New to epilepsy, seizures, brain cysts & neurologists!

[midlifefit]

I'm 39 yr old female. Recently had 1st tonic-clonic seizure. I have had migraines for years w/previous "clear" MRI done. MRI Summary of findings after seizure:

"Cluster of small left choroidal fissure cysts which demonstrate slight mass effect with flattening of the superior margin of the hippocampal body. Suggestion of small amount of gliosis of the superiorly adjacent parenchyma."

Once I had the initial seizure I continued to have seizures both "simple & complex partial". Dr. continued to increase med dose, now on 3000mg of Keppra a day.  Lots of side affects, but they are lessening and medication is slowing seizure activity way down.  EEG showed a few "abnormalities".  Seeing Neurosurgeon in 1 month.  All very new & scary!

Sound similar to anyone?  Any advice on what to expect from neurosurgeon and moving forward?

[Devina2008]

I just caught the typo- it was 38 hours! LoL I'm sure anyone would be having seizures if they had been awake 389 hours. ;)

[Devina2008]

I was curious if you had found your answers.? I, too, have simple/complex seizures and it took FOREVER to get a diagnosis.  After several test, I did a sleep deprived EEG last minute which caused me to be awake for 389 hours. I was literally fighting to stay awake in the waiting room. That test came back with 15 indicators in the T4 and T5. I have tried several Meds and currently still have the occasional when I'm extremely tired, stressed, or 'under the weather, especially around that time of the month. My most recent med change seems to be working and I am currently on:
KEPPRA XR (levetiracetam)- two 750mg twice daily
LaMICtal (LamoTRigine)- 1 1/2 200mg twice daily
A multivitamin and a daily prenatal with 800mg Folic Acid for vitamin sources.
I did try Topimax, and later Vimpat(?), but it was causing too many stomach issues. I am currently having my Thyroid and hormones tested to see if any of those May have a role in my occasional seizure.  Good luck and if you haven't found your Meds them maybe this can help you and your Dr.

[midlifefit]

Thank you Dr. Sharma for your last response.  If you wouldn't mind I would like to update you and see if you have any further suggestions or thoughts.

I went to a neurosurgeon who does NOT believe the cluster of cysts is causing the seizures and recommended leaving them alone.  The 3000mg of Keppra was causing serve side effects including head pressure and extreme gait, so we went back down to 2000mg/day and after a while it released the head pressure and I haven't had a seizure now for  8 days and feel much better "seizure wise".  

However, in the past month (after lowering dose, but assuming it doesn't have to do with Keppra) I started to have horrible pain in my tailbone & lower spine area, then numbness/tingling in my right fingers. It has progressed to more of my hand & forearm, then in my left fingers/hand.  After about a week it started in my right foot, then left.  Then the right side of my face and now in my scalp.  It never goes away and is now also affecting my bowel & bladder (mostly in the evening/thru the night).

My neurologist said he thought maybe I hurt my spine in a seizure and sent me back to my GP.  GP was wondering if maybe MS.  He did full blood work looking for AIDS, Diabetes, Thyroid, B12 deficiency, all was normal.  Sent me for neck & spine MRI and said they found a bulging disc & some arthritis, but said that neither should be causing the neuropathy I'm having and I should go back to neurologist for that, but offered no help for "back" pain.

Could MS still be an issue? Is there any other thing that could be going on that would link seizure onset, cysts & gliosis in brain, with pain & neruopathy???  Any other tests you would suggest?  I don't have full confidence in my current neurologist and I'm trying to get a recommendation to another.  He did do an EMG and hasn't given me the results despite my asking.  I don't have an appoint with him for another month and will try another dr anyway.  I thank you in advance for your time and help!

[Arti Sharma, M.D.]

Hello there,
The MRI brain findings explain the reason for your seizures. Medicines are provided on the basis of symptoms (ie symptom reliever).You  should continue the anti-epileptic medications, as your seizures are under control. Surgery has it's own complication so it is best to discuss the pros and cons with your neurosurgeon and go for it only if  absolutely indicated, Please write to me again if  you have any follow up queries or if you require any further information. This is merely an advice and not a substitute for clinical examination. Treatment will depend on the underlying cause.
Good luck and take care!