Wombat140 Posted July 15, 2017 Report Share Posted July 15, 2017 I was wondering if anyone here knows about a thing that I have that I've heard about very occasionally, but it seems to be very rare - a horror of a particular thing, or in my case it's a word (see Desperately need to talk to somebody - poison words), not because I think it will cause something bad to happen but in its own right - that thing just is, in itself, a horrible thing to me. And yet it's not something that anyone else considers a problem. When I try to ask people about mine, they go "But it's a nice word". Has anyone any knowledge of this and how you go about getting over it? Does anyone know of anyne who's ever recovered from this? I'm currently pinning all my hopes on seeing a psychologist, but even when that happens, I d afraid they'll never have heard of this or know what to do about it! Link to comment Share on other sites More sharing options...
Plum99 Posted July 15, 2017 Report Share Posted July 15, 2017 My daughter is only 4. She was diagnosed with Pandas last year, when she had just turned 3. This is her biggest problem, and it's debilitating. It stopped with antibiotics at first, but not anymore. She will refuse to speak about whatever the fear is, and even deny it, but it will be obvious when she reacts with total insanity, sometimes so scared she gets violent. Some things I have been able to figure out and she would then admit and talk about were the color red, things that are square, a simple phrase. All things that no one would ever guess could bother anyone so much. She did have explanations for why they scared her so much. It seems like she only got over one, when a new one would take over. No advice. Just wanted to let you know that it's normal in our world. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted July 15, 2017 Report Share Posted July 15, 2017 Yes, I've heard of this particular manifestation of OCD, and though my son never had compulsions or obsessions attached to just a single word, the other thoughts or fears that he would work very hard to avoid because they were, in and of themselves, somehow "bad," were overwhelming at times. And like Plum99 has said, they tended to shapeshift, also. If he was successful in working through and dismissing one, either via therapy or constant exposure exercise at home, quite often another, similar type of "taboo" would creep in to fill its place. I do think that some regular therapy with a psychologist or therapist well-versed in OCD can help you, though in my son's case, anyway, he needed some additional leverage, as well. I know you have a long history here on the forum (PANDAs, etc.), but I can't remember all the interventions you've tried in addition to antibiotic therapy, etc. In our case, once the abx had tackled the underlying infection, my DS's "residual OCD" had managed to become pretty well entrenched in the years he was coping without the benefit of a PANDAs diagnosis or treatment. So we found that an SSRI helped give him the additional leverage he needed to implement the tools and strategies that therapy provided for beating back the intrusive thoughts, etc. OCD brings to the table. Link to comment Share on other sites More sharing options...
Wombat140 Posted July 15, 2017 Author Report Share Posted July 15, 2017 Thank you, both of you! I was thinking it was just me, and that's never a goood feeling. And if it's commonish in PANS cases, and there are a fair amount of those about, maybe that means thetre's a chance that a psychologist I see might be aware of it. Yes, mine shapeshift something awfull, too. I suspect there are underlying psychological issues, but I also suspect that they wouldn't be doing this if some mechancial fault in my brain wasn't just convinced that something must be wrong and was just using them as inspiration for what kind of terrible thing might be happening. That mae sense, sdo you think? I should upaate my signature. I'm currently on Lyme disease. We've gone back to Amy Smith and she has me on various preliminary things to try and get me in better shape before starting on antibactieral herbs. HOPEFULLY shouldn't be long now; we've had a ludicrous amount of delays trying to get hold of the last preliminary thing! Unfortuntatrely I can't take any kind of psychoactive medications because my OCD won't let me. When I've forced myself to taethem anyway, t goes into screemaing lockdown claiming that I can't know whether it's safe to do ... pretty well anything I'm trying to do ... or whethet it's just the drugs making me think it is, and I'm practically unable to move at all until enough time has passed that I can feel sure the drug is out of my system. It's really inconveniaent beause I can't even take half the standard herbs for Lyme diseas (specifially, notweed, cat's claw, skullcap and ashwaganha), because they're supposedd to have psychoactive effects as well as pyhiscal effects. Any mors tories fro olther peple would be apprecaited, esppecially if you can say anything about how you got over it. Link to comment Share on other sites More sharing options...
kakrpa Posted July 16, 2017 Report Share Posted July 16, 2017 Wombat140 - yes, I've dealt with this too (especially fear of the color red, which is my favorite color)! If u can't go down the med route, I'd highly suggest treatment with a therapist trained in ERP (exposure response prevention). MomWithOCDSon 1 Link to comment Share on other sites More sharing options...
Plum99 Posted July 16, 2017 Report Share Posted July 16, 2017 My daughter was afraid of the color red for months before I got any information out of her! To the point that she didn't want to leave the house, and was attacking other kids wearing red. Somehow it was also her favorite, and she would request things red, but would also go completely insane, have panic attacks, and be miserable. Link to comment Share on other sites More sharing options...
Wombat140 Posted July 20, 2017 Author Report Share Posted July 20, 2017 That is a one. Plain bizarre, as well as exhausting. Well, six year olds don't do making sense anyway and when you cross that with PANDAS... Glad if she's not sp bad with it now. Somebody on another forum suggested that it might have something to do with a traumatic event - she gave the ex\ample of someone who's in a car accident and there's a cherry air freshener in the car and thereafetr they hate the smell of cherries without necessariy even knowing why. That makes a kind of sense to me, it does seem to fit the way it behaves to suggest that it's a kind of conditioned response. But I don't know what the event would have been unless it was the OCD onset itself. That was traumatic right enough, since it was the famous out-of-a-blue-sky PANS onset and I had no idea what was going on, only that I felt as if my mind was being sucked out htrough a straw every time a car went past and that everyone was telling me that there was nothing and to stop being stupid - since they had no idea what was going on either and could only think I was just play-acting for some reason! But what the connection might have been, or where that would get you, I don't know. It seems t me that the way it works is that I mean roughly the same thing by it as most people - well, I think I do - but it's the associations that are off. When I think of that word, I think of the most creepy possible images that you could connect it to, and if I think of it applying to anything my mind immediately jumps from there to those. What do you mean by ERP? The name ERP always suggests to me being faced with the thing and held down by three strong men until the screaming stops. Well, with me it really would be a case of three strong men and also it does't seem to work; I can carry on being in a state for as long as we've ever tried it and the more efforts people are making to force me to stop, the more I/it fight back. In any case, it looks like being a while until I can get to see anyone; first I haveto see the local psychologist, who assessed me a while bac and would be making the referal, the referra, to discuss her conclusions and what's the best thing to do, and she says it's a two or three week wait just to see her. In the meantime, these wrod things are giving me the runaround and getting out of control, getting mixed up wth everything - they've become my main obsession now, in the last month or two. Can anyone make any hints about how you make friends with a thing that you've developed a horror of? I've been maing tentative fforts but it's often hard to know wher to get a foothold - how to come up with any way of seeing it as anything other than terrible, and how to get it to stick once I have. By the way, here's a thing. Quote PLEASE READ - Important: please read this posting before replying to anything I post: http://latitudes.org/forums/index.php?showtopic=24834#entry186170 Yes, this is the word I'm talking about (or the maion one - I have various secondarty ones too at the moment), but please, don't say it to me for exposure's' sake, as I can't cope with that at the moment. Link to comment Share on other sites More sharing options...
Hitman3161 Posted July 28, 2017 Report Share Posted July 28, 2017 (edited) This sounds a lot like Onomatophobia (fear of of certain words or phonetic sounds). Like you said the word may have a specific connotation for you, which may be rooted from a previous trauma. The trauma itself, in relative terms, doesn't have to be severe, but only be reactive to an age appropriate response. It could be the case that it is long forgotten, but we learn through pair association (classical conditioning) and like you said every time you hear it, it triggers a conditioned response. I hope you overcome this... best of luck Edited July 28, 2017 by Hitman3161 Link to comment Share on other sites More sharing options...
Plum99 Posted July 28, 2017 Report Share Posted July 28, 2017 Wombat, I have been thinking about this post this past week. My daughter had her first ivig 10 days ago. Usually, when she comes across one of irrational fears, she will do anything BUT talk about it. She will deny it, will be sent into some kind of episode, refuse to leave her room, lash out, it can go on for hours or ruin a whole day. This week she has been telling me what scares her, brushing it off within minutes, sometimes reassuring herself that it's not scary. It's still there, and I know most kids don't walk around having to reassure themselves that robots aren't going to jump out of television sets, but the change is still so great. I don't know what your treatment has been, but I just wanted to let you know that this has definitely helped us. Link to comment Share on other sites More sharing options...
Wombat140 Posted July 30, 2017 Author Report Share Posted July 30, 2017 Thank you for remembdering about me, Plum! I need all the help I can get with this - and on this forum, I'm getting it. You're all being a great help. IVIg is definitely a distant possibility, I'm afraid; my parents are talking about it only as a last resort if neither Amy nor the psychologist have sorted things out, and that, as I say, looks like taking a long time. And after that, it's extermely doubtful wheter we can get it - that's why it's a last resort. In this country, immunoglobulin is in short supply and so is rationed to people who seriously need it, and I doubt if any system would recognise me as needing it. PEX wouldn't have the same objection but again I don't know who'd arrange that. The only hope we can see is to contact the people at Oxford University who did that recent study on autoimmune schizophrenia, which successfully used some kind of immune treatment though we don't know whether IVIg or PEX, and ask them if they can suggest anything. Still, that's very encouraging story! (I have also heard something about new American guidelines recognising IVIg as a reasonable treatment for PANS - so perhaps that'll fractionally improve the possibility of British doctors being able to approve it for me.) The prospect of the psychologist seems to be getting further and further off. I've sort of agreed with my mum that we can contact her once I've got as far as having my follow-up phone appointment with Amy, but Amy says to do that when I've been on all the preliminary things for 2 or 3 weeks. And though I've been on most of them for much longer than that, we didn't manage to obtain the very last one until a few days ago. (I'm going to contact her secretly and remind her about that and ask if it matters.) So in the meantime, I would be ver grateful if anyone can give me any suggestions about getting over this - it's poking its nose into everything. Link to comment Share on other sites More sharing options...
Wombat140 Posted August 7, 2017 Author Report Share Posted August 7, 2017 Anyone? How DOyou approach it when it's a word? It being a word seems to cause special difficulties in knowing what to do about getting over it, because it's kind of abstract. So how do you go about getting over a bad reaction to or bad associations with a word? They are such nasty clinging sort of associations. They cling all over me and rub at me with their sticky hands. I'm aware that this is not what associations are supposed to do. <sighs> Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now