A generic bitch

[Syntheso]

(the point of me reciting this rather uninteresting story comes at the end.. )

I've been back at my family home the last few days, my sister's birthday today so they wanted me to be around. I made myself available. Normally I live on my own. I find it easier to cope like that - suffer in peace, not having to explain myself. Last few weeks, particularly the last few days, have been pretty bad, not sleeping well, very foggy etc. Today they were preparing for my sister's friends to come over and drink before they went out. I hardly slept last night and woke up feeling unusually horrendous, completely brain-dead. Couldn't get my mind round a thing. I'd blocked my ma's car in, was asked to move it, but still in PJ's like a zombie.. last thing I wanted to do was set foot outside. I emphasised that I really did not want to do that, so got angrily huffed at and my ma did it and left. Later, asked to hoover, for the life of me (and this is really particularly bad for me-normally I can get my head around even this!), seriously my head did not want to do anything other than.. well, nothing (and by this, of course, I mean I had every desire in the world to do a multitude of things but no feeling of ability or comprehension). Anyway I did not hoover, and was huffed at again. Okay, not doing these little things is pathetic. It must look particularly pathetic. I do not normally feel that shit, today I did. I said that to my family without being specific about HPPD but implied it. Still the attitude towards me, just like I was being f-ing lazy.
My favourite bits... Before my sister ended up doing the hoovering, she came into my room and told me I should do the hoovering because she had to get ready to go out (what kind of reason is that anyway?). 20 mins later (the amount of time it would have taken), she's been sitting in the other room having a chat the whole time.
I apologised to my mum later for not being so helpful today, explaining I was having a really bad day. I was met with the sort of 'we all have bad days, we still do stuff' sort of thing. Oh, great. From someone who supposedly empathised with the situation. Tell you what, if someone 'normal' wants to trade all their 'bad days' for my 'good days', I'd snap that up in an instant! 

Oh, and best bit, why I am actually taking time to write this. My sis et al went out clubbing, I stayed at home for obvious reasons. I actually managed to fall asleep when I wanted... yay!!!!! First time in a week ?
But er, oh, what, phone's ringing ? 'Oh hey yeah can you just quickly let us in'?
'Cheers... good night...'
And yes, that good sleep is dearly missed now as I toss and turn, I see the smoke swirl around me in this dark room - quite literally.
And no doubt this 'quick waking up' will guarantee some worse days ahead.
 

Terribly sorry for not giving you 15-20mins of my time today, but, well, you got a lot of time off me now! Hours, days, weeks?!

Enough adolescent-sounding whine. The point (that we all know); how utterly disparate our lives are. With the fragility / sensitivity of our minds.. the flimsiness of some things to others can be a huge deal for us. Peoples' attitudes.. most people have no clue even if they claim to empathise with you! Oh Muse, Muse!


I realise I sound pretty morbid.. I am still smiling. I start medication tomorrow so particularly smiling. 

Wishing you well.

[Jay1]

These are the sort of occasions i keep Klonopin handy for. It's a godsend for things like family events.

 

Before i found that magic bullet, i had many days like the one you just described.... I knew i should be helping out, being social etc... But this shitty illness put a stop to that and it led to resentment of those around me, who seemed to have it all so easy.

[Syntheso]

These are the sort of occasions i keep Klonopin handy for. It's a godsend for things like family events.

 

Before i found that magic bullet, i had many days like the one you just described.... I knew i should be helping out, being social etc... But this shitty illness put a stop to that and it led to resentment of those around me, who seemed to have it all so easy.

Mmm. I have an arsenal of benzos, but I was doing a 2-3 week control before I go on meds later today. Not that I wasn't allowed but to make the control as realistic as possible. I haven't tried Klonopin, I might look into it.

 

[onedayillsailagain]

I can relate to this. Today my mother complained rather endlessly about my lack of efforts in the household. Firstly, I literally cannot see any dust or residue, so to me everything looks pretty clean. Combined with a lack of perception, (and a contrast between my higher threshold of chaos, and her, in my eyes suspected, OCD), that leads to me not noticing the state the apartment is in. Thirdly, my memory is such crap, that she can ask me in the morning to clean something up, and in 5 minutes I'll have forgotten it. Lastly, shopping for groceries just seems like a needless torture, and thus I avoid it. Somehow it is really hard for people to empathize with HPPD, despite claims that they do. Alas, this leaves you portrayed as a lazy delicate flower, and can make you feel like so, if not more incompetent.
Ultimately, with me at least, this leads to utter annoyance and an even greater distancing to people.. Suddenly the lack of insight of the majority of people is emphasized, along with the tendency of most people to blame and degrade others for things they dislike. Makes you feel very unwanted at times.

Just one of those things to add to the list of what must be endured, I guess. The occasional (semi-)morbid portrayals of daily annoyances, I find, is warranted. Sure beats vandalism or other similar outings

EDIT: I guess you can say, that HPPD is almost like survival.. Main goal is to eat, sleep, and live another day. Sounds pessimistic perhaps, but I experience it as such.

[Jay1]

Mmm. I have an arsenal of benzos, but I was doing a 2-3 week control before I go on meds later today. Not that I wasn't allowed but to make the control as realistic as possible. I haven't tried Klonopin, I might look into it.

 

 

Cool..... if you can keep your usage down to 1-2 pills a week.... You can use them for life as magic bullets for these occasions (without running the risk of addiction and tolerance)

 

I sometimes even have 1-2 weeks taking them every day.... Then go cold turkey for 1-2 weeks after, to make sure it is all out of my system.

 

These pills have completely changed my life.

[Syntheso]

Cool..... if you can keep your usage down to 1-2 pills a week.... You can use them for life as magic bullets for these occasions (without running the risk of addiction and tolerance)

I sometimes even have 1-2 weeks taking them every day.... Then go cold turkey for 1-2 weeks after, to make sure it is all out of my system.

These pills have completely changed my life.

Yeah I generally take 1 a week.. ones with long half lifes (Lorazepam has been the most effective for me from what I've tried).. the effect, as you know, helps for quite a few days. They are indeed a miraculous thing.

Not sure if you've read this account of mine elsewhere here.. but a few months ago when I was having a particularly awful evening, couldn't sleep, head pounding, full blown strobey visuals.. I had also been having a bad week.. I couldn't get my head around doing anything.. my flat had crap allover the place, unwashed dishes etc everywhere.. really grim.. I just really couldn't hack shit that week.. At the apex, this bad night.. I took 4mg Lorazepam, at the time with no tolerance.. when it set in, my visuals went entirely. And despite being a bit too relaxed for day-to-day life (I suppose there was a recreational aspect to it too), my cognitive abilities suddenly came back to me.. I cleaned the place up real quick and got on with some stuff I'd been meaning to do for a while. Serious magic bullet! For obvious reasons I don't take that kind of dose regularly and now with a bit of tolerance it doesn't entirely remove the visuals.. but still, that it did have the ability to remove my intense visuals entirely is just incredible. Man, I miss that clarity! Imagine closing your eyes and just seeing black, nothing else.. that would be the life!

Do you just use Klonopin or other benzos? Would be good to hear your experience of different benzos and what symptoms they alleviate best.

[Jay1]

I've used Klonopin, Xanax and Valium. I find Klonopin has the most benefit, but might ask about lorazepam. After around 4 years of use, i still have little or no tolerance and can get a 60-70% reduction is visual issues, trippy thoughts (dp/dr) and anxiety. I once tried 4mg of Klono and was pretty much free from visual issues, like you, but i was like a zombie.

 

The fact that these meds vastly reduce visuals and trippy feelings for most of us sufferers gives me hope that, one day, the medical community will find something that works in a similar way, yet doesn't have tolerance/addiction issues.

[Syntheso]

 

I'll look to see if I can acquire some Klonopin. I'm not a big fan of Xanax.. makes me feel completely crazy. That's great that after four years of benzo use you are still able to have success in alleviating your symptoms and no addiction. Are you using any other medication like Keppra or Sinemet?

 

It's a matter of time before they discover something as you describe, I am sure.

Actually onedayillsailagain recommended Tofisopam as a novel benzo similar to Lorazepam but seemingly without so many of the side effects associated with benzos. Perhaps you've heard of it. I've got some in my flat, I have yet to give it a try.. think I'll try that soon and report back. Quote from onedayillsailagain in another thread;
 

Tofisopam fits the description of the benzo you describe (lorazepam), and is a unique benzo in its MOA. Enhances cognition (mildly), is anxiolytic, no reported addiction, and (could be wrong here) does not downregulate GABA. It is interesting to note that Tofisopam has also been indicated in Schizophrenia, of which the pathogenesis has some similarities with the (speculated) pathogenesis of HPPD. Idk where you are from, but it is available for purchase online. It seems to exhibit a dopaminergic mimetisism.
 

[Pharmacokinetics and metabolism of tofizopam (Grandaxin)]. [Pharmacologic effects of tofizopam (Grandaxin)]. [Excerpts from the clinical-pharmacologic and clinical studies of Grandaxin].

 

 

[Jay1]

Interesting.... Please make a post when you try it out. Even if it does nothing.

 

I have tried Keppra and Sinemet.... Didn't really see any/enough benefits to continue with either. Benzos are the only thing that properly work, for me.

 

I do use the occasional barbiturate for panic attacks, if they happen when i am having a break from klonopin. They do nothing for hppd though.

[Jay1]

Hey mate, did you ever try the Tofisopam?

[Syntheso]

Hey man,

No I actually forgot. I will give it a whirl tomorrow because I need to be on good form.

Will let you know.

Best,

[Jay1]

Cool, i've ordered some online too.... Let the guinea pigging begin!

[Syntheso]

Cool, i've ordered some online too.... Let the guinea pigging begin!

Good stuff! Been about an hour since I took my dose, brain fog seems mildly reduced, possibly placebo, thus far, nothing much else. Went in at the higher end of recommended dosing, 250mg. I like to do this when testing so I can really be sure about how it's affecting me (ie not too subtle to be unclear and possibly placebo). I'd already taken a low dose in the past to make sure I wasn't sensitive/allergic.

Anyway, this is interesting; "Thus tofisopam appears to induce acutely an increase in the sensitivity of central dopaminergic receptors". I'm tempted to have a coffee, but won't   

Tofisopam will clearly be more useful for those with anxiety.. as that is a mild symptom for me I am not expecting myself to be blown away. Would be interested to hear other reports!

[Syntheso]

Okay, so Tofisopam didn't seem to do a lot for me.. if anything made me feel worse, but it could have been that today was going to be a bad day anyway. Point is.. it didn't stop me from having a bad day, I had a bad day after taking it with no apparent redeeming features. My visuals have been considerably worse since I took the Tofisopam. If my average visual rating is 5-7/10 for visuals (10 being worse) then today after Tofisopam 250mg is 8.
In the hour after taking I felt okay.. if not a bit better (as mentioned in post above). After two hours I was practicing my sax for a bit and, classic, after 5-10 minutes (a pathetic amount of time to practice for) I had to put it down, started feeling the fog, blah blah. Like I had to lie down. So I did... sleep (interesting considering it's meant to be a 'stimulant' benzo).. woke up maybe an hour later... visuals were crazy (for me), 8.5-9 (unusual for me). These gradually have subsided but are still worse than a usual day.
Generally had one of those foggy days where I have slept a lot because I can't contemplate doing much else  
Would be good to get a second opinion. I'll give it another go another time too just to see
Time for some Xanax

[Jay1]

Shame, sounded quite promising....

 

Did you get yours off the net too?

 

I will try getting a proper script off my doc, when i go in August, just to make sure with the proper stuff (Portugal is one of the few Western countries that sell it)

[Syntheso]

Yeah...brandmedicines.com could be a bad supply. Do that and let me know!