Jayde, I read your post last night and really empathised with you but I really didn't know what to say. Now I have a better idea of what I would do in your situation. First of all, I must add that I'm not completely anti the idea of psychogenic seizures, and if you do have some psychogenic seizures, then psychiatric and psychological support would be really helpful. HOWEVER:
After a year of seizures, a three week EEG seems, to me, an insufficient reason to declare that you don't have epileptic seizures.
Stuff I'm worried about:
-1) I wrote an article about the inaccuracy of psych diagnoses years ago based on a bunch of studies and what I found out is that --- actually, it's easier to just quote some of the article:
"...misdiagnosis. The same thing frequently happens with other psychological illnesses: Sheldon’s lawyer claimed when commenting about the case that his company “received dozens of cases [annually] where someone is saddled with treatment which is clearly inappropriate for their needs. Unfortunately, once a psychiatrist has formed a diagnosis it can be extremely difficult to get it reviewed.”
It is widely stated by mental health professionals themselves that this situation not only occurs but prevails in psychiatry."
"Patients have been seen to pick up the symptoms of psychological illnesses they don’t have in hospital situations, via research or through communicating with other people with the diagnosed disorder via website forums and chat rooms. This can happen when a patient has another psychological condition and, in search of coping skills for the pain, will copy those around her and learn the comforting effects of negative behaviors associated with other illnesses. Yet despite its devastating consequences, the unreliability of psychiatric diagnosis has been a sore point in the industry for decades. "
"In 1973, sociologist Rosenhan conducted a study in which he sent healthy people to a psychiatric hospital telling them to claim they were hearing a voice say “thud”’ “hollow”’ or “empty”. No other symptoms existed in the ‘patients’. The results were that every one of them was admitted into hospital and all but one was diagnosed as being schizophrenic. The final patient was diagnosed with manic depression. Rosenhan then told another hospital he was going to conduct the same study with their establishment but did not have any pseudo patients asking for admission. The results were that during the following three months 10% of actual patients were suspected by two or more staff members to be healthy individuals. "
"...- since then the DSM IV, which only reinforces III, has been published and mental health care workers are questioning more than ever the emphasis placed on diagnosis and the inaccuracy of the manual itself. (It’s been likened to a Chinese set menu from which one ticks off a certain number of dishes from one section and a certain number from another until you have enough to make up a meal.)
The trouble is that health workers are as liable to fall prey to the weight of first impressions as we are – and studies show that most form a diagnosis mentally within three minutes of meeting a patient, rarely swaying from those first impressions and even known previous diagnoses made by other doctors. Patients who consult psychiatrists with a letter citing a previous doctor’s diagnosis are more likely to be saddled with the previous doctor’s diagnosis along with a second diagnosis made by the new doctor. Many psychiatrists follow their diagnoses with the fifteen minute consultation, where patients simply show face in order to fetch a new prescription whereas, in order to get a large-picture view of the patient, frequent long length consults are required and recommended by the DSM IV. "
I, myself, tend to suffer from psychogenic symptoms a lot and fortunately my epilepsy diagnosis has been confirmed with ambulatory EEG and following EEGs. But I do have a psychiatrist who looks after me and she's explained how my physical symptoms must be taken care of to arrive at a conclusion that they're psychogenic: FIRST I must have all the physical diagnostic tests needed and only if ALL come up negative can we consider psychogenic problems. This must happen every single time there's a suspicion that I might have psychogenic symptoms despite the fact that we know I do have the psychogenic issue.
Since you've been sent to these psych workers under the recommendation of your neuro, you'll presumably be going to all of them with a letter saying that you have psychogenic seizures, which increases the odds that all of those psych workers will saddle you with that diagnosis. It isn't enough for your neuro to have done one three week EEG. I mean, I've done a two week ambulatory that showed no epileptic activity, and I've done a three day one that did, so your one ambulatory is not enough. They must spend far more time on other diagnostic tests to fully rule out epilepsy.
So after all that I've said, the main point I have been trying to get to is that in your position, I would go to another neuro or, better, a new epileptologist, WITHOUT your previous docs' letters and opinions, and request a reassessment to diagnose you with or without epilepsy.
