Posted by yxibow on May 6, 2006, at 3:42:18
In reply to Re: Yxibow QQQQQQQQQQQQsss, posted by UgottaHaveHope on May 5, 2006, at 0:05:01
> Jay:
>
> Are you able to work? Are you able to function? What do you do on a typical day? What occupies your mind? Do you have hope that things will get better? Is there a cure? Are there other docs you can try, like the Mayo Clinic?
>
> MichaelWow... a lot of questions.
Is there a cure -- no, not yet -- there are palleative medications and untold costs of psychotherapy -- I wish there was, since nobody has exactly the same symptoms. But there are ways of psychiatrists who are in current knowledge (CE credits and conferences, etc) of somatiform disorders of going about ways of treating them through a combination of medication and psychotherapy. Somatiform disorders are misunderstood and if you googled them you'd probably find things like malingering which is hardly the case. I love my parents and it isn't fun being the 30 in the basement, so no, it isnt that.
Am I able to function -- I'm using the computer here, I drive to do odd errands, I suffer in Home Depot with their metal halide lights but I buy my stuff anyway. I drive, but have to watch my driving carefully with my medication that I leave plenty of distance, which is hard in any big city. Basically, to sum up a comment to one of my therapists -- (I have another one who is trying to help me get towards greater functioning and work I see occasionally, rather than my psychiatrist/psychotherapist who I see twice a week where I do more "inside therapy" and medication management.) -- there is a very intelligent mind wanting so hard to get out from under this.
Its there (and I'm not trying to be supercilious or haugty -- I've never had an IQ test or anything, I just know I have natural knowledge and would want to function in a high functioning environment like an academic setting or corporate think tank or anything that engages my mind -- even being a therapist of some sort.)
On a typical day -- well early in the week not much but errands and working in the garden. I used to do more hobbies like massively long daytrips to rock collect, hike, etc. These days I spend more time at the gym getting my Remeron pounds off and while my feet hurt from 75 minutes a day at 15% on the treadmill (oh the iSqueeze from Brookstone is so worth it for a 7 day a week walker.. anyhow :) it is paying off -- I have lost 40 pounds since September and gained at least a few pounds of muscle along the way. I have a trainer who I have been seeing a while for that, I will probably have to quit soon since its expensive but its worth some training for a gym novice.
My doctor(s) and parent (s) have more hope that things will get better than me. On a good day, the Cymbalta occupies my depression, my Valium and Seroquel are working and I function but am not "cured." On a bad day, I have to take a, oh, what did we call it euphamistically, "last ditch" or something -- my mind is drawing a blank.. anyhow, Xanax, to smooth things over. Its so unlike any other thing (s) that I have had to fight in the 18 years of psychiatric history that I have had that I see no way out yet. My OCD waxed and waned and then really took a dive, but after hospitalization and yet more expensive day treatment, I gained a hold on it. I no longer have any particular compulsion to wash for 30 minutes or shower for 7 hours until I faint from the heat. Sure, in the back of my mind I may think of ick for a second, but it vanishes. With CBT, and a YBOCS (Yale-Brown Obsessive Compulsive Scale off the charts literally), I conquered it and so could a number of people with OCD.But this feels so much differently.. sure, one could say it has an undertone of OC Spectrum -- but there is no obsession and there is no compulsion -- I don't obsess that the lights are bright to me -- they **** are, and I can't change that through any mantra. And yet it isn't psychosis either -- I know the lights are filtered out of other people's brains and not noticed unless you stop them and then they realize what you're talking about, but it goes away in millseconds. (At the start of this, it was so bad that if someone accidently or intently aimed a camera flash at me, I would see the bulb for 15 minutes. 15!) But there are other little things that happened along the way like wierd thirst and saliva sensations that occur in Somatiform Disorders and a few other things, that led it to this diagnosis.
So back to whether I have hope... Good day, 50/50 or better, bad day 10/90. It just really feels so different. And there are other things mixed in, like things that were there before the ** hit the fan in November 2001 -- feelings of inadequacy when I had perfectly enough adequacy for work, I just got so tired of rejections and the whole nasty but necessary world of "networking" that I began abandoning job searching. So even when -- and I will say when because I have to believe when even if I mostly feel if -- this "lifts", there is still another mountain to crawl over of gaining confidence in what I already should know, that I have good computer skills, a knowledge of video editing, etc -- its just that I've lost time and would have to take certificate classes and such --- under what -- fluorescent lighting at night when things are the worst. But that's supposed to be the part of "coping" with this that really irritates me, yet I know something has to go forward.
Oh, yes, I forgot to mention, this disorder has a diurnal aspect to it -- I'm best in the morning and afternoon and at night I tank for unknown reasons (maybe I've had all I could for a day.) Its not unknown for disorders to be worse or better at opposite polarities of the day.
So to finally get at is there a cure? We don't know. We only know that gently nudging me forward with more interaction with the public and volunteer work and the like, might override the part of the brain that still has the trapped hysteria from 9/11. I don't actually have any real anxiety now -- its probably so covered by medication and converted into something else that it doesnt even feel like the anxiety I experienced transiently in college when I "merely" (and I say this only for my comparison) had to deal with dysthymia and homesickness.
Are there other docs -- well for privacy reasons I can't name them, but a certain government hospital near here has two prominent doctors that work on TD movement disorders that I was specially referred to because I was concerned about certain aspects of side effects, but they also were interested in the disorder itself and had communicated their input to my doctor.
I also saw another psychopharmacologist for a second opinion who rattled off just about every medication in the PDR and then some and asked if I had taken them, etc, etc. I didn't find him particularly useful but he is also prominent in psychopharmacology knowledge here. He may not have the best style. But again input was also communicated to my doctor.
And my doctor, being at the upper eschelon of doctors at institution X, attends "journal clubs" and emails peers, not to mention having a probably guessing by his age 20 year history of psychopharmacology. And like myself, he also happens to be gay, which I found a tremendous relief -- I had sort of assumed so but didnt really get into that until a bit into the aggressive psychotherapy that we pursued starting early 2002, which has gone to twice a week. So that also is a plus for our relationship.
Is there any other place -- well I dont know -- institution X, here, is really at the forefront of academic teaching in medicine, as are a few others, say Y and Z. And I would break a four year relationship with a doctor, which I admit at the start it was considered, but not promised that it would resolve in around 3 years -- and now more than 4 years later it has been mitigated but not vanquished like my prior illnesses.Maybe one could say I am dependent on said doctor X, having such an intense relationship, because there will be an absense for the APA in Toronto (one city in Canada I wish I had visited, but anyhow -- I know some people from babble are going there) and a general vacation, in my treatment which scares me a bit, but I can see the other psychologist for that work to cover things.
The Mayo Clinic -- well, I have a clean bill of health and a clean MRI scan except for some normal sinus congestion observation and two opthamologists' conclusion of perfect to near perfect true (non psychiatric) vision. They're more focused on non-psychiatric conditions like transplantation and cancer and severe neurological conditions.
If you know of someone who has the near exact same conditions, I welcome it -- but believe me, I've searched, medline, etc. There is a group on the web that devotes itself to "visual snow", but that is more like going around (and that sounds really hideous) seeing life through a television set tuned to a bad channel. I only see that very minorly at night.
So I hope that answers your questions. I welcome anybody's questions, as long as they aren't to disclose my actual information as mental health still has a stigma and this board is searchable.
Thank youTidings and cheers
-- Jay
poster:yxibow
thread:639943
URL: http://www.dr-bob.org/babble/20060504/msgs/640531.html