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I've been trying to figure out what these things are for 17 years. It started when I was 7, when I told my mom that things around me didn't seem real, and that I wasn't real. My parents, both being epileptic decided to take me to a neurologist, who did an EEG and found abnormal activity. He said I'd grow out of it.

 

For several years this continued, and this is about the time now I was diagnosed with depression. Subsequent visits to the neurologist (a different one) resulted in them basically saying it was all psychiatric...despite repeated abnormal EEGs.

 

This was hard to diagnose. It took a 5 day 24-hour video EEG test to find out what was wrong with me this summer. I don't have convulsions. I have sense of jamais vu, weird feeling in my stomach, and an altered state of consciousness (I am partially there, but may not respond fully). They found the focus of this activity in my temporal lobe. I'm getting an MRI soon as well. 

 

Anyone else have this type of seizure? I hate that I was written off as being psychotic or having a dissociative disorder for so many years. Even though I have a clear psychiatric disorder, I also have a non-psychiatric explanation for some of my symptoms. Glad it's sorted out now.

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For several years this continued, and this is about the time now I was diagnosed with depression. Subsequent visits to the neurologist (a different one) resulted in them basically saying it was all psychiatric...despite repeated abnormal EEGs.

 

This was hard to diagnose. It took a 5 day 24-hour video EEG test to find out what was wrong with me this summer. I don't have convulsions. I have sense of jamais vu, weird feeling in my stomach, and an altered state of consciousness (I am partially there, but may not respond fully). They found the focus of this activity in my temporal lobe. I'm getting an MRI soon as well. 

 

Anyone else have this type of seizure? I hate that I was written off as being psychotic or having a dissociative disorder for so many years. Even though I have a clear psychiatric disorder, I also have a non-psychiatric explanation for some of my symptoms. Glad it's sorted out now.

 

Yes! I know exactly what you mean; I have been down this same road (and am still on this road).

 

I had staring spells as a child, to which was a running joke with my family of how "inattentive" and "ditsy" I was (you could never get my attention during, and after I would forget what I was doing/saying); but those went away when I got to about 10 or 11. But when I was about 14 I started having the same 'spells' as you describe - I didn't recognize the things around me but they looked 'familiar', I had a rising sense in my stomach, I felt disconnected, a weird sense of fear/restlessness, which would go on for a minute or so (but rarely lose/alter consciousness).

 

The mistake is the first (and ONLY) doctor I was taken to was a child Psychiatrist and no one else (not even for a second opinion). I was, in fact, dealing with a lot of anxiety and some depression. However there was also something else going on. Instead, my first diagnosis ever was Schizoaffective Disorder/Depressive Type, and Medicated me with AAPs and SSRIs.

 

It wasn't until I was an official adult (19, and still wasn't convinced) and started having Chronic Migraines with Aura and saw a Neurologist on my own, that I found out I was also having Simple Partial Seizures. However at first they were diagnosed as 'pseudo' (automatically, without any EEG testing) because of the Child Psychiatrists diagnosis. I kind of "gave up" getting help at that point because of the Pseudo Diagnosis, because zero help was offered for them.

 

However, at age 24, and after being off all Psychiatric medications for 3 1/2 years and all psychological symptoms stable - I saw a new Neurologist because the Seizures progressed to full blackouts with automatism's (I started wandering, and rummaging through stuff when unconscious), and I started having major (and obvious) motor symptoms and jerking at times. This Neurologist actually did testing and encouraged it was, indeed, actual Epileptic Seizures (now it's just figuring out where because my EEG is not clear enough, although he thinks it's most likely TLE).

 

I also hate that it was shrugged off as Psychological because of stigma. Because many people with TLE have problems with Depression and Anxiety, and those issues (or any MI symptoms) shouldn't exclude a person from receiving adequate treatment from a Neurologist. Especially because some of the medications that were used to treat my "psychosis" actually exacerbated my seizure symptoms, which counteracted my care even more considering my seizure symptoms were diagnosed as psychotic symptoms. It was a never ending circle of ignorance and stigma that just made me (the patient) worse because I wasn't listened to.

 

And now that the Seizures have been identified, my psychological issues are a bit easier to identify as well. And medicating everything makes a lot more sense and there is a lot less counteraction.

Edited by Sloane
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TLE is one good way to fuck with your brain and get very confused. It seems like anything might happen. I am talking second hand, my husband is the one with epilepsy. My husband's usually generalize, and he goes into tonic-clonic.

 

But his auras are similar to your seizures (and auras *are* seizures, they just sometimes can warn you of worse to come).

 

If they found evidence on your VEEG, that is pretty valid. Any neurologist that dismisses that evidence is an asshole.

 

What if you ask your pdoc for a reference to a neurologist? She is more likely to refer you to one that doesn't think all seizures are psychological just because you are MI.

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What if you ask your pdoc for a reference to a neurologist? She is more likely to refer you to one that doesn't think all seizures are psychological just because you are MI.

 

The neurologist who wrote me off as being just crazy was the pediatric neurologist I saw over 15 years ago. My current one is excellent.  ^_^

 

 

I also hate that it was shrugged off as Psychological because of stigma. Because many people with TLE have problems with Depression and Anxiety, and those issues (or any MI symptoms) shouldn't exclude a person from receiving adequate treatment from a Neurologist. Especially because some of the medications that were used to treat my "psychosis" actually exacerbated my seizure symptoms, which counteracted my care even more considering my seizure symptoms were diagnosed as psychotic symptoms. It was a never ending circle of ignorance and stigma that just made me (the patient) worse because I wasn't listened to.

 

And now that the Seizures have been identified, my psychological issues are a bit easier to identify as well. And medicating everything makes a lot more sense and there is a lot less counteraction.

 

Yeah I read that TLE actually goes hand in hand with affective disorders. While not the majority, a significant number of people with TLE also have some sort of MI. I agree that now that these are identified as seizures, my neurologist/psychiatrist can work as a team and consult on meds. For example, my psychiatrist wants me on an antidepressant, but not an SSRI because none have worked for me. She prefers Wellbutrin for patients prone to mania because it is the least likely (in her opinion) to cause a swing. She wouldn't do it until my neurologist cleared the idea because Wellbutrin can lower seizure threshold.

 

I love that my doctors actually work together on things. Makes my life easier. 

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