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epilepsy or anxiety? having an MRI tomorrow, and then what?--UPDATE
Thu, 06/15/2006 - 13:10I've read some similar posts to this one, but humor me here; I just have to vent.
I've been bouncing back and forth between a general practitioner and a neurologist who can't seem to figure out what is wrong with me. I was all but formally diagnosed with TLE, put on Keppra, and after a 4 day headache (possibly a migraine?) I went back to my doctor yesterday and he wrote me a prescription for Xanax! I asked him if my symptoms really fit any anxiety disorder, and he said he didn't know.
I had an EEG that came back normal, but as I understand it, about 50% of people with TLE have normal EEG's. Now I'm going in for an MRI tomorrow, and I am three shades of worked up about this. Of course I want it to come back "normal." I wish I felt completely normal, and my life was normal again...I am not wishing for bad news, but if they try to tell me everything is fine, or treat me for the wrong condition, I am going to be even more frustrated.
Reading everyone's stories on these forums has made me feel lucky that I am only experiencing mild symptoms so far. All of my experience, my gut, and the research I have done, though, has convinced me that something's going on in my temporal lobe. That just makes the most sense. They tried pumping me up full of Prozac to get rid of these episodes, because they thought they were panic attacks, and that did nothing. Diddly squat. Further, all of the descriptions of panic attacks I've read don't explain my symptoms. Definitions of simple partial seizures do, though, and being on Keppra reduced the symptoms substantially.
I swear, if anything's going to give me a panic attack, it's going to be getting bounced back and forth between doctors telling me different things and constantly playing with my meds. I am afraid of getting MRI results that don't help me receive the right treatment. I don't know how long I can take this! I just want to be diagnosed with something, whatever it is, and begin seeking successful treatment so I can have my life back. I certainly don't like the sound of being diagnosed with TLE, but being tentatively treated for that has been the only thing that relieved any of my symptoms, and if that's what I have, I want to be treated NOW! Any sage advice? Thanks for listening, at the very least. Grrrr!
--heidi
I wanted to post a brief update--I just got back from the doctor's office. My neurologist is a walking tornado of contradictoty, outdated, useless information. I am so frustrated right now that I don't know what to do. Within the space of an hour, he told me he thought I was having anxiety, and then when I showed him all of my symptoms in writing and told him they sounded like textbook TLE to me, he said, "yeah, you're right," but then told me to quit taking Keppra. Then he alternately told me he was ordering a video EEG for me, and then not, and to go see a pyschiatrist, and then not. He refers to my symptoms as complex partials when they are simple, if anything...I give up. I want a new head.
Comments
Re: epilepsy or anxiety? having an MRI tomorrow, and then what?
Submitted by missy_b on Thu, 2006-06-15 - 14:35
Heidi I am sorry to here about your situation. I have been there. I too was told I had panic attacks. My EEG are abnormal though. I have TLE on the right side. I was told to see a cardiologist, OBYN, and aq pychiatrist. I seen them all except for the psychiatrist. I switched neurologist for the 3rd time. My new neurologist is an epitologist which specilizes in epilepsy. This was the only doctor who listened to me and was giving me the benefit of doubt that my symptoms were related to epilepsy. At my first visit with him he suggested the first step is a veeg to try and see what's wrong. I went in for the veeg which lasted about a week and was monitored on the eeg and camera for 24/7. I got my typical symptoms and sure enough it was a simple partial seizure! I was angry and relieved. I am so greatful I found him. He switched my meds one being Keppra. It isn't working so I am now under pre-surgical evaluation. While in the veeg unit they have you see a neuro psychologist. He asked which anti-depresents I have tried. I tried paxil and effexor. He did tell me that Xanan can actually stop seizures and it is often used to try and stop a patient from seizing. They usually inject someone with it if the patient is not coming out of a seizure after a couple minutes. I would suggest seeing an epitologist and insist they try and prove to you that these are panic attacks. I am so tired of the burden of proof being on the patient. Doctors run tests that like you said half of the time don't prove anything but they still base there opinions on them. The veeg was the best thing I ever did and I wish the past neurologist would have did one. I have been living with these symtoms for over 6 years now and all this time they could have found the cause a lot sooner. Don't give up or accept what they are saying to you, listen to your gut. Good luck.
Re: epilepsy or anxiety? having an MRI tomorrow, and then what?
Submitted by staciem on Thu, 2006-06-15 - 16:18
Put me on the list of people who were told they were having anxiety attacks, only to later find out they are simple partial seizures.
It took switching family doctors to get a correct diagnosis. My first PCP would not listen to me and put me on Klonopin as needed. While Klonopin is fine for seizures too, I didn't really take it. It was fine to knock me out if I couldn't sleep, but who can take Klonopin and function???
Anyway, I switched PCP's (not just because of this, but for many reasons) and told him my symptoms. When I told him I had deja-vu, he told me he suspected seizures and sent me for an EEG and MRI. When I went for my follow up he said the MRI was normal, and the EEG was "basically normal" He said that he was aware that EEG's don't always come back abnormal even when there are seizures. So, he gave me three options: 1) Do nothing, 2) He could start me on seizure meds, or 3) Go to a neuro who could probably help me more.
I made an appt with the neuro and after he looked over my EEG and took my history, he diagnosed me with simple partial seizures and started me on Lamictal. I can't believe the difference already, and I am not even on full dose yet.
Good luck to you! I hope you can find the help you need. Just remember, if one doctor won't listen, find one that will!
Stacie
Re: epilepsy or anxiety? having an MRI tomorrow, and then what?
Submitted by fzMousie on Thu, 2006-06-15 - 13:55
((hug)) I feel your pain. I am supposed to get my results in an hour and a half. I haven't been formally diagnosed with anything, but given tests and antidepressants. I was diagnosed with a panic disorder and then had taht diagnosis overturned without a doubt. It's infuriating and scary because you don't know what is wrong with you. for me, the worst thing in the world that could happen would be for everything to come back normal. My husband hugged me and told me that we both know I'm not alright. I have physical symptoms. It's a scary thing to go through, but I'm going through the exact same thing right now. Feel free to email me through my profile.