Im back from the neuro!

[momof3boys]

It was a very Interesting Visit. We got there, (my mother and I) and spoke with the PA first. I asked her my questions. The first question I had was...

1) the tingling I get in the beginning of a seizure, which I havnt had since March 2011, when I was taken off all seizure medications for my VEEG, could that be associated with an epileptic seizure?

Her response.... "No, it has nothing to do with seizures"....

Ok, well then why is it that when I google things, and look up simple partial seizures, it comes up with a list of symptoms, including tingling, pins and needles sensations? She had no explaination.


My next question....

2) why is it that if my dr believes what I had during the VEEG were non epileptic seizures, why havnt I had another seizure like that, since being put back on the Keppra XR? When my psych dr I saw, clearly explained to me that if the seizures I was having during the VEEG, were non epileptic seizures, the Keppra XR or any antiseizure drug, would not keep them from coming?

Her answer.... Well, what you had during the VEEG was indeed Non-epileptic seizures. But It did show activity in the background of Epileptic activity.

Me: Do you think its possible that what was seen on video was a simple partial seizure that was too deep in my brain to be picked up by the EEG, which would explain why I havnt had any more seizures like this since being put back on the Keppra XR?

Her response... "No, what you had was non-epileptic seizures. When your dr put you back on the Keppra, it was because of what he saw in the background of the EEG... the waves and spikes indicating epileptic activity. Once you were put back on the Keppra, your mind then told you that you were ok, and its all about the power of how you think. You knew you were back on the Keppra, and your mind was then trained for you not to have seizures". :roflmao: UMMM... NO. I dont believe that at all.

Then my dr comes in and we talk to him.

In March 2011, he tells my mother and I during the time I had my VEEG that because I didnt have a grand mal seizure or complex partial seizure during the VEEG, but only had some small activity seen, I would in no way have a grand mal or complex partial seizure again. He then said I could drive within 2 weeks after returning home... (which I didnt, because I knew better not to drive)

TODAY he tells us this....

Well, the reason I kept her on the Keppra was becasue of the seizure activity I saw in the background. I have the propensity to have a grand mal or complex partial seizure. Where as 15 months ago, he said I wouldnt ever have one since I didnt have either seizure during the VEEG.

The question to him also, was it is possible to not have the seizures be picked up my EEG if they are too deep within the brain?

His response, is No... if there were seizures there, the EEG would pick it up.

This dr specializes in so much, and he can tell me straight out that all seizures can and will be picked up by EEG, and that what I had during my VEEG stay was non-epileptic seizures, because they didnt register.

What I dont get is this...

when I went to the psych dr, she said it doesnt matter if the dr put me on one anti seizure medication, or three medications, no anti seizure medication is going to stop non epileptic seizures from coming. Because I was put back on the Keppra after having the VEEG, and my last known seizure like I had in my VEEG was the day after being released, which at the time I was back on the Keppra for 2 days, how is it that if those were in need non epileptic seizures, how could they just stop when the Keppra was added?

We didnt get much of a explaination. But instead, he said since Im being well controlled by the Keppra XR at 3000mgs, he wanted to leave me be and see me again a year from now.

I look at it this way....

I believe the seizures he saw me having during my VEEG was simple partial seizures too deep within my brain to be picked up on the EEG. By adding the Keppra XR, its controlled the seizures from coming and has stopped them since.

Thats the reason why Im doing so well.

But to the docs, they think its all about mind over matter. Im telling myself since Im on the Keppra, Im not allowing myself to have a non epileptic seizure.


OK................. op:

 

[AngelwithDentedHalo]

Oh boy, that's ridiculous, even my Neurologist has said sometimes seizures are so deep in the brain they can't be picked up by standard tests. My Neurologist says you can have epilepsy all your life and EEGs won't always pick it up. He also told me that sometimes you can have every test in the book and they never pick it up & you'll never know the cause. Just cause it's not being picked up by tests or it is, doesn't mean you don't have epilepsy. And certainly doesn't mean it's non epileptic seizures. My step moms mom had seizures for years but they never knew why & it was never picked up on any test.

 

[AngelwithDentedHalo]

How did you remember all that? lol I forget a lot of what is said at the doctors the minute I leave.

 

[PFunk]

His response, is No... if there were seizures there, the EEG would pick it up.

:roflmao:

My epileptologist told me the same thing Angel said.

Thats why they crack some peoples skulls open and insert electrodes directly into the brain... Especially if your thick headed like me.

 

[Chaz1]

Glad they did not mess with your meds as seems to be giving u good control and you say you are doing well ....dosage seems high...?

Hmm, hmmm can’t help say that after reading their responses to u...I mean really...
You were ready for the (these long awaited) visit nice.

 

[momof3boys]

Yeah, well it didnt suprise me that he still believes what I had during the VEEG are non epileptic seizures, even after going to the psych dr who he referred me to. I went to the psych dr for 3 months, and she even told me if they were non epileptic seizures, the Keppra he put me back on, wouldnt prevent them from coming. Each visit with her, I reported no seizures. The last visit I had with her, she said that I dont have non epileptic seizures. The reason Im not having seizures is because they are epileptic seizures and the Keppra is taking care of them. That was back in June 2011. Then comes today, where I get the PA and my Dr both saying that what he saw was in-deed Non-Epileptic seizures, and if they were really seizures, the EEG would have picked them up. I even had papers that I printed off from the Epilepsy Foundation saying that not all seizures can be picked up by at EEG. He didnt care though. They both think its all in my head.

Whatever, I truely dont care. As long as the Keppra is controlling the seizures, Im doing well. I did get upset that last year he told us I would never be able to have a grand mal or complex partial seizure again, but this year, today... he said I still can have those kind of seizures. Really dude? Why the change? LOL.

Ive been on Keppra at 3000mgs since I was 17 years old. My dr prior to the one Im seeing now had bumped me up to 4000mgs. Talk about a walking zombie with break through seizures! I switched over to Keppra XR then, and have been doing well since.

 

[AngelwithDentedHalo]

Crack peoples skulls to put in electrodes? Yikes. Maybe our skulls are the reason a lot of people go without diagnosis' and epilepsy isn't picked up by tests, the skull gets in the way. I must have a thick head too, hard enough I cracked a window as a baby but it didn't crack my skull.

 

[momof3boys]

Yes there was talk two years ago when I started seeing this dr about testing with electrodes in the skull. He wanted to start out with doing a VEEG which we did in March 2011. But since then, he's determined to tell me I have epileptic activity, just not enough to get me to have a grand mal seizure or complex partial seizure while I was hooked up for the five day stay during the VEEG. Now today he tells me I can still have a grand mal or complex partial seizure, that was his whole reason for putting me back on the Keppra. But then, why would you want to take me off the Keppra like he had planned on doing in April 2011? He got me down from 3000mgs to 2500mgs when I found out I was having a reaction to the Lamictal, which it was then he admited to me that the reason he wanted me off the Keppra and onto the Lamictal because he said my seizures were caused my anxiety and I didnt have epilepsy! But this whole time, over a year now, Ive been on Keppra XR and have had no problems with seizures!? Kind of odd....

 

[AngelwithDentedHalo]

When I first had the seizure, I was not prescribed anti-seizure meds until I saw the Neurologist & then I had to build up to the full dose. First my Neurologist said he wanted me on the meds for six months while my brain healed, then we'd talk about taking me off the meds. Six months goes by and I go see him, he says he wants to do it another six months and we'll talk about taking me off the meds. Six more months goes by and then he was saying he wants to do it another year and said he liked to keep people who've had seizures a minimum of two years. Then when I saw him in June (another six months later, now a year and a half), he is talking possibly keeping me on the meds for 5 years, possibly life. He is being very careful and taking no chances.

He said the people who do well off meds, in studies done with taking people off meds, those people usually don't lead active lives, have a desk job and don't drive, their risks are lower in the sense their stress levels are lower, they don't run the risk of getting into accidents when they go into seizure if they drive and since I drive everyday, work and stress levels are higher, I'm at a higher risk and more than likely it would be better for me to stay on meds. He said we'd do an EEG in 5 months which will be November and I see him December 3rd for followup. Depending on those results we may talk about going off meds but have the hunch he thinks I should stay on them forever.

How long have you been on Meds MomofThreeBoys? Did you go on meds after first seizure?

 

[julie wishes]

Kristin, it literally pains me to hear your story, and a couple of things come to mind. LoL okay more than a couple but I'll keep it to myself.

First of all, I'm left feeling so underwhelmed with the neurological societies ability to work together to come to agreement amongst themselves on a standardized view of seizures, how to test for them, and prognosis. How are you as the patient supposed to feel safe and properly cared for when given such conflicting information especially by the same doctor..... mind boggling 0.o

Which really brings me to the second thought which is how can you logically stay with this guy when he doesn't give you that sense of proper consistent care?

I can only imagine the conflicts between doctors at their yearly conventions... they all follow their own belief systems rather than a common thought process. Its awfully irritating to hear of such bad medical care. I know your basically happy because he didn't take away the thing that's helping you, but eventually the inconsistencies will eat away at you until you realize you need a doctor that cares for you properly.... then the real issues start because I'm not convinced there are any out there to choose from.

I'm glad in the end YOU are doing well and you're smart enough to articulate your experience so well.

 

[KarenB]

Well...good that at least the Keppra is working.

Now...I want to say this about apparent seizure activity that doesn't register on the EEG, and also the mind over matter thing.

We're dealing with my son, whose cognitive is such that he doesn't know what meds he's getting or what they're for. So...for him...there's no such thing as mind over matter.

He has had...spells...or behaviors...or whatever you want to call them...that do NOT show up as epileptic activity on the EEG. For instance, before he has a tonic or tonic/clonic seizure, he will scream loudly 3 or 4 times ... but the EEG only shows the seizure beginning when the screaming stops. He has also had episodes of shaking or trembling -- esp. when he first wakes up (like if you have the flu or something and you've got the chills -- that kind of shivering activity) that do not show up on the EEG as seizure activity. But when he goes for long periods without seizures (months) he doesn't have the shivers. When he's having lots of siezures, he has lots of shivers.

So...I'm not sure about deep in the mind or whatever, but there apparently are spells or episodes that may not register as seizure activity on an EEG, but are related somehow to seizures, and when the seizures are controlled, the non-seizure activities are likewise controlled. At least, that's been our experience.

 

[momof3boys]

I wish we lived in a different state, or had other options for different neuros in our area. This neuro Im seeing now, was the partner of the other neuro I was seeing prior. My prior neuro didnt even want to run tests, to see what was going on. I was having tons of headaches all the time, and he thought by raising my Keppra to 4000mgs it would take care of it. But it actually did the opposite and made it worse. So thats when I went back to the office, and my prior dr was gone, so they put me with this neuro Im seeing now. I have to thank this dr for at least allowing me to get my first VEEG last year. But other than that, I havnt been happy with him. Telling me that all seizures will come up on at EEG, and that its not possible to have seizures deep within the brain? Come on! Why the heck is there a test that allows drs to insert the electro's in the skull then, if all seizures are suppose to come up on an EEG when placed on the top of the skull? He firmly believes that I have both, non epileptic seizures, and the epileptic activity he saw on the EEG, he said he left me on the Keppra for. Last year he says I cant have a grand mal or complex partial seizure ever again becuase during my VEEG I didnt have either. Yesterday, he tells me that I most certainly can still have any type of seizure!?

If there was another specialist near by that was covered by our insurance, I would be switching over in a heartbeat!

 

[julie wishes]

I hear that. I have no insurance which is hard. I was thinking today.... "how far would I drive for a real good doctor?" I decided about two hours. I think it would be worth it.

 

[KarenB]

We drove 1 1/2 hours each way to a children's hospital affilitated with Johns Hopkins. They had a Ronald McDonald house, so if we had an early morning procedure, could just stay there the night before.

When Jon was younger, and we were living in Asia, we'd hop on a flight to a different country.

The issue though with insurance is sometimes they want you to go to a doctor in your immediate area.

 

[Wobblez]

VENT AHEAD....

What a load of bollocks!! I'm sorry you have to deal with this ridiculous treatment MO3B but I agree with you, the proof is in the pudding. If you are feeling better and the seizures have reduced/disappeared due to the Keppra XR then that says its epilepsy and the medication is working for you! HE SAW IT ON THE EEG!!! How hard can it be for these doctors to work it out?

I think as we have scary moments where we lose control of ourselves and OUR BRAINS, it's fair we could possibly over-analyse normal, minor bodily sensations and maybe feel something is epilepsy related when it could be a normal sensation that "normal" people experience. However, given I've had epilepsy since birth, I don't know what "normal" feels like, so of course I'm going to pay attention when I feel dizzy, regardless of why. It's called looking after yourself! And like KarenB mentioned, it may not technically be seizure activity, but it can still be a warning of one.

I don't understand what your doctor has to gain from separating both events (if there are indeed two separate seizure-like events). It looks like a duck and quacks like a duck, and he can see the duck wandering around in your brain! So what if there's a goose in there too, there's still a damn duck called epilepsy!! Good on you for keeping a good attitude and not letting it get you down. The main thing is you a feeling better x

 

[KarenB]

Well said, Wobblez!!

 

[Cint]

Kristin, it literally pains me to hear your story,

Which really brings me to the second thought which is how can you logically stay with this guy when he doesn't give you that sense of proper consistent care?

:agree: It doesn't make a bit of sense to me. Sometimes seizures don't show up with just plain EEGs and VEEGs, and like P-Funk said, sometimes our skulls have to be cracked open and electrodes placed inside to get a full spectrum of one's brain activity. I was in the hospital one week with those inside my head before I had enough seizures that they could evaluate. That is what I had to go thru to make sure they located where my seizures originated. The pain that some of us have to go thru before the docs (?) listen to us!?

 

[momof3boys]

I agree with you all. Ive had epilepsy my whole life. It wasnt til I was 18 months old that I had my first grand mal seizure that scared the crap out of my mom who then called an ambulance, and had me rushed to the hospital. Ive been on seizure medications all my life. I kept trying to point out to him that if he was right, and they were non-epileptic seizures, the seizures he saw during my VEEG, would still be occuring even after putting me back on the Keppra. Why did they occur when he "cold turkey'd" me off 2 anti seizure medications, then once I was put back on the Keppra, they all stopped.? Well, one thing he should also take into consideration is that Ive never once in my life been cold turkey'd before. Ive been weaned slowly off medications, but Ive never quit a medication(s) all at once. So he should have taken that into consideration as well that when a person is use to always being on seizure medications, and they are abruptly stopped, our body is going to have a reaction to that. But, he of course didnt think nothing of that. Even the psych dr who he referred me to, said that if the Keppra stopped the seizures, then they are not non epileptic seizures. When this was brought up to him the other day, his comment was... "Yeah. well thats what she said, thats done and over with now". So Im assuming she sent her notes over to his office with a report of her decision that they were not non epileptic seizures.

But what makes me angry is that last year he said there was no way I could ever have a grand mal or a complex partial seizure again. I assumed he said this because during my stay for the VEEG I never had a grand mal or complex partial seizure. During this appointment, he changed it and said its very well possible that I can have any kind of seizure. There was epileptic activity on the EEG, that was his reason for putting me back on the Keppra.

But I find it odd that when this VEEG was taking place, it was all talk about how Im having non epileptic seizures, and how I needed to go see this psych dr. Then during all of this, it was brought up that I needed to get off of Keppra and be on Lamictal. Which I later found out by a phone call, that he said, "Kristin, you dont have epilepsy! You have anxiety! Which is the result of your seizures!"

So he was basicly trying to cover it up when he wanted me to try the Lamictal, trying to prove to me that if the Lamictal worked, then it would be all related to "anxiety issues". Well, that didnt work out, now did it!? LOL

Those times really upset me. For a dr to hide this information from the patient. Just doesnt sit well with me. If we had more Drs that deal with Epilepsy, Id be looking elsewhere.

 

[popcorn]

I have to drive three hours to get to a crappy 'neurologist'. I live in the Rocky Mountains and had to drive to Pueblo to see one.

I went this week and saw a nurse practitioner. He told me he was a cardiac nurse practitioner until April when he switched over to neurology. The NP that was there in neuro before him left to work in kidneys. YIKES!! Talk about concern over competence.

I am going to let this group do my testing, but move onto Denver which is four hours away for treatment.

Anyway, good for you OP for not falling for the confusion the doctor is laying out for you. I would probably be a mess hearing all that crap.

 

[Cint]

Popocorn,

I live in the Denver area and go to University of CO. Health Sciences Center hospital with neurology clinic and several epileptologists. I wish you and Kristin could both see a more qualified dr.