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Thread: Any Thoughts?

  1. #1

    Any Thoughts?

    Hello, I am 26 yrs old and was diagnosed with OCD in junior high. I have been on a bunch of medications for it (Risperdal, Luvox, Paxil, Zoloft, Anafranil, few more I cant remember) and have had some cognitive therapy. I am trying this and am seeking real support groups because I am at wit’s end with everything not working. I have never been on a med that I could say “oh yeah, that helps”. Maybe the OCD would get better or worse a bit, but I never credited meds with much. Right now I am on Paxil, my current doctor does not have me on any anxiety medication (was on Klonopin) because he says a little anxiety is actually good for fighting it. I don’t know, I was much better on Zoloft and Klonopin, but don’t think that any medication can help me at this point. It may help me and I just do not notice it, but right now I just think I need to make some cognitive changes to fix this or try a medication more “out of the box” than Paxil or Zoloft. I am the patient here though, so I really don't know. I am also very intrigued by the Gamma Knife Treatment (
    My OCD centers on cleanliness, mainly fear of getting dirty or contaminating my living surroundings. It’s interesting because the idea of germs or disease really doesn’t bother me, it’s just mainly dirt or filth. My days are filled with the same basic drawn out rituals such as 45-minute showers with scrubbing that leaves by face and hands burning and red. Every day it is the same routine in the shower, I almost think of them as stages. One of the main driving forces behind the OCD maintaining a bad obsession which goes on to infect everything like a virus. The best way I can illustrate this is through example. For instance, I recently moved out of an apartment where in the kitchen and a little in the bedrooms the A/C ducts would for some reason blow this crud out of them once in a while, so there would be spots of scattered dirt in the same places, most easily seen in the light-colored kitchen. Okay, this drove me crazy and I got to the point where I would not go in the kitchen after I showered and in was in my “perfection state.” Also I would not get in my bed even to lie down during the day if I had been in the kitchen. I recently relocated and had to get a new apartment. Well, everything was fine for a couple days and it felt great to have the freedom to not think of any of the apartment as “dirty”. Then, my mind decided to come up with the idea that all the food I had brought from my old apartment was dirty. Even though the cans of soup and such were in a closed pantry at the old place, I had this notion that they were covered with dirt or filth, and it really didn’t matter if I SAW it or not. I resisted doing much about this, but in the end I put tons of canned goods and stuff in a bag next to the dumpster for one of the homeless people who are always going through it. I had to get it cleaned out. Thing is, right after I get rid of the culprit, I start coming up with new things to bother me from it. For instance, now I think that the stuff I had bought after I moved but was in the pantry with the “dirty” stuff is now also dirty. And I think that when I took the “dirty” stuff out even though it was in a bag it had dirtied everything from the floor to the handle on the fridge to the alarm clock that is near my front door. Even the sheets on my bed I think got dirty when I took the stuff out, and of course this meant I had to go and launder those (a huge pain in the rear, I must be one of the biggest wasters of resources such as soap, hot water, cleaners, hygiene stuff, etc). So now I have a separate pair of pants and shirt I wear when I go in the kitchen to get something, and still won’t go in the pantry. This affects everything in my life. When I get home from class I can’t have a snack and go lay down, its either lay down or go snack and shower and lay down. I will notice something from the old apartment such as my CD wallet or dress shoes that were near an air vent and will think that I can never comfortably use it again. I do not open the window to my apartment because the window metal window area on the outside is a bit dirty (like most windows) and I’m afraid if the wind picks up it will blow crud over everything. What blows me away is that this same kind of thing happens again and again. It’s like one awful thing that seems to ruin everything. For this, it was the fact that crap would come out of the air vents and I think it got everywhere. Before I moved out of home, the SAME EXACT thing happened but it was with my brother’s dog that spent his day tied up in my parent’s garage (I know, awful). I thought he was flea city. I believed that walking within 20 feet of him would cause me to get fleas on everything of mine and me. I started parking my car way up in the driveway and never walking through the garage. I love dogs, but sometimes I thought how wonderful it would be if his dog could just be gone from this Earth or at least my neighborhood. I told my counselor that if it weren’t for this one thing I would have a complete handle on my life, and she told me that once this was removed something else would come. Lo and behold, a few months later I’m away from that and I get the dirt from the A/C vent thing. Of course, I have OCD incidents all the time, it’s just that these seem like those major ones that I just cannot do anything about. My mind can make up unlimited things about it and I can’t fight it because it is not something happening right now, it is something that happened (the dogs fleas and the dirt from vents) and is ingrained in my mind.
    The other OCD as I call it includes more generic stuff like checking my car doors and windows repeatedly because I don’t want any crap to get in it, being super vigilant about where I walk (away from dumpsters) and walk in (away from grass and stuff, on concrete). I read another OCD patients post about how he was afraid he would get AIDS from giving a homeless man a cigarette. Well, if I give a homeless man a cigarette or some change, I am in the shower within the next hour because I think I just got dirty. I cannot go outside my front door to smoke or get the mail and come back in and relax because there are some mounds of dirt in front of my apartment and countless things I will run into on the way to the mailbox that will make me feel dirty. So I have two states, one in which I come and go and sit in my chair or couch and eat whatever I want, and one in which I am showered in that “perfect state”, can go in my bed and use and touch my electronic stuff, but do not venture outside or into the kitchen pantry. What really stinks is that I have a bunch of text books that were at the old place which I now think are dirty and therefore only read when not in the “perfect state” even though I actually WIPED THEM OFF WITH CLEANER! TEXT BOOKS! This affects my social life (I missed a meeting the other night because I was laundering stuff I believed to be dirty from taking the cans out, and couldn’t stand to leave before this fake task I had given myself was done), financial well-being, and clearly my academic success. It even goes into the thought stuff, to the point where I may think something unpleasant (say, sexually) while doing something and have to do whatever it is over while forcing myself to think of something pleasant or otherwise the thought will haunt me. One of the weirdest things about all this is that it was not always this way. When I first noticed the OCD in high school it was all about checking, the dirt thing was non-existent. Then, the thoughts started happening, recurring unpleasant thoughts that I read a lot about being the main problem for OCD patients. Now, it is with the contamination. It’s almost like I defeated the OCD’s old form, so now it’s back in a different way. It’s almost like playing chess with my mind. Something will come up, say I think that the CD wallet is dirty from the old place and I need a new one. I will say that is ridiculous, and start trying to make a case against it to MYSELF! I will say well the case was in this entertainment center which has a huge ledge which would have guarded it from the air vent. This gives me ten seconds of relief followed by the thought that maybe just a bit of crud could have made it’s way to the case, and the cycle continues, almost always with me losing. Life is too short for this, and that is one of the main mantras that helps through when it gets really rough, but of all the stuff I can say to myself when I am relaxed to make me feel good about beating this, it is when I am in the throes of it that I just forgot all of that. Just thinking of the kitchen right now, and the new debate I am having with myself about whether I need to launder my travel bag because I am going home this weekend and the bag IS in the kitchen…..makes me completely uncomfortable. I hate the time, energy, and money I spend on all this. I mean usually my errand/To Do list is 80% things that DO NOT need to be done but the OCD has convinced me otherwise. I worry about not enjoying the good times because I’m worried about some stupid task I have for myself when I get back to my place, or that I need to just get rid of all my possessions when I get that first paycheck and just start “clean”, because everything I acquire that mixes with the “dirty” stuff may become dirty too. I hate this so much, I want to be freaking normal so bad, and it’s just unexplainable to me. I’d like to pull the wire in my brain that is causing this. Any thoughts, questions? It is unbelievable the way this diesease works and is similar between people. I hate this and I hate the fact that I am wasting my life, I do not want to regret down the road that I missed some of the best times of my life (which I am doing), because of this or missed opportunities (grades have suffered, social life has) because of it either. To be honest, just thinking about that actually helps me a bit, at least for a few minutes.

  2. #2

    Any Thoughts?

    Hi, In Limbo:

    First, I wanted to say that you may be "only the patient here" but remember that you are also the only person who truly knows how you are feeling -- if you believe that you did better on Zoloft and Klonopin, your doctor needs to hear that. Is the doctor your family doctor or a specialist? Does he have experience in treating OCD?

    You also say that you have "had" some cognitive therapy (CBT), which I assume means you are not currently in therapy. I would suggest that you do need not only medication but also psychotherapy to learn to manage your OCD symptoms, and I would also strongly recommend that you consult someone who is not just a cognitive behavior therapist but someone who has successfully treated OCD in other patients/clients. I don't personally believe that "out of the box" therapies, whether they are psychological therapies or medications, are necessarily the best when it comes to terating OCD, nor that someone with training only in CBT is necessarily qualified to treat OCD.

  3. #3
    Join Date
    Oct 2004
    At home, most of the time.

    Any Thoughts?

    It is interestin to hear the many forms which OCD can take. There seems to be no limit to the number of variations the obsessions can take. I can relate to how you must feel. Whereas you are very preoccupied with dirt and cleanliness, but not germs or virii, I am preoccupied with the AIDS virus and not so much dirt, or crud. Also, I am not really worried about things being in order and don't have the neatest house in the world, although I do obviously have some standards of cleanliness, although I wouldn't really say it is out of the ordinary. I encourage you to stay with the site and continue to share your experiences. I find CBT to be helpful in relieving acute episodes, although they don't prevent them. I am very leery of trying that exposure therapy where you are forced to face your greatest fear, although I can't tell for sure, since I've never tried it. The thought of going to an AIDS hospice would just send me into a debilitating panic.

    I find that it is important to learn coping mechanisms in order to not let the OCD destroy your life. I am about your age and would definitely share my experiences with you if you are interested. Shoot me a PM is you have any questions. David has posted a number of interesting articles on the subject on this forum. I found the articles on how OCD affects the genders in different ways is very interesting. Unfortunately, being a male seems to make my prognosis a little more negative. I seem to fit the pattern very well. I do have facial tics that seem to come and go (this caused a great deal of pain in elementary school, as people sometimes called me blinky), and have had a few bouts of depression, although this has been in remission for the last few years. My OCD seems to be a constant fact of life that tends to just hover in the background, occasionally coming to the forefront on a daily basis for brief periods.

  4. #4

    Any Thoughts?

    I am currently seeing an OCD speialist for meds and a cognitive therapy counselor specializing in OCD. The thing with Klonopin is that I am an addict (something I was leary to mention earlier) and told the doctor I cannot have narcotics. I share with him though that it stinks that I could be taking a combo of meds that would make this better and would even pick up the one or two Klonopin every day, but he says he would not prescribe it anyway (whether this is to just make me feel better, I don't know). Stevel, I did some exposure therapy a few months back, it worked a little on the small things, but on the big things I just could not hack it, I would avoid doing my assignments like the plague. What I worry about now is that things have deteriorated so much since the days of Zoloft and Klonopin, that even if I did go back on them or some successful medication, there is too many bad preconcieved notions/rituals to help much.

  5. #5

    Any Thoughts?

    I had a very mild case of OCD behavior for a few years, so it must be very frustrating to have a more severe case of it without remission. My depression/despair/disillusionment seemed to help counter my OCD behavior, though it's certainly not a happy alternative. For example, it was hard for me to spend an hour brushing my hair if I was also having suicidal ideations.

    Anyway, the chief of psychiatry at the University of Florida, Dr. Wayne Goodman, is the leading expert in the OCD field, and he does have hope for future treatments:

    Additional pharmacological strategies being tested include intravenous clomipramine (funded by NIMH) and novel compounds (Pfizer, Lilly). We are also examining non-pharmacological biological interventions, including Vagal Nerve Stimulation (VNS) and Deep Brain Stimulation (DBS). The VNS study is part of a four-site trial sponsored by Cyberonics as a follow up to their studies in depression. Dr. Goodman received funding through an R21 grant from NIMH to evaluate the efficacy and safety of DBS (bilateral internal capsule implantation) in 6 patients with OCD who would otherwise be candidates for ablative neurosurgery. Both the VNS and DBS projects are in close collaboration with the Department of Neurosurgery at UF, a relationship made easier by our proximity in the Brain Institute. Dr. Goodman believes that we have a wider range of novel and investigational biological treatments for OCD than anywhere else.
    Compared to Healthy Volunteers, OCD patients have increased brain activation in the anterior insula, basal ganglia, thalamus and somatosensory region in the Disgust vs. Neutral conditions. These pilot data support the hypothesis that OCD patients with contamination concerns may have an exaggerated pattern of brain activation in response to Disgust stimuli. Further studies are underway and we plan to submit an R01 on this topic.
    The best advice, of course, is "baby steps," as David says.

    The antidepressant Remeron causes sedation and lowers anxiety in many patients, so you may want to use Remeron as an alternative to Klonopin. If you ever need to prevent insomnia, Remeron's sedative effects are more reliable than Klonopin in my personal experience. Like many others, I easily adjusted to Klonopin and needed higher dosages. However, Klonopin and Remeron seemed to only sedate me, and they certainly did not help my obsessive thinking.
    "What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson

  6. #6

    Any Thoughts?

    Thanks Daniel, I saw that your from Gainesville, I am too, student at UF. I have seen Dr. Goodman before and currently go to Shands for treatment. I sent him an email about the clinical trial.

  7. #7

    Any Thoughts?

    By the way, in the past Dr. Goodman did not like gamma knife treatment. He told me in 1998 or so that he thought something should be added to the brain, not taken away. However, I don't think it's risky, and I used to consider it myself and even started to make arrangements. So if I had your symptoms now, I would probably go for it if there was funding from my insurance or a clinical trial. As you know, it seems gamma knife is more effective than non-invasive psychosurgeries like Deep Brain Stimulation.
    "What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson

  8. #8

    Any Thoughts?

    The ideal body wash for OCD patients that take long showers may be something like the baby body wash that is now for adults:

    <edit by Admin>Some webmasters get a mite testy when people "hotlink" to their images since it uses bandwidth that brings no visitors to their site. A better practice is just to provide the link -- I've converted the image in this post.</edit>
    "What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson



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