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Post by geminilee on Dec 16, 2010 11:24:59 GMT -8
Everyone has that one thing you have always worried about, that fear in the back of your mind. Not the one you trot out when your friends or families ask you what your big fear is; the one deeper than that. The midnight fear, the one you don't even really admit to yourself. When people would ask what my big worry was I would say losing my eyes; going blind. I could deal with anything else, but I read so much that blindness would be torture. I lied, of course: who tells anyone their real fear? But here it is. I can't trust my mind anymore. I had a couple big seizures, the kind they call tonic-clonic these days; apparently I had a couple episodes, several months apart, although we didn't know that was what the first ones were. There may have been more, with no one around to see, that we thought were just generalized complex seizures. Anyway, now that we know I have the big boys, and have had them a couple times, we have to do something about it. So enter seizure drugs. My mind is no longer my own. It is bad enough that after the seizures I can't trust it, because it makes odd connections that it is positive of, or forgets things multiple times. With the new drug, my emotions, which I have always prided myself on my control over, they are no longer mine either. I rant, I rave, I am illogical, I have yelled at my dog . I ran to the doctor like a Beverly Hills housewife, begging for Valium or something. He made me feel better and told me I wasn't being hysterical, that as long as I had to take the seizure drug, the Xanax he was giving me was a treatment, not a psychological crutch or addiction. I know there are a lot of seizure drugs. But I know that the whole point is to affect my brain. Will my brain ever be mine again? Right now I am so mad. And not only mad, I am so slow, although that is getting better, and may have been in part me recovering from the seizure. And I am so scared that I will not get it back, that I will never be me again. I saw my father lose himself as he went through Alzheimer's. I saw him go away a bit at a time. I don't want that. That is unlikely for me (not biologically related) but these pills could still do it. And when it is happening it is so hard to know, because the thing that is supposed to do the checking is the thing that is affected. You think "yeah, I'm perfectly normal" and everyone around you barely recognizes you. I liked me, and I don't want to lose me, and I am so afraid that I won't have a choice.
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Post by kmcm on Dec 16, 2010 12:20:11 GMT -8
There are multiple antiseizure drugs out there. I was on one for migraines, Topomax. I cried for two hours after staring at my son for ten minutes, and not being able to remember his name.
Is there a possibility for you to change meds? Sometimes a different combination is what you need.
Talk to your doctor about your fears. Ever since my car accident i've had memory problems, so medications that enhance that scare the shit out of me.
You are welcome to vent about this all you like, we will not tire of listening to it.
((HUGS))
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Post by geminilee on Dec 16, 2010 12:38:34 GMT -8
I have an appointment, and I know I will get new meds. There is no way she will want me to continue a medicine the requires me to be on tranquilizers continually to function. Well, either I will be on something other than Zonisamide the 21 of this month, or I will be looking for a new neurologist the first of this month.
I guess my fear is that the next drug or drugs will change me, and I won't know. Not sure how many Douglas Adams fans there are here, but I am afraid I will be like the Grebulons, I am damaged, but I can't tell, because the parts that are supposed to detect it are the parts that are damaged. What if the drugs change me, but I can't tell and I think I am just fine?
I can already see it now. I have already thought that since I have some awesomely good side effects with this drug (I can eat after years of chronic stomach problems, and I sleep after a literal lifetime of insomnia) maybe it is worth it. Maybe being mad at the whole world, being one of those people you see screaming at waitresses and help-desk people is worth it. Maybe going from being able to construct a logical argument that took a lot to knock down to being kind of a joke in the logic threads, maybe that is worth it. Maybe going from an 800 verbal SAT to spending 5 minutes trying to spell improbable is worth it. You eat and sleep every day (at least I do now). Maybe it is worth it.
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Post by kmcm on Dec 16, 2010 18:36:12 GMT -8
And maybe different meds will help you do those same things. Medicine WILL change you some. It's up to you to decide if the changes that happen are ones that you can accept.
talk to your doctor, let her know of your concerns, if she doesn't take them seriously, then get a new neuro.
Let me know if i can help, and be sure to take your towel with you.
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Nico
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Post by Nico on Dec 16, 2010 23:31:38 GMT -8
Sometimes it takes time to find the right medication, and then the right dosage - and then it takes time to settle in. Try not to lose hope.
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Post by geminilee on Dec 22, 2010 0:45:11 GMT -8
Interesting day today. Got a call to move my psych appointment forward . Which is probably a good thing. The neuro doctor changed my meds no problem. Until I went to fill the Rx; my insurance won't cover it unless the doctor deems it medically necessary. I asked how much it costs, cause some drugs are cheap. Yeah, this one (it was Lys something I think, not lyrica, something long) was over $300. I am pretty sure insurance will just make them give me something else.
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Nico
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Post by Nico on Dec 22, 2010 13:54:25 GMT -8
I HATE THAT SHIT. Every time my doctor prescribes something, my insurance company is like, "really? does she need it?" as though my doctor just likes using up her prescription pad.
Once, they argued over a medication that would have been cheaper than one I was already taking, that was supposed to prevent me from needing the more expensive one. It took me over a month of dicking around to get my medication.
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Post by geminilee on Dec 30, 2010 14:15:24 GMT -8
Now my neurologist just left a message saying that since she was having so much problems with my insurance, and I was going to be seeing my brand new psychiatrist Monday, she was basically dumping the problem in his lap. She is going to leave me on the drug I really dislike, and let the psychiatrist decide what to change it to, because she said that many/most antidepressants also have anti convulsant properties. That is right, she is leaving the treatment of my (still undiagnosed) neurological condition to a psychiatrist, at least in part because she can't be bothered with the intricacies of the medicaid system.
I am going to ask him what he thinks of this when I see him, but I am reasonably sure at this point I am going to be looking for a new doc.
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Nico
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Post by Nico on Dec 30, 2010 16:32:51 GMT -8
This is the kind of bullshit a doctor pulls when they're not skilled enough to do their job.
Sorry this is happening, I know how frustrating it is to have a doctor pass you off onto another doctor because they can't be bothered to do the job they've already been paid to do.
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Post by geminilee on Feb 20, 2011 14:13:46 GMT -8
I haven't written in a while, in part because things got incredibly dark for me. The medication continued unchanged, and continued to worsen my condition. I got paranoid, and we seriously considered a crisis care center.
Good news now, though! I am being switched over to Lamictal. I am being weaned off the zonisamide. And I am supposed to be getting an appointment with a better psychiatrist soon. Fingers crossed.
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Post by geminilee on Feb 20, 2011 14:39:32 GMT -8
This is a question I have, but I am not sure whether to make a thread on it.
I am dissociative. Nothing as dramatic as DID (multiple personality) or anything like that, but I do compartmentalize what in other people would be facets of the personality into personas. For instance, everyone has a romantic side. Not everyone envisions that romantic side as a 17 year old girl in a flowing white dress, and not everyone's romantic side is capable of having discussions with their mathematic side (while all still being me, that is a very important part. I am not under the delusion that these personas are separate people). I also have walled off certain experiences so that they do not intrude on my daily thoughts.
Zonisamide, I now realize, forcibly removed the walls separating my personas and the unpleasant memories. Some psychiatrists, perhaps most, would consider that a good ultimate goal; making me less dissociative, getting rid of the chorus of voices/thoughts in my head. Even without the unpleasantness of the unwanted memories, though, I missed the personas. I don't like being alone in my head. While I know that all the knowledge is there, it is mine, I still miss being able to turn to that aspect (such and math, or language) for confirmation.
Can I be dissociative and still be "fixed"? Doesn't the fact that I accept it and like it make it a quirk and not an illness? Or should I just keep my big mouth shut regarding this around shrinks, in case they think this is one of things that just HAS to be fixed NOW? Or am I deluding myself, and it really does HAVE to be fixed NOW?
I would like a wide range of opinion on this, but I am not sure of the best place to put it to get that. This personal thread is probably not it, but I don't want to go being all egocentric (a common fault of mine) an posting it someplace when nobody but me actually thinks it it interesting. So, NOTE TO MODS: If you think we have enough dissociatives (or people interested in the topic) on board to warrant a thread with a descriptive title for this, feel free to move it.
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Nico
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Post by Nico on Feb 20, 2011 18:15:19 GMT -8
This is actually a really interesting question. Just from what you've said here, it sounds like your dissociation was a coping mechanism you were very much aware of and in control of. But, I have very little information to go on.
I suppose the important question you have to ask yourself is whether or not it was interfering with your life, or with having "normal" and "healthy" interactions with the rest of the world. I put those words in quotes because I obviously can't define those words for you.
You put quotes around "fixed" - probably because, well - what does that even mean? I don't think I've ever known a person who dealt with heavy emotional problems who reached a state of "Okay, I'm done. Fixed." People improve, become more functional, feel healed or more in control, but I don't think anyone has ever honestly said they're completely cured.
What I'm trying to say is that you probably don't need to be fixed, you just need to find your own balance.
I know where you're coming from, with the discomfort of losing your personas and walls. They were coping mechanisms that worked, and you've grown accustomed to them because they feel like part of you now.
It's possible that you just need to sit with them being gone for awhile, and see if it's okay without them. Sometimes coping mechanisms become outdated and you need to develop new ones. And sometimes that's not something we can see until after we're forced to do it.
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Post by geminilee on Feb 20, 2011 23:58:44 GMT -8
"Normal" and "healthy" don't really apply to my life in any meaningful sense. I had relationships. I have had friendships; 1 or 2, but they have spanned decades. I am functionally a hermit and don't have many acquaintances. That will probably change, mostly at the insistence of my roommate and my boyfriend; they feel it is important to my health that I leave the house on occasion. Other than quieting the chorus/thoughts so that I can go to sleep I have never had any desire to change that part of myself. I think I was in my 20s before I realized that not everyone had quite what I did; after all many books and movies talk about facets of personality, and poems can be quite descriptive when it comes to anthropomorphic emotions. I am disabled, so it is not an issue for work, and since it is all me it is not like I can't "access" a part when I need it (as much as anyone can, I suppose. Emotions are a bit out of my direct control.) I did put fixed in quotes because mental health isn't a broken leg. Especially since I need to be on seizure meds, I probably won't be the me I am used to. I guess a plus here is that I can't remember things for 5 minutes, so everyone can always tell me that is what I was always like, and I will never know. If I can, if I am not deluding myself and they are terribly unhealthy for me, I would like my personas. They have been friends, as much as they were a part of me. I just know that a lot of doctors feel that normality is the ultimate goal. I know I will never achieve that, whether I am alone in my head or I have the Vienna Boys' Choir in here, I just don't want to sacrifice myself on the altar of normality.
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Nico
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Post by Nico on Feb 21, 2011 9:02:05 GMT -8
Is your roommate a girlfriend? Do you have any girlfriends that you spend any time with in person?
From experience (my lifestyle is VERY hermitacious, I have no friends or family within a thousand mile radius - you should read my blog.) I can tell you that as much as the idea of leaving the house may seem pointless or dreadful, it sometimes actually feels good. Of course, I have two toddlers, maybe I'm just trying to run away.
But seriously, I agree with your roommate and boyfriend. Expanding your range would be good for your head. It might feel like suck at first, but not every trip will end that way.
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littlematchstick
Figuring us out
Beauty comes in many forms, she is one of those forms.
~Blessed Be~
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Post by littlematchstick on Feb 21, 2011 9:17:29 GMT -8
I'm not sure how helpful this post will be. But I'll throw my opinions and experience in anyway.
I'm not sure if I understand your "disassociation" completely the way you've described it (so correct me if I'm wrong). But I do something similiar to what you describe. For me, I have a whole other life inside my head..I have friends, a career, a lover, everything that I want out of life but I DON't have in my real life. I talk to these people (sometimes in my head, sometimes out loud if no one is around). I have a life just as complex and in depth (maybe moreso) as my real life. And my relationships and careers change in my *fake life* to meet whatever my needs are in my real life. If that makes sense?
Now I was a psychology major in college, and I KNOW these are not healthy *delusions* (not really dilusions cause I know it isn't real..it's all in my head). BUT they are coping mechanisms for me. They help me deal with all the things that are lacking in my real life. They give me fulfillment that I can't receive on the *outside*. I have spoken to my therapists over the years about this stuff, they tell me it's only a problem if it interferes with you're REAL life. I know that when I've had a more active social life in the past those thoughts diminished some (but never went away). And there ARE times were I prefer living *in my head* as opposed to my real life because I can CONTROL what goes on in there. I can decide who I'm dating or who likes me, or what career I have..etc. Therefore I'm in control of my life, when in fact--in REAL life, I have absolutley no control over anything really.
I was also diagnosed with borderline personality disorder a few years ago which tends to make my social life incredibly difficult at times. I have lost friends and alienated people because I don't always have normal emotional reactions to regular everyday situations. So because I tend to not have a very good social life I regress further into my head and my *imaginary life* there.
It's rather complicated and hard for other people to understand. I'm not sure if it really relates to what YOU'RE going through. But it is similiar. Even if it's not the same, I understand where you're coming from. And if you need someone to talk to, you can always give me a P.M. I went into psychology to help people and even if I can't really *help* I'd love to listen because anything to do with the mind fascinates me. (I hope you don't take that the wrong way---I don't mean it to be rude, just that I like to learn as much as I can about people who are different then what society believes to be the *norm*). So if you need someone to talk to or any other advice or ideas, feel free to give me a holler.
And BIG hugs to you--don't worry about whether what you feel is *right or wrong*, just accept yourself for who you are NOW and be the best person you can be. That's all anyone can expect of you.
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