless your symptoms took a long-lasting turn for the worst, there's little to worry about.

The impact it has on my life is so damn pronounced that even if I were to somehow ignore it and just "get on with things" I feel I'd likely have a very unpleasant time of things. As such, I figure a concerted effort to combat it as best as I can, at least for a while, is the best option, because the sooner it's gone (or significantly reduced) the sooner I can live properly.
I just fucking want to be normal again.

I think most, if not all, of us can relate to this in numerous ways. I for one sure do.

And it can be very frustrating to sit there knowing that all that person has to do is sign a little paper and you're good to go for Keppra.
Makes you feel very... dependent. Anyway man, hope you get it prescribed today!
Let us know how your follow-up appointment went.

Best wishes.

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Well, another frustratingly futile appointment down, and it's hard not to feel put out. Despite having conservative expectations it's impossible to completely ignore the possibility that /this could be it/, and it sucks to have that extinguished time and time again. Basically he said all my brain scans were fine and so his primary concern came back to prodromal psychosis. He dismissed HPPD due to being unfamiliar with it and revealed that perhaps he hadn't considered my material too through referring to HPPD as "it may well be this post drug perceptual...uhh persistent... Thing" and said keppra was off the table. Of course, this left three options: just keep on truckin', get a second opinion, or a low-dose antipsychotic. Fucking brilliant. Naturally I'm awaiting his call about seeing another psych he recommended. This time round I'm going in guns fucking blazing I can't stand the sluggish bureaucratic close-minded bullshit of popular psychiatry. How on earth it passes for an okay system to channel people with dire mental health issues through is beyond me. That they as a whole, after forcing intelligent but unwell people to exhaust precious time, money and energy navigating through their endless hoops only to wind up right where they began, would still insist on being the sole upright authority of psychiatric care and dismiss self-medication as reckless is just laughable.

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Well, another frustratingly futile appointment down, and it's hard not to feel put out. Despite having conservative expectations it's impossible to completely ignore the possibility that /this could be it/, and it sucks to have that extinguished time and time again. Basically he said all my brain scans were fine and so his primary concern came back to prodromal psychosis. He dismissed HPPD due to being unfamiliar with it and revealed that perhaps he hadn't considered my material too through referring to HPPD as "it may well be this post drug perceptual...uhh persistent... Thing" and said keppra was off the table. Of course, this left three options: just keep on truckin', get a second opinion, or a low-dose antipsychotic. Fucking brilliant. Naturally I'm awaiting his call about seeing another psych he recommended. This time round I'm going in guns fucking blazing I can't stand the sluggish bureaucratic close-minded bullshit of popular psychiatry. How on earth it passes for an okay system to channel people with dire mental health issues through is beyond me. That they as a whole, after forcing intelligent but unwell people to exhaust precious time, money and energy navigating through their endless hoops only to wind up right where they began, would still insist on being the sole upright authority of psychiatric care and dismiss self-medication as reckless is just laughable.

Sigh. I'm pretty frustrated. Again, oneday, thanks so much for your response. I'll respond specifically soon

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 I can't stand the sluggish bureaucratic close-minded bullshit of popular psychiatry

Yeah I think you're not alone in being extremely pissed off (seriously, that BS got me furious to the point of almost breaking an elevator.. long story) about that.

I think you'd do best in getting a second opinion.. But I don't know what country you are though (might've forgotten).

Syntheso posted a good UK referral recently, and I myself found an actual HPPD specialist in the Netherlands (who's been amazingly helpful).

But it's hard both logistically and financially if you're not already in the country. Some European insurances cover foreign treatment however, so who knows.

As for the US, well there's always Boston I believe. Australia seems to be the hardest to get help (strict pharmaceutical laws), but there might be some recommendations swimming around here as well.

Anyway hope you can endure the "how the hell is it, that my damaged brain works better than your healthy one?" phase with the psychiatrist(s).

If you could post your country, people might be able to recommend professionals. No worries about replying, I haven't been all that disciplined about that either.

Again, best of luck!

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I live in Sydney Australia and it would be amazing  to find out if there's a psychiatrist in the city who's known to be more open-minded and who has prescribed Keppra/sinemet/so on for HPPD in the past.

 

I wanted to ask if you have any thoughts on the possibility of downregulation of natural melatonin production caused by supplementing large dosages for long periods of time? Given that some people stress taking less than 1mg and some swear by up to 10mg it's a tricky thing to be taking. The capsules I got are 10mg so I've been opening them up and eyeballing my evening dosages.

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Sorry mate, can't help you there :(
However I remember looking up that melatonin issue, cause I had the same concern. I remember the answer being "no", but don't quote me on that. It should be safe to take those amounts without down-regulating Melatonin receptors or production, but again, don't know for sure. I think it's quite harmless though.

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Puppeteer,  your brain scans would be normal if you only had HPPD.  This is a known fact.  But given that, doctors don't know what to do when they are or what to say. The one scan that would show something related to HPPD is the qEEG. tt needs to be done and analyzed by someone who knows what rhey are doing.  Mine was done by some such person and showed the HPPD results.  Keppra helps some and many can not take it due to adverse reactions.  I am one of those people.  It is possible that that an online pharmacy can supply you with it.

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Hey, yeah I'm aware that the more common brain scans aren't able to detect abnormalities associated with HPPD - he was more concerned about tumours and such I believe. Pretty silly given that any apparent abnormalities would've undoubtedly picked up when the neurologist analysed the scans after the seizure, but he said that it was important to look at them from a "psychiatric point of view", so there you go. I'm afraid in order to get a qEEG I'd have to first have a specialist outright acknowledge my HPPD and be willing to treat it, which seems unlikely. Thanks for the suggestion but due to costliness and the dubiousness of such businesses online pharmacies aren't a route I'm comfortable pursuing. Frustrating the amount of people out there from this forum with excess Keppra just lying around since they didn't respond super positively to it. Be nice if it were something you could comfortably give to a fellow sufferer out of good will, but if it were I suppose it wouldn't be necessary to acquire a prescription to get it in the first place.

 

Anyhow, just another little update. I sent my psychiatrist a lengthy e-mail stating my reassessed stance on the situation, which I posted here: http://hppdonline.com/index.php?/topic/2013-an-e-mail-ive-sent-the-psychiatrist-who-was-reluctant-to-acknowledgetreat-my-hppd/. Hopefully he'll read it and consider it open-mindedly, but otherwise I guess it's the good old psychiatrist lottery again for me.

 

The NAC, magnesium, and l-theanine haven't arrived and the weekend's come. I'm bummed because I've got a big family event coming up that I'm obliged to attend and I was hoping they'd relieve some of my symptoms so as to deal with that better - very stressful even if I didn't have HPPD, hah. Thankfully my good friend has agreed to come along with me which'll make it much more tolerable, and then we'll be able to hang out for a while afterward. Still, it'd be nice to give the new supplements a shot as soon as possible.

 

I'm still pursuing some TAFE courses for the upcoming semester, which has proven to be difficult because the damn head teacher of the Music course won't respond to my emails or voicemails. I should be able to fall back on web technology, but that's less appealing than music, and either course is quite frightening/anxiety inducing due to all the related responsibilites that I've been relatively free of for some time. I'm determined to follow through with it, though.

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Hmm, a little supplement update I guess. I've decided to discontinue gotu kola for the moment, and halve my ginkgo dosage. I stumbled upon ScienceGuy's thread on Longecity about treating anxiety effectively where he discusses the long-term issues with GABA down-regulation caused by GABA-receptor agonists, which warns against gotu kola as a long-term anxiolytic. I've been having my doubts about it anyhow as it seems to be causing some uncomfortable physical restlessness and rapid heartbeat. Not great for sleeping :\. I'll continue with ashwagandha due to the numerous benefits associated with it. though will be certain to be strict with cycling given the ambiguity of its interaction with the GABA system.

 

Discussions within the same thread have increased my concerns about Cymbalta, with numerous well-referenced posts condemning SSRIs as effective treatments for anxiety and depression. The numerous unpleasant side effects I'm experiencing make the lack of anxiety seem not at all worthwhile. If my reaction to NAC, magnesium and l-theanine supplementation as far as general mood and particularly anxiety go is positive, and if psychiatric acknowledgement and treatment of my HPPD is further delayed, I think I'll begin to taper off it. I'm sick of the worsened DP/DR, the general emotional and physical numbness, the all-but non-existent libido, the iffy vision, and so on. I'll go slowly but I think a month is a reasonable window. If things get bad it won't be hard to secure an Escitalopram prescription, the only SSRI recommended by ScienceGuy/numerous other members of the Longecity forum, many of whom are well-deserving of trust and respect in this regard. I've had a successful experience with Escitalopram before and in addition to my current/future nootropic regimen and examined diet I can forsee a reasonable smooth experience being likely. We'll see though, naturally I'll be giving this a lot more consideration as things become clearer.

 

Not much to report with melatonin. I'm sticking to approximately 1-2mg per evening, but the physical restlessness/rapid heartbeat I mentioned above has made it difficult to really note its usefulness, not to mention that I'm trying to train my body to sleep hours earlier than I generally have been for a while.

 

Also, once I've got a fairly concrete regimen/stack in place I'm keen to give Bacopa another shot at a much lower dose than I had issues with a while back, given its potential for substantial memory improvement, sustainability, and potential to balance out the possible GABA agonism of ashwagandha.

 

Gosh this nootropic stuff is interesting. Really must make a post on Longecity to ascertain I'm not at risk of contraindications or redundancies with the supplements I'm taking/will be taking.

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My neurologist had confirmed that I have HPPD with Dr. Abraham.  You may be able to get a confirmation Dr. Lerner by email.  I had many test before but the conclusive test was the qEEG which showed symptoms of HPPD.  I tried Keppra but like many I could not take the med.  There were many also that it did not work.
Who is WalpoidaCally and why is he posting these advertisements?  I though David go rid of all the spammers.

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Well, to be brief, I've got an appointment with one Professor Ian Hickie, who seems to be an incredibly intelligent and philanthropic dude, in just under a month's time. He's been involved in the following studies:

 

  • The effect of stigma and discrimination on the outcome of mental disorder
  • Neurobiological investigations of substance use and psychosis.
  • Understanding and preventing mental health difficulties in young Australian men 
  • Circadian and sleep wake disturbances in mood disorders

 

A few of those makes it sound like he may be a sure bet. Here's hoping. Naturally, that email I sent didn't yield a very helpful response, but I'm pretty interested in seeing Professor Hickie.

 

I can't accurately pinpoint what improvements I've experienced, but I am feeling all-around a lot better since I've started taking NAC and magnesium. I'll try to be more in-depth in a bit. Also, l-theanine has been amazing for getting to sleep and is generally just a very pleasant thing to take; I'd love to hear how it helps others with their anxiety.

 

Got into the music course I applied for; 17 days until it begins. Eep.

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Gooooooosh. I really need to sort out my sleeping schedule, it's definitely not productive to be up this late. I'm good at palming it off/making excuses but it's a real step towards generally feeling better and the inconvenience of sorting it out is more than worth the benefits that come with it.

 

Anyhow. I tried splitting my Cymbalta dosage into 2x30mg (once morning, once evening) instead of 1x60mg (once morning) and the past few days on that schedule were fucking awful. It just sucks to be constantly reminded of how fragile a thing the human experience is when these delicate neurological processes that dictate what I think and feel and do and say are thrown slightly off and everything goes to shit. That was without even lowering the dose, just splitting it up. I figure if I'm going to taper safely it'll have to go something like

 

50mg + 10mg > 40mg + 20mg > 30mg + 30mg > 30mg + 20mg > 20 mg + 20mg > 15mg + 15mg > 10mg + 10mg > 5mg + 5mg > 5mg > 0

 

with adjustments as it happens. that's gonna take a bit of fiddling around and more than a month though, so I'll definitely leave it until after I'm settled with TAFE and have seen this new psych and so on. But damn, the SNRI withdrawal is exactly what it's been made out to be. Gosh it just seems legitimately ridiculous that these are part of the frontline of typical treatment for depression - but Big Pharma bashing belongs elsewhere, ha.

 

As far as other stuff, I'm doing okay. I got a couple bigger concession payments than I was expecting and kind of irresponsibly bought a few more supplements. It's a silly fascination but man when there's all this promise of all-but risk-free potential for improvement of this crap and it's all so cheap it's an eeeeeeeeeasy pitfall. I'm planning to be responsible/rational with it all, though; I'll probably have a few waiting in the wings to add on or swap out as I go through them. Anyhow, I got small quantities of:

 

Rhodiola Rosea

ALCAR

Inositol

Aniracetam

Adrafinil

 

And of course I'll discuss my experiences as I go through them on here as best as I'm able.

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