So, now what?

[Autumn Breeze]

I have a brief history with seizures, I had my first one(s) in January of this year, and went on Tegratol. I went off the Tegratol, and was on nothing when I had another seizure in July. It took until late August to get my (general practice) doctor to agree to put me on Lamictal.

During this time I found out that my biological father also has seizure, but he had his onset during his childhood (11-12). He has only had a handful of seizures, and has been on Dilantin for at least the last 30 years. *His doctor* thinks that my seizures are Psychogenic, but he has never laid eyes on my medical records, much less me.

When I had my first seizure my husband took me to the hospital. I had actually had 2 at home, but I had another while we were in the ER. They gave me a big dose of ativan and admitted me. They took a lot of blood, did a CT scan,MRI, and an EEG. Everything was "inconclusive." After my second seizure this summer, my GP wanted me to see a neuro. As much as I would like to, we don't have insurance. The clinic at Emory University was highly recommended, but it's quite a drive, and I'm not sure if we can work out the upfront cost. But we are considering it. The neuro that my GP suggested in town, refused to see me because he would have to send me somewhere else for a video EEG.

Every place I have called since they has been discouraging regaring the video EEG because my seizures are SO far apart.

Now I just don't know what to do. I called my GP on Friday and emailed him today. We have applied for Medicaid, I at least want my kids covered, but we applied as a family to see if I could qualify. But, now what?! Will my GP want to increase my meds. Take me off of them? I know over all it's my choice what happens, but I'm learning as I go here.

I need a doula...

 

[Nakamova]

Are you still on Lamictal? Have you had any seizures since going on it? If it's working for you, can you continue to take it, and hold off on seeing a neurologist until absolutely necessary? Or is your GP hesitant to continue to prescribe it?

 

[Autumn Breeze]

Wow, just wow, I didn't even submit the right draft.

What I left off, I had a seizure this past Wednesday. I have missed one dose of Lamitcal, and that was about 2 weeks before the seizure.

This month has been very stressful and a little traumatic to be perfectly honest. So, everyone is saying they're psychogenic seizures, but no one is willing to help me do whatever needs to happen nexts, or even point me in that direction.

I would be ok continuing the Lamictal, though I imagine a higher dose is coming, my dose is low. 100mgs. My GP was hesitant to prescribe it in the first place, so I wouldn't be too shocked if he decided to pull his support for that med. I still haven't heard back from him. It's not easy to get a hold of him.

 

[Nakamova]

If you can't get your GP's support, then it may be worth making the trip to Emory to see the specialist, even with all the hassles that entails. And in the meantime, write down all your symptoms, what happens when you have the seizure, etc. At the very least, your GP needs to help you if he's going to suggest that you taper off the Lamictal -- it shouldn't be done quickly, and it shouldn't be unsupervised. You might also remind him that many seizures are undetected by an EEG, and that you are concerned about the risks of having another seizure.

 

[Hand of Blood]

it is a nightmare that docs and neros only go by what tests are telling them! rather than listening to the paitent!
it may help if you brought along someone who has also witnessed these sezures and is able to explain to them more what it was like

all my test came back normal.... but i had t keep going and going to docs before they gave in and sent me to nero and put me on tabs!

just keep at them for what u want!

 

[Autumn Breeze]

My husband is the only one, aside from the ER staff during the first cluster, that has seen anything. We've googled and I've watched videos, and he's said that some of them look like what I do.

I have to double check, but I think my GP is out of the office today. I'll have to look into the Emory bit again. It's about a 90 minute drive, and since Hubby is the only driver we'd have to work everything into the "school schedule" because the kids get in at 7:55 and get out at 2:30. Add in the 90 minutes for traffic and I can't be seen until 9:30 at the earliest and that's not counting waiting room time.

This blows. If my mother hadn't just had to deal with going to and from Emory when her brother was dying, I'd ask her to take me sometimes.