It's Official; I have Epilepsy

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Patricia

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I saw the epileptomologist yesterday and he is very confident in saying my seizures are Tonic Clonic. I had the first one December 20 and the next February 26. Both happened during the night and in both case I lost bladder control. I woke up with my chest drenched in sweat but I wasn't hot.

I am of the age where waking up hot at night is not unusual but this swaet is different. It's like someone has poured a bucket of water on me. Both times I wake up at this point and then realize that I have also wet myself. My arms are achy and all I want to do is sleep.

The next day is a right off as I sleep off and on all day. Despite sleeping so much during the day I can still sleep well at night. Day 2 has been better and I feel more energetic.

Beginning tonight I am to increase the medication I am on already. I have Trigeminal Neuralgia and take Carbamazepine, Baclofen and Nortryptiline. I find it so discouraging that after all the rest of my neurological issues the past 5 yrs I now also have E.

Tonight I increase the Carbamazepine fromm 400 mg CR am and pm to 500 mg CR am and pm. I am so nervous as I have SIADH and this medication is partially responsible for that. Could someone please tell it's going to be ok and that the increase will not cause any problem?

I would appreciate hearing your E stories in brief ie how you were diagnosed and how you have responded to meds.
 
First off:

:hugs:

Now that you are officially diagnosed, we can teach you the secret handshake. :)

Quick question #1: Since you suffer from SIADH and Carbamazepine can cause it, why aren't your docs trying you on a different anti-seizure med rather than increasing the Carb? I realize that the Carb is for the neuralgia, but there are many many meds out there that might help w. the seizures w/o exacerbating the SIADH. I can't tell you that it's going to be okay, but can say that there are a lot of options for treating seizure disorders these days, many more than in the past. hang in there.

Quick question #2: Has epilepsy ever been considered as a differential diagnosis for the trigeminal neuralgia? (While relatively rare, reflex epilepsies can mimic trigeminal neuralgia.)

Apologies if you've answered these questions elsewhere.
 
I would appreciate hearing your E stories in brief ie how you were diagnosed and how you have responded to meds.
I had a big ol' tonic-clonic (technically it was two t-cs, but they're considered one because the second piggy-backed on the first), out of the blue when I was 35. Diagnosed as epilepsy almost right away because my EEG showed the "classic" abnormal brainwave patterns associated with epilepsy. No known primary cause, though perhaps a head injury when I was 5 may have left a tiny scar that lowered my seizure threshold. I am lucky -- my seizures have been medication-responsive. I've switched meds because of side effects, not because of problems with seizure control. Currently on Lamotrigine. Basically seizure-free for almost 9 years.
 
Thanks for the prompt reply. You have raised very good points. I have not tolerated many other meds for treating the TN so my options are a bit limited. As far as the E mimicing TN or vise versa. TN is extrememly different from the grand mal seizures I have had. The sseizure neuro said the E could be coming from anyone of the folowing.
a.)the scar from the MVD surgery which was to cure the TN
b.) the blood clot in my brain
c.) the unusual cluster of blood vessels on the left side of my brain
d.) idiopathic
 
Hello Patricia, I've had epilepsy since birth, I was born with a large scar on the right side of my head, and it caused my seizures. I've had them all my life, but I wasn't diagnosed until after a sister saw one when we were making dinner about 12yrs ago.

I'm med-resistant, but of the many med's I've taken, I am now on vimpat and lamotrigine, which has been working the best of them. I'm still having them, but they have slowed them down in both intensity and the frequency quite a bit.
 
Thank you for sharing your story with me. i appreciate your story as it makes me feel less alone. This all seems surreal to me.
 
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