Anyone dxed with non-epileptic seizures

[horsehead]

Well that seems to be what the neuros think I have . Does clonazepam help you? It seems to be working for me:woot:

 

[Nakamova]

Clonazepam is known to help with epileptic seizures too, so if it's working for you (yay!) that doesn't necessarily make the diagnosis any clearer unfortunately...

 

[horsehead]

argh, I wonder if I will ever know. Lets just hope this continues to work. I feel so much better.

 

[Nakamova]

I feel so much better.

This is the main thing. I'm thrilled for you!

 

[horsehead]

Thanks.

 

[ekuadam]

I still have not been diagnosed with anything. Had a seizure 6 years ago, then one again last month and another one a couple weeks later. had an aura all three times before them. All EEGs and MRIs normal. I was told though that any time someone has more than 2 seizures that you are epileptic, but i have not been officially diagnosed with it.

 

[horsehead]

I hope you find out whats been going on soon. I've had seizures since I was around 9 years old, my mom thinks. Sometime having more than 3 in a day but the neuros are still dxing me with non e seizures. I guess it doesn't matter really as long as I am feeling better.

 

[julie wishes]

Well its taken me hours of reading to figure this out. I read that epilepsy is defined as two or more seizures. But with further investigation it seems the definitions in this field of science are changing rapidly as we learn more and more. Wikipedia.com is a good resource to get the basic definitions down. As I can see it. There are epileptic and non- epileptic seizures. The non epileptic are broken into physiological or psychogenic non-epileptic seizures. They are attempting to differentiate the two types epileptic and non epileptic so they don't misdiagnosed people. ????

From what I see, its basically treated the same way. ??? And present in the same way as far as what we feel and experience, except for the EEG during a non-epileptic seizure does not show neuronal activity. However, I've seen plenty of posts that say this isn't conclusive because it could be a false negative meaning the brain tissue generating the seizure could be too far away from the EEG lead to be detected ... thus it says negative, but is really positive just undetectable. ???

I'm still researching. But it seems the treatment is the same. You are on a drug that is working which is wonderful. And the diagnosis part is ultra confusing.

Did your doctor tell you anything about it? And if so, I hope you can share. I suspect I have both types... if that is possible. My doctor was so vague.

 

[huskymom]

I DO have both types. I found that out while I was having the 5 day monitoring in the hospital. When I have longer ones, typically 15-20 minutes, there is a lot of movement in my eyes, arms and legs. These do not show up on the eeg, so they are classified as non epileptic. However, I also had epileptic seizures. I am just a giant overachiver! (except in spelling)

 

[horsehead]

I think I may have both types as well. My doctor didn't say much just that non epileptic seizures are hard to dx and treat. I honestly dont think he knows for sure whats going on with me. He said I was a tough case. I just love to be difficult.

 

[somegirl1123]

Horsehead,

I have recently been diagnosed with non-epileptic seizures. They also have me on Klonopin, but I am continuing to have seizures. I do not have tonic-clonic seizures. Mine are absence/partial-complex type. I generally have a warning aura before hand. I can say the Klonopin has decreased the frequency, but I just want them to stop altogether. I am new here today. In fact...your posts (which I found via googling PNES) are why I registered here. I am so glad the meds seem to working for you. any advice for me?

 

[Maidenminx]

I am on 100 mgs of lamictal twice a day and 500mgs of keppra twice a day. Since September I have been told I probably won't seize again, followed by you have temporal lobe epilepsy, then, no it looks like myoclonic epilepsy. Now I have my sleep deprived VEEG and have jerked all over the place during it. (It nearly made me laugh when the EEg lady asked me to tell her when I am jerking so she can note it. I told her she will be able to see them. Shocked, she asked, "are they that violent?". I nearly rolled my eyes before responding "Actually the violent ones nearly throw me out of chairs and are accompanied by a sudden vocalisation" She was more shocked and did the annoying sympathy thing)

Apparently during that EEG there was hypoactivity where they expected hyperactivity. So I have now been diagnosed with psychogenic non-epileptic seizures. I am going back to my first neuro for a second opinion, but I'm pretty sure he'll say the same. So far I've been shoved back to my GP for a referral to a psychiatrist and told to stay on my meds. I was only told this 4 days ago and the first day was devastating, because it made me feel (even more) insane. The day after I had a great day and felt in control and had few jerks and only a couple of simple partials. Yesterday I didn't feel quite so great. Today I am reminded that just because I am apparently generating these seizures myself doesn't mean I can stop them with will power.

This sucks.

 

[horsehead]

I'm orry I really dont have much advice just keep bugging your doctors untill you get some help. remember also you are not alone.

 

[LJ-Bain]

Horsehead...I'm so glad the clonazepam is working for you!
I got a trial dose of those as well. Just 5 tablets. I've only used 3 of them.
I find that they reduce the strength of my "seizures" but I am a walking zombie feeling very sedated and tend to only respond to people with one word answers and it makes me grumpy. So I'm not a big fan of them myself. But everyone is different!

Whatever works and makes life easier is a good thing!
I do dearly wish for everyone a speedy and uncomplicated diagnosis but they do take their dear time about it with some cases. Which is emotionally really difficult...let alone us dealing with the seizures as they figure out what to do with them!

Maidenminx: They really have taken you for a ride with their multiple diagnoses. It's hard to know how to handle things yourself when they can't even figure you out...because then they don't know how to help you. I find the sympathy thing annoying too. Especially when it is associated with psychogenic seizures. Especially e.r. docs...let's save the sympathy (it often seems put on and fake) and let's see how you can help me instead.

Is anyone familiar with the 5 stages of grief? I feel like we are all mourning our health and the way we imagined our lives were going to be at the beginning.
I think it goes, denial, anger, bargaining, depression and finally acceptance.

Juliewishes...have you found that the treatment is the same? Medication wise? I haven't found that to be true for me but the "practice of medicine" can be practiced in so many different ways. Doctors are very vague. It's a bit annoying actually. It's like they don't want us to panic so they keep us in the dark until it's absolutely necessary.

 

[SassySarah]

My seizures haven't been officially termed epilepsy however the last two visits with the neurologist he said it acts JUST like epilepsy. I spent four and a half weeks in the hospital last Aug, seizures multiple times per day. All Tonic clonic lasting 45 mins to 8 hrs. Seizures are still only stopped 45-60 mins after IM Ativan. After release we reduced them to once a day then approximately once every three days. After push from the PhD psychologist that I was experiencing damage to my brain due to the frequency and length, I was finally placed on tegretol in addition to klonopin and roboxin. This after no success with depakote and topomax. I also did not do well on tegretol generic- breakthrough seizures. I have also had a few absence seizures. I have also gone back and forth with doctors claiming psychosomatic because I usually don't lose consciousness, although I have and more often I lose speech. So far EEGse are normal and MEI only shows an "inactive" pituitary adenoma. I have now been dealing with severe auras that last for hours. I have trouble making decisions, concentrating, remembering important information. My husband basically directs most of my important actions. I was a high power project manager before this began- very independent and strong. My life is upside down.

 

[Dagmar]

[

Apparently during that EEG there was hypoactivity where they expected hyperactivity. So I have now been diagnosed with psychogenic non-epileptic seizures. I am going back to my first neuro for a second opinion, but I'm pretty sure he'll say the same. So far I've been shoved back to my GP for a referral to a psychiatrist and told to stay on my meds. I was only told this 4 days ago and the first day was devastating, because it made me feel (even more) insane. The day after I had a great day and felt in control and had few jerks and only a couple of simple partials. Yesterday I didn't feel quite so great. Today I am reminded that just because I am apparently generating these seizures myself doesn't mean I can stop them with will power.

Maiden - - I'm so sorry you're going through all of that! It seems to me that these psychogenic seizures (just learning about them here) are indeed very real, if that's what you're really having, and very serious. My understanding is they could be the physical manifestation of past trauma. Either way, you are dealing with a health problem and I wish you the best of care.

This sucks.[/QUOTE]

 

[SassySarah]

Clarify - psychogenic has been excluded in my case

I believe I wasn't clear. I don't have a psychogenic seizure disorder. That has been excluded excluded after multiple symptoms came up. I was told frontal lobe epilepsy like mine is often very hard to diagnose on an EEG. I have spent months following the psychosomatic diagnosis and working with psych of all types - none of which agreed with the idea.
.

 

[Maidenminx]

Thanks every one. I kinda feel like I stole the thread though. Sorry Horsehead.

 

[horsehead]

No problem steal away