Confused Diagnosis

[FFShawn]

Hello, I'm Shawn and I am what seems to be somewhat difficult to diagnose. In August 2010, I suffered a TBI in an Army training accident, after that I had terrible headaches, severe vertigo and multiple syncopal episodes that developed in to several tonic-clonics since. Unfortunately or fortunately, I have had a normal "EEG" on each test I have done. Since my injury, I have had the following tests, which all have been normal : 3-regular EEG's, 1 Tilt Table/EEG, and now two separate six day V-EEG's at two different hospitals. Only during the Tilt/EEG have I had any sort of reaction, where I passed out and had some unexplainable shaking afterwards, but a normal EEG. Today, I went in for a follow-up of my last V-EEG and my neuro says he thinks it is both PNES for my absence type episodes and Partial Epilepsy w/impaired conscious w/o intract epilepsy, but he needs to do further research with some other local neuroscience professionals for a sure diagnosis. After doing my own research I have seen that there are people who's EEG's come out normal and in fact have epilepsy but my neuro doesn' think that is possible. He has been a great neuro and worked with me well and even gets me anything that I need for turning into the Army within a day or so. Is it possible he really doesn't what to say or do next for me or how to diagnose me? Is it is possible to have both PNES and Partial Epilepsy? I do know that when I am not on meds, I have more TC's and alot more absence seizures and feel like a zombie all the time. on my current dose of keppra, (3000mg/day) I have been doing very well, and have actually been wanting to get back to work, but since I'm a firefighter/emt, I have to make sure everything is under control completely before going back and will still have limitations due to liability issues. Sorry for the long post, just trying to figure this monster out!

 

[Nakamova]

I think you need to get a second or third opinion, preferably from an epileptologist. The fact that your neurologist said that it's not possible to have a normal EEG and still have epilepsy is a red flag. He's wrong. It's very]/I] possible. Some kinds of seizures can be too transient, or occur too deep in the brain to register on the EEG.

Some folks do experience both psychogenic non-epileptic seizures and epileptic seizures, but the fact that all your symptoms responded to medication suggests that yours are NOT psychogenic in origin.

 

[FFShawn]

Supposedly he is an epileptologist or so it says on his card now, it never used to though! There is only one other epileptologist in the area and he is the one who conducted my first VEEG and works very close with my current doc. The next closest epileptogist is on the other side of the state in the Seattle area from what I have found but I will start doing some searching for maybe one that is closer. I didn't really think that it would be psychogenic since the meds have been helping. I have been bounced from med to med very quickly from what it seems as well. I was started with topamax, then depakote, tried on zonisamide (allergic), then to the keppra, all in a short eight month time frame. Each time I would have a tonic clonic, he seemed to want to change my medicine. Is there a decent sight to research epileptologists somewhere?

 

[arnie]

Welcome! Just out of curiousity, do you mind telling me who you are seeing? I know some of the neurologists in that area. If you don't want to put it on the board maybe you could send it to me in a PM. Thanks! Also, I have had epilepsy for at least 30 years, and probably for than that, but undiagnosed, and I have never had an abnormal EEG.

 

[FFShawn]

PM Sent

 

[FFShawn]

So I get a letter in the mail today from my neurologist that states I have non-epileptic spells based on one test (tilt/EEG) where during the hyperventilation portion I briefly lost conscienousness but nothing showed on the EEG when it happened.

He also states that I have focal epilepsy because of my tonic clonic's and to stay on meds. Like I would quit them anyway just for fun.

It also states he will refer me to cognitive therapy in which I have already spent each week for eight months last year with very minimal improvement doing because he referred me there last year for it. Guess he didn't look at his previous notes!

Now I will for sure be getting another opinion. This is just so frustrating! Why don't doctors just listen to you and give you a straight answer to your face. If they don't know what's going on then be honest and tell you that!

Sorry for the rant, I blame it on the Keppra!

 

[Nakamova]

No need to blame the rant on the Keppra -- you've got plenty of reasons to be pissed off. I can't believe he's so clueless as to re-refer you for CBT. Actually I can believe it.

 

[arnie]

Did you get an appt with the guy I suggested to you? I really doubt that he will treat you that way.

 

[FFShawn]

Arnie, yes I called this morning, appointment is almost seven weeks out but I'm on cancellation list. Could have been in sooner but I have Army medical appointments on the days that were available. Took me almost six months for the Army appointments, so I'm making sure to attend those since they are to help determine my VA percentages!

 

[arnie]

Too bad about the wait, but that's how it goes. Maybe there will be a cancellation when you don't have another appt.
Keep us posted!

 

[FFShawn]

Yeah, it seems like there is always a longer wait for new patients!

 

[Tink]

Hi FFShawn and arnie,
I am new to CWE and live in the northwest in the shadow of the cascade mountains (as I see you do too arnie). I have had seizures for 3 yrs now without a diagnosis. Because the epileptic medicine increased seizure activity, the EEGs I had done at Harborview showed nothing, and I can hear all that is going on around me during my episodes, my neurologist says I have non-epileptic seizures. We have never been able to figure out what triggers my episodes and I have spent several years now lonely and feeling like your typical panic attack female. Although in my heart I know I am not having panic attacks, and because I can have a seizure when life is stressful and when life is as calm as can be. I am hoping that I might find some answers on this site or just communicate with people who understand what we go through and the pain felt when everyone gives you the "Well you have to much on your plate". Like who doesn't have a ton on their plate. My question for the two of you is who do you go to when you have gone to everyone under the sun for help and are still left wondering what is wrong with you? Thanks, I look forward to hearing from you or anyone that can help me find some answers.
Cheers,
Tink

 

[FFShawn]

Tink, I have been through multiple tests and only off of one of them did something even come close to happening when I was there and everything else has always come back normal. One neurologist tried to diagnose me with non-epileptic seizures because my EEG was normal, I was both confused and upset because I knew I was having the opposite. For me, when I went to another neurologist, he put me on a new medicine, and I started having less seizures, so he adjusted medicines and I have been doing much better on them.
I would suggest getting another opinion from a different neurologist, as that is what I am doing myself just to confirm my results so I am certain I will be getting the correct treatment.
Welcome to the board and as you browse through the forums you will find similar cases to yours and the support here is awesome.

 

[arnie]

Hi Tink, and welcome! It's frustrating to not be able to have meds control your szs, even if the docs haven't found a specific cause for them. Abnormal EEGs can show where szs are originating and give an idea of a cause, perhaps, but a normal EEG doesn't mean anything, as far as proving you don't have a sz. disorder. As you know, lots of people with epilepsy have no testable abnormal brain function to account for the szs. In many cases the symptoms themselves, and their response to medications, are as much of a diagnosis as we will ever get. As for triggers, in 30 years, and probably more, of sz activity I have never been able to pinpoint a trigger. I guess for me, and for many others, it just is what it is. Are you seeing a neurologist or, better yet, an epileptologist? How many different meds have you tried and for how long? Carry on! Let us know how things go.

Cheers!

 

[Tink]

Thank you so much for your replies. I am so perplexed about these szs. I posted my story in the Foyer but have attached it here to explain all that I have been through with doctors and meds. I would love any advice you have to give me since for three years I have thought maybe people are right and these are some crazy women thing. Aaahhh! I wish I had found this site three years ago.
I have had non epileptic seizures since 2010. I do all the things you see a colonic tonic or grand mal epileptic do during an attack. The only thing different is I can hear everything that is going on and if my eyes stay open and focused I can see. I have stumped all the doctors and all of my EEG's have come back normal. I have tried all kinds of seizure medications, to only find out that they increase my seizure activity. I am gluten and wheat free which has not increased or decreased my seizure activity. But, since I have been off it for three years now it is a real killer to my body if I have any of it. The only medication my neurologist and I have found to help with the seizures is a combination of paxil, buspurine, and nortriptlyn. Which when mentioned everyone quickly assumes are stress induced. Unfortunately I have seizures with stress and without stress and when placed in the hospital three different times with the head probes glued to my scalp, sleep deprived, and stressed induced I show no epileptic brain activity. My attacks can start with an aura, slurring of my speech, or I lose muscle control of my legs or get stuck (as I call it ) I can't get my body to move. I then will typically begin to contort my body, roll my eyes back, cross my eyes, shack uncontrollably, grind my teeth, grunt and so on. Pretty embarrassing and frustrating. I have spent the last three years trying to maintain a normal life style and reminding myself that I am not some crazy women. I have an amazing husband and two wonderful boys who have been nothing but supportive through all of this. But, it is still lonely being the weird one. That being said I just came across this site yesterday through a parent of one of my students (I teach 2nd grade) who asked if I had considered catamenial epilepsy. I spent last night and this morning (before and after doing Zumba, my addiction) reading posts and decided to become a member in hopes to find someone out their having similar symptoms as me. Wow, guess I am a little wordy, hope I haven't bored any of you. I look forward to hearing from someone out their that may have non epileptic seizures like mine (or maybe it is epilepsy).

Thanks again FFShawn, and Arnie. I look forward to more chats