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Unusual Spells and Diagnostic Woes

Thu, 07/25/2013 - 20:17
Hi, I am new to this community, and going through some diagnosis woes. For some time now, I have been having unusual spells that involve staring, deja vu/depersonalized type symptoms, complex vision-like episodes, loss of awareness and visual reality, and eventually some odd psychosis symptoms that resolve themselves rather quickly. I am not a drug user, and I have seen psychiatrists who tell me that I do not fit the pattern of a psychiatric illness. One psychiatrist recently suggested that I may have a partial seizure disorder (in fact diagnosing me with this illness), and then sent me to a neurologist. I just got back from my appointment with the neurologist today, and I must say that I was rather less than satisfied with the appointment. I have had an EEG done before, and I had one of my spells during the flashing lights portion of the test (and the same cycle of odd psych type symptoms that resolve themselves quickly). The neurologist resident that I saw today was rude and disrespectful, rude to a family member I brought with me to the appointment, accused me of acting up during my illness, and laughed at me while his boss did a neurological exam. He walked in to see me, didn't shake my hand or look me in the eye, sat at his computer, and finally grunted at me saying, "So did you have another odd spell?" His boss was the absolute opposite of his behavior. I must mention that I was in the hospital in April, and the doctor's there had assured my family that they had an answer as to why I was having my spells (they were not psychiatric in origin). One family members swears that a neurologist told her this. The resident I saw today said, that must have been a mistake and that the psychiatrists don't know their jobs, or something like that. He said the EEG was normal, yet the psychiatrists said it was not. He referred me for a long test, where they are going to take me off of my anti-seizure meds, and do an EEG while I stay in the epilepsy monitoring unit. I was also referred to Cleveland Clinic by one of the psychiatrists to see a specialist in epilepsy there. I am unsure as to what I should do? I am a rational person, working on a degree in computer science and marketing. I do not have a lot of unusual ideas, and I can always tell that the hallucinations are not real (in fact the ones that I have are things from my memory, things people have said to me that sound distorted and strange, or pictures I have seen of the BVM or Jesus). I do not have psychosis all the time, in fact only after a spell. As I said above, the weird psychosis symptoms resolve themselves on their own or with very little medicine within a few days. The resident said that if I was hallucinating with epilepsy, I would hear a train-like noise, not hear voices or see flashing lights. It is hard for me to accept that I have a psychotic illness, and I am just plain confused. Thank-you for taking the time to read this, I know it was long. Just wanted to get some knowledge from this community on my difficulties with diagnosis. Regards, Caleb

Comments

Re: Unusual Spells and Diagnostic Woes

Submitted by pgd on Fri, 2013-07-26 - 11:22
It may be helpful for you to read the following educational books aboutw neurology: Nerves in Collision book by Walter C. Alvarez, M.D. and the How To Cure Hyperactivity book (1981) about Inattentive ADHD/Auditory Processing by C. Thomas Wild, introduction by Anita Uhl Brothers, M.D. The EEG is used today (2013) both for Epilepsy and ADHD (new 2013 EEG ADHD Cap Test). Also, you might look at the topic of Photosensitive Epilepsy here and at Wikipedia. Read the Alvarez book first, the Wild book second. Best wishes.

Re: Unusual Spells and Diagnostic Woes

Submitted by just_joe on Fri, 2013-07-26 - 12:05

What your doctor is doing when he puts you in the monitoring unit is gathering more information. If it is like my neuro did then you will be watched carefully. They will be running a constant EEG.  In that unit they will see any and all seizure activity. BY taking you off your meds they can see more activity. Your meds stop electrical impulses hitting the brain wrong. Those impulses cause a chain reaction which is the seizure. When I was in it they also did an MRI. In the EEG's that show activity the neuro will be able to locate where in the brain the impulses came from. He can then go to the MRI and see what's going on there and if there is anything wrong in that area.

I had been told my seizures were due to scared brain tissue in my lower left lobe which could have happened before or after birth. That inso was given to us back in 1963. with the monitoring unit my neuro said it wasn't the lower left lobe but more to the middle of the left side of my brain. He saw the scar tissue and he said it was caused by a hemmorage to the brain which should have knocked me out. So technology has gotten better and they are finding out more with every thing that comes out.

Generally the monitoring unit is in the hospital and if they see a problem they will handle it there. In mine I notified the people in the unit when I had a seizure so they could mark the EEG area.

I understand your questions and all I can say is relax some. The doctors are wanting to gather more information so they can determine what is causing your episodes. the more information they have the better their chances are to get you seizure free.

Understand too that many things can precipatate seizures. Heat does with me and I know stress can too.

What you might do is get the diary near the top of this page and use it. Any information you put in it can be helpful to the doctors. the diary can be lownloaded and taked to your visit or even sent to them.

 I hope I helped you and hope they gather the information needed.

Good luck

What your doctor is doing when he puts you in the monitoring unit is gathering more information. If it is like my neuro did then you will be watched carefully. They will be running a constant EEG.  In that unit they will see any and all seizure activity. BY taking you off your meds they can see more activity. Your meds stop electrical impulses hitting the brain wrong. Those impulses cause a chain reaction which is the seizure. When I was in it they also did an MRI. In the EEG's that show activity the neuro will be able to locate where in the brain the impulses came from. He can then go to the MRI and see what's going on there and if there is anything wrong in that area.

I had been told my seizures were due to scared brain tissue in my lower left lobe which could have happened before or after birth. That inso was given to us back in 1963. with the monitoring unit my neuro said it wasn't the lower left lobe but more to the middle of the left side of my brain. He saw the scar tissue and he said it was caused by a hemmorage to the brain which should have knocked me out. So technology has gotten better and they are finding out more with every thing that comes out.

Generally the monitoring unit is in the hospital and if they see a problem they will handle it there. In mine I notified the people in the unit when I had a seizure so they could mark the EEG area.

I understand your questions and all I can say is relax some. The doctors are wanting to gather more information so they can determine what is causing your episodes. the more information they have the better their chances are to get you seizure free.

Understand too that many things can precipatate seizures. Heat does with me and I know stress can too.

What you might do is get the diary near the top of this page and use it. Any information you put in it can be helpful to the doctors. the diary can be lownloaded and taked to your visit or even sent to them.

 I hope I helped you and hope they gather the information needed.

Good luck

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