Posted by yxibow on July 22, 2008, at 3:28:54
In reply to Re: pregabalin better than gabapentin? » yxibow, posted by Marty on July 21, 2008, at 3:18:19
> Hi Jay,
>
> Is part of it 'Palinopsia' ?
> http://en.wikipedia.org/wiki/Palinopsia
>
> I've read that the part of the brain most responsible for sensorial habituation was the a subpart of the part that was 'defective' in Parkinson disease. I find this interesting and wonder what it says about which more off-label meds could be interesting to try. Did you try Dopamine agonist ? If guess it's not exactly good for you.
>
> /\/\artyNo its not palinopsia, but some of the symptoms can be mistaken for that. I did and do have snow, but its not the "visual snow" that is visible in the picture on Wikipedia. When it was worst, the snow would interfere with my ability to read text, and I also had incredible contrast problems, especially on a computer. Still, to this day I tend to avoid clothing with very flashy patterns.
No, I have never taken any defined illegal substances in my life, although I don't particularly care about people who use pot. Minor use of it is unlikely to lead to any major consequence except for giggling, munchies, and getting fat. Of course there is always the exception, and I don't advocate it for minors. Actually to tell you the truth I always wanted to "experiment" once in my life, but mental illness and medication kind of put the kibosh on that one. Anyhow, that's irrelevant. I believe there are true medical uses for it for people with MS and HIV.
But no -- this disorder has baffled neurologists, many things have been attempted by my psychiatrist who still has faith in seeing me through to as much happiness as possible through work that I do through my psychologist.I am fortunate to have a family that is able to support me, but that is also a pushbutton for me, because I want to break free and be my own person again after this unwanted 7 year vacation, and my family basically has been my best friends and most understanding of the illness outside of the aforementioned caregivers.
They're also a bit older than most parents which scares me too because I have no relatives on this side of the country and its hard to be the one that is taken care of by family rather than the other way around and I still don't see or want to see life beyond the real and inevitable.
There are a lot of psychological and psychodynamic issues attached to this disorder as well, and yes, I did have psychological testing which revealed some things already known and some things perhaps contributed.
Unfortunately for whatever reason the Seroquel, or my psychological makeup at this point, or whatever reason does not "work" like it was in 2003. At that point I drove 8000 miles to the Arctic Ocean and back (tracing my father's roots in his place in a sense) and I felt "on par" with people. Now there is a sense of confusion and disconnectedness with people, perhaps because of being on Valium for too long, perhaps for a lot of reasons. There was a short article but convincing enough to be on the dose of Valium that I was on, and it did contribute benefits (and some obvious problems). I am titrating down on it. I actually was supposed to go on Clozaril but that has never materialized.
A dopamine agonist would amplify my disorder -- it was a theory, and perhaps not 100% of everything that something, unknown, was raising my D2 level. At first I didnt want to take APs -- I did a trial of Risperdal and that was awful. So I went on Luvox on the theory that it downregulates dopamine -- whether that actually was the case or not, it did a notch. And as I mentioned before, for whatever reason (I think because high dose Remeron acts sort of like a antipsychotic without the D2 features, e.g. dopamine blockade) Remeron worked for a while. But then it raised my weight incredibly and I wasn't watching my intake.
Finally I went on Seroquel and it "worked" for about 5-6 years. I felt fully lucid, sure, it did not cover everything. I was able to finally not see 75hz and 60hz monitor flicker. For the first time I could see movies again without distress.
I was volunteering and I eventually got a paid position, which though it made me feel good, also probably scared me plenty because my fear of death is really a fear of living -- living on my own. And at the same time unfortunately I made a choice to drop the Cymbalta because I thought it was worsening my OCD thoughts and I would go onto Luvox. And then I went onto Zyprexa and I still have not gotten rid of the varying degrees of stiffness from it -- something akin to tardive dystonia.
Depression hit that year hard, I dropped Seroquel three times out of fear of side effects -- tried Lexapro which is supposed to be the cleanest SSRI and I puked and was nauseated for two weeks. Luvox would have been better.
A neurological condition was starting to develop, which would later be diagnosed as a non tardive oral tic.
It is very psychologically motivated and can be brought on at times by obsessing about it because it is distressing but there really isn't anything that can be done that wouldn't be worse than the condition (e.g. Botox A, tetrabenazine, dopamine agonists, etc.) Clozaril was a recommendation because it was thought that Seroquel was aggravating it (and I think caused it -- mind you a very rare thing just like the Zyprexa incident).
Today Seroquel maintains my "functionality". I am a bright individual, I will not be modest about that, caught inside a body and situation that I never intended to be in or deserve (not that anyone deserves to be caught in a biochemical imbalance). But it just doesnt "cover" things like they used to be. And now the disorder has morphed again, as it has changed over time -- motion is now an added component. Although I don't believe it, cars perpendicular to me appear to be going 20-30 miles an hour faster than they should in front of my visual field.
All that for someone who depends on discerning motion -- a trained video editor.
I am not nor have I ever been psychotic. Can any of these things be described as psychoses? Well, what is the definition of that and what is the definition of reality -- I'm sure someone's interpretation of the world is completely different than another's. I am acutely aware of my condition and what is going on -- perhaps a product of my intelligence and general knowledge of medication, perhaps a lot of psychiatric and psychological issues, some of which have predated this disorder.I did have a mysterious fever slightly more than one year the disorder started, for a year. It was retrograde (less than 100) and I did have bouts of sub-operable tonsillar activity, but I have a lower than normal body temperature anyhow. (98.6 is a myth -- people vary wildly and are usually lower in the morning and higher in the evening).
But through all of that, there were dozens of tests, Valley Fever, you name it. Lyme testing eventually too. And finally the MRI that I insisted upon (I did have a 'normal' neurological test by a GP so it wasn't normally a standard of practice) -- and it was normal, showing a typical pattern of sinusitis that an MRI would show, it would always show something benign.
It remains today a mystery and that makes me feel all the more alone in this disorder. Somatoform disorders are very real conditions that have symptoms that are very real -- they are real phenomenon in the brain (e.g. seizures, bowel distress, the list is endless). Prior psychiatry used to dismiss this condition as mostly factitious in nature but that is definitely no longer the case. Do I meet all the criterion in the DSM, no, so it is called "NOS", or not otherwise specified. E.g, you have to have 4 of this and 3 of that, etc. A number of diagnoses have "NOS" after them because they just don't fit in a box.
In the 6 or 7 odd years that I have been on and off the board I have only run into one other person who I believe was diagnosed with a somatoform condition.They are out there, but ones as complex as these are not common. And there may be some OCD in it as well as I have a history of OCD, which was my major psychiatric condition as a teenager -- but I fought that off and attended university, eventually transferring to a college I graduated in a place I still yearn to return to.
I guess if I could impart something that would be common to all psychiatric conditions, is that life and career oriented strategies, and the access to therapy, is something much missing in the mental health "system" that the US painfully falls short in. Focusing on a goal that interests you rather than the disorder itself may lessen the stress, pain, and ultimately unlock some of the keys to what ails you.I'm not saying that medication isn't part of the picture -- it certainly is and I have quite a list that is a slow dance to pare down.
-- tidingsJay
poster:yxibow
thread:839648
URL: http://www.dr-bob.org/babble/20080718/msgs/841381.html