Matthew74
Stalwart
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I have read many posts here, and on Epilepsy.com, written by old and new patients complaining that they are having seizures and are not being treated, because they have been diagnosed with psychogenic seizures (variously called "pseudo seizures", "non epileptic seizures", "non epileptic psychogenic seizures", etc.). In some cases the patients had even been on medication that worked, and were taken off, and in other cases medication had never been tried. Supposedly psychogenic seizures are not caused by misfiring in the brain, although some change in brain function is observable by FMRI.
I do believe that there are psychogenic seizures. However, there are several things that bother me about the whole thing. The first is the supposed prevalence. Most things I skim through claim that 20% of patients with intractable seizures have psychogenic seizures. That means that 1 out of 5 people with intractable epilepsy have psychogenic seizures. http://epilepsy.med.nyu.edu/epilepsy/psychogen-non-epilepic-seizures They also claim that 20-40% of inpatients have psychogenic seizures. 40% is of course 4 out of 10, or nearly half. http://www.aafp.org/afp/2005/0901/p849.html
That seems like a lot.
The other thing that bothers me about it is that EEGs, which are used to detect misfiring, are just not that accurate. Up to 50% of first EEGs are normal in people with confirmed epilepsy, and even with ambulatory or VEEG still 20% are normal. That means that it's only 50% accurate on the first try, and only 80% accurate with prolonged testing. http://jnnp.bmj.com/content/76/suppl_2/ii2.full That would seem to mean that 20%, or 1 out of 5 people with confirmed epilepsy have normal EEGs. The inadequacy of EEGs is of course why they have to cut your dome open and put the electrodes directly on your brain when they need to know exactly where the seizures start.
Another way to test whether someone has epilepsy or non epileptic psychogenic seizures might be drugs. In other words, you might think that if you give them pills and the seizures go away, they have epilepsy. If the seizures are unaffected they are psychogenic. The problem is that the drugs, while they are great in some ways, just don't work that well. Apparently as many as 1 out of 3 people with epilepsy become refractory. http://www.hopkinsmedicine.org/heal...s_system_disorders/refractory_epilepsy_135,5/
So, it seems to me that neither EEGs, nor the effectiveness of the drugs are that great. And if that is so, it doesn't make sense to assert that nearly half the people in the epilepsy ward have psychogenic seizures, merely because you can't detect epileptic seizures with a bunch of wires stuck to their head. The EEG won't tell you definitively, and the effectiveness of the drugs won't tell you definitively.
The only thing left is the way the seizures look, and the psychological profile of the patient. From what I have read there are some observable signs of psychogenic seizures, but it's not always that clear. And, just because someone may have a reason to have psychogenic seizures doesn't mean they do. It certainly doesn't prove they don't have epilepsy. I have even read some interesting statistics about supposedly high percentages of patients who are supposed to have BOTH epileptic and non-epileptic psychogenic seizures. Maybe they do.
My concern is that there seem to be a lot of people out there having seizures who are being told that they don't have epilepsy. Everyone should obviously get the care they need, and be told the truth.
However, my personal experience, and I think the experience of many of us is that doctors miss a lot. FYI: I have never been told that I have psychogenic seizures, nor has it ever been suggested, but I have wondered if this would be the case if they had never found my brain tumor. My EEGs are all normal or borderline normal. I don't have any glaring trauma, but that of course could have been "suppressed". At one point a prominent epileptologist told me flat out that she would not treat me for my "auras" or tiny simple partials because they didn't show up on EEG, even though meds have a clear effect on them, and they are clearly related to bigger seizures. I don't know what she thought, but apparently she didn't believe they were seizures. So, I'm wondering how many people out there are really having epileptic seizures, but are told they have psychogenic seizures.
My personal concern is of course that people should be able to get the right treatment, whatever that is.
I am also concerned that epilepsy is poorly understood, and that a lot of doctors may be taking the easy way out. Instead of admitting they just don't know what to do, they call a large number of cases "psychogenic" to write them off, and essentially blame it on the patient (not that it's really their fault of course). Basically the issue is that if you are going to diagnose with psychogenic seizures you had better have a reason FOR diagnosing them as psychogenic, a good reason. It's not enough to diagnose them with psychogenic seizures because you can't figure out why they have epilepsy, because they have unusual seizures, or because they have experienced some trauma in their life. I mean, I would think that you would at least give meds a try and see if they work. If they do, problem solved. If not, consider other possibilities. I don't see why it should take two years to try the meds. Six months or a year should tell if one, or even two different meds can help. Have them see a therapist at the same time. How much can it hurt to do both?
:soap:
I do believe that there are psychogenic seizures. However, there are several things that bother me about the whole thing. The first is the supposed prevalence. Most things I skim through claim that 20% of patients with intractable seizures have psychogenic seizures. That means that 1 out of 5 people with intractable epilepsy have psychogenic seizures. http://epilepsy.med.nyu.edu/epilepsy/psychogen-non-epilepic-seizures They also claim that 20-40% of inpatients have psychogenic seizures. 40% is of course 4 out of 10, or nearly half. http://www.aafp.org/afp/2005/0901/p849.html
That seems like a lot.
The other thing that bothers me about it is that EEGs, which are used to detect misfiring, are just not that accurate. Up to 50% of first EEGs are normal in people with confirmed epilepsy, and even with ambulatory or VEEG still 20% are normal. That means that it's only 50% accurate on the first try, and only 80% accurate with prolonged testing. http://jnnp.bmj.com/content/76/suppl_2/ii2.full That would seem to mean that 20%, or 1 out of 5 people with confirmed epilepsy have normal EEGs. The inadequacy of EEGs is of course why they have to cut your dome open and put the electrodes directly on your brain when they need to know exactly where the seizures start.
Another way to test whether someone has epilepsy or non epileptic psychogenic seizures might be drugs. In other words, you might think that if you give them pills and the seizures go away, they have epilepsy. If the seizures are unaffected they are psychogenic. The problem is that the drugs, while they are great in some ways, just don't work that well. Apparently as many as 1 out of 3 people with epilepsy become refractory. http://www.hopkinsmedicine.org/heal...s_system_disorders/refractory_epilepsy_135,5/
So, it seems to me that neither EEGs, nor the effectiveness of the drugs are that great. And if that is so, it doesn't make sense to assert that nearly half the people in the epilepsy ward have psychogenic seizures, merely because you can't detect epileptic seizures with a bunch of wires stuck to their head. The EEG won't tell you definitively, and the effectiveness of the drugs won't tell you definitively.
The only thing left is the way the seizures look, and the psychological profile of the patient. From what I have read there are some observable signs of psychogenic seizures, but it's not always that clear. And, just because someone may have a reason to have psychogenic seizures doesn't mean they do. It certainly doesn't prove they don't have epilepsy. I have even read some interesting statistics about supposedly high percentages of patients who are supposed to have BOTH epileptic and non-epileptic psychogenic seizures. Maybe they do.
My concern is that there seem to be a lot of people out there having seizures who are being told that they don't have epilepsy. Everyone should obviously get the care they need, and be told the truth.
However, my personal experience, and I think the experience of many of us is that doctors miss a lot. FYI: I have never been told that I have psychogenic seizures, nor has it ever been suggested, but I have wondered if this would be the case if they had never found my brain tumor. My EEGs are all normal or borderline normal. I don't have any glaring trauma, but that of course could have been "suppressed". At one point a prominent epileptologist told me flat out that she would not treat me for my "auras" or tiny simple partials because they didn't show up on EEG, even though meds have a clear effect on them, and they are clearly related to bigger seizures. I don't know what she thought, but apparently she didn't believe they were seizures. So, I'm wondering how many people out there are really having epileptic seizures, but are told they have psychogenic seizures.
My personal concern is of course that people should be able to get the right treatment, whatever that is.
I am also concerned that epilepsy is poorly understood, and that a lot of doctors may be taking the easy way out. Instead of admitting they just don't know what to do, they call a large number of cases "psychogenic" to write them off, and essentially blame it on the patient (not that it's really their fault of course). Basically the issue is that if you are going to diagnose with psychogenic seizures you had better have a reason FOR diagnosing them as psychogenic, a good reason. It's not enough to diagnose them with psychogenic seizures because you can't figure out why they have epilepsy, because they have unusual seizures, or because they have experienced some trauma in their life. I mean, I would think that you would at least give meds a try and see if they work. If they do, problem solved. If not, consider other possibilities. I don't see why it should take two years to try the meds. Six months or a year should tell if one, or even two different meds can help. Have them see a therapist at the same time. How much can it hurt to do both?
:soap:
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