Non-epileptic seizures.

[Stephanie86]

I went to my new neurologist today. He said that my symptoms are unusual and they might be non-epileptic seizures.

Has anyone here been mistakenly dx'd with this before being correctly dx'd? I'm not sure what to think. It could be the right dx, but it threw me for a loop.

 

[petero]

I've never had an EEG that was positive for seizure brain activity

so until I do, my seizures are "non-epileptic" seizures, by definition of epileptic seizure having its origin only in the brain itself and demonstrating a certain type of brainwave frequency

that's the way I understand it

but that doesn't discount the fact that people have seizures that are non-epileptic seizures, and that by all accounts (which are not mine, because I was out of it/unconscious) I have had seizures

and I'm not really sure much beyond that

 

[deeds]

I have been diagnosed with both epileptic and non epileptic seizures, apparently they are stress induced. The dr couldn't wrap her head around this being a stressful thing to live with!
The biggest concern is being put on several different meds..... which are almost impossible to go off of if they are not working. Seizures seem to be the #1 concern re:adjusting doses!
I am on Keppra, Dilantin, Clobazam and Vimpat......

 

[Brent]

It's pretty common for people who have "non-epileptic" seizures to also have "epileptic" seizures and vice versa. One does not preclude the other. What's more, I don't recall the exact percentage, but the percentage of neurological cases with a confirmed diagnosis is actually pretty low. In other words, more often than not, neurologists never actually determine the exact cause of symptoms.

 

[petero]

It's pretty common for people who have "non-epileptic" seizures to also have "epileptic" seizures and vice versa. One does not preclude the other. What's more, I don't recall the exact percentage, but the percentage of neurological cases with a confirmed diagnosis is actually pretty low. In other words, more often than not, neurologists never actually determine the exact cause of symptoms.

in other words, they could just say "I don't know", but those don't get many return clients
:banana:

neurologists have interest in maintaining a balance overall it seems, and not really an interest in "curing" us of our brains

 

[momof3boys]

I had this happen to me this year as well. I went in for my first VEEG, and had simple partial seizures, with my EEG having spikes of epileptic activity. before being released from the hospital, the dr set me up a visit with a psychologist, to see if she agree'd that it was possible that I was having non epileptic seizures. i saw her a few times, and in that time period, I was put back on keppra xr. I tried other seizure medications, but they were not good at all for me. This psych dr explained to me that if what I was having was non epileptic seizures, the Keppra xr would not be controlling them, and I would be having them no matter what. We also have to take into account that when I was put in the hospital for my VEEG, my dr took me off both medications, Carbatrol and Keppra XR COLD TURKEY. just flat out told me to quit taking both and let the seizures begin. Never in my life have I ever been cold turkey'd off any seizure medication.. By doing that, It did bring on the simple partial seizures. What I was use to having was complex partial and grand mals. My last grand mal being in 2000-2001. He said it was possible that I outgrew the grand mal seizures and was left with complex partial and simple partial seizures. But after many visits with the psych dr, they both saw that what I was having in my VEEG was the affect of being cold turkey'd on my medications, and that I do have epileptic seizures. Like the psych put it to me, if the seizures were non epileptic, the anti seizure medication would not be controlling the seizures.

 

[deeds]

Barbaric? No

wow....
and what is the warning on most drugs? never stop taking them cold turkey!
I think it is dangerous! I attempted to wean Dilantin, slowly...... from 300 mg to 250 for a few weeks and then down to 200 mg..... after 3 days I started to have Grand Mal seizures. Not a pleasant experience. Now I am back up to 300mg and also on 1,000mg of Keppra and 30mg of Clobazam and 150mg of Vimpat. I was supposed to wean the Clobazam very slowly. Being a benzo, I was warned of withdrawal.... mostly seizures. My neurologist said I could stay on it if it was such a major source of anxiety. I have been on Vimpat since mid September, only 50mg am and 150 pm......
I am having a few seizures and it might be time to increase it, I am very tired though.
If anyone has some happy stories about weaning Benzo's please share. I have only heard horror stories.
Also, maybe 4 meds is too many? I am 5ft tall and weigh about 105......
Back to the neurologist on December 6th.

Thank you all
deeds

 

[Loopy Lou]

I've just been referred to a neuropsychologist, will probably take about 6 months for it to come round. My EEG showed seizures when I had it done 3 years ago but I just can't seem to find a med I can tolerate apart from keppra which doesn't fully control my seizures on its own.

I'm wondering if my neurologist thinks I'm having non epileptic seizures.

 

[deeds]

and speaking of "I DON'T KNOW"........

in other words, they could just say "I don't know", but those don't get many return clients
:banana:

neurologists have interest in maintaining a balance overall it seems, and not really an interest in "curing" us of our brains

I am almost 53, female with absolute seizure exacerbation around the menstrual cycle. I live in Canada, a fairly civilized country if one considers waiting 13 months to see a neurologist to be civilized......
A few years back, before I put my faulty brain into the hands of the Americans I asked a simple question to a "Nurse Practitioner" at a well known Comprehensive Epilepsy Centre up here this simple question..... "what will happen when I go through menopause?"
well, this is the response I got, a)seizures could get better b)seizures could get worse or c)seizures could stay the same
Hey, this is my life, not a game show.
Perhaps, "I DON'T KNOW!" would have been the best response.
Clearly, they really don't knowonder:

 

[petero]

well I guess no one knows the future

 

[epileric]

I am almost 53, female with absolute seizure exacerbation around the menstrual cycle. I live in Canada, a fairly civilized country if one considers waiting 13 months to see a neurologist to be civilized......
A few years back, before I put my faulty brain into the hands of the Americans I asked a simple question to a "Nurse Practitioner" at a well known Comprehensive Epilepsy Centre up here this simple question..... "what will happen when I go through menopause?"
well, this is the response I got, a)seizures could get better b)seizures could get worse or c)seizures could stay the same
Hey, this is my life, not a game show.
Perhaps, "I DON'T KNOW!" would have been the best response.
Clearly, they really don't knowonder:

I was told years ago that what they do know is that there are about 5 or 6 times in a persons life when their seizures are most likely to change one way or another, I remember at the beginning & end of puberty, around 35-40 yrs old & around menopause were 4 of them. I can't remember the rest.

I think what she was saying was that something may happen, even if she said it the long round-about way.

 

[deeds]

Pregnancy could be one, sleep deprivation? stress? death is likely one as well, but hopefully that one is a long way off.
For now I remain a pharmacist's dream. I just hate the concept of being addicted to a drug that is likely not helping the seizures but promises to cause them if I go off it.......

 

[Stephanie86]

Thank you for your responses. I hope they can figure it out, as I'm nervous as heck.

 

[deeds]

There is absolutely nothing like talking to people who know how you really feel.
Thanks and I know how you feel. Meditation has been very effective for me, check out Jon Kabat Zinn, I took the "MBSR" program, mindfulness based stress reduction, you can even download the cd's from soundstrue.com, yoga has been amazing as well as weekly Shiatsu treatment. That mindfulness thing should be a pre requisite for living.
All the very best,
Deedee

 

[Wanyonyi]

Cannabis for Epilepsy

There is no doubt that cannabis like this bonzaseeds.com/blog/acdc/ can work wonders for children with Dravet syndrome as well as other types of epilepsy. However, one major fall back is that the substance still isn’t widely available due to legal restrictions. Cannabis as a helpful medicine for epilepsy is well known to others. The study involved 120 children and teenagers with Dravet syndrome who were split into a test and control (or placebo) group. The test group was treated using Epidiolex, a CBD drug produced by GW Pharmaceuticals, and monitored for a total of 14 weeks.
The results found that the average number of monthly seizures in the CBD group decreased from 12.4 to 5.9 (52%). The placebo groups results dropped from 14.9 to 14.1 (5%). 3 patients in the CBD group were also left completely seizure-free.