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I'm very anxious at the moment over the neurologist appt that I have on February 2nd.

I'm very worried that he is going to take me off the Topamax because of not having a history of seizures other than the one I had in January of 2010.

And (you guys know I'm usually about adding or changing medications), but I'm very anal right now about wanting to keep this medication on my medication list.

I don't care if I have a seizure disorder or not. I'd rather live a shorter life on Topamax (regardless if I have a seizure disorder) than to risk going off of it and risking seizures (knowing the fact the seizures can be deadly too; and of course I wouldn't want to scare my family or friends over having seizures if they can be prevented).

The inpatient psychiatrist at the psych unit of the hospital prefers I be on Topamax because of having the seizure on Clozaril 50mg and if I went off of Topamax, I'd risk having another one. (and I agree not wanting to take that chance).

I was evaluated by a neruo doctor in the hospital shortly after the seizure and he told me that he was going to "cut" the Topamax and I got nervous and I told my pdoc to not let him take me off the medication. The pdoc at the hospital knows about my anxiety and panic attacks and has been treating me as an inpatient for 7 years now, So as to keep me comfortable I guess, the Topamax was never touched.

I know I shouldn't have done that type of "manipulating", but I was very scared then, and I'm scared now.

I'm very stubborn and I don't want to change my position. I know most won't agree with my position, but I stand clear:

I don't want to change / remove the Topamax!

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The purpose of spinning your wheels over this now would be what? You are fighting your own imagination. Stop it.

No matter how much you want to be, you are not the treatment expert. You need to let the doctors do their jobs and be cooperative. Some single seizure incidents don't require life time medication. That is the ndoc's call.

How much of the desire to keep Topamax is about bipolar? Be honest.

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The purpose of spinning your wheels over this now would be what? You are fighting your own imagination. Stop it.

No matter how much you want to be, you are not the treatment expert. You need to let the doctors do their jobs and be cooperative. Some single seizure incidents don't require life time medication. That is the ndoc's call.

How much of the desire to keep Topamax is about bipolar? Be honest.

Too be honest, I just worry about the Topamax for seizure control. I know it can be used for bipolar indication, which up till the seizure I was using it for, so now I'm using it for a dual purpose. And it was even written that I was taking it for bipolar and seizures, and still the pdoc won't prescribe it because of the taking it for seizure control. He says he doesn't prescribe antiseizure medications (which I don't think is true because twice he mentioned Lamictal to me; never attempted).

But the pdoc I have says that because I'm on the Topamax, I have a better protection against seizures with the Clozaril (which is the medication that gave me the seizure a year ago).

I know I'm not the treatment expert, but I do have a right about what I put in my body.

I hate to bring the past up, but Geodon was giving me 8 side effects, and I told the programs pdoc that I was having these side effects (I was only on 20mg) and he kept me on this medication for one month (one of the side effects I was complaining about was rash). This same pdoc put me on Neurontin and I was getting pain so bad that I was falling at home and in program and what does he do? (increases the medication). I told mom a lie just so I could go inpatient just to get off of it, because I couldn't live that way anymore (the gdoc wanted to tell me at 22 years old, I had osteoarthritis)

We may not always be the expert but sometimes you know what's causing what and you have to be assertive and speak your mind about things because I had told the doctor for a month on the Geodon, to please take me off the med, (I was even crying in front of him) and he wouldn't even allow me to cry (because he figured I was a big man), and I wanted off the Neurontin, but he kept increasing it week after week.

This is part of why I hated the program's psychiatrist (you know somethings wrong, you tell him, you ask him to help you, he does something else). That's why when it came to him no longer wanting to prescribe the medication that I knew I needed, I flipped out at program, told them I wanted the papers, get me home. I couldn't handle it. I was very outraged. I may not of handled it correctly that day, but try being unfairly treated by a psychiatrist for over a year and then say calm down when he won't help you anymore.

That's why I'm standing up for my right to want to stay on the Topamax.

I don't care if it hurts me years later.

I'd rather be mentally stable and rest assured of not having a possible deadly seizure and be at home with family, then be having seizures and scaring the pants off my brother and my mom.

If you had the choice of knowing you'd be seizure free on medication but die 10 years sooner or go off the medication and risk having a deadly seizure anytime but never know when it happens, which would you pick?

(I gather the answer is clear)

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I know I'm not the treatment expert, but I do have a right about what I put in my body.

To a point. It's more like you have a right about what NOT to put in your body. You don't get to decide that just because you want a certain medication, you get it. You might be willing to give up ten years of your life down the line, but a doctor swore an oath to do no harm, and if he deems a medication unnecessary and possibly harmful, well, he's the one who went to medical school.

But Andy, you haven't even had the appointment yet; obsessing today isn't going to help. Get out and go for a walk, breathe some fresh air, and try not worry about something you can't change.

ETA: Lying to go inpatient to get off a drug shows such bad judgment and poor handling of the situation that it alone should be enough to show you why you shouldn't try to be your own doctor.

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I don't think the answer is clear at all. I would not be the slightest bit interested in losing years of my life to take an unnecessary med. I would rather take the risk of another seizure, then, should that happen, reevaluate.

I'm guessing you're misunderstanding what your pdoc meant about not prescribing amtiseizure meds. I'm sure he prescribes plenty of them, for psychiatric purposes. I think he just doesn't want the responsibility of managing anyone's seizure control meds, as he recognizes neurology not to be his specialty. I strongly suspect that, should you receive a clean bill of health from the neuro, your pdoc would be willing to consider prescribing topamax, for your psychiatric disorder.

There's a huge difference between having a good idea of what might be causing certain side effects, and trying to be your own neurologist.

FWIW, neither of the examples you give, to demonstrate your dislike of your program's pdoc, seem so bad to me. It's not at all unusual to stay on a new med for at least a month, to see if side effects subside, or prove to be worth dealing with, due to the med's efficacy. Given that one of neurontin's indications is pain management, it's really not so surprising that your pdoc's response to your complaining of pain was to increase it.

Your lying to your mother to go to the hospital to d/c it, on the other hand, makes no sense at all.

I'm moving this to the a/c board, as your agenda here seems to be more to have a discussion about your love of topamax, than one about managing your anxiety around a possible change.

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I don't understand why you guys tell me differently when I'm doing like you guys told me when I wanted to change my medications.

When I wanted to go changing this and adding this and going back on meds that didn't work, I was told by you guys "Don't rock the boat".

Now, I'm being told, well go and see what he does. (maybe he'll change it and maybe he won't).

But that's "rocking the boat", and I don't want to change what working. As the other saying goes, "if it ain't broken..."

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Your lying to your mother to go to the hospital to d/c it, on the other hand, makes no sense at all.

Imagine not being on the Neurontin and not having any type of pain complaints. Then you start Neruontin and your sleep is off, you start having pain, you start having irritability and mood swings, and you talk to your pdoc about it. So he says, ok, let's increase the dosage. So you do that. Over the week your sleep disturbances get's worse and your pain increases and your more irritable and having crying spells and having other mood problems. You see him the following week and tell him, things are getting worse, I think it's the Neurontin. But instead of acknowledging your thoughts and opinion, he just goes lets double the dose.

So now your on almost the near max dosage that can be prescribe and you are in so much pain on a day to day basis you are falling at least 5 times a day, your mood is so off your crying so much your making your loved ones a nervous wreck, and you are still having problems sleeping. You go to a gdoc about the falling and being told at the age of 22 you are going through the beginning stages of Arthritis.

The only med change that has been implemented is the Neurontin, so you go back to the pdoc and let him know what's going on (at this point you are in tears) begging him to get you off this F****ing medication and he still won't do it.

You tell me, would you continue to follow what this doc is doing or would you lie to get off this drug?

It took me a matter of 2 months to get on this medication (titrating every week) and a horrible 2 weeks inpatient to get off of this drug.

There was no way I was going to live with falling to the floor more than 5 times a day from intense pain, crying spells, irritability, mood swings, sleep disturbances, restlessness, all because of a pill a pdoc wanted me to take 3 times a day.

I'm sorry, but maybe it's in a way the docs fault for making me my own doctor / medication manager.

I stand up for my rights and if it means being inpatient to get it, than that's what it takes.

I'm not going to let people walk over me.

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Cheese and fucking rice, not this again. Not to be a dick or anything, but didn't you just post almost the exact same thing about your Topamax a few days ago (which was already a repeat of the 17 other times you've mentioned this before)? Saying the same thing over and over and obsessing over it isn't helping you or anyone else. You just get progressively more freaked out about it as you continue ruminating over it, and the entire rest of the world gets sick of hearing about it, which makes it harder for you to get answers/help when you need it when something different comes up for a change.

Topamax (and whether or not you're on it) is not the problem here: it's your never-ending rumination and obsessive need for control over your meds. That is something you need to work on if you want to feel better, which would give you roughly an extra 75 hours a day of free time to take care of the other things you want to do/improve in your life.

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Your lying to your mother to go to the hospital to d/c it, on the other hand, makes no sense at all.

Imagine not being on the Neurontin and not having any type of pain complaints. Then you start Neruontin and your sleep is off, you start having pain, you start having irritability and mood swings, and you talk to your pdoc about it. So he says, ok, let's increase the dosage. So you do that. Over the week your sleep disturbances get's worse and your pain increases and your more irritable and having crying spells and having other mood problems. You see him the following week and tell him, things are getting worse, I think it's the Neurontin. But instead of acknowledging your thoughts and opinion, he just goes lets double the dose.

So now your on almost the near max dosage that can be prescribe and you are in so much pain on a day to day basis you are falling at least 5 times a day, your mood is so off your crying so much your making your loved ones a nervous wreck, and you are still having problems sleeping. You go to a gdoc about the falling and being told at the age of 22 you are going through the beginning stages of Arthritis.

The only med change that has been implemented is the Neurontin, so you go back to the pdoc and let him know what's going on (at this point you are in tears) begging him to get you off this F****ing medication and he still won't do it.

You tell me, would you continue to follow what this doc is doing or would you lie to get off this drug?

It took me a matter of 2 months to get on this medication (titrating every week) and a horrible 2 weeks inpatient to get off of this drug.

There was no way I was going to live with falling to the floor more than 5 times a day from intense pain, crying spells, irritability, mood swings, sleep disturbances, restlessness, all because of a pill a pdoc wanted me to take 3 times a day.

I'm sorry, but maybe it's in a way the docs fault for making me my own doctor / medication manager.

I stand up for my rights and if it means being inpatient to get it, than that's what it takes.

I'm not going to let people walk over me.

Lying to your mother, to go needlessly to the hospital, to be taken off a med, isn't really standing up for your rights, it's kind of a weird, childish, way of going about something.

The adult type approach would have been to just tell your doctor you weren't going to take it anymore. As far as I can remember, you weren't in any kind of court ordered treatment at the time, so there wasn't really any reason you couldn't just refuse the med, and sort out something else with your doctor, without all the manipulative melodrama.

I have to say, from my own experience with neurontin, and everything I've read about it, I just have a very hard time believing it was responsible for the mood instability you were experiencing at the time.

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I don't understand why you guys tell me differently when I'm doing like you guys told me when I wanted to change my medications.

When I wanted to go changing this and adding this and going back on meds that didn't work, I was told by you guys "Don't rock the boat".

Now, I'm being told, well go and see what he does. (maybe he'll change it and maybe he won't).

But that's "rocking the boat", and I don't want to change what working. As the other saying goes, "if it ain't broken..."

It's been a while, but what I mostly recall telling you, when you've wanted to mess around with your meds in the past, was to let your doctors do their jobs. Still applies.

Here's an idea: why don't you call your pdoc, and find out if he'll consider prescribing topamax for you, for mood symptoms, if your neuro gives you a clean bill of brain health? Odds are, you're having all this agita over something that's going to be fine anyway.

Just generally, Andy, when you find yourself obsessing over things like this, that haven't yet happened, and may well never happen, rather than spinning it all out of control in your brain, why don't you start thinking about solutions to the possible problems? You aren't a child, you aren't living within a Greek tragedy, subject to the whims of the fates. You are an adult, with a reasonable degree of control over your own life, should you elect to start acting like it.

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I love it when people mention Greek tragedies!

It gets me all hot and bothered. Yay.

But yeah, andy, srsly, DO something, don't ruminate. Talk to you lifecoach or I forget the name of your peer advocate dude about this. vent. Make a plan.

Anna

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Lying to your mother, to go needlessly to the hospital, to be taken off a med, isn't really standing up for your rights, it's kind of a weird, childish, way of going about something.

The adult type approach would have been to just tell your doctor you weren't going to take it anymore. As far as I can remember, you weren't in any kind of court ordered treatment at the time, so there wasn't really any reason you couldn't just refuse the med, and sort out something else with your doctor, without all the manipulative melodrama.

I have to say, from my own experience with neurontin, and everything I've read about it, I just have a very hard time believing it was responsible for the mood instability you were experiencing at the time.

To be fair, I personally had a rather unusual and dramatically negative reaction to Neurontin (which at least a couple people on this site got to witness part of in person). Nearly every psych/neuro problem I've ever had all happened simultaneously and were all amplified. It was not pretty. It was also weird enough that no doctor who's been told about it could come up with an explanation or had even ever heard of anything like that happening, but I guess it's at least within the realm of possibility.

Totally agree about it not being a great way to handle the situation and why, though.

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Lying to your mother, to go needlessly to the hospital, to be taken off a med, isn't really standing up for your rights, it's kind of a weird, childish, way of going about something.

The adult type approach would have been to just tell your doctor you weren't going to take it anymore. As far as I can remember, you weren't in any kind of court ordered treatment at the time, so there wasn't really any reason you couldn't just refuse the med, and sort out something else with your doctor, without all the manipulative melodrama.

I have to say, from my own experience with neurontin, and everything I've read about it, I just have a very hard time believing it was responsible for the mood instability you were experiencing at the time.

To be fair, I personally had a rather unusual and dramatically negative reaction to Neurontin (which at least a couple people on this site got to witness part of in person). Nearly every psych/neuro problem I've ever had all happened simultaneously and were all amplified. It was not pretty. It was also weird enough that no doctor who's been told about it could come up with an explanation or had even ever heard of anything like that happening, but I guess it's at least within the realm of possibility.

Totally agree about it not being a great way to handle the situation and why, though.

That's really interesting. Now I'm incredibly curious about how that could have happened. I love brains.

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I love it when people mention Greek tragedies!

It gets me all hot and bothered. Yay.

But yeah, andy, srsly, DO something, don't ruminate. Talk to you lifecoach or I forget the name of your peer advocate dude about this. vent. Make a plan.

Anna

I know a lot of Greek tragedies. Antigone. Electra. Medea. Iphgenia in Aulis.

Just saying.

Although, I'm realizing I mostly read the French versions. That's just weird.

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Your lying to your mother to go to the hospital to d/c it, on the other hand, makes no sense at all.

Imagine not being on the Neurontin and not having any type of pain complaints. Then you start Neruontin and your sleep is off, you start having pain, you start having irritability and mood swings, and you talk to your pdoc about it. So he says, ok, let's increase the dosage. So you do that. Over the week your sleep disturbances get's worse and your pain increases and your more irritable and having crying spells and having other mood problems. You see him the following week and tell him, things are getting worse, I think it's the Neurontin. But instead of acknowledging your thoughts and opinion, he just goes lets double the dose.

So now your on almost the near max dosage that can be prescribe and you are in so much pain on a day to day basis you are falling at least 5 times a day, your mood is so off your crying so much your making your loved ones a nervous wreck, and you are still having problems sleeping. You go to a gdoc about the falling and being told at the age of 22 you are going through the beginning stages of Arthritis.

The only med change that has been implemented is the Neurontin, so you go back to the pdoc and let him know what's going on (at this point you are in tears) begging him to get you off this F****ing medication and he still won't do it.

You tell me, would you continue to follow what this doc is doing or would you lie to get off this drug?

It took me a matter of 2 months to get on this medication (titrating every week) and a horrible 2 weeks inpatient to get off of this drug.

There was no way I was going to live with falling to the floor more than 5 times a day from intense pain, crying spells, irritability, mood swings, sleep disturbances, restlessness, all because of a pill a pdoc wanted me to take 3 times a day.

I'm sorry, but maybe it's in a way the docs fault for making me my own doctor / medication manager.

I stand up for my rights and if it means being inpatient to get it, than that's what it takes.

I'm not going to let people walk over me.

Lying to your mother, to go needlessly to the hospital, to be taken off a med, isn't really standing up for your rights, it's kind of a weird, childish, way of going about something.

The adult type approach would have been to just tell your doctor you weren't going to take it anymore. As far as I can remember, you weren't in any kind of court ordered treatment at the time, so there wasn't really any reason you couldn't just refuse the med, and sort out something else with your doctor, without all the manipulative melodrama.

I have to say, from my own experience with neurontin, and everything I've read about it, I just have a very hard time believing it was responsible for the mood instability you were experiencing at the time.

There would be no way at that time I could tell the doctor that I would discontinue Neurontin when I was on 1800mg per day (600mg 3x/day) to 0. That would result in the risk of seizure. I was crying to the pdoc @ the program to please take me off of it and he refused so what would you want me to do? (I'm sleeping less than 4 hours a night, I'm very rapid cycling (my mood would shift within hours), very intense pain that would cause me to fall over 5 times a day). You can't honestly expect me to adult and say "I'll listen to the doc and continue the Neurontin, even though I'm in intense pain". That's why I lied to mom to get myself the help that the program's pdoc wasn't providing me.

I don't understand why you guys tell me differently when I'm doing like you guys told me when I wanted to change my medications.

When I wanted to go changing this and adding this and going back on meds that didn't work, I was told by you guys "Don't rock the boat".

Now, I'm being told, well go and see what he does. (maybe he'll change it and maybe he won't).

But that's "rocking the boat", and I don't want to change what working. As the other saying goes, "if it ain't broken..."

It's been a while, but what I mostly recall telling you, when you've wanted to mess around with your meds in the past, was to let your doctors do their jobs. Still applies.

Here's an idea: why don't you call your pdoc, and find out if he'll consider prescribing topamax for you, for mood symptoms, if your neuro gives you a clean bill of brain health? Odds are, you're having all this agita over something that's going to be fine anyway.

Just generally, Andy, when you find yourself obsessing over things like this, that haven't yet happened, and may well never happen, rather than spinning it all out of control in your brain, why don't you start thinking about solutions to the possible problems? You aren't a child, you aren't living within a Greek tragedy, subject to the whims of the fates. You are an adult, with a reasonable degree of control over your own life, should you elect to start acting like it.

My current pdoc will not prescribe Topamax for bipolar indication because he doesn't believe in using Topamax for bipolar.

-------

I really do wish that some of the stuff that I post that even if you don't agree with what I did, it doesn't seem like you believe me. Oh, "You couldn't of had the mood instability from the Neurontin, I doubt it"! That's the impression I got when I read the reply, and that makes me feel unvalidated because I'm telling you the truth as to what happened to me and no one believes me. (like what I say, people are going to disregard).

I may have odd reactions to medication and do "strange" things, but that doesn't make the what you may think "stories" untrue!

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Andy in the situation you describe, I would have told the doctor I wasn't going to continue taking neurontin, and worked with him to come up with a plan to taper. Your doctor can't make you take a med. You can say no. There is no way in the world it would even occurr to me to lie to my mother - whoever - to manipulate my way into an unnecessary hospitalization, to stop a med.

I didn't mean to suggest.I didn't believe what you were saying. Rather, that I questioned your attribution of your problems to the neurontin.

Sometimes I do wonder if you have any capacity for independent thought whatsoever, or any sense of self reliance. I mean, you don't seem to even try to come up with solutions to your problems, and the extent to which you defer to, and depend upon, your mother is not healthy at your age. The only independent decision I can remember you making was leaving the pdoc at your program, and that was in the midst of a temper tantrum.

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I was telling the doctor "no" but he wouldn't give in. He kept telling me to take it and gave me a new prescription to fill. I'm not going to risk having a seizure by choosing not to take a dosage that large. It's not like I was on the lowest possible dosage. I was on the at the time I thought "2nd highest possible dosage spread apart over 3 pills". And I knew that going off an antiseizure med would result in seizures.

So of course I did the wrong thing by telling my mom a lie, but since the pdoc wouldn't give in and work with me to get me off the medication, I know I couldn't self taper, so the only other option I saught was the hospital.

(I was on more meds at this time than I am on now too. I was probably on 8 medications back then and none of them were working, so my thinking was way off.)

I'm not asking you to be completely in my shoes.

This is the only background I ask you to carry - you are having side effects (whatever they may be) from a psych med, and you talk with the psychiatrist and you tell the psychiatrist you want to get off the medication and you know that if you were to go cold turkey you could risk deadly side effects, and the psychiatrist doesn't work with you (even though you even show up in tears begging the psychiatrist) to even taper the medication and sends you on your way with a new script in hand, what would you do next?

(I just want to know how you would've handled that)

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I would make sure I had a reasonable supply of all my meds, and then I would look for a new pdoc. In the interim, I would talk to my gp about a tapering schedule.

But I also have to say, I wouldn't have brought all the melodrama, the crying and begging, to the pdoc in the first place. Those kinds of theatrics don't encourage people to take you seriously, treat you with any respect, or believe your self-assessment of what's creating problems. Act like a child, and that's how you'll be treated.

I would have calmly told him I wasn't going to continue taking the med, so he needed to either work out a tapering schedule for me, or refer me to someone else who would, unlessnhe wanted to risk a malpractice suit, in the event that I stopped taking it, after having told him I was going to, and been denied the necessary medical advice to do so safely. And, if I had one, I might have brought my case manager, or counselor, or some such person, to the appointment with me, if only to serve as a witness.

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When I had my Neurontin adventures, I was several hundred miles away from my doctor over a holiday weekend or something, so I couldn't really get in touch with him. I just worked with what I had and took fewer pills less often over the course of a week or so, until I reached zero. It was not fun, but I survived, and my doctor agreed afterward that it was the right way to do it in that situation. If he had disagreed and demanded that I keep taking it when I was that miserable, like what you're describing, he would not still be my doctor (as the first couple ones I saw learned when they tried to work "at" me instead of with me).

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