The BIG Doctor Visit

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Zoofemme

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Hey all! Well...today was the day to find out the results from all of my latest tests. Not quite what I was expecting but in some aspects I walked away feeling a bit better.

I've never quite known what type of E I have beyond grand mal seizures. Never had a real diagnosis since my tests have been inconclusive beyond a small scar on my MRI. I really wasn't expecting anything more this time around either.

Today I was told I have temporal lobe epilepsy; complex-partial seizures with secondary generalization, simple-partials (smell seizures/ auras) and regular complex-partials (my twitching/tics).

My MRI didn't show anything new but she mentioned old scarring in the left temporal lobe that I didn't know anything about. Maybe that is why my old neuro put me on the meds he did, lol.

My EEG actually came back showing something this time :eek: She said it didn't show an actual seizure taking place but it did show a lot of irritability around the left focal area. There were several high spikes on the left side.

I get to wear an ambulatory EEG next week...she wants to try to catch the smell thing or the twitching if she can. These happen more frequently and have been going on a lot longer than the generalized T/ Cs. I feel like an idiot for not ever mentioning these to any neuro before...I just never thought about it, I thought they were my weirdness :paperbag: My mom went with me so was at least able to tell the doctor that they have been going on since I was a teenager.

The doctor isn't happy about all the meds I'm on though. She wants to try to take one of them away...namely my trileptal since Lamictal is the one they went with when my seizures picked up. I told her I had to think about it first because I didn't want to start stuttering again. She also said if I seize again she is going to pull the topomax and try something else...that I will have to suffer with the headaches in the mean time :(

Lots of things to ponder and sift thru. At least now maybe it can be tackled in a more organized manner.

Oh, I've definitely lost my license for 3 mos, lol. Not like I drive anyway...
 
You sound like you have a wonderful neuro.

Getting a "name" is good..want to know what we're fighting eh?

I am newly diagnosed and wondered if your portable EEG would pick up these goofy partials.

I have lesions on both temporal lobes and now what I throught was stress may have been seziures.. I am so confused.


When did you have to stop driving? I just was told this past week in the hospital.

Let's stay in touch

Jan
 
Progress! The medication switching is tough, because it really is a guessing game for you and your doctor, but patience and persistence can pay off. It sounds like your doctor is listening to you, and that will make a huge difference.
 
Yes, having something definitive after 12 years does help. My husband was actually relieved even though there were a few extra types of seizures thrown into the mix, lol.

I don't know what the ambulatory EEG will show...this is the first time I will have one done. I'm suppose to keep a diary at the same time to help see if any thing picked up by the EEG corresponds with what I notice.

This neuro seems to really be on the ball. I was uneasy with her being a female...I'm not a big fan of female doctors, lol. She is close to my and I think that helps. She takes her time and goes over everything, asks a lot of questions and answers all of my questions. She also writes everything down. Having my diary helped immensely, I could refer back to it and it reminded me to mention the twitching thing.

I also asked her about working...that was kinda funny. Basicly she said that I could work but she would have to put a lot of limitations on me: no heavy machinery, no climbing on ladders or cleaning in high places, no kitchen work or working with charp objects, no multitasking or managment positions (my old job), nothing that would involve high stress or long work hours, etc., etc. I could, however, do volunteer work or answer a phone/receptionist type of thing part time...:roflmao: I am not taking away from anyone who does that type of work by any means so please don't be offended...if you knew me though, your drop would probably hit the floor to try to imagine me sitting in one place answering a phone. My mom even looked at the doctor in disbelief when she said that, lol.

Jan, I was told not to drive following my last two seizures this month...the doctor told me today that officially I am not allowed to drive for 3 months following my last seizure in accordance with Ohio State Law.

Nakamova, she wanted to try me on something else besides the topomax for the headaches too as a back-up...in case she had to pull me off of it. I was too afraid to take her up on it. It was stuff that drs have mentioned before until I mentioned my other allergic reations. I'm alone a great deal of the time and the idea of having an allergic reaction that got out of control too quickly just made me uneasy. Hives are one thing, I keep benadryl on hand, but if it escalated beyone that I would be up the proverbial creek. DOn't know if it was the right choice or not.

I forgot too add...I told her about the moodiness too...it was the Lamictal :(
 
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Is there any way to know beforehand if you're allergic to the med she mentioned?
 
No, not really. I took Midrin for 2 weeks before I reacted to it and Inderal a month. The other drug I go into anaphylaxis with is Tolectin (anti-inflammatory)...I took it for over 6 mos before I broke out in hives the first time. The second time I was on another drug so they said it couldn't be the tolectin...it took a 3 rd time and collapsing in the clinic.
 
Then it seems you'd best play it safe.
 
I am happy that you got a diagnosis now. I remember when I got mine, well my second one. Was diagnosed with probably absence seizures at 6.
For a while, I was being diagnosed based on history, witnesses, birth issues as a cause, and detailed symtoms and things I can remember- or how I felt etc.
When I had my regular EEGs in office- they didn't show much. It showed a driving responce- whicn means a seizure can come on more so than someone with a normal EEG. It happened during the photic stimulation session.
While having the ambulatory AEEG, it was for three days- while in college! It showed spike and wave, and driving response. It did not show an active seizure- but I was also taking my meds as prescribed etc..

I would not mind having a VEEG just to see what they find/witness etc. I was told of the option of surgery on the 18th of this month, which was harsh on me..

Anyway- now that you know what you have, and how to care for yourself and understand your choices- it will make coping with Epilepsy much easier.

So many people get EEGs that show nothing abnormal. Sometimes people have no idea what exactly they have going on- so when we get results on tests- it makes it so much less stressful or makes us feel that finally, something has shown up to work with.

Take care,
Crystal
 
Thanks Crystal :) What I found interesting is that this is the first time I have fallen asleep during an EEG other than the video EEG done 12 years ago. That kinda bothers me too though. As far as we know, I don't normally have seizures in my sleep...at least not T/ Cs. I have had 2 while sleeping, both due to sleep deprivation. A C/ P in my sleep that didn't generalize would probably go unnoticed by both my husband and I. He sleeps like a log and I wake up so frequently during the night that I would just dismiss it or wouldn't notice it for what it was. I am the first to admit that I am pretty ignorant in the ways of E even though I've had it for several years :rolleyes:

The doctor seemed to remove the surgery option off the table for me? The scarring definitely wasn't where she had hoped it was when she talked about it during my previous visit. The area she pointed out was deep in the temporal lobe, close to the middle of the brain? She had hoped it might be in teh curve of the amygdyla.

I still wish I could pinpoint which injury set me up. I lean toward my car wreck...that was definitely the most traumatic in terms of damage but all of the damage occured on the right side. Guess I'll never really know the answer to that one...
 
Aaahhh Zoofamme your post touched my heart.

I wondered how much they learn when you fall asleep during EEG.

My husband had seizures since age 6 and it affected his whole life. When he finally was offered a brain operation to STOP seizures he wanted to do it. He was a good candidate too. AND during the surgery they placed the electrodes ON The brain to find out he was having NO seizure activity..deemed a success.

It changed some things. He only had noctural TCs and lost his "aura" during the day. Next he got the VNS but that did not help as he could not tell he was having a seizure.. and hardly anyone but ME used the magnet..which IS a great way to STOP seizures.

Lots to think about dear one. This is major stuff.. BRAIN. WE are RATIONAL folks who want to figuer this out.. process and learn how to DEAL with it.

Keep in touch.. sorry for all you are dealing with now.

Hugs..JAN
 
I honestly don't know what they learn, if anything, if you fall asleep during a regular EEG. It was something out of the ordinary for me which is why I noted it. Previously, the tech who always did mine wouldn't allow it to happen. She didn't want me to talk, sleep, move or anything. Just lay there and wait for her instructions :rolleyes: At least they didn't unleash the whirlygig thing on me this time...that thing always made me nauseaus, lol.

A lot of folks on here who have nocturnal seizures have had "normal" EEGs I think (please correct me if I'm wrong) and it seems to me that a "normal" EEG is the , well, norm vs. the exception. I would have taken my "abnormal" EEG with a grain of salt if the neuro hadn't been so sure of it and quite conclusive...emphasizing "a lot of irratibility" and going so far as to draw out the pattern of my EEG to illustrate it for me and explain what she meant.
 
After my first tonic-clonics, I had an EEG that showed "abnormal" brainwaves. I asked my cousin (who was a doctor affiliated with the hospital where the EEG was performed) if there was any chance that my seizures were "psycho-seizures" (i.e. non-epileptic). I was really hoping that was the case. But he said, no way, that the "spike-and-dome" pattern on the EEG was about as definitive as you can get. So despite all the false positives and false negatives that EEGs can generate, it IS the case that they can be useful diagnostic tool. I also think that may be more likely for seizures that are primarily tonic-clonics as opposed to CPs or SPs.
 
Would that be with complex partials with secondary generalization too? That is what the doctor is calling my T/Cs now even though we don't know what the complex partial part of those are. I don't remember anything that happens right before one of those and my husband has never picked up on anything unusual occuring.
 
Hard to say, because your temporal lobe focus may change things a bit. You could ask your neuro for more details about the EEG.

Also, the spike-and-dome pattern shows up whether you're seizing or not. It just indicates that you're more vulnerable to having things go haywire. So if you're asleep during the EEG and the abnormal pattern shows up, it doesn't necessarily mean that you're having a seizure at the moment, just that your threshold for seizing is low.
 
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