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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by UgottaHaveHOPE on May 4, 2006, at 12:08:19
You said you took 1100mg of Seroquel. What is its effect on you? Have you taken it at another dosage level and did it make you feel differently?
Do you mind if I ask your diagnosis? Or do you mind sharing your story? Thanks, Michael
Posted by yxibow on May 4, 2006, at 13:08:01
In reply to Yxibow Q, posted by UgottaHaveHOPE on May 4, 2006, at 12:08:19
> You said you took 1100mg of Seroquel. What is its effect on you? Have you taken it at another dosage level and did it make you feel differently?
>
> Do you mind if I ask your diagnosis? Or do you mind sharing your story? Thanks, MichaelI don't mind sharing my story -- I have a somatiform disorder. Some will look up somatiform disorders and see them characterized as malingering, but that is not the case at all in today's thinking. It is pure anxiety expressed in a physical form. The most common form is a pseudoseizure which happens more than noted -- it is actual seizures that happen to people who have no epilepsy. Those usually resolve with a little medication and psychotherapy within days to weeks, maybe as long as a few months. Unfortunately thats not the kind I have. Since approximately Nov 17, 2001 (I think that was it, it was the date of the Leonid meteors when I tried to go driving up the mountain and I was blinded nearly by car lights), I have been affected by a disorder somewhere between somatiform and OC Spectrum -- more on the prior I think, that causes basically every visual sensation to be heightened. There's no psychosis involved, I'm rational (unfortunately, if I wasn't I wouldn't be bothered by it ironically). These phenomenons are things that everyone can experience for the most part but are amplified and more importantly not filtered out by my brain. Fluorescent lights, especially garish big box stores drive me nuts, the 60 hz spectrum from them flickers in my brain. I used to have problems with monitors at 60 hz -- I still dont like it, I have to have it at 70 or 75hz at least. But I use a flat panel now (which ironically does like all have a small fluorescent light to illuminate the LCD, but they're tiny and masked by the transistors mostly).
At the beginning, I basically stayed as a shutin, waiting for a opthamologist's appointment to tell me I had some sort of optic nerve damage or something -- but I had perfect eyes, except for a psychiatric disorder. And I waited, even into therapy until finally someone relented and I was allowed to have an MRI, to prove to me that I had no tumors or lesions.
At the beginnning, also, I was reluctant to take antipsychotics -- my doctor had identified this as a problem at D2 (which also controls vision) -- so I instead started off on Luvox, which by theory the serotonin downregulates dopamine. And it did -- not hugely, but dramatically enough to prove that something could help my problem.
Eventually I had enough of it and I tried Risperdal and Prozac. I still have a right index finger that will (barely) twitch for the rest of my life or until it gets tired of it.
So we tried Zyprexa -- it caused pseudoparkinsonism and I was scared it would be permanent so I withdrew from it. It provided real relief though unfortunately plus I needed no benzodiazepines, I slept like a baby. We tried a lower dose, it did nothing, but it also caused pseudoparkinsonism.
I have a timeline somewhere, some of this is out of order, but I took Remeron for sleep at some point and discovered that it, too, had an effect on my disorder. My belief anyhow is that it worked like half of an antipsychotic -- it blocks 5HT2. Unfortunately it balooned my weight to a level I've never seen in my life and I'm still going to the gym to get it off. My cholesterol dropped 64 points and I've lost nearly 40 lbs but I have a ways to go. I'm not trying to be perfect, just get back to a place where I last was "heaviest." So we dropped the Remeron.
Somewhere along the way Seroquel was introduced, and while it wasn't Zyprexa and didn't have as strong at D2, it provided some of the same relief.
Along the way in the picture Ambien was introduced as well because I wasn't sleeping properly -- I still take 20mg.
And somewhere along the way Klonopin was introduced, until we switched a crosstaper over to Valium. I am on very high dose Valium, although it hasn't changed for a while. The two medicines that help me the most are Seroquel and Valium. I also take Neurontin as an ajunctive. I take two non psychiatric medications as well, Ambien and Robaxin (for a spasmotic condition in my back and head from abrupt withdrawal from Tranxene 9 years ago -- I still believe in benzodiazepines but not in doctors who give poor advice and dont give you back your full dose of medicine after you have done something improper like cold turkey benzodiazepines).
I switched from Luvox to Cymbalta because my doctor found it helped my depression better and it has -- though my lifelong ruminative thought pattern from OCD is not blocked as well as under Luvox.
I am currently on 1100mg of Seroquel, the highest I have taken and probably near the ceiling I will go. At any level above around 200 for me, it causes profound daytime sedation, often requiring naps, if I dont go to sleep early at a set time (so two half lives of Seroquel pass by -- they're about 6 hours).
I have taken it in two doses daily at one point 400, and 400, if I recall --- maybe it was 300 and 300, I dont remember -- but I was on the road to the most northernmost point in Alaska (my dad was born there so you could say I was exploring roots -- I went to college in Seattle anyhow and would love to up and move back but I cant now) and I couldn't drive safely with that, so I tapered it over to night. It was better that way. That was the most fun trip I had in my life I could say, nearly so anyhow -- I drove all the way to the oilfields at the Arctic Ocean and stepped my toes in it -- you can walk out really far actually, its very shallow and surprisingly warm enough in the summer.
Anyhow back to the Seroquel, basically it blunts my affectation like most all antipsychotics unfortunately -- so that I may have delayed reactions to sad or happy events in my life, for example. It also is stupifyingly sleep inducing due to the H1 blockade. If I stay up too late after taking it, I reel back and forth to my room upstairs (yes, I still stay at home, it is a serious disorder and I am glad to have parents to support me) and pass out because it causes me to have a low blood pressure.
So there you have it, the good and the bad -- it certainly provides D2 relief in me, it probably provides general anxiolytic relief, but it also is sleep inducing at any clinical dose (usually around 300 and above). I am a fast metabolizer of some medications, and not so of others, I think. Seroquel has a very wide dosing range, up and beyond 800 as you can tell. There are people even as high as 1600, but we're talking super bad cases of Bipolar or Schizophreniform disorders, in people who can't take old line medications.
Tidings- J
Posted by UgottaHaveHOPE on May 4, 2006, at 17:29:49
In reply to Re: Yxibow Q, posted by yxibow on May 4, 2006, at 13:08:01
I have some questions. Will post in a bit. Thanks, Michael
Posted by Phillipa on May 4, 2006, at 19:18:51
In reply to Re: Yxibow, thanks for sharing your story ..., posted by UgottaHaveHOPE on May 4, 2006, at 17:29:49
Just wanted to say Hi Jay!!!. Love Phillipa
Posted by UgottaHaveHope on May 5, 2006, at 0:05:01
In reply to Re: Yxibow Q, posted by yxibow on May 4, 2006, at 13:08:01
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?
Michael
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
This is the end of the thread.
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