questions and venting

[gypsyoflove]

Hi. My name is Michelle... I did a quick intro back in April, but haven't posted since. I'm now 44 and have had epilepsy since I was 21~ due to a TBI on left temporal lobe at age 16.

Seizures have always been simple partial until recently. On new years eve I felt a little odd and exhausted. My boyfriend and I went to sleep around 1 AM. He woke me at 5 AM, asking if I was okay, and told me I had a seizure and was shaking head to toe. I refused to believe it~ but when I woke I hurt head to toe, my heart was racing and I had a killer headache for 2 days after.... My simple partial seizures have never completely been under control even with medication and have been increasing for the last several months.

So I know I need to see my neurologist and work with meds... Im just so very saddened and need support from people that truly understand.

THANKS

 

[Nakamova]

I'm sending big hugs your way gypsyoflove. I know it's no fun being "blindsided" by your seizures. Hang in there. I hope you can see your neurologist soon and figure out something that will work.

 

[gypsyoflove]

Thanks Nakamova

I'm not pleased with the neurologist I currently see, but today scheduled an appointment with my GP. He's very understanding.... so he'll issue a referral to a new neuro...

Are there any specific questions I should ask? Or anything to keep track of other than seizures?

 

[Nakamova]

I would ask about any and all medication options, potential side effects, etc. Also ways to contact the neurologist if you have any additional questions. (It's always a bonus if they are easy to reach, and if they respond to email, even better!)

Many neuros aren't on board with complementary non-med treatments (even established ones), but you could ask whether a dietary approach such as the Modified Atkins Diet might be worth checking into. (See http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults )

Neurofeedback is another treatment that's shown promise, but again your neuro may or may not be interested in having you pursue this. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

It can be helpful to track not only seizures, but other health info too -- stuff like sleeping patterns, meals/eating habits, hormones, exercise -- to potentially identify triggers that might be contributing to your seizures. Make note of any medication side effects too.