So now what?!?

[sjconner]

I have been seeing a neuro for over a year. I have been on about 5 different meds. Either I couldn't tolerate them or they did not help. I went to Denver and saw a epileptologist. I had a consultation appointment - no testing. She said that she didn't think I had epilepsy. She didn't really have any suggestions for alternative causes. She wants me to taper off my meds and see what happens. I am using the taper schedule she recommended and should be done at the end of May.

My neuro suggested that I see a clinical psychologist ... "to cover all our bases". I have been going to see her. Our kids went to preschool together. We know each other but not really well ... until now. She requested my records from the neuro and reviewed them. Today, she asked me if I wanted to continue to meet with her. She said that she didn't think that psychotherapy or cognitive behavior therapy or any of the other psych related stuff was going to effect/improve/change/get rid of what I have been experiencing. I am just a bit high-strung (control freak, perfectionist, always on the run, doing too much, etc). Not enough to create any problems - normal stuff. I will continue to see her; if nothing else, she is someone I can talk to.

Monday I woke up and didn't know what day it was (total blank). I stumbled around for about an hour. It quickly became a horrible day. I could hardly talk ... everything I said was wrong or didn't make much sense. I was making lots of mistakes that I normally don't make. Even my students were looking at me funny and not much phases them. I am thankful that the supervising teacher didn't get to witness my brilliant oratory. At the end of the day I was tired and starting to get a headache. I went home, did my homework and went to bed. I couldn't sleep. The next day, I was tired ... probably due to three hours of sleep. I had a headache that turned into a migraine and I felt like was going to throw up. I should of stayed home both days! Today my students asked me if I was ok ... are you having a better day?

I am scheduled to see my neuro at the end of June.

 

[N Sperlo]

Monday I woke up and didn't know what day it was (total blank). I stumbled around for about an hour. It quickly became a horrible day. I could hardly talk ... everything I said was wrong or didn't make much sense. I was making lots of mistakes that I normally don't make.

Sorry to hear things have been so rough. Have you woken up feeling this way before? I sure as hell know I have. Not cool at all.

 

[BlueCat]

This last week I've had a horrible time keeping track of the days. I know how frustrating this stuff is, and am sorry to hear you're having to go through this. Best of luck and sorry you have to wait til June to see your neuro

 

[notime]

This is difficult, if an epileptologist doesn't think you have it then I don't know really what to say... Have you considered seeing another epileptologist? Look online for one that has a good reputation, years of experience, and perhaps studied at a top university? That's your choice, but it's just a recommendation.

I don't like saying personal information like this. But, my father is dating a woman who has a cyst in her neck or spine (not sure). She went to one neurosurgeon who said she needed work on 4 discs, then she found another one who taught students and this one said that it would only be one disc he has years of experience with good education. This is just an example of perhaps getting a second opinion.

Your choice, but with memory issues I went to my primary care physician in January because I had the flu and for like a couple of minutes I couldn't remember the date or new year! My father was like ... I couldn't explain it to him, but now my memory seems to be better.

 

[kaelieh]

I would go see another psychologist, she doesn't sound to helpful. Honestly, I've had better luck with licensed clinical social workers than I have had psychologists. I would want to see another epileptologist as well if I were you. I think you could benefit from a video EEG. The complex visual hallucinations don't fit migraine.

 

[Cint]

I'm really disappointed in your visit to the epileptologist here in Denver. So sorry they had you fly out here, jsut to tell you that she doesn't think you have E without offering any other advice and no tests. IMO, that wasn't much of a consultation. A true epileptologist should have offered more advice and given you some options is she didn't think you have epilepsy.

Here is a list of epilepsy centers on the western side of the U.S.:
http://www.naeclocator.org/locator/resultsbyzip.asp

I hear Swedish Epilepsy Center in Washington is good.

And as far as a psychologist vs a social worker, I would rather see a neuropsychologist. I will NEVER see a social worker again. What a waste of my time!

 

[sjconner]

I really like the clinical psychologist. She is in town and also sees some of my students. So she knows exactly what my work life is like. She has been very straightforward and honest. She thinks that therapy would be good so I can learn better strategies for balancing everything. She still wants to and is willing to see me; she was just letting me know that I shouldn't expect therapy to have any effect on my neurological symptoms. She has treated people with PNES. She says nothing traumatic, my stress is not excessive, fairly normal, etc. I do not think she is passing the buck or trying to dump me. I know there are practitioners in both fields that dump patients because it is the domain of one or the other - not both.

This is driving me crazy. Two clean EEGs (both Dec 2012). At some point are you supposed to sleep during the EEG ... I didn't sleep during either one. Two clean MRI's (2012 & 2013) and one clean MRA (2013). Before the trip to Denver, I asked my neurologist "What do you think?" He asked "About what?" I replied "Anything and everything." He told me that he thought that some of it was stress and some of it was epileptic. I wish there was some sort of blood test.

 

[kaelieh]

Oh.. That kinda clears that up. I was under a different impression from what I read in your first post. Clean EEGs and MRis can't rule out epilepsy as frustrating as it is. I think a video EEG in the epilepsy monitoring unit with a different epileptologist might give you more answers. If they can catch on episode on video and EEG they should be able to tell you whether they are epileptic or NES.