how can i be honest with the Neurologist.

[vapour]

Hi there.

I have tried 3 different seizure medications since being diagnosed. RIght now Im on 2 (tegretol and lamictal) ..lamictal being also used for Bipolar disorder.

Tegretol has been the best medicine so far. The seizure meds have helped dont get me wrong..before I was on them I was in simple partial status epilepticus alot with big muscle jerks.

Anyway, these days I can guarentee probably 5 days out of 6 (if im lucky) I still have symptoms like tingling, little twitching, nausea...and having to avoid things that trigger me.

I want my seizures fully controlled. I spoke with my Psychiatrist yesterday and he said that I really need to tell my Neurologist this because its very important. I explained to him if I complained about every little twitch...Id be whining a whole lot.

Im also worried since Ive been on 3 medicines and been told its refractory they might want to try something more invasive...

I really want this under-control.. but Ive sort of had the attitude of "I dont care anymore because Im so tired of all this" and whenever I see my Neurologist I just usually say things are fine, or cover things up.

How should I go about really explaining what happens on a daily basis ? and is it REALLY that important that she needs to know about this ?

 

[Endless]

Vapour,

Do you keep a seizure diary, with the dates and types of seizures, as well as possible triggers, dosages of your meds, side effects, etc? That communicates exactly what is happening. And just TELL your doc you want things under control. Your doctor works for you, and is in the business of helping you meet your goals.

As for him suggesting something you don't want to do, it's just a suggestion. He can't make you do anything. And if he labels it refractory, what does that matter? Again, they can't make you do anything. It is all your decision.

I've found that if you are not honest with your doctor, he or she can't help you. It's really important.

 

[epileric]

Hey Vapour, I know I hate telling people about my seizures because I don't want to feel like I'm using them as an excuse, However, a neurologists function is to listen to & process everything related to your seizures. That means you're not whining, you're giving the neurologist useful info that s/he needs to determine an appropriate treatment or action. If s/he perceives it as whining then it's time to find a new neurologist. I have the opinion that it would be more constructive to tell them something they may not need to know than not tell them something that might make a significant difference in how my seizures are treated.

As far as being put on something more invasive- Remember that you have the final say whether you like a medication or not. It is YOUR choice but you won't know if something is more invasive or more helpful unless you try it.

Hope this helps.