I'm new and need some direction ..

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Hello All, Long story short - I have been diagnosed with Panic Disorder, Agoraphobia and Dissociative disorder for around 7 years. At the beginning of the year I had a seizure and some tests where run. EEG came back with irregular results (apparently very similar to someone who has Epilepsy). I don't think the Neurologist I am seeing is very good, as he has completely dismissed my results having anything to do with a misdiagnosis of the Dissociative disorders. From what I have since read I have reason to believe I might have some form of Temporal Lobe Epilepsy as the symptoms are SO close, and there is the evidence from the EEG. I'm going to see a new Neurologist next week, and I am very excited to hopefully receive some proper treatment. As I do feel I am heading in the right direction .. finally! Has anyone been in the same situation as me? With my symptoms and EEG results, I'm not out of my league to suspect such a diagnosis? I would love to hear from anyone that had some advise or words or wisdom regarding my situation. Ta.

Comments

Re: I'm new and need some direction ..

Submitted by wldhrt13 on Wed, 2006-10-04 - 10:43

My situation is pretty much identical to yours. I was first diagnosed at age 15 with "Panic Attacks" and dissociative episodes where I would hover close to my body and watch myself performing various functions...very strange and scary indeed. I was consequently labeled as suffering from anxiety disorders; even though I presented with syncope, olefactory hallucinations, frequent deja-vu, PVC's, and facial tics. I was placed on benzodiazapines at age 16 (which ironically are anti-convulsant medications) first Xanax, then Klonopin, then finally Diazepam. I was told by my counselor that I had to learn to just tolerate the outer body stuff and eventually ignore it. I experienced moderate success with psychotherapy and "ignoring" my symptoms. However, I still continued to have these symptoms/episodes despite being on the benzodiazepines. My general internist noted in my chart that he suspected TLE. He sent me to a neurologist in Boston a Dr. Khoshbin. He did a sleep deprived EEG which was normal. Khoshbin recommended discontinuing the benzodiazepines because he felt it could interfere with the expression of the illness (he also suspected TLE). He recommended further study and to "monitor this patient closely" that if the sleep deprived EEG was WNL to discontinue the medsication and obtain another EEG. He also recommended an MRI. As my bad luck would have it, none of his recommendations were followed through because I ended up in a psychiatric hospital for treatment of Anorexia Nervosa. From hospital, I was consequently milled into the mental health system. 20 years passed. Eventually, my doctor weaned me off the benzodiazepines because I wanted to conceive a child. During my pregnancy all my symptoms worsened. I had what they call a (TIA) Trans-Ischemic Attack or mini-stroke. That's how I ended up in a neurologist's office lasy year. I gave her my complete history and dug up my medical records from my teens. Astonishingly, my internist and that Dr. Khoshbin weren't the only ones who suspected TLE. The attending psychiatrist from my hospitalizaion for Anorexia had noted this suspicion as well. He paid particular attention to the episodes of "micropsia" and olefactory hallucinations I had been experiencing. I am now 36 years old, I asked my current neurologist at Lahey Clinic (who initially saw me for the TIA, if she would pick up the ball that was dropped 20 years ago by the mental health professionals. She ordered the sleep deprived EEG. It came back with mildly abnormal. She ordered an ambulatory 72 hour EEG scheduled for later this month. She is ruling out TLE as the primary Diagnosis. She said that if that is abnormal she will be putting me on Tegretol. I would definitely ask for a second opinion if you feel this neurologist is dropping the ball. Don't wait and experience 20 years of suffering like I did. I was just a kid then and my parents implicitly trusted the judgement of the medical (and psychological) professionals. I'm pretty sure that anxiety is a differential Diagnosis for TLE: http://www.mhaspectsofdd.com/abstracts/Vol7Num4/2.htm good luck!

Re: Re: I'm new and need some direction ..

Submitted by mhillqt on Wed, 2006-10-04 - 12:15

Ive had panic disorder for close to 20 years.....the most severe attacks cause me to faint......i had all the standard tests over the years...ie MRI, 30 minute eeg, etc.....all normal....i recently visited a neuro psychiatrist at the epilepsy center at NYU and he told me that approx 20% of patients that present with anxiety disorders have epilepsy.....he doesnt think I have epilepsy....he told me that some people just faint during panic attacks...could be psychogenic seizures....ie they are more emotionally based and not linked to any abnormalities in eeg.....he wants me to do a 3 days stint in the hospital to rule out epilepsy with a video eeg,sleep deprivation,etc....i doubt they will find anything.....i think there is a fine line between panic disorder and epilepsy since they both stem from temporal region of brain.....sounds like yours came back abnormal.....doesnt that mean you have epilepsy? Also, panic and epilepsy can be 2 separate illness OR your epilepsy is causing your panic and once the epilepsy is under control, your panic might be as well....

Hi all, :) First off..there

Submitted by solis on Wed, 2006-10-04 - 13:41

Hi all, :) First off..there is one thing you need to know re: your EEGs (others with E here can corroberate as does epilepsy.com - a site written by epileptologists = neurologists that focus on epilepsy). "The EEG records the electrical activity of the brain. During a seizure, the electrical activity is abnormal. Once the seizure is over, the brain rapidly returns to normal in most individuals. When an EEG is done several hours or even days later, it misses the changes in electrical activity that occurred during the actual seizure. The likelihood of recording a seizure during the EEG is small. The EEG generally records brain waves between seizures, called interictal brain waves. These waves may or may not show evidence of seizure activity." http://www.epilepsy.com/epilepsy/eeg_normal.html Bottom line, as seizures can possibly not appear via an EEG, if such is the case I'd ask for some other tests also to corroberate that you do not have E. Now to this remark.. "dissociative episodes where I would hover close to my body and watch myself performing various functions" wldhrt13, I have a site for you to read: http://www.epilepsy.com/epilepsy/seizure_simplepartial.html Here is some info from that site: Psychic Seizures: "These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of dÃ©ja vu ("I've been through this before") or jamais vu ("This is new to me"â€” even though the setting is really familiar)." Autonomic seizures: "These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; sweating; or goose bumps." Here it is illustrated that what some might think of as 'panic attacks' can also be a form of seizure - so the testing ordered by a physican is wise. Know I wish you all the best & hope this info will help ~sol