Doc "not convinced"?

[SalukiGirl]

Hey everyone, I'm new and was just diagnosed with epilepsy this past week. This has been a 7 year long battle trying to get an answer so I'm relieved to actually have a dx finally.

They first started when I was 16. At work all of a sudden I felt really lightheaded and then completely lost my vision, everything was black. I felt very weak and like I was about to fall. So once my vision came back I ran to the bathroom and would usually get sick. The episodes would last maybe a minute or two and afterward I would typically have tremors or a headache.

Since then they have continued but will be aggregated. I wont have any for a few days then have several within an hour or so. Docs tested me for anemia, thyroid disorders, hypoglycemia and diabetes etc... with no answer. I had multiple MRIs and CT scans with nothing. Then finally my GP ordered an EEG which found 2 sharp waves originating from my temporal lobe.

But then when I went into my neurologist, even though he prescribed me Lamictal, he said he wasn't convinced that these are actually seizures. I was under the impression that seizures vary widely depending on the person so why are mine "not right"? Do these even sound like seizures?

 

[Endless]

Hi, Salukigirl,

Love your name. Do you have a saluki, or do you look like a Saluki? (They really are elegant!)

Seizures do come in all shapes and sizes. Especially Temporal lobe epilepsy, which can be downright weird.

Here's a link to a description of vision loss as a part of occipital lobe seizures.

And as a part of complex partial seizures.

Has your doctor done a CT scan and an MRI? Don't let this scare you because it is very unlikely, but also take a look at this: http://www.abta.org/symptoms/13

In collage I had a vision loss like you described. It came with a loss of hearing, and I felt like the world was disappearing. I also feeling like I was falling, like I was going to pass out. I didn't have health insurance and it only happened a couple of times so I shrugged it off. Now many years later I'm diagnosed with epilepsy, so I wonder about it. But I have temporal lobe epilepsy, so I'm not sure that would fit. Hmmmm...

 

[SalukiGirl]

I have had a brain MRI and CT scan done. The MRI showed nothing but the CT scan showed a growth on my thyroid which ended up being benign. Could the vision loss be secondary generalization to the occipital lobe?

 

[Nakamova]

Hi SalukiGirl --

Did your neurologist say why he didn't think your symptoms were seizures? Did he have any suggestions about what they might be? Did he say if the Lamictal worked, that that would indicate epilepsy after all? He should be able to give you some sort of answers.

I hope you are tapering verrrrrry slowly onto the Lamictal. Usually they taper up no more than 25 mg at a time, wait a week, and then taper up again. I'm on Lamictal, so let me know if you have any questions about it, or how it might make you feel.

One more thing -- it's a good idea to keep a seizure journal, where you keep track of when seizures happen (including time of day), how long they last, and what happens. In addition, it's a good idea to track medications, dosages, and possible side effects. And Lastly, it can be helpful to note anything that might play a contributing role as seizure triggers. These can be a wide range of physical, physiological, and emotional stressors. Number 1 stressor is fatigue, but other triggers include food sensitivities, dehydration, low blood sugar, flashing lights/fluorescents, hormones, etc. If you do find a pattern, it can potentially help in reducing seizures.

Here's a good place to start for more information:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[SalukiGirl]

They started me at 25 mg and are increasing me 25 mg every other week for 5 weeks to get me up to 100 mg. He said that he couldn't be positive that they were seizures but couldn't tell me anything else that they might be. He basically said that if the Lamictal made my symptoms taper that he would assume it was epilepsy. The only thing I notice is that I'm always standing or sleeping when they happen. I know that fatigue is a big trigger because that was when they found the sharp waves. The only other thing that I can tell is that maybe blood pressure might be a trigger because they happen more while I'm walking or standing up. He also told me to keep a journal. I had a small one earlier where I had ringing in my right ear and felt a little dizzy but didn't lose my vision or have the other symptoms I normally do. Thanks for the link!