Updates/psychogenic/EEGs... etc.

[RunningGirl85]

So, if any of you remember, I was questioning the referral I got not too long ago to see a psychiatrist. Well, it really was a neurologist, more specifically, an epileptologist. My neurologist here is still not sure if my seizures are actually epilepsy.... I think this is only because when I did my ambulatory EEG and I said I was having dizzy spells (because I had unknowingly missed four days of my antidepressants), nothing showed up. Anyway, the epileptologist says everything I've described sounds like epilepsy, but they want to do more advanced testing... I cannot remember the name, but they stick stuff up my nose to look at my brain??? Kinda weird.

Anyway, I'm annoyed because I've had two abnormal EEGs, the military diagnosed me already, and I've had two T/C seizures. I also have had a history of auras, that got worse and worse, despite me ignoring them, until I had that last T/C. I really don't understand how they could question that??? Granted, I've been seen by four different people at four different times, and the first time they just kinda blew me off. I mean... I accidently missed my pills one evening, and I hadn't felt that bad in a LONG time... like, my auras were really intense, and I had several of them. My worst ones usually include the almost-hallucination/dreaming type experience, with nausea, etc. Yeah, had several of those in a short period of time that stopped once I took my medication. Obviously, there's something else going on there. Soooo... yeah, I'm not really sure how this is a question (TWO abnormal EEGs, and a former diagnosis, really???) Anyway, I've already made the decision that I want to leave the military becuase it's best for everyone involved; however, if suddenly they decide this isn't epilepsy, not really sure how that's going to work. I mean, the first seizure I had they blew it off because it was the first one, I got into the military, and a couple years later it got worse because I wasn't put on any medication...

So a little frustrated, and annoyed. Now my Keppra is up to 3000 mgs a day, and my Lamictal is about to go up too... I'm still having auras... I've learned that some of them probably are actually NOT epilepsy-related. But I'm learning the difference... Maybe they should just take me off of all my pills and see what happens? If it's really just a mental thing, maybe I'll feel better because I won't have all of this stuff messing with my brain. (That was kinda meant sarcastically).

Oh well - I will keep everyone updated!

 

[Nakamova]

Can you chat with the epileptologist about why there's still any doubt about an epilepsy diagnosis? It seems like they're making you jump through all sorts of unnecessary hoops. Your symptoms should be enough to make the call.

The advanced testing you mentioned might be an EEG using nasopharyngeal electrodes (sensors inserted through the nose) for recording deep brain activity. If that's the case, I'm not sure why they aren't using regular electrodes placed just under the skin in front of and slightly above the ears. (I've had that done, there's no pain or irritation.) Those can often provide the same info, with a whole lot less discomfort compared to having a wire up your nose. Probably worth discussing with the epileptologist as well, so you'll be prepared for whatever kind of test it is.

 

[Wobblez]

Wow Runninggirl, what a headache for you! I don't quite understand this either. If a solid diagnosis was required before pills were prescribed, then you could understand a doctor's hesitation, but half the time people are given tablets and the diagnosis is still a work in progress?? I say this while laying in a bed having a 2 week EEG as we speak. Im still not quite sure why i need to be here but bring on the answers I say! I hope you get some answers, keep us posted.

 

[RunningGirl85]

Well, my PCM and I went through my entire medical history since this all happened, and we DID find a diagnosis of epilepsy in there. Actually, I've had TWO neurologists diagnose it, and even the current one had previously diagnosed it... up until my ambulatory EEG where I pressed that stupid button and said I felt off for awhile, and nothing showed up... So now I'm stuck in this frenzy of tests to determine what I've already been diagnosed with... *sigh*...

My next video EEG is scheduled for June 10th. This time I'll be doing what Nakamova was talking about, and I will be actually seeing an epileptologist. The problem is - it's at the exact time of the month as the last two. This is an issue because my activity is usually the highest the week BEFORE that (hooray hormones!) I guess if they take me off of my medication with the more in-depth tests that maybe it will actually show something. But yes... I'm not sure what the need for all of this is. Even my neurologist called me to tell me to up my doses because my levels were low, and he thinks this may be why I'm having spells still. OBVIOUSLY if the medication is low and I'm having spells, it would make sense that the medication is doing something... especially if I feel worse off if I miss a dose.

I guess we shall see... I was getting annoyed and made a comment that just take me off of my medication and see what happens, because I'd rather not be on this stuff anyways. I already know what would happen, but apparently it's now a question. Gr.

 

[Nakamova]

Any chance you can ask them to move your video EEG up a week? Worth a try...

 

[RunningGirl85]

So I saw my neurologist today, and d guess there was some misunderstanding. He said there is no doubt I have epilepsy andseemed frustrated with the people here in change of makingdecisions. He said he has no doubt d have epilepsy. He said the tests are to determine where the seizures are coming from so we can fix them- not to diagnose if I have epilepsy or not. Anyway, he wants the epileptologist to make some of the decisions pertaining to my driving privileges. Honestly I never thought d would be having these issues. I went two years after my first T/c seizure without any issues on no medication, then suddenly everything was different. I know you all can relate. at least I know this means I should not have problems with the- doctors here deciding if I am eligible for a medical discharge.

Sent from my GT-N5110 using Tapatalk 2

 

[Nakamova]

You'd think that with something like an epilepsy diagnosis, everyone would be on the same page. I hope your neuro can cut through the confusion and get things straightened out.

 

[RunningGirl85]

Same here If it was just the neurologist making these decisions it wouldn't be a problem... The problem is that the military makes its decisions of retention based on what the neurologist says, and we don't have any military neurologists here... but the doctors who make the decisions aren't neurologists... *sigh*... they seem to have no idea what a partial seizure is. Which is ridiculous because a couple of days before the T/C that got me diagnosed, my friend who is in medical school (used to be a roommate) asked me about what I experience (she knew that I used to have auras) and was able to figure out what was going on... all based on one block of neurology instruction... bleh.