Feeling Optimistic!

[jemsister]

I saw the epileptologist today (Dr. Sepkuty). My original MRI records are lost (for some reason, those never did get transferred from doc to doc over the years--none of them have it), so he wants to get a new MRI and an inpatient VEEG done. The MRI is on the 26th, and the VEEG starts on February 18. I'm surprised at how fast they are getting me in! They actually wanted me in on February 4th, but I had to turn that down, being that it's too soon after my MIL's heart surgery for us to be unavailable for a week. I was expecting a multi-month wait, so I am very pleased that I can get in and get it over with now.

They're going to take me off my meds for the test, and because of all the mess with my medication right now, he said that we'll use the opportunity to reboot my treatment. He wasn't happy with the fact that my new doctor still doesn't have me off of Trileptal, and that he added a new med on top of the three I'm taking. I told him I was uncomfortable to taking so many drugs, and he said, "I don't think you need to be on so many drugs." Yes!

I've decided not to go back to the new neurologist (Dr. Morris). I'm going to call my old neuro back (Dr. Mauk) and give her the rundown of everything that's happened in the last several weeks, and then make my next appointment with her instead.

 

[Nakamova]

So, so, great. I love that your neurologist will be moving things along, and aims for as few medications as possible. Congrats! A terrific start to the year!

 

[jyearta]

Great that you found a Neru. that sounds like they truly want to help you.

Keep us posted.

 

[cazzy]

run it pass me what is optomisic person apart from someone you want to slap

 

[CQ:)]

Josie -
That's great news that your epitiologist appointment went well & they are not mucking around. Are they going to be altering your meds while you are in hospital for your Video EEG? If so that will be the perfect time to reassess your meds.

Before I had my Video EEG the Neurologist in my home town had me on 3 meds (Tegretol, Keppra & Neurontin) Which were all at high dosages. When I was in the hospital for my Video EEG the epitiologist & neurologist altered my meds, they took me of the Neurontin (at my request) & lowered my Keppra. I still had my partial seizures but at less with that lower med change I didn't feel like a walking zombie.

Has there been anymore talk about the possibility of your having surgery?

Good luck with the MRI/VEEG.

 

[CQ:)]

run it pass me what is optomisic person apart from someone you want to slap

Cazzy,
I'm pretty sure optimistic means that things are starting to look good.

Definition of optimistic
adjective
hopeful and confident about the future

http://oxforddictionaries.com/definition/english/optimistic?q=optimistic

 

[CathyAnn31]

That's fantastic Josie.

 

[jemsister]

Thanks, guys!

CQ, yep, they are going to stop meds while I'm in, and then when I leave I will have a different regimin--most notably, I will no longer be taking Trileptal, which is so exciting! Finally, after 6 months of trying to kick this pill, it will be GONE! Not sure what he will keep me on. I think I would prefer to take Dilantin, simply because at least with D you know what you get. Vimpat is so new, it makes me nervous to take it. Not sure if the Lamictal will stay. I'm not sure it's really doing much for me.

 

[jemsister]

CQ, I forgot you asked about surgery. He didn't mention anything this time, so I don't know. I hope the EEG and MRI give him the info he needs to determine candidacy.

 

[Chaz1]

"I don't think you need to be on so many drugs."

hallelujah - may you have struck gold in finding this epileptologist and sounds like he going to do full overhaul and with so many meds, rightly so!! woohoo.....

this girl is just so glad to hear this for u...

 

[jemsister]

I am really excited about the new guy--he doesn't want to waste any time or go at a snail's pace. He's like, need to get off Trileptal? Then let's get you off Trileptal. Forget about adding more drugs. He's the medical director at the epilepsy center, so he'd better have all his ducks in a row!

Now I'm just hoping I have the seizure activity that I need to have while I'm there. I still have breakthroughs even on meds, but it would be just like me to be perfectly healthy the whole time I'm in there. He says he thinks that in 5 days of recording, some kind of abnormality will probably show up even if I don't have a seizure. I hope he's right. He did say it's possible to have a normal EEG and have epilepsy (we all know that), but he says I'm unlikely to get normal results on a 5 day recording. What are your thoughts on that?

 

[Chaz1]

"He did say it's possible to have a normal EEG and have epilepsy" liking this dude…

You know, my thought is, give it a go and see where it leads u, u cannot control the seizure activity and he seems to know that.......

AND (these caps are sincere)

too many dif meds, proven to rarely work - one on top of the other, then one more on top of the others (that’s 3) then one more on top again (=4 the OTHER doc wanted) hell NO....is my thought....

Im excited for you....sounds like u may have the expert in your corner, bout time, at very least, lets see what he has to offer....hope thats for darn sure....

 

[jemsister]

Chaz, couldn't agree more! Originally, although I didn't want to add the fourth, the neuro assured me that I would be getting off Dilantin and Trileptal. But this is ridiculous. I should at least have been done with Trileptal by the new year. I don't have time for his snail's pace. And having me in every two weeks? I honestly think he might be one of those doctors who is trying to get as much cash out of me as he can.

 

[Chaz1]

Guess you can or have said au revoir to – Trileptal!! Hows it going there?

I am sure u were not looking forward to biweekly visits (wow), seems doc was prepared to go off the planet when it came to writing out med prescriptions, a cocktail that as u said made u feel like zombie.. All that med and still breakthroughs! seriously though this really scares me..

so, so, so glad u are in hands of someone who wants to taper down and not up - until he sees or feels more for what’s going on....

We will be right here with you, following your journey, to what we pray is seizure freedom...