Back to no meds :(

[thornton8000]

hello again,

ABout a week ago the neuro, took me off all meds and i was against this since my seizures were getting better again, I've been going through periods of doing ok and then having a few in a row at night and just a few SPS, during the day.
Well now that im off the meds ive been having migraines everyday that never go away, and had 2 really bad seizures in this week where i wake up and have had to change sheets and clothes.
His reasoning is well you cant have anything wrong with you since nothing shows up on the EEG, AEEG, VEEG, he goes on to say i pyschogenic non epileptic events, and everything else that you put into you journal is all things that dont make sense since all test are clear and normal.

I was doing good on the keppra kept migraines down, seizures down, and now im back to square one.
Thank goodness I have a level 4 epilepsy appt next month to hopefully get things going back in the right direction, to get my seizures down again, and hopefully bring the migraines back into check.

Have a great day everyone,

mike

 

[Autumn Breeze]

:whip1: Jerk.

I'm so sorry, that has to be incredibly frustrating and painful. Can you see a different doc?

 

[Cint]

Mike,

Sorry to hear your having a rough time, but I hope that once you get into the level 4 epilepsy center, the dr. there will find the answer and treatment just for you. The other neuros outside of epilepsy centers don't know much about E. Hang in there!

 

[KarenB]

Grrr...those idiot, ill-informed doctors that assume that a "clear" EEG means you don't have epilepsy. Our son has had epilepsy for 8 of his 9 years, and has had at least 12 EEGs (including overnight and 48 hours) and only 2 of those 12 showed seizure activity. The first one that showed seizure activity on the EEG is when he was in ICU having 48 grand mal seizures in 2 days. He'd had one just a first months prior that was absolutely perfect, and had another one about 3 months later that was perfect. Just goes to show that an EEG is not a clear diagnostic tool

So sorry that you're now having to suffer because of your doctor's ignorance.

 

[KarenB]

The seizures you experienced this past week might be "weaning" seizures (our Jon just weaned off Keppra, and had seizures every time we reduced the dose, but now that he's been off it completely for about 2 weeks, he's been doing well).

However, if, in your case, the Keppra was helping the seizures, then it's just wrong to take you off the meds. If I were you, I'd call the doctor's office every time you have a seizure. He at least needs to know the consequences of his ill-advised action

 

[thornton8000]

thanks all, i'll be seeing a new one soon, and agree that once i see the level 4 hope more answers will be coming, and ive been ogg ti long enought that i shouldnt have had weaning seizures, and it was worng and ive had only clear eegs and mris so hopefully next month i get some answers

mike

 

[Nakamova]

So sorry Mike -- you've seen more than your share of neuro-idiots. I hope the seizures don't get too bad while you're waiting for next month's appointment. Don't forget to write everything down in your seizure diary, so they can see that the Keppra helped.

 

[momof3boys]

It makes me sick to hear neuros out there treat their patients like this. Im so sorry Mike that your neuro did this to you. I hope the level 4 appointment can come sooner so you can get the relief and answers you need.

 

[Cint]

It makes me sick to hear neuros out there treat their patients like this. I

:agree: Next week I go in to see my neurologist and neurosurgeon for a visitation for my VNS replacement. It is a level 4 Epilepsy unit at the University. Anyway, I am going to mention this to both of them and ask why do so many neuro's treat patients as such.

 

[thornton8000]

Thank you all
this is why i love coming here (havent said much lately but love it here )
everyone understands and understands that many neuro's are not great.
I'll be keeping everyone updated as i find out more.

Thanks all

mike