Nuero Visit. Yay?

[Aicila]

Going for another nuero appt tomorrow. Maybe it is just because of my weekend or maybe it is just because I am tired right now. I don't want to go! I have felt pretty good lately and whenever I leave there I don't. I have to change something. Imagine a pouting little 5 year old who you just told for the 3rd time to go clean their room or they aren't getting a toy. That's me. Soon I will be throwing a fit.

Granted there is a drug I don't want to be on because of how I feel when I don't take it, but now I'm afraid to not be on it because I'm fine now. I just didn't want it before. How childish does that sound? See? I even know I sound like a little kid. I just don't want to go. Every other appointment I have been to, I have wanted to go to. This one I don't want to. I know I can tell him I'm fine and he doesn't need to adjust anything. But I'm afraid that if I say that I'm fine he will try and adjust something lower and screw everything up again. I know I don't have to. But what if he has good reason and he "suggests" it and rationalizes it and, really, who wouldn't want to be on lower medications? Well, right now...ME! I'm good where I'm at Doc. Leave me be for a bit at least. Ok, just moved into tantrum mode...

[petero]

since my, I guess, technically first neurologist recommended I get off the phenytoin (that the Dr. who diagnosed me got me on) and get on Keppra (which had a very bad effect on me to say the least) and since figuring out that the number of Neuros or epileptologists who have actually experienced seizures must be ridiculously low, if not almost nonexistent, I have been strained and pessimistic about the medical community regarding my epilepsy. especially when it seems they are either intent on destroying my perception of reality as a whole (Keppra etc.) or able to not much more than have me look this and that way and say "aaahhh".
the second approach to me seems cynical, skeptical... or maybe it's that Keppra destroyed my perception of reality overall.
I had a bad ER trip after a seizure, during a cluster, who knows what it was. but excruciating pain and vigorous interaction for hours does not mix.
it's hard for me to say "ok 'this' is a seizure" unless I go tonic clonic around people who fill me in later.
I think I know what you're referring to though. most likely not entirely, because I have epilepsy and I still have no clue whatsoever about the complexities.
I think it might actually be good for your doctor to hear about your fears and attitudes.
it seems apparently that epilepsy is scary as shit.
prior to it really starting to sink in with me, which it still is, I know now that I had no clue whatsoever what it is.
considering then that doctors don't either, I think it is best to address your concerns with your doctor and pray for the clarity to be able to do so.
I hope that doctors come on this site (I'm sure they do) and get some insight.
I've thought I could have had non-tonic clonic seizures long before diagnosis and that it may have screwed up my abilities with social interactions, so especially going through the reveal-all process with Dr.s is harrowing, especially when I'm not sure what I'm revealing, psychologically/physically... and especially when epilepsy is apparently a disease that can change entirely within the span of a millisecond. one second everything is fine, the next second nothing but ugly...
peace
Peter

[Nakamova]

Aicila --

As you say, they can't make do something you don't want to do. You can always hear the neurologist out, and then say that you need some time to think about whether or not you want to make a change at this time. That's all there is to it.

[Meetz1064]

has so succinctly put it, YOU only have to LISTEN TO the doctor, you don't necessarily have to DO exactly what they SAY. YOU are in control of what happens.

Go into the appointment with an OPEN mind. Ask pertinent questions, and then say that you'd like some time to think things over. If the doctor isn't willing to respect that, perhaps it's time to go doctor shopping, because they're not willing to respect YOU. They're not God, after all.

And you shouldn't be made to feel like a little kid, either.

Take care, and have a great appointment.

[Aicila]

Thanks guys. I may be acting a little over dramatic about it. I am really nervous about messing with anything right now. I have heard that 4 months is the magic month mark when dealing with drugs or something like that. It has only been 3, and things seem to be going well. Every other visit something has changed, or even between visits and some of those changes have had some side effects I don't want to go through again. I know you guys can relate. I don't want to experience that. My stress level with real life is just now getting to a point I feel I can actually handle and I am becoming stronger and my self esteem is getting higher, but I'm nervous I can't take on something like drug changes right now.

[Aicila]

So my visit actually went really really well and I feel dumb that I was nervous at all. My doc was very supportive of me in all aspects of what I presented to him and I couldn't have left there any happier then I did.

He isn't changing any of my core meds because my siezures are holding strong. He said that the little ones I am still having can most likely be contributed to my lack of sleep and my migraines that are still looming and my migraines are most likely due to my lack of sleep. My insomnia is also most likely due to the Viibryd I was put on. He gave me permission to take Ambien every night instead of every once in a while, as well as told me to get rid of the Restoril which only worked until 2 or 3 am. I also have hyper-big word which means super sensitive sense of smell where I get really aggravated when I smell certain things which he said is a sign I'm getting ready to get a migraine so he gave me a high dose of naprosyn to take instead of maxalt since I can't take that anymore because I experienced something to do with serotonin. Either way, the doc feels very strongly, and I am very hopefull, that if I can start sleeping again that both my migraines and the remaining simple siezures will cease to exist.

Both and the RN were so super nice and I felt they listened to me and understood what I needed and even wanted. I even went into some personal, non-medical issues because it pertained to the reason (I feel anyway) I was placed on one of my medications and they both listened intently and didn't rush me at all! I felt so cared for. Overall I spent about an hour and 15 minutes talking to him. I was at his office for 3 hours. It was a very long appt, but oh so worth it.

[CQ:)]

Hi Aicila,

Glad your drs appt went really well .

I don't think you should feel dumb about being nervous about your appt. I know I always get a nervous when I have to go see the neurologist, although now I don't get as nervous as I did in the beginning. Before my appts with the neurologist I used to think are they going to think I'm crazy?, Am I wasting their time? but I never had anything to worry about.