PNES, AED's and a whole lot of nerves

[jenagade]

So I have lost count of how many posts I've put up here in the last week but I am very nervous coming up to my video EEG.

After 2 years of being treated for seizures, with 2 abnormal EEG's and 1 normal sleep deprived EEG, my neurologist is strongly leaning towards a PNES diagnosis, the only reason he is doing the video EEG is to rule out epilepsy.

My psychiatrist, who has seen me for longer than my neuro has, is absolutely adament that it is not PNES for many reasons among which is that it gets better with medication, and none of the behaviour relating to anxiety and depression has changed since the seizures started, which she would expect if it were PNES.

I just want to know, to try and put my mind a little bit at ease, even though I'm sure I'll find something else to stress out about. Is it at all possible that PNES would respond to AED's?

Agh so nervous, I've been battling with depression and anxiety for years so I already know how hard it is to get mental illnesses under control and I'm genuinely scared about having to deal with another one. I don't know why I would be more scared of that than it being epilepsy, but I guess I just can't handle another thing which would make me constantly doubt myself and everything happening around me.

 

[SlimBlue]

From a quick google of 'do psychogenic nonepileptic seizures respond to anti-epileptic drugs?'

It seems no, in fact it's one of the describing traits of PNES. However, there has been a study that indicates people with PNES may experience placebo effects from AED treatment or anything else they are told is an 'anti-seizure' drug. I wish I could say a resounding no. Damn. So I guess it could be possible, just not bloody likely, and I still would say the neurologist is wrong to go straight for it, especially after abnormal EEGs!!. Many on here have intractable E, but it does not mean they have PNES..

sources for the usual definition of PNES:

The Truth about Psychogenic NonEpileptic Seizures ...
http://www.coping-with-epilepsy.com...y.com/.../truth-about-psychogenic-nonepilepti...
Epilepsy.com
Psychogenic nonepileptic seizures (PNES) are an uncomfortable topic, one which is ... diagnosis of epilepsy and are not responding to drug therapy are found to be ... many patients misdiagnosed with epilepsy are prescribed antiepileptic drugs. ... Lastly, many physicians do not have access to EEG-video monitoring, which ...

Psychogenic Nonepileptic Seizures Clinical Presentation
emedicine.medscape.com/article/1184694-clinical
Medscape
Sep 15, 2014 - Psychogenic nonepileptic seizures (PNES), or pseudoseizures are paroxysmal ... with a previous diagnosis of epilepsy that does not respond to drugs. ... Resistance to antiepileptic drugs (AEDs) is usually the first clue and the ...

Non-epileptic seizures | Epilepsy Society
www.epilepsysociety.org.uk/no...
NSE ‑ The National Society for Epilepsy
Non-epileptic seizures (NES) or dissociative seizures are different from ... into two types: organic non-epileptic seizures and psychogenic seizures. .... If you have seizures that are not epileptic they will not respond to anti-epileptic drugs (AEDs) ...

Neurology Now: The Seizures No One Wants to Talk About ...
patients.aan.com/resources/neurologynow/?event=home...id...
Gloria was diagnosed with epilepsy and started on the anti-epileptic drugs ... she experienced what are known as psychogenic non-epileptic seizures, or PNES. ... these patients will not respond to treatments for epilepsy,” says Carl W. Bazil, ...

etc etc etc

source for the placebo study. I'm sorry to confuse the issue by linking this study- however they're only pointing out the placebo effect afterall, and saying they need a different way of possibly flagging the two conditions.

Maybe someone on here with actual experience of the condition will correct me. But it definitely seems your psych knew what they were talking about, when they said that since it reacted favourably to meds it wasn't PNES. If your neurologist thinks you're having the placebo effect from your previous AED treatments, it's a longshot at best, and the weight of evidence is against him. Your condition improved with AEDs? You have abnormal EEGs? It's a duck- it quacks, it's a duck. Occam's Razor

The thing is, it doesn't sound like he's making some brilliant avant-garde diagnosis, it just seems he doesn't know what's going on so doesn't think it's E.

The whole condition is even more badly known than E, and there are frequently misdiagnoses both ways. Because a neurologist will be more likely to try treat the more 'serious' possible condition with the standard meds, it's usually PNES misdiagnosed as E, but can easily be the other way when a neurologist has run out of explanations or treatments and faces intractable E.

At the end of the day, don't let that neurologist diagnose you with it, if you and other doctors don't think it's likely..

 

[masterjen]

There are "events" that look like seizures that are nonepileptic but that are also not psychological. They are usually due to various chemical imbalances in the body and other neurological conditions. Make sure that the possibility of other conditions have been ruled out as well before entirely settling in on PNES. Some of these conditions are also very treatable or at least improved with medication but I would imagine the medications are not AEDs but I don't know.

 

[Kgartner]

Boy, I wish neurologists really knew the horrible stress and self-doubt they lay on us when they float those kinds of diagnostic speculations. I was tortured by the uncertainty for months. I know that they need to pursue these types of things, but if they could just walk a mile in our shoes they might be more careful . . .

First of all, while it is conceivable that psychogenic seizures could respond to anti-seizure medication, it is is EXTREMELY unlikely! As SlimBlue said, one of the hallmarks of PNES is the lack of response to medication. If your seizures have responded to medication, even if just by lessening in frequency or intensity, it is most likely that they are due to epilepsy.

In fact, in my daughter's case, part of the reason that a psychological explanation was suggested was that her simple partials only showed up after a medication INCREASE - up to that point she had only had complex partials that generalized to tonic clonics, although they were always preceded by an aura. So it was quite odd that she suddenly started having a totally new seizure type after a medication increase. We now know that her epilepsy had worsened - prior to that increase she had had 5 t/c seizures within a week - and while the medication was suppressing the spread of the seizure it was not impacting the initial simple partial. Her auras are also a bit unusual, which threw them off as well. But that does not sound like your situation at all!

Next, I did a lot of reading about this, and while I can't quote the specific article, it seems to be extremely unusual for PNES to show up as just auras/simple partials. Another hallmark of psychogenic seizures is that they are generally longer and more dramatic than typical epileptic seizures: t/c seizures that stop and start and go on for 10-20 minutes or longer; complex partials that manifest as 30-minute staring spells; etc. An aura or simple partial can be confused with other things (panic attacks in particular), but it would be a weird way for a conversion disorder to manifest itself.

So if your psychiatrist is saying that these don't look like a psychological reaction to him, he really does have the evidence on his side! I think that your neurologist is frustrated that he is not getting you good enough seizure control, and is grasping at another explanation.

Are they reducing your meds for the test? If they do, are you likely to have complex partials or even tonic-clonics? If so, that should provide a definitive answer.

If you only have simple partials during the EEG, and there is no electrical activity, that does not rule out epilepsy and don't let them tell you it does! This article indicates that only 20% of simple partial seizures are detected by EEG:
http://www.ncbi.nlm.nih.gov/pubmed/3137487
I have seen other articles that have a higher percentage, but at best only 40-50% of them show up. A "positive" EEG can prove that you have epilepsy, but a "negative" one can't prove that you don't.

I know how hard this is! Please try to relax - trust yourself, trust the doctors who know you. Hopefully you will leave with more answers. I wish you all the best.

 

[Cint]

Agh so nervous, I've been battling with depression and anxiety for years so I already know how hard it is to get mental illnesses under control and I'm genuinely scared about having to deal with another one. I don't know why I would be more scared of that than it being epilepsy, but I guess I just can't handle another thing which would make me constantly doubt myself and everything happening around me.

I've been battling with depression and epilepsy for years and they were both difficult for the docs to get under control. At one time I was SOOOOO depressed that I became suicidal. My neuropsychiatrist had me try so many anti-depressants and nothing seemed to be working. Plus the seizures were not controlled at the time. The shrink had even said at one time that a seizure once in a while for me would help alleviate the depression. YIKES! But then, sometimes the seizures I would experience would be really bad and would make me "hallucinate"-- I would hear voices, which would make me more depressed after, thinking I was going out of my mind.

But way back when my seizures did start, they started as simple partial and CPs progressing into TCs. And when I first went in to the drs. back then, they said I was hypoglycemic. That was a terrible mis-diagnosis which only led to so many problems over the years.

So as Kgartner said, don't let the neuro rule out epilepsy just because there may not be any electrical activity during the EEG. As I said in another post, the psychiatrist and neuro need to be working TOGETHER for you.

 

[Kgartner]

The shrink had even said at one time that a seizure once in a while for me would help alleviate the depression. YIKES!

What the heck?!! That is a bizarre thing to say. What is that even based on? Every "big" seizure my daughter has plunges her back into a very dark place.

 

[Cint]

What the heck?!! That is a bizarre thing to say. What is that even based on? Every "big" seizure my daughter has plunges her back into a very dark place.

He was referring to "ECT" for severe depression.

 

[Kgartner]

He was referring to "ECT" for severe depression.

Oh I see! Well, I still think it is a truly bizarre thing to say. While I know that ECT does work for some people with depression, that is a completely different thing than a tonic-clonic seizure that could occur in the shower/at a restaurant/while standing at the top of a flight of stairs etc.! I would be shocked to find that there is any evidence that having regular convulsive seizures helps alleviate depression in people with epilepsy (quite the opposite I think). I sure hope that other doctors haven't gotten this idea into their heads!

Sorry - I'm pulling this off-topic! I hope we've been helpful Jenagade!

 

[Cint]

Oh I see! Well, I still think it is a truly bizarre thing to say. While I know that ECT does work for some people with depression, that is a completely different thing than a tonic-clonic seizure that could occur in the shower/at a restaurant/while standing at the top of a flight of stairs etc.! I would be shocked to find that there is any evidence that having regular convulsive seizures helps alleviate depression in people with epilepsy (quite the opposite I think).

Actually, for some the TCs DO alleviate the depression. Here is a thread from several years ago from other members her on CWE:

http://www.coping-with-epilepsy.com/forums/f23/do-your-seizures-end-depressed-moods-12285/

So unless you've experienced it yourself, how would you know? And the dr. who was treating my depression was a neuropsychiatrist, specializing in epilepsy and the depression that goes with it.

 

[Kgartner]

Actually, for some the TCs DO alleviate the depression. Here is a thread from several years ago from other members her on CWE:

http://www.coping-with-epilepsy.com/forums/f23/do-your-seizures-end-depressed-moods-12285/

So unless you've experienced it yourself, how would you know? And the dr. who was treating my depression was a neuropsychiatrist, specializing in epilepsy and the depression that goes with it.

Fascinating! I stand corrected. The brain is endlessly surprising and amazing. But unfortunately it has exactly the opposite effect on my kid.

 

[jenagade]

Thank you all for your input if nothing else it has calmed me down a bit.

I don't have t/c's but I do have complex partials and simple partials. I've noticed they have been increasing, despite any changes, in the last week or so but that could be due to how much I've been stressing about it lol!

The one thing that both my psychiatrist and I believe might be an argument against PNES is that absolutely none of my coping mechanisms for the depression and anxiety have changed, which if the seizures were a physical manifestation she would have expected those to reduce or disappear completely.

My seizures certainly don't last long, most are 30-60 seconds, and at worst I think they've gone on for a couple of minutes, never as long as 10-20 mins, but I does take me a while to regain the ability to speak after one type of cp's.

I guess another thing that had me worrying, is when I started having different types of seizures and was describing them to my neurologist he straight out said no those aren't the type of seizures you have therefore they aren't seizures. Though given many things he has done/said I am starting to doubt his opinion, so I am glad that I will be seeing two new neurologists this month, one while I am getting the EEG done, and another one who my psychiatrist recommended.

As for the seizures being caused by a different physiological event, my psychiatrist, who freely admitted it was just her speculation, thought that maybe they should explore the possibility that it was a migraine disorder.

I also had a long talk with my fiancé last night and he reassured me, as he seems to have to do on a weekly basis at the moment lol, that regardless of the outcome what is true is that I have been sick and that it has affected my life and nothing I have done, like leaving work, has been for nothing or an overreaction as he would have made me leave work anyway.

 

[Kgartner]

I'm glad our input helped to calm you down a bit. It is a nervewracking procedure to gear up for, no matter what!

When do you go in? Please keep us informed about how things go. Best of luck to you!

 

[jenagade]

Tomorrow eeek! Going to get an early night tonight because I have big issues sleeping with lights on so I will probably be quite exhausted by the end of the week, though that could be a good thing.

 

[Kgartner]

Are they withdrawing your meds?

The whole thing is very stressful - first the waiting for seizures is stressful, and then having seizures is even more stressful - but it was totally worth it. I hope you have as quick and easy a time as possible.

 

[jenagade]

They said they might be. Its weird that I'm hoping I do have a seizure and also one of the ridiculously painful headaches I get on a weekly basis so they can see the seizure and also because it might be a migraine disorder, hence wanting the headache. At least I'll be in a hospital so I can get some awesome pain meds lol.