Posted by yxibow on October 25, 2006, at 14:26:12
In reply to Re: Complex hallucination -yxibow » yxibow, posted by bimini on October 25, 2006, at 8:35:35
> Wow, I'm learning alot from you all.
> I'm not a LSD user. Don't have burning eyes but feel pressure behind eyes from time to time, lasting several hours up to a day or two.
I can't say what that part is for you since you have a complex organic disorder but I know that on "nasty" days I sometimes end up taking 600-800mg of ibuprofen at the end of the day. Its not a 5 alarm fire but it helps some of the strain that the eye muscles are obviously doing something to something that really lies behind them, not ahead of them.
> Now, with real and altered worlds: I remember how the world used to look and wondered if I would get so used to this, and eventually adapt as much, to forget how real was like.
I vaguely remember, it gets more distant with time but yes, I remember, because I also have a fondness, yearning, a peter pan-ness for my college days, which were the best thing I ever had going for me that I didn't realize at the time. I mean, I had fun, but really, it was besides parental support, independence. An independence I'm still proud of. Not to mention a greater social network.
> I have lost at least one marble, that is what I call the hole in the back of my brain.Didn't mean to associate that painfully for you, it was a little humour conjecture for me on my part.
Can't afford therapy, have trouble paying for the medication. Talking to you is my therapy, support groups have mended what some of my doctors destroyed; had such bad experience with doctors early in recovery my trust has been irreperably damaged.
I understand.. not all experience with medicine is positive though I still believe in better living through chemistry. Not that it is my business, but I hope you have some sort of compensation or government disability benefits for your medication and the like. At any rate I wish you do. (you don't have to answer that publicly, just a comment.) I'm glad I can be of help, but not being a qualified licensed therapist I'm just suggesting maybe there is some sort of funding out there somewhere, state government sponsored programs or something.
>The world sped up without me and I don't care to try to catch up.The thing is I'm still in my 30s and I have to catch up, and fast as my parents had me late, and my social network is mostly fair weather acquaintances.
But I'm making an effort to remain active socially even though that is exhausting, sometimes takes week or more to recover.Recovery is a job in itself.
Can't work a regular job, with a lot of push and shove started my own business, work 2 -3 hrs a day now. Learned to break things down to little chunks so everything isn't so overwhelmingly difficult.
And that's the path I'm suppose to take eventually, to try to work a little at a time, maybe at home first to control my own lighting, etc.
And forcing myself to keep a routine. Declutter my life. Rearrange location of lighting at home.
Definately, its flat panels and as little fluorescent lighting as possible except those which appear daylight enough, etc.
Set limits to everything with a timer and change location, activity, focus. Collecting tools to function.
That sounds positive.
>
> Don't know Seroquel, my problem was hypersomnia. Slept like a rock for 12 hrs, up to 16 hrs when active.One definately would with Seroquel if they aren't an insomniac. I probably sleep 7 hours these days but that's partially because I sometimes nap during the afternoon or take a second morning catnap (decreases nighttime regularity of course.)
Never quite awake, already exhausted 2-4 hours after waking up.Yeah... same, although it wears off about two half life hours after the Seroquel which has a small half life. I'm still tired, but not an immovable object.
Effexor made everything worse, chunks went missing, didn't know how I got from one place to another. Vision stuttered like strobe lights.
Effexor is a definate stimulation on the body, I can't take it, or at least at the time when in college I tried. Cymbalta so far is working out to the best of its degree with occasional breakthrough depression.
> Now I'm taking Lamictal and sleep way more efficient ~9 hrs, and Provigil to stay awake and alert throughout the day. Valium might turn me into Snow White.I'm more used to my Valium dose, which we are attempting to pare down a little, so its more the Seroquel antihistamine that makes me tired I think. We haven't tried modafinil, although that was an idea of stimulants. I've noticed that on an off label basis, when I take Sudafed for some minor ear/sinus stuff that I have fairly regularly (no real congestion, just ear feelings), I actually kick myself out and go to the gym or the like. Its a very micro-antidepressant, not that I ever recommend anyone take Sudafed 24/7.
>
> How did you get into this side of reality? Did it happen suddenly? Can you pinpoint an exact date or event that caused the change?
It is a somatiform/OCD spectrum disorder, to the best of mine and my doctors' knowledge. Somatiform disorders aren't the malingering that is in old treatises, they are real. And surprisingly common in neurology and the psychiatric wards -- but mostly the common form, pseudoseizures, people who do not have a seizure disorder but whose anxiety and whatever else they have absorbed turns into physical symptoms.In this case it is persistent, so far, 24/7, although daytime is better, whether apparent lighting or simply because I am less fatigued for what the day brings.
We think the trigger was probably the uncontrolled anxiety and extreme (more than my peers) hysteria and anxiety that followed 9/11, to the point where I had fear the world would end in some nuclear disaster or something and was constantly checking my cellphone for news. Hindsight is 20/20, if I took some Geodon or something then I probably might not have had it snap so strong now. But we don't know, this is just conjecture and evidence based psychiatry. There is evidence that a neuroleptic works, that the blockade of D2 (part of visual pathways) is a reasonable theory. There is evidence that GABA seems to be a modifier (Klonopin, then switched to Valium, and an occasional Xanax at bad moments.)
What else is part of the puzzle is actually therapy probably to get to the root of it, and ironically medication probably drowns out a lot of the therapy so I can function and sit at this computer, for example. Its a catch 22 because we dont know if I will "go backwards" with reduction in medication or whether I will simply have periods of withdrawal and breakthrough anxiety that will reset itself.
To the best of my knowledge it snapped overnight and became aware of it on Nov 17, 2001. I know that date because I was driving to see the Leonid meteor showers. (Can only see those in clear sky areas like here in Southern California.) I was blinded by brightness of headlights going both ways on the mountain road and I parked and saw a few and came home, thinking I just had a bad sleep, and went to another location the next day and it was the same. Purple blobs were beginning to appear in my vision (afterimages). And things have been the same but fortunately much better since. At the height of it big department stores with the usual fluorescent lighting confused my mind so much I almost knocked over racks trying to look for clothes. I chose things with little patterns. I still find myself occasionally avoiding choosing my clothing that have patterns I used to like.
> I have thought a lot about that. What other events could have contributed. Viral infections, more viral infections, other concussions I didn't take serious...Oh I've been through the gamut... somewhat backwards... I did have extensive medical tests from one bacteria/whatever to another. Finally one year later after it was clearly seen that it would improve my anxiety about things I had an MRI to conclusively rule out anything organic. I just recently had a Lyme titer which my doctor would have probably notified me by now if anything was amiss -- it was just about the last thing I thought on the littany of things, including cortisol (oh peeing in a jar on the weekend is such a fun activity... [humor off]). Oh and several opthamologist's exams.
> I hope you will find therapy helpful. I probably would if the therapist lived with a brain injury also. Explaining so someone understands remotely is so exhausting to me, something I rather avoid than seek. The real help I got came from people with similar difficulties.Yes, I can understand... I pare down my explanations to a minimum unless I sense the other person is an empath/empathizer. I do wish there was someone else in this country let alone on this continent that had my condition exactly.
I haven't looked in a while, but there is a board and another site regarding visual snow and static and the like.
http://p210.ezboard.com/bthosewithvisualsnow
>
> Hugs, bimini
>You too
-- tidings
Jay
poster:yxibow
thread:696508
URL: http://www.dr-bob.org/babble/20061020/msgs/697654.html