Hello, people! Anyone else with psychogenic seizures?

[electrogirl]

I actually have both juvenile myoclonic epilepsy (which shows up on EEGs) and psychogenic absence seizures (which do not). The JME is under good control, but controlling psychogenic seizures is much more difficult. I cannot drive or leave the house by myself. Anyone else here in this boat?

 

[epileric]

Welcome Electogirl

I've had myoclonic epilepsy since I was born though not all my seizures are myoclonic ones. There's quite a variety of people here so I have little doubt you'll find someone that has the same seizures you do.

I'm curious though, what are you doing to control them? There's lots of info here on alternative treatments as well as the standard medications.

Meanwhile look around the site and make yourself comfy. I like to also check out the epilepsy news here (link at the top of the page) as well as the forum.

All the others should be by soon to say "hello".

Eric

 

[RobinN]

Hi Electrogirl -
It was thought for a while that my daughter had psychogenic seizures, but it hasn't been after all. I did a lot of research on them, so I am quite familiar.

My daughter has tonic clonic seizures, which are almost controlled by nutritional changes, vitamin and mineral supplements, and neurofeedback. She is med free

Pull up a chair and enjoy your stay.

 

[electrogirl]

Epileric: Right now it's a combination of meds, VNS, and psychotherapy. The meds control my myoclonic seizures, panic attacks and depression. (Zonegran, Tranxene, Effexor XR, and Yaz.) The VNS was originally intended to help control the myoclonic seizures, but oddly enough it seems to work better for the psychogenic seizures! My therapist helps me identify triggers and develop coping strategies.

RobinN: Well, I had a week-long VEEG that documented literally hundreds of seizures. None of the absence-type seizures ever showed any abnormality on the EEG! Both myself and the nurses were getting quite sick of the whole thing toward the end. I was also tested at a sleep center for narcolepsy, and everything checked out normal.

I am interested in trying various forms of biofeedback, but the insurance is... hmm... reluctant, to put it nicely. If I weren't in college and my parents weren't also supporting my sister (who has chronic pain), I might push it, but right now neither my parents nor I have the time and energy. Probably should take vitamins, but more pills- ugh! I prefer to eat my fruits and veggies.

 

[Meetz1064]

Hi, hello

and how do you do? It's very nice to meet you, Electrogirl. Nice name BTW. I like it.

So far as I know, I have no psychogenic seizures....just the sucky tonic clonic ones. If you wanna share, I'll let you! LOLOL :bigsmile: I, too, use nutritional changes to help control mine.....as much as I possibly can, at least. I'm still on meds, but in comparison to a lot of E patients, I don't take that much.

Hope you stick around and make yourself at home. CWE is really a neat place to be. Mr B has made us an AWESOME home here.......

Take care,

Meetz
:rock:

 

[skillefer]

Hi Electro! Welcome to CWE. As you can see, a friendly group. To answer your question, I have tonic clonics (yes I like to shake, rattle, and rolll...). But, I do know about not being able to leave the house or drive. Since I got pregnant, I'm not driving until given the OK, and my family worries about me, so they keep me always in their sights.

 

[RobinN]

I just reread your post, and I hope you also know that not all seizures are captured on an EEG. Just because it doesn't show up on the test doesn't mean you aren't having seizures.

 

[electrogirl]

If they don't show up on an EEG, then how do you catch them? I mean, I had literally hundreds of seizures during that video EEG... I find it hard to believe that nothing at all would have shown up if it were due to epilepsy. And this was at the UCLA epilepsy center, I should think that they would know how to read EEGs. Now I'm curious.

 

[epileric]

Sadly they're not all caught

After one of the EEG's I'd had my neurologist told me the "good news" that I didn't have epilepsy. He tried to take me off of the tegretol cold turkey. My GP let me have 1/2 the dose I was used to but I still convulsed after 3 days.

Truth is an EEG can help but is not always dependable when it comes to seizures,

 

[skillefer]

Robinn's right Electro. Most of us here have had perfectly normal eeg's and MRI's.

 

[LivingFruity]

Hi Electrogirl :hello: Welcome to CWE!

It's sad that insurance is so reluctant to cover some more natural alternatives. I too prefer to eat my fruits and veggies as opposed to taking supplements. A lot of people have had great success in controlling some or all of their seizures through nutrition. That's how we've chosen to treat my son's epilepsy. Check out some of the information here on various diets.

 

[RobinN]

If they don't show up on an EEG, then how do you catch them? I mean, I had literally hundreds of seizures during that video EEG... I find it hard to believe that nothing at all would have shown up if it were due to epilepsy. And this was at the UCLA epilepsy center, I should think that they would know how to read EEGs. Now I'm curious.

I have learned that a certain type of seizure can be too deep in the brain for the EEG to pick up. Also certain areas of the frontal lobe are difficult for the EEG to capture. I will search for the research we have on that.

I am not saying that your seizures are not psychogenic. If it makes sense to you , and it appears that is what is happening, then of course it should be treated as so.

In our case... also UCLA... they classified tonic clonic seizures as psychogenic, after a 20 minute exam. I lost almost a year of time in treating my daughter. I have since moved to USC to a doctor that is a specialist in catamenial seizures. She is helpful in alternative treatments and we are moving forward.

I understand the need to be careful in diagnosis, you certainly wouldn't want to prescribe medication for a symptom that it was not useful for. However, there are so many alternatives being looked into. Such as nutrition and neurofeedback. We have threads on the subject here, so I won't go into detail. But there are many reasons for seizures, and they all might not be classified as epileptic.

 

[electrogirl]

Thanks for the warm welcome, everyone!

It does make sense to me that at least some of my seizures are psychogenic. However, I think I will give my neurologist a nudge next time I'm in for VNS adjustments. I want to see if there are different scans that could be done, and maybe an epileptologist would be able to convince my insurance company to cover neurofeedback.

 

[RobinN]

You will also need to check to see if it can be done with a VNS.
I am unfamiliar with that aspect.

 

[Bernard]

Hi electrogirl, welcome to the forum. :hello:

 

[ziggidypoo]

Hi Electrogirl!!

Glad you are here and glad you brought up psychogenic seizures. It just makes me more angry at ignorance in the medical field. It does not matter WHAT the CAUSE of seizures - it means HELP!!

I have had seizures since 18 mos old, same type as now, cp/pc (TLE), caused by high fever/exposure to measles (no rash)/probable encephalitis current neuro says.

You are among people who care about you and accept you and will do everything to help you on your journey with seizures.

I learned something new from your thread of posts about most EEG's/MRI's being "normal" and some "Deep" brain seizures not showing up.

aaaaaaaaaaaaahhhhhhhhhhhhhhhhhhh...........so good to be back "home".... here among people who "understand" and "accept". May you feel such comfort as well.

HUGS!!

 

[seizures4ever]

Hi Electrogirl and welcome!

I had a brief history of psychogenic seizures, and I am SURE that is what they were...I could just feel it in my heart.

My brief story,
I was finally diagnosed with epilepsy at 16 (simple and complex-partial). And then, out of the blue, I had a series of tonic-clonics at night while I was asleep and nearly died. I was 17 and scared to death. The anxiety/panic set in after that...total chaos mentally. Hence, I had about a year of psychogenic seizures (resembling grand mal/tonic-clonic). I always call it my period of "panic attacks." Half the American population is on drugs for depression and anxiety, so this often helps people relate.

With all that said, I have also had some epileptic seizures while hooked up to an EEG that did not show. And they were misfires...I am SURE of that, just as I am SURE that I had a short period of psychogenic seizures. I agree with Robin; actually, my neurologist agrees with Robin She said that some seizures happen too deep in the brain for the external EEG to pick up. That explains why my EEG went crazy every other time I had a complex-partial but stayed normal that one time.

I have been diagnosed with epilepsy 16 years. I have tonic-clonic, simple-partial, and complex-partial seizures. The t-c's are under control, unfortunately the others are not. I won't go into all the details...you can click on my screen name to see my profile if you're interested.:e:

Again, welcome to the forum! We're glad you joined us. I look forward to getting to know you better.

All the best. -Julie