Cetkat Posted July 18, 2011 Share Posted July 18, 2011 Ok, so this was the start of it: http://www.crazyboards.org/forums/index.php/topic/42095-couldnt-stop-looking-up/page__p__445485__hl__%2Bcan%26%2339%3Bt+%2Bstop+%2Blooking__fromsearch__1#entry445485 Well, the episode went away after a few hours, and I've since learned that Xanax will take care of it - possibly with the aid of Nadolol as I take it as well (Cogentin is a treatment for it) - within 30mins or less. But this of course means, that it's happened again. Been happening I should say. I'm fairly certain it is and was the Abilify. I'm uncertain as to the direct factors precipitating them, but I've read that even stress can play a factor - so that's up in the air. All I know is that another one didn't happen for months, but since then I've been getting them multiple times a month at random. I've largely just been medicating and ignoring. Only, I stopped the Ablify at the start of this month. I know it takes time to get out of your system, and I'm giving it the leeway to do so.. but I'm still getting them. In fact, I had one just a few hours ago (the second that I recall since stopping the med). This prompted looking into it for a second time and therefore this post. One specific question I have regards this study: http://www.sciencedirect.com/science/article/pii/S0967586806002669 I don't have my university access codes yet to try and find somewhere to view it for free, and am curious to know if the Seroquel is an ongoing treatment which stopped them from occurring, or if it was a temporary treatment with a lasting effect? I'm beginning to worry that they've become chronic (or tardive) and I'm not sure what to do about that. Perhaps it would have been best to have stopped the Abilify, but it was helping and should the overall treatment had worked, there'd be a willingness on my part to simply medicate it and watch closely for anything more severe. I am still on the Saphris 20mg.. so that could be a factor, but I've been on almost all the AAP's and the Abilify was the only one to cause any problems. And what with the above Seroquel info, *shrug*. Though, I've also read that Clozapine was thought of as a potential treatment - and one that wouldn't cause it, but does itself have at least one documented case. Anyway, I just decided to start documenting when they happen to know the frequency for sure.. as well as the meds surrounding them. I'd appreciate any insight/thoughts anyone may have on this matter.. Link to comment Share on other sites More sharing options...
notfred Posted July 19, 2011 Share Posted July 19, 2011 Wow. I've had an acute dystonia but not an Oculogyric Crisis. They look scary. There is no mention of Oculogyric Crisis in the Abilify PI, just Dystonia, 2%, which would include Oculogyric Crisis. It's 20 days to clear Abilify, you are almost there. Very little is left in your body. If it were me I would be on a beta-blocker at the first sign of a dystonia and stay on one until I had cleared Abilify and then some. Then stop the beta blocker and see. nf Link to comment Share on other sites More sharing options...
bpladybug Posted July 19, 2011 Share Posted July 19, 2011 Have you talked to your doctor? or a doctor? that sounds awful, sorry this is happening to you but I would go to the doctor right away Link to comment Share on other sites More sharing options...
notfred Posted July 19, 2011 Share Posted July 19, 2011 Wow. I've had an acute dystonia but not an Oculogyric Crisis. They look scary. There is no mention of Oculogyric Crisis in the Abilify PI, just Dystonia, 2%, which would include Oculogyric Crisis. It's 20 days to clear Abilify, you are almost there. Very little is left in your body. If it were me I would be on a beta-blocker at the first sign of a dystonia and stay on one until I had cleared Abilify and then some. Then stop the beta-blocker and see. What about your pdoc in all of this ? nf Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 Yeah, the Nadolol is a beta-blocker. I take it often but not always every day for tremor/anxiety. It's never been scary. I just get this incredible urge to look up and can only look back down again for about 30sec at a time. So I just stare at the ceiling. I can still blink, and I don't have any of the neck stuff. Makes my eyes hurt a bit and gives me a headache. Before, I just saw it as a side-effect of steady-states/exhaustion/etc getting wonky & it didn't happen as much so I wasn't concerned. There always seemed to be something else more pressing to go to my pdoc with so it never got brought up - he's very in and out. In hindsight I should have said something.. although in retrospect I probably wouldn't have changed my treatment. Other than it slowly getting more often, it hasn't progressed. I'd bring it up now, but I'm in-between pdocs. I assumed that it'd go away post-Abilify, it's only now that I'm beginning to worry. Edit: Typo Link to comment Share on other sites More sharing options...
AnneMarie Posted July 19, 2011 Share Posted July 19, 2011 When do you have a pdoc appt? Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 Okay, so you're tapering off all of your meds, or a bunch of them, while in between pdocs, and now, predictably, something is getting wonky and you have no one to consult with? I get that you're poor and trying to do for yourself as much as you can, but shit like this is why we say to do things with a doctor's supervision. Pretty much. But it's not the lack of the med that's doing it. The taper *should* have fixed it. Now is when I'm looking at my options. It can wait.. it's not getting worse, but now that it's not getting better either and therefore presenting as a problem I'm trying to see what I *can* do, if anything. I may just be stuck with it. There isn't any treatment to go to the doctor for. Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 When do you have a pdoc appt? I won't be able to go until the start of Sept. I had hoped/planned sooner - but that's not going to happen. Link to comment Share on other sites More sharing options...
Anna Posted July 19, 2011 Share Posted July 19, 2011 Actually, there is treatment to go to the doctor for, you are tapering off all your meds and experiencing weird things. This kinda goes beyond the scope of the site, frankly. I have no idea what to tell you other than to go to the doctor, even if it's to an ER and they send you to an inpt unit. Anything else would be kind of irresponsible. Anna Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 Actually, there is treatment to go to the doctor for, you are tapering off all your meds and experiencing weird things. This kinda goes beyond the scope of the site, frankly. I have no idea what to tell you other than to go to the doctor, even if it's to an ER and they send you to an inpt unit. Anything else would be kind of irresponsible. Anna Ok. All I'm trying to say is that this is completely separate from the dc/taper because it's been going on for awhile now. Should had mentioned it, didn't, too late now. Now that it's not resolving on it's own, I'm trying to learn what I can in order to move forward. But I understand your position. Link to comment Share on other sites More sharing options...
AnneMarie Posted July 19, 2011 Share Posted July 19, 2011 Actually, there is treatment to go to the doctor for, you are tapering off all your meds and experiencing weird things. This kinda goes beyond the scope of the site, frankly. I have no idea what to tell you other than to go to the doctor, even if it's to an ER and they send you to an inpt unit. Anything else would be kind of irresponsible. Anna Ok. All I'm trying to say is that this is completely separate from the dc/taper because it's been going on for awhile now. Should had mentioned it, didn't, too late now. Now that it's not resolving on it's own, I'm trying to learn what I can in order to move forward. But I understand your position. You have a label for this symptom because someone on CB gave it to you. It may well be a symptom of other illnesses and disorders. You do not know. CB members are not doctors. Neither are you. Even if you were, smart doctors don't treat themselves. Go to the ER if you cannot see another doctor. I'm not sure how you can say this is no big deal. It sounds like it is one. Go to a doc. Link to comment Share on other sites More sharing options...
Velvet Elvis Posted July 19, 2011 Share Posted July 19, 2011 it's not unheard of for some forms of EPS to last beyond the duration of treatment without being permanent. TD is the only flavor that can be permanent. What does benadryl do? I also recommend seeing a doc about this, even if it's just a GP. Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 The reasons why I'm not at the doctor right now are, that: "Acute oculogyric crisis in a patient on antipsychotic drug therapy is a familiar phenomenon. The presentation is a specific dystonia, and differential diagnosis is almost never considered." And it still is acute. I'm on an AAP and the offending one isn't completely gone. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902098/ And that the differential diagnosis possibilities are not at all likely. "Other causes can include postencephalitic Parkinson's, Tourette's syndrome, multiple sclerosis, neurosyphilis, head trauma, bilateral thalamic infarction, lesions of the fourth ventricle, cystic glioma of the third ventricle, herpes encephalitis, kernicterus and juvenile Parkinson's." And also Tetanus and calcium/mag issues. (I've had recent bloodwork which rules out the latter.) http://en.wikipedia.org/wiki/Oculogyric_crisis http://emedicine.medscape.com/article/814632-differential I don't have brain damage, no injury. I have a tremor, but it acts independent from L-Dopa/Mirapex and has actually gotten better since coming off of both Mirapex and Lamictal - it is also treatable with Nadolol, completely. So that's Parkinson's. Could there be something else neurological wrong, yes. Can/will that be determined by an ER vist - no. Right now it's stable and completely explainable by the meds. Just because it hasn't gone away doesn't mean there's another cause. Apparently, sometimes it *doesn't* go away. If I went to the ER or GP I'd get sent home with the option of going to a Neurologist, but they would believe that it was EPS because there are no other symptoms. Upon going to a Neurologist, I could get an MRI/CT and be told to come off the Saphris and wait and go from there. That would find a tumor or lesion if there was one. If I had the money, I'd probably get that done just for peace of mind; but, the likelihood of that is remote, and I don't. It makes perfect sense to me (after thinking about it last night) to go off the Saphris, wait for the pdoc, then - should it still be occuring, get him to send me to the neurologist for tests. It's very good to know that EPS can take time to resolve. Thank you. Good question about the Benadryl. I haven't needed to treat it that way so I don't know. Next time I'll take that instead and see. Should it progress at all my first stop will be the neurologist at the hospital. That would be cause for alarm. Link to comment Share on other sites More sharing options...
AnneMarie Posted July 19, 2011 Share Posted July 19, 2011 Couldn't a trip to the ER help get you into a psych faster? I'm thinking that if you need to d/c the AAP, that the ER docs will know it s/b done under the supervision of a pdoc. Link to comment Share on other sites More sharing options...
Cetkat Posted July 19, 2011 Author Share Posted July 19, 2011 Couldn't a trip to the ER help get you into a psych faster? I'm thinking that if you need to d/c the AAP, that the ER docs will know it s/b done under the supervision of a pdoc. It could. Definitely something to keep in mind. The doc I'm going to go to is a recommendation from an old pdoc for a colleague who accepts Medicare though.. so I really want to see him for the Emsam. I really liked my old doc from up here - I'd go back to him if I could. I can go back to my last one still if necessary for a price - no wait because it's a clinic. Trying to get through the dc without it. Saphris will be the last med. I was on a bunch. I was going to stay on it longer for sleep, but that no longer sounds prudent. Link to comment Share on other sites More sharing options...
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