Another possibly dangerous complex partial

[Sabbo]

Today I am VERY thankful of my decision to shower before my older son leaves for school. He said that he heard a loud noise from my washroom. Because I didn't respond when he called, he came in to check on me, & I was having a complex partial.
I recall completing my shower--but nothing after that, so it must have occurred just as I turned the water off. The next thing I knew, I had changed. I have sore areas on my left shoulder & back, too. I had even pulled down the liner in our bathtub, ripping every hole.

 

[Nakamova]

Yikes! Glad you are [basically] okay, and didn't conk your head. Make a note of it in your symptom journal.

 

[Sabbo]

I noted what happened in my seizure journal. My son had, thankfully, written down the start/end times of the seizure, along w/what I was doing.
I called my neurologist's office to tell him about the seizure & set up an appt. He called back and said that he wants to add a third AED--zonisamide--once/day. I take 400mg/day of both Topamax & Vimpat, so neither of those can be increased. He had previously suggested Lyrica as a third AED, but because Neurontin along with Dilantin couldn't control my simple partials, adding Lyrica most probably wouldn't help.

 

[Porkette]

Hi Sabbo,

I'm sorry to hear that you had such a bad complex partial seizure yesterday, the same thing happened to me only I was at work and my co worker saw my body shaking and when it was time for me to leave the classroom to go to my next class I just stayed there. I didn't even realize I was in a seizure. If I may ask did you realize you were having a seizure after it was over? I couldn't tell.
I've found that the fall and winter months make me have more seizures and also low pressures in the weather. If you had any bad weather yesterday that may have triggered the seizure. I have found that taking vimpat has reduced my complex partial seizures a lot. It's up to you but you may want to mention that to your neuro.
I hope you aren't as sore as you were yesterday and I wish you only the best of luck. May God Bless You!

Sue

 

[Sabbo]

Thanks for the well wishes, Sue. The weather was fine here, & I haven't ever noticed it affecting my seizures, even when it's bad. I only found out about it thanks to my son witnessing it. If he hadn't been there, my sore shoulder (& the torn liner) would have tipped me off that I'd had one.

 

[Sabbo]

I called the neurologist's office to tell them what happened & make an appointment. My neurologist called back, & added zonisamide--25mg/night since I still get 1-3 breakthrough complex partials/month. I'll see him on the 28th. Let's see how it goes. Other than the fact that I can/have hurt myself during the complex partials, I can live with 1-3/month.

I'm sure my husband hopes he will take me off Vimpat, & replace it with this medicine due to the cost. I doubt it, especially if it's related or very similar chemically to Topamax &/or Keppra. Name brand Topamax is the drug I started on when I began having complex partials--even that didn't fully control them. I also took Keppra when it was new, but it caused cramps so severe that I was doubled over.

 

[Porkette]

Hi Sabbo,

If I may ask what's the dosage you are taking of vimpat? The reason why I'm asking is because my neuro started me out at 400 mg. a day and I was having a lot of seizures but after it was cut back to 300 mg. a day the seizures decreased and so did a lot of the complex partials. If you can you may want to give the medical marijuana a try that has helped me a lot. I wish you only the best of luck and May God Bless You!

Sue

 

[Sabbo]

I'm taking 400mg/day of both Vimpat & Topamax.

I've been on every AED out there for the types of seizures that I get (simple & complex partials). Here's a list:

Tegretol (the first AED--given after 3 or 4 tonic clonics) caused the most severe reaction
Phenobarbital
Primidone/Mysoline
Neurontin--w/o & w/Dilantin
Dilantin alone
Topamax
Keppra
Depakote
Lamictil
Vimpat
I turned out to be allergic to Keppra, Depakote, & Lamictil

 

[Porkette]

Hi Sabbo,

It sounds like you and I are in the same boat when it comes to seizure meds.
I've been on the following:

phenobarbital
zarontin
tegretol
trileptal
Mysoline
Diamox
vimpat
Topamax
Depakene
Lamictal
Neurontin which caused status seizure.
Keppra
Felbamate

and probably a couple more that I don't remember. That's why my Dr. ordered the DNA test and found out I was drug resistant and then told me to start using cbd oil.
I wish you the best of luck and May God Bless You!

Sue