Could I have PNES?

[danjor]

They have done two EEGs. Nothing. My first doctor from the very beginning. Even before I had any tests done was convinced I had this disorder. Which doesn't make sense to me. I don't know to much about this disorder, but the way she made it sound is that I am faking it. Which I most certainly am not. I wouldn't make my mom pay thousands of dollars in hospital/doctor/RX bills if it wasn't necessary. In fact I hate it now! Haha. I'm hoping that my new epileptologist on Friday will tell me more, but i really wanted your opinion.

I Was told that I may need to get a VEEG. What is that like? What if I don't have a seizure during it? What if I do? lol This is all so confusing.

I'm a very happy person. I don't get stressed out. I don't see where PNES would really come in...

 

[Rae1889]

Well, they are able to tell by certain mannerisms whether someone is faking or not. But a psychogenic non-epileptic seizure or pseudo seizure is still a real seizure with different characteristics.
for instance, a non-epileptic seizure could be one where someone diabetic has a seizure. Nothing to do with epilepsy at all, but that is there response to low blood sugar, and as far as i know, does not show up on an EEG.

But as far as psycogenic non-epileptic, that would be like saying it is a response from depression. Have they given only one kind of EEg. I have been told that some seizure are created deep in the brain, so normal EEGs do not pick this up. Ask your doctor about that one.

Also a video EEG is the same as a regular EEG, but now you sit there, and they try to provoke a seizure while on video to catch what you look like while having htem. If you have a seizure, you'll be fine the nurses are there to help, and if it doesnt show up on the EEG then they need to figure out what is causing the seizure. DOES NOT mean you are faking it.

If you dont have a seizure, then you dont have one, and they will schedule another one, or an ambulatory EEG (where you where it at home for 48-72 hours where you are most comfortable, doing what you normally do when you have a seizure) this way its more likey to catch one.

 

[Cint]

I think it is a bunch of hogwash. Just because nothing shows up on an EEG, doesn't mean you're faking it. Many times nothing shows up on EEgs. When you see your epileptologist, he/she may want you to have a video EEG. They will probably put you in the hospital for a few days with the EEg monitor attached so they can video any seizure activity to see where the seizure activity originates. If you don't have a seizure, then maybe they can re-schedule another one at a later date.

 

[danjor]

No. I have only had one type of eeg. And they were quite spread apart. And the only thing they did that could have really provoked a seizure was breathing heavily.

Also, what are you allowed to do during those few days. It seems that you would get awfully bored being in a hospital.

(Sorry if I'm aksing alot of questions >_>)

 

[Nakamova]

I agree with Cindy. Hogwash. Plenty of people with epilepsy have negative EEGs, especially if the seizures originate deep in the brain. The EEG is an imprecise test, with both false positives and false negatives.

Although PNES is a real phenomenon, I truly doubt that's what you have Jordan. If your epileptologist insists on this diagnosis after one video EEG, I would press for an additional EEG and/or a second opinion.

 

[Nakamova]

I think it varies according to the hospital, but during a Video EEG, you can usually wander around your hospital room or a lounge, and listen to music, read, watch TV, do video games, etc. You're not allowed to shower or wash your hair because of the electrodes.

 

[Cint]

Nakamova's right. I wasn't allowed to shower or wash my hair during my hospital stay. I was in for 8 days and yes it was pretty b-o-r-i-n-g!! If you're epileptologist orders for you to have this done in the hospital, bring plenty of video games, reading material, an iPod, anything else to keep your mind busy.

 

[Meetz1064]

OK, Jordan

Let me enlighten you AND your doctors about something. I have had EEGs done off and on for 45 years now (shhhh, I tell everyone I am 21!) And up until 4 years ago, EVERY SINGLE ONE of my EEGs CAME BACK CLEAN!!! NO JOKE.

Yet, I had DOCUMENTED PROOF from nurses and doctors, as well as paramedics that I AM an epileptic. My seizures scare the bejeezers out of all of them. It is HIGHLY unlikely that you have PNES. They simply need to do some EEGs that are LONG ENOUGH to capture your seizures WITH the right triggers. That's it.

And, it may very well be time to go doctor shopping...

 

[danjor]

Isn't there a type of epilepsy that doesn't show up on an EEG, or rarely shows up on an EEG? I remember reading about it. I think thats what rae was talking about.

I think it varies according to the hospital, but during a Video EEG, you can usually wander around your hospital room or a lounge, and listen to music, read, watch TV, do video games, etc. You're not allowed to shower or wash your hair because of the electrodes.

Ew haha. Hopefully I'm allowed to walk around. I'm terrible at being still. I guess it would be a perfect time for me to catch up on my reading and studying the bible. ^_^

Let me enlighten you AND your doctors about something. I have had EEGs done off and on for 45 years now (shhhh, I tell everyone I am 21!) And up until 4 years ago, EVERY SINGLE ONE of my EEGs CAME BACK CLEAN!!! NO JOKE.

Really? Did they ever suggest to you that you had PNES? Cause it seemed like everytime I went to my first doctor she said pseudoseizure. Which made me very uncomfortable. The way that the word Pseudoseizure sounds isn't pleasant .

Yet, I had DOCUMENTED PROOF from nurses and doctors, as well as paramedics that I AM an epileptic. My seizures scare the bejeezers out of all of them. It is HIGHLY unlikely that you have PNES. They simply need to do some EEGs that are LONG ENOUGH to capture your seizures WITH the right triggers. That's it.

You're right. I have had paramedics witness me have a seizure. However, they stuck something in my mouth (I was out of town, the ones here are great) so I'm not so sure they can vouch for me hahaha.

And, it may very well be time to go doctor shopping...

I'm attempting to! I'm hoping this new doctor will help me, instead of giving me a quick diagnosis.

 

[Rae1889]

Yes, try doctor shopping. If she makes you uncomfortable, then thats not good either.

Bring a book, or video games etc that can help you be less bored during the Video EEG. Do you know what any of your triggers are? If you do, it might be a good Idea to try to bring that thing that sets you off.

For me, I am going to bring my iPod with the brittanny spears song "three" on it, so that I can have a seizure while on the EEg, as this song seems to make me tonic-clonic.

You should do that. you are in a hospital setting so you will be safe. Just as long as you know what those triggers are. Tiredness(try not sleeping before you go in) or eating certain foods.

 

[Meetz1064]

You have

to understand Jordan. I have had in-hospital EEGs (as a kid--they only lasted a couple hours), in-clinic EEGs (they were video EEGs and lasted 8 hours), AND ambulatory EEGs (these lasted 96 hours).

When I had the seizures in front of the doctors, I dropped, and hard. Broke bones, and showed ABSOLUTELY NO SIGNS of PNES to any health professional at any time. And still managed to scare them witless. Go figure.

Just in the last year or so, during the ambulatory EEGs, they have finally figured out part of what's going on, although you must keep in mind all of my seizures occur in my sleep. And, I have not had a t/c in over 6 years now.

I have now been diagnosed with t/c's, myoclonics, electrographic e, and partials originating in the left frontal lobe. All in my sleep.

GET ANOTHER OPINION, AND POSSIBLY ANOTHER DOCTOR. PLEASE!

 

[Nakamova]

Doctors aren't supposed to use the term "pseudoseizure" anyway. The majority of PNES seizures aren't fake or pseudo, they just are psychological in origin, rather than electrical. Another reason to find a different doctor.

 

[Crystal11]

PNES are seizures that are caused as a sort of mechanism in dealing with stress or depression. Some people have seizures for attention but those are almost in the catagory of Muchausen or milingaring disorder. An epieptologist would be able to tell you whether your seizures are generated from abnormal brain electrical activity or from the body or other system such as the heart etc.
There are specific characteristics to each seizure type that are epileptice and characteristics to non-epileptic seizures that can be seen usually right away. An EEG also helps. If you have an EEG and a seizure during it, this could also indicate PNES especially if its a tonic-clonic like seizure. Some people with complex partial seizures can have a seizure and it not show up on EEG but those persons usually have the characteristic spike and wave on the EEG.
A video EEG would definitly show whether the seizure is epileptic or non-epileptic. The brain waves would not match the event happening to the body or other behavior.
VEEG is the best way to go if a doctor is not sure if the person has epilepsy or another condition causing the seizures. Some cardiac conditions cause seizures but those can be fixed with medications etc.

Take care and hope you find an answer soon.
Crystal

 

[vapour]

WHen I had my last EEG with my current neurologist, I was having seizures at the time. before going in. HOwever it did NOT pick up all the seizures I had... it picked up alot .. (1 hour EEG) but not all.. so yes some are too deep in the brain to show up.

It gets very complicated doesnt it. It seemed to be taking along time to diagnose my epilepsy until things went downhill drastically in march.. th en it was pretty darn obvious.

I have no idea what they look for as far as no-epileptic and how it looks different, or as far as faking it, but I can vouch that yes some seizures are too deep in the brain and they should be aware of that/need to be aware of that before jumping to conclusions.

Is your Neurologist an epileptologist ? If not.. see if there is a Neurologist in your area who specialises in epilepsy and has years under their belt...you can call up your nearest epilepsy alliance or support group to find that info out...or even go online somehow.

May I ask what happens to you during a tonic clonic ?

 

[RobinN]

So rare that people "fake" this. PNES is not faking. If this is what is being discussed, then a recommendation for psychotherapy is typically given. A therapist can also help you figure out if there is a biological reason these are occurring.

If it is a blood sugar disorder causes seizures. Be truthful with yourself about your eating habits. This too can be discussed with a therapist.

I think the more tests you have can help when they can and are a hindrence when they don't.

What are your parents feelings on the subject?

 

[danjor]

Is your Neurologist an epileptologist ?

May I ask what happens to you during a tonic clonic ?

My new doctor is an Epileptologist. I see him on Friday for the first time.

During a tonic clonic.. Im not entirely sure. My mom is usually the one to see it or friends or people at school. But whenever I go straight into a TC. My mom says that I have made a weird noise, almost like a scream or moan and then stiffened up and fallen to the ground and started convulsing.
A lot of times I think I have what is considered either an absence seizure or a Complex Partial that generalizes into a TC.

What are your parents feelings on the subject?

My mother really just wants whatever works for me, so she is listening to whatever the Doctor says. We have both looked up a lot on the internet, but she stresses out alot over all of this and doesn't really know what the next best step is. The only thing my mom really doesn't want to hear is PNES. She really doesn't think thats what it is, especially whenever we haven't had many tests.

 

[matchu]

I think it varies according to the hospital, but during a Video EEG, you can usually wander around your hospital room or a lounge, and listen to music, read, watch TV, do video games, etc. You're not allowed to shower or wash your hair because of the electrodes.

I went through veeg in April and had seizures but was told they were pseudo seizures and never have heard from my Neuro since. When they told me luckily I had read about it hear on CWE so I was able to ask the dr questions, but my family was in a stupor. They still are for that matter. I am going through psychotherapy. Basically you take time to learn about yourself and what it is that sets you off, and determine what it is you can do to avoid or change the way you react. Basically you have to change the way you think about things. Which can be difficult, as you have to change your behavior and this can be difficult to say the least.

 

[RobinN]

Has that therapy helped you Matchu?

 

[matchu]

yes, but I have not been in a while do to the cost and my insurance does not cover it, and I am not wanting to find someone else. I am comfortable with my Dr. and I choose who I see.

 

[RobinN]

Did you learn enough "tools" to use, to eliminate seizures?