psychogenic question

[julie wishes]

Can anyone share with me what happens after being diagnosed with psychogenic seizures?

Do they change your meds?
Do you still see a neurologist?
Do they try to help you figure out why you might have a psychogenic seizure?
Do they treat you differently?
Etc.

Do you feel differently about your seizures or even believe the diagnosis?
Are you afraid to go off meds?
If you have gone off meds, does your seizure activity change in anyway?
Do psychiatrists, counseling, or anti anxiety meds help the psychogenic seizures go away?
If they don't go away with these interventions, then do they go back and call them "real" seizures?

I've read a little about this subject, and I find I have very mixed feelings on it. In my humble opinion, I wonder if the EEG is not adequate for all seizures and I wonder why neurologists rely so heavily on the EEG rather than patient's report of symptoms. And its so subjective. One neurologists reads the EEG one way and the next says they disagree, stop all meds, and order a psychiatric consult. I want to believe in psychogenic seizures, but I'm finding it hard.

What do you all think? Does this diagnosis make sense? Anyone have a positive spin on it?

 

[Silat]

That's more than one question, hun...

Personal opinion: I think a lot of psychogenic seizures are actual seizures that just aren't picked up on an EEG due to their location. Some places are very hard to catch seizure activity from on an EEG, the technology isn't perfect, and as you mentioned the results are subjective.

That said, I do believe there is one case in particular where they could happen. That would be from trauma that's stored in muscle memory.
You can read more on that here: http://www.coping-with-epilepsy.com/forums/f22/emotional-trauma-stored-body-520/
In that case, the seizures, if they're caused by that, wouldn't be epileptic in nature, and would rather be muscle memory from a trauma trying to release itself. Because it can't, and your body/mind are essentially in conflict because it can't, a psychogenic seizure could be induced... Also, if that's the case, a neuropsychiatrist would be the best answer, as medicine wouldn't help nearly as much as working through and releasing that trauma. Do keep in mind, I think that's a very rare situation, and it doesn't apply to most cases.

Epilepsy is a diagnosis based on symptoms, and the symptoms vary widely and are open to interpretation.... that can lead to a quick diagnosis for some, and an long painful journey for others, because of how their doctors may operate. One may rely purely on test evidence, another may rely more on symptoms than the actual results, it depends on the doctor and their style of treatment.

Just my :twocents:
I personally have epileptic seizures, so I don't have any personal experience with P.N.E.S... so I can't comment on that part of this.

 

[julie wishes]

I definitely believe in the power of the mind, and psychiatric disease processes. I was wondering how the neurologists typically manage these situations. I also wonder if the neurologists handled these situations more delicately, if maybe we wouldn't feel so rotten about them. But the stories we see posted here sound so heartbreaking, and very devastating to the person going through it. So I thought if I heard first hand what actually happens to these types of cases, I might understand the whole topic better.

 

[pita300]

I am living with this now. I do still see an epileptolgist and I am still on Tegretol. Have been since I was 18. I did a video eeg in early June. I have read that the doctors use the video eeg to decide if seizure are caused by abnormal brain activity or if they may be psynogenic. Although my eeg is abnormal showing activity on the left and the right when i'd have a seizure it would not show on the eeg. I also am seeing a therapist and a neuropsychiatrist. The therapist is helping me deal with stress and the Neuropsychiatrist monitors the meds and tries to dig deaper to unleash the trama that does'nt exist. I was not abused by my parents in any way or can I think of any other trama that would be causing this. The epileptolgist is very cautious (I think that is the best word for this) when we discuss my seizures. Neither doctor has given me the PNES diagnosis and I have read that it may take years before I finally get that diagnosis. I hope that answers most of those questions!

 

[Nakamova]

If the seizures are considered to be psychogenic by the neurologist (and there are no co-occurring epileptic seizures), he/she hands the patient off to a psychologist and/or psychiatrist. Depending on the health care setting, the patient may or may not be weaned off any anti-seizure medications. Ideally, the patient would have a follow-up visit with the neurologist to make sure psychiatric treatment was implemented, and to see if it was effective. Ideally.

The psych doctor will try and discover why the events are occurring, and tailor treatment appropriately. Generally, treatment takes the form of talk therapy and or CBT, rather than medication, though meds might also be prescribed for anxiety or depression if those are present.

Unfortunately, PNES isn't well-understood (and as mentioned above, may well be epilepsy that can't be registered on an EEG), so not many psych doctors are familiar with it and treatment isn't standardized. One study that did a follow-up of 164 patients diagnosed with PNES found that 70% continued to have seizures. Given that statistic, and the limitations of EEGs, I tend to think that PNES is way over-diagnosed. Those who are labeled with it can end up in limbo, deprived of access to treatments that may help them.

 

[LJ-Bain]

Juliewishes....
I am so sorry for anyone who receives this diagnosis. Especially because it is not always correct but if you don't believe in it or pretend to they label you as uncooperative.

Positive spin...these seizures are not damaging to your brain.
There are some cases that have a better prognosis than others. For instance, if you do not lose consciousness, bite your tongue, injure yourself, have incontinence, are a woman, are independent, do not have a traumatic history, are not of a low socioeconomic status then these things are apparently good things I have heard. Also, if they reach this diagnosis very quickly rather than years later it bodes well for you.
Neurologists with a good bedside manner handle things pretty well but there are some neurologists who believe you are a waste of their time and can get downright rude as they pass you off to a pscyhiatrist.
These seizures have a severe impact on one's life.
Doctors like to be able to fix things and psychogenic seizures are something that are hard to fix.
Some people call them dissociative seizures. Separate from reality and the seizures become like a coping mechanism. In this case they actually form a way out for a person and they become like a crutch.

If they are epileptic seizures then someday it will become obvious and hopefully not in a harmful way.
If they are epileptic seizures then seeing a psychiatrist just to deal with the darn things is not a bad idea.

Keep an open mind. I try to.
I am willing to accept that diagnosis for me but then things happen like this morning I woke up with a bruise on my chin and I don't have any memory of this being there yesterday or hurting myself.

Psychogenic seizures do not get a lot of medical compassion or sympathy in e.r. rooms or hospitals and you are forced to find ways to get along in life. Hold on tight to those you love! Find joy in life where you can!
If you're looking for a way to get strong these will make you stronger although it is quite a ride.

Do they treat you differently? Unfortunately and unequivocally, yes.
They will try to wean you off of AED's if they can.
Hopefully they will try to figure out why you get them. There isn't always a reason. If you have a traumatic history, are depressed or anxious they will try to help you develop cognitive behavioural adaptive techniques.

You can always private message me if you like!

 

[momof3boys]

Personal opinion: I think a lot of psychogenic seizures are actual seizures that just aren't picked up on an EEG due to their location. Some places are very hard to catch seizure activity from on an EEG, the technology isn't perfect, and as you mentioned the results are.

I agree.

I had my VEEG done last year and my neurologist thought the same thing. Just because he saw me having seizures on the video, but they were not showing up on the EEG, he referred me to a psych dr. After appointments with her, she told me straight out, not all EEGS will pick up all seizure activity. Especially when its deep within the brain. Since I was cold turkey'd off all medications prior to the VEEG, then put back on one of the seizure medications, the seizures then stopped. She said if they were not epileptic seizures, anti seizure medications would not stop the non epileptic seizures. because I had no seizures in the months after the VEEG and being put back on Keppra, she said in her opinion, they were not non epileptic seizures that I had during the VEEG. So I do agree, not all drs are right when they say its non epileptic seizures that are occuring.

 

[Nakamova]

I found this study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873639/ pretty interesting. It presented independent neurologists/epileptologists with vEEG from 22 patients. Based on those vEEGs, the docs had to make a diagnosis of: 1) P.N.E.S., 2) epilepsy, and 3) nonepileptic but not psychogenic (“physiologic”) events. The results showed that the reliability/consistency of making a diagnosis of P.N.E.S. by EEG-video monitoring was only moderate. In other words, while vEEG is treated as the gold standard by many docs for diagnosing P.N.E.S., in practice its interpretation is subjective and varies significantly from one rater to another.

Among other things, the article also said (bold emphasis mine):

...Scenarios in which the significance of a video-EEG change may not be readily apparent make correctly diagnosing epilepsy versus P.N.E.S. difficult. In particular, it can be difficult to discriminate between P.N.E.S. and simple partial seizures, because only approximately 20% of patients have an EEG accompaniment, and complex partial seizures arise from deep convexities within the frontal lobe, making them difficult to record on scalp electrodes.

and in its summary:

There is no one clinical factor, whether video-EEG, history, or an examination, that is going to 100% accurately identify a patient with a given diagnosis. This study ...underscores the fact that video monitoring of a single event cannot be utilized in isolation, without also evaluating the clinical history and other records. Doing so, is akin to judging a book by its cover and not by reading what is inside.

I think folks who feel wrongly-diagnosed should print out the article and present it to their neurologists.

 

[LJ-Bain]

It never hurts to get another opinion! Maybe another neurologist would see your case differently.

 

[momof3boys]

I found this study http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2873639/ pretty interesting. It presented independent neurologists/epileptologists with vEEG from 22 patients. Based on those vEEGs, the docs had to make a diagnosis of: 1) P.N.E.S., 2) epilepsy, and 3) nonepileptic but not psychogenic (“physiologic”) events. The results showed that the reliability/consistency of making a diagnosis of P.N.E.S. by EEG-video monitoring was only moderate. In other words, while vEEG is treated as the gold standard by many docs for diagnosing P.N.E.S., in practice its interpretation is subjective and varies significantly from one rater to another.

Among other things, the article also said (bold emphasis mine):


and in its summary:


I think folks who feel wrongly-diagnosed should print out the article and present it to their neurologists.

I would love to find this book and get it!
I looked on Amazon.com and cant seem to locate which book it is.

Could it be this book?

[ame="http://www.amazon.com/Atlas-Video-EEG-Monitoring-Joseph-Sirven/dp/0071597425/ref=sr_1_2?s=books&ie=UTF8&qid=1342754021&sr=1-2&keywords=Joseph+I+Sirven%2C+MD"]Amazon.com: Atlas of Video-EEG Monitoring (9780071597425): Joseph Sirven, John Stern: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51tJ1eTlwHL.@@AMEPARAM@@51tJ1eTlwHL[/ame]

 

[julie wishes]

Excellent information. Thank you all for sharing. Thanks for the article Nakamova. Very interesting. I loved the line about the "art of medicine". Isn't that a good way to put it.

I look forward to more responses about this topic.

 

[Maidenminx]

I was just told today that I am having psychogenic seizures. I have been told to see a psychiatrist and keep in regular contact with my GP. I am to stay on my meds. He is glad I now have access to valium to cease my seizures when they hit a certain point.

From the little I have read about how many females with PNES have experienced traumas in their life I find it fits for me. I'm not to worried about not being taken seriously because when I seize, I seize and it's obvious. I'm not being told I'm not having seizures, I'm just being told I have no epileptic symptoms. When I got upset with the diagnosis, saying I hate the idea of that diagnosis because I didn't want to be treated like a ... faker I guess. He told me I have a definite seizure disorder and that is the term I will be using when I have to go to the hospital.

I don't know if there was any remotely information in there, but I am seriously needing to vent for a bit.

 

[julie wishes]

This is actually very helpful. See how the wording is so important. The way your doctor handled this is very comforting. It doesn't take away what you are actually experiencing. He gave you the proper words or terms to use when you need them. He gave you a plan of attack. He has you medicated and with back up meds if needed. Thank you for sharing this. I wish all doctors handled it this well.

As far as how you are handling this new information... well, it can't be easy. Either diagnosis is bad really. E, non-E, either way, shit to deal with. At least you can see how non-E relates to your specific case. It doesn't mean you are any different today than you were yesterday. Your experiences were validated by a doctor who thankfully handled your diagnosis with grace and concern. You have a plan to move forward and tackle this thing and just maybe you get to walk away from it someday.

Wouldn't that be a life changer

I believe it would be very helpful to many people if all members diagnosed with PNES continued their threads and kept us informed about their journeys. Human experience is a valuable resource. It's biased as heck... but also as real as it gets

 

[MuayThaiFighter]

Everyone on here really hit so many good points. The fact always remains. Regardless of the seizures, regardless of the diagnosis, or the doctors and the laundry list of BS we all have to put up with. This has many painful moments. Unique for us all but still so familiar.

"I believe it would be very helpful to many people if all members diagnosed with psychogenic non-epileptic seizures continued their threads and kept us informed about their journeys. Human experience is a valuable resource. It's biased as heck... but also as real as it gets"

I could not agree more! You are all people who are tougher then anyone I know as well.