PNES A difficult conversation worth having

[Zoe]

Sure,

About the only time I see a doctor is to get an eval of some kind like for my spine injury now, then tell them thanks and go figure how to manage without drugs or surgery. I doubt the word healing is in the vocabulary of most docs practicing today. Trust yourself and your perceptions.

 

[AlohaBird]

I figure the more information I can get, the better off I will be. I am going in for the DEXA and MRI scans plus the VEEG this coming Monday.

Regardless of if I "officially" have E.S. or P.N.E.S. I think what I learn will be useful. For instance, if the video shows signs that I have sleep apnea, that is info my neurofeedback person can use to help me.

NFB is helpful on both E.S. and P.N.E.S. so I'm going to be doing that regardless. If my EEG does show any abnormality, I will be able to know more precisely where this is in my brain which could also save my NFB guy a lot of hunting around in the dark.

All my neuro can tell me now is that nocturnal seizures "tend to be" in the frontal lobes and that the partial onset symptoms I sometimes get of arm twitching being exclusively on my left side would "tend to indicate" a right frontal lobe location. It would be nice to know more than what "tends" to be.

 

[Nakamova]

You have to have a seizure during the EEG for it to show up.

This isn't quite right. You don't necessarily have to have a seizure during an EEG in order for it to provide a readout that will help confirm an epilepsy diagnosis. I've never had a seizure during an EEG, but my EEG patterns are ones that have an extremely strong correlation with epilepsy. There are distinctive epileptogenic brainwaves (such as "spike and dome") that can appear between seizures, and indicate that the brain is in a state that is very vulnerable to seizures.

(This doesn't change the fact that the EEG is a test with limitations, that is not always properly used by neurologists. A positive EEG can only help confirm an epilepsy diagnosis, whereas a negative one cannot rule an epilepsy diagnosis out.)

 

[Zoe]

Hope all goes smoothly for you on Monday!

 

[AlohaBird]

This doesn't change the fact that the EEG is a test with limitations, that is not always properly used by neurologists. A positive EEG can only help confirm an epilepsy diagnosis, whereas a negative one cannot rule an epilepsy diagnosis out.

This bears repeating.

Hope all goes smoothly for you on Monday!

Thank you Zoe. I'll send postcards from the hamster cage.

 

[Zoe]

Pictures of you wired for sound and video, or pictures of the hamster?

 

[MichaelJO7]

One of the questions I am trying to answer for myself concerns the limitations of the EEG, and the VEEG. The "results" are still subject to the judgment of the epileptologist/neurologist, which can be all over the place, literally. There must be other variables to consider.

Specifically, if the problem is with the Hippocampus, the Amygdala, or the Thalamus, or even the brain stem, how effective can an EEG be, since these areas are deeper in the brain? There appear to be specific routes that various sensory impulses take. Some, like hearing, go to the cerebellum, and then up the brain, whereas visual stimulation results (eventually) in activity in the back of the brain. Olfactory stimulation seems to take a more direct route, but also involves the limic system. I am also wondering how effective an EEG is in determining if the problem lies in the Corpus Callosum, the part of the brain that relays information from one side of the brain to the other, since information taken in on certain left sensors (sight,sound?, and smell) will appear as activity in the right side of the brain, and vice versa. How can an abnormality in a specifc route be picked up by an EEG?


I am just thinking out loud.

 

[AlohaBird]

It is definitely not definitive in a lot of cases.

Since mine are nocturnal, I'm told that would indicate frontal lobe so I'm hoping the issue will be close enough to the skull to see something one way or the other.

But there again, it is only "indicated" not 100% anything.

Like Nak said, a positive reading can HELP to CONFIRM a diagnosis but a negative reading can not rule anything out.

 

[MichaelJO7]

BTW,as a result of reading this thread, I am more understanding of why doctors do diagnose certain seizures as psychosomatic. The same physiological changes that precede epileptic seizures also take place in many instances for individuals with psychosomatic seizures. The stimulus is different. I still think that the likelihood of having truly psychosomatic seizures is very small.

I do think it was a good idea to revisit this issue.

I am in agreement with Zoe, that the psychogenic diagnosis should be banned, because of the damage such a diagnosis can do to the psyche, in addition to the reasons in her post where she stated this. We should not call people fools, even if they are. It is a curse in a spiritual sense.

 

[Nakamova]

A psychogenic diagnosis isn't the same thing as calling someone a fool. Psychogenic seizures are just as valid as epileptic ones, and people who are experiencing them need healing too. I think the issue is more that some neurologists can be too quick to make such a diagnosis and then roundly dismiss any subsequent concerns or doubts the patient might have about whether the diagnosis is correct. Neurologists who are considering a diagnosis of psychogenic seizures need to be upfront with the patient about the fuzzy nature of such a diagnosis, about the limitations of the EEG, about the possibility that someone could be suffering from both kinds of seizures, and about options if the symptoms persist despite the therapeutic treatments currently offered.

In other words, some neuros need to be better doctors.

 

[AlohaBird]

I don't think the psychogenic diagnosis needs to be banned. If doctors are candid about the inexact nature of the diagnostic process as Nak says, it is not damaging to the psyche to be told you have P.N.E.S. If anything it could be freeing in that it could free you from being medicated for a condition you never did or no longer have.

If you have a really medieval MD who still refers to P.N.E.S. as psychosomatic or pseudo-seizures, then you need to go find a new doc.

I think how the information is presented to the patient is key in this. If there is any implication of "your seizures aren't 'real'" or that you might be faking it or that it's "all in your head", then it could be a traumatic thing to hear. But if it is approached as "we are trying to better understand the root cause of your seizures", then that is helpful.

 

[MichaelJO7]

Twenty years of missed diagnosis, inaccurate diagnosis, of being told it is all in your head when you have muscular dystrophy has nearly destroyed me. That is where I am coming from. I thought that was evident to people who have read some of my posts. I have been near death because of the incompetence of doctors and am being misjudged because I am still alive?

If that were not bad enough, even now that I know what is wrong, I still have endless battles with doctors because my conditions are far too complicated for virtually every doctor. Please connect the dots. If your body fails you, and then your mind is attacked, what do you have left?

Consider the consequences of their incompetence--no income to speak of for over two years. I have lived below the poverty line for over a decade, and I still don't have a place to live. I have three days left in my present house.

God does not break a bruised reed. Don't take out the One who has kept me alive!

Enough!

 

[AlohaBird]

In other words, some neuros need to be better doctors.

Indeed. They also need to be better human beings. They need to treat the person, not just the condition.

I'm so sorry for the things you have suffered, Michael. I know that feeling of being angry, disillusioned, and feeling betrayed that the people in whose care you are supposed to trust your health are sometimes not good at their jobs or even very nice people.

Finding my new neurologist has really shown me that it doesn't have to be that way. I actually trust him. It's a wonderfully calm feeling.