I go see my neuro on Monday, so I need opinions between now and then so hurry Okay!!!

The last two times I have seen him, he has wanted me to go in for EEG monitoring (a three day to two week stay depending on what happens). :rolleyes: Anyways I know this is no big deal, but I refuse! I have done three stays in the hospital (two were week stays and one was a three day stay) none showed anything. I have had regular EEGs done, nothing. So what will this help?? The only difference is, I have never done one with him. They have always been with other doctors, so.... do I give in? I think its silly to keep doing the same tests over and over again. Yes I know, maybe we'll get lucky this time and catch a seizure. I have never had one in the hospital, I don't know if its because I lay there and do nothing but think about having one so I can get out of there or what, but they never come. Is that uncommon, not having one in there? I really don't want to do it again, but my husband is pushing, my mom, the doctor.... I feel like if I say no again they all will think I don't want to get better... I just don't want that disappointment of hoping THIS TIME :eek: and then NOTHING :nono: Am I wrong? Am I holding my progress back or will it go fine either way?

He has me on Topamax, and it is the first med that has made a dent in my seizures. I'm back up to twelve days inbetween again (holidays thru me out of wack!!) and I'm only on 75mg and 400mg of Magnesium Oxide (to help with the headaches that topamax GAVE me).

Thanks in advance guys (even if I don't like what you have to say.. I need to hear it!!) :D

Hope you all are having a good night!
Lisa

Hi Lisa
if this is a new dr. i would definatly go in and do the test. im not the one in my famliy with the epilepsy, my son is but if he is a deffierent dr. thenm he may very well see something different. i have read alot of posts on here where people have tried dr. after dr. until they find one that will listen(dont know if this is why you have a new one or not)and he ends up finding and taking care of something that the other ones either wouldnt listen to or hear about. i guess its like the dr. is going in with fresh eyes. kind of like if you lose something and you look and look and look. but once you stop looking for a little while you end up finding it. your test may not show anything but he may have some different answers than the other ones did. i know it seems like a waste of time but i have learned with my son that this epilepsy thing is no where on the line of being predictable. i hope i helped you in some way and everything turns up. like i said i dont know what your backround is but i hope i helped a little bit

The reason I am going to him is because he listens to me! He is the best doctor I have had!! ;) Its just, hard to find someone to watch the kids, get them on and off the bus, the hospital is a two hour drive away (what other excuses can I find... :p ) I want him to up my dose more than 25mg this time and maybe then I will consider if I don't get a better spacing of my seizures!! :rolleyes: Like I said I could come up with a thousand excuses, but the main is the disappointment. I just don't know... :confused:

Thanks!!
Lisa

well thats understandable. i didnt realize you had the kids. did he say why he wants you to have to tests for him. is it because he just needs it for his records. im wondering if he has your other test results. unless he sees something in them that he is curious about, then why would he have another one done. thats the only reason i can see that he would want one. who knows. i hope you figure it out. keep your head up.

Is it possible for your new doctor to read your previous studies himself (if he hasn't already). I have heard of people getting different results depending on who reads the EEG. Just a thought. How frustrating this must be for you!

I have copies of most of all my test except those, but I filled out the forms for him to get copies, so he should have. But all my tests have showed nothing! No spikes or anything, which I shouldn't complain about :rolleyes: , but be nice if something would show!

Okay I'll be a little more honest too, I don't trust doctors!! When all this began they tried to say it was stress and tried to put me in a pysche unit. When I resisted they told me they would put me in a locked unit. My husband got me out of there quickly, but I'm scared now :eek: It seems like every test that comes back negative doctors start saying stress and don't want to help. I know for a fact its not ALL stress. Yes stress is a trigger, but not the reason! I have finally found a doctor who believes me, who listens, who really cares... but he's pushing me and I'm scared! I'm not scared he'll put me away or anything like that, but I'm afraid he'll start thinking its in my head like the rest! Its NOT! I've been keeping a log and taking my medicine on time, things are improving some. Am I making any sense? My husband can't understand this! I had one doc see me one time, we did an ambulatory eeg for three days (nothing unusual happened), went back to see him. And because nothing happened he said he figured I was suffering from Post Traumatic Stress Disorder. He never even talked with me, how he could come up with that I have no clue!! He never asked me anything about my life, how could he say that?? My life was not stressful when this started happening, now thats all it is. Thats why I started keeping that log, so I can show that!! So am I being paranoid? Should I just bite the bit and do it and get it over with??

Sorry for rambling :yawn: , felt good to finely confess all that!
Lisa

As a veteran of 3 long VEEGs with my son, I would ask him point blank what he expects to see that your previous attempts failed to show! I know that each doc tends to want to run his own tests, but you pay(or the insurance) a hefty price for these not to mention the child care issues and frustration. I would tell him very clearly that you want help, but are really reluctant to repeat a test that has never helped in treatment....I do not think you are being difficult, I think you are being practicle...

(((((((((hugs))))))))

Lisa I might suggest depakote (3 500mg. daily) I get very good results on that med. Good Luck~! Mark

Hi Lisa,

First, thanks for your reply to my post "novel" and it INDEED was Tatoo! I knew if I read the name it would jog my memory! I told my husband the name was something different. Thanks for looking through the archives! She hasn't been on in awhile ha?
I am very grateful for those posts...you have no idea...

Secondly, our daughter had the VEEG done in August. It was 6 days of waiting...we started her off of her meds the day before she went in. There were tons of "auras" (Simple Partial) but no CP seizures. So, she went on to sleep deprivation (3 hours per night) and she had to ride the exercise bike for 45 minutes, 3 times each day. The first 45 min. ride upon immediately awaking. Finally, we had a few seizures. However, they weren't her "normal" complex partial. Not as long or as strong. It was very frustrating. They did feel they got what they needed. Katie has also had a number of eegs done in the past. Some showed activity, others did not. The electrodes have to pick up the info through hair, scalp, bone, and brain matter. Also, if seizures are infrequent, it is possible the eeg will be as well.

I would agree with the other posts that you should find out what he hopes to find that the other doc's didn't. I would also recommend an MRI and a SPECT scan. The SPECT measures glucose uptake and can help pinpoint "slower" parts of the brain which could lead to where seizures are focussing from. (in our daughter's case) We also saw a change in our daughter's MRI within just one year! Every year MRI's are getting sharper with imaging. Just like digital cameras.

Good luck in your decision making...we swore we wouldn't stop until we exhausted all of our options. You have children that depend on you, that would be motivation enough for me...to be the healthiest and happiest Mom possible...

Thank you again for finding the person for me and wishing us luck!

tkdmom96
Mom of the most courageous young lady I know

Hey Lisa:

My name is Grant, and I've been to a neurologist a lot - first I was there for diagnosis, then every drug change :confused: I've been on topomax, lamictal, frisium, carbamazopine, valproic acid, keppra, and clobozam. Glad to see my neurologist. Guess what?? None worked - Now, after battling this stupid epilepsy, I finally am gonna have brain surgery. DUH!!! My Dr. is pretty well informed (guess he better be huh?) about the whole procedure, and I have a lot of faith in him. Hang in there ok? One way or another you're Dr. will find a solution for ya. - ps. you can e-mail me anytime at gdm1969@mts.net. Happy to talk to ya. TC ok? ps. Stress is a HUGE factor in you're recovery - so reduce it! GrantM

Lisa ~ *~

You difficult? NEVER!! Caring, giving, kind... YES!

All the testing Jenny's had done has came back normal as well. If it weren't for having baby Jake, she too may have had to deal with all of the issues you are going through. And God knows how long it would have taken to make the correct diagnoses.

(((HUGS)))

If we were close I would keep the kiddos for ya!?

As always - love and light

Lisa and kids

As I have said it in all of my other posts, I really don't know how I would get thru this without ALL of you! Its so nice to know you guys understand and I don't have to feel bad for feeling like I do. And it seems there is always someone here in cyberspace that has been thru the same thing I'm going.

I'm hanging in here just like all of you! The good days and the bad days..... :p

Thanks guys :wave:
Lisa