Advice/Someone who can relate

[ebradle3]

Hi my names Erin, I have been diagnosed with epilepsy since 2002. I was told that I had partial seizures with neuropathy in my left upper body. I had pain, tingling, and often even stiffness in my left upper body whenever I would sleep wrong and the doctors must not have been looked at it much because they diagnosed it as neuropathy. Now here I am, number years later, and my new neurologist at Mayo told me after an EEG that I have Somatosensory seizures in the Parietal Lobe. This is I guess the most rare kind of epilepsy so I am here looking for someone who can relate to me and what I am going through

If you do have the same thing I do, did the medicine the doctor gave you help the pain/tingling/stiffness go away? I have not had a grand mal seizure while on medication but the pain, stiffness, etc. happens atleast once a week.

 

[Nakamova]

Hi Erin, welcome to CWE!

Plenty of CWE members have partial seizures only. I'm not sure how many have had them localized to the parietal lobe, but quite a few folks have experienced the tingling, numbness and "Jacksonian march," that can characterize somatosensory seizures. You're in good company, and people here do "get it" about what you're going through.

The links below might be of interest:
http://www.coping-with-epilepsy.com...epsy-parietal-occipital-temporal-lobes-10920/
http://www.coping-with-epilepsy.com...-here-had-seizures-coming-parietal-lobe-8647/

Best,
Nakamova

 

[ebradle3]

Thanks Nakamova! )

 

[Zolt]

Hi Erin,

"Somatosensory Seizures: These are the most common type of seizure in parietal epilepsies." I posted the link for where i got this, but this site restricts uploading links.

I know a thing or two about Somatosensory seizures, because i had a brain tumor the size of a baseball right on top of my parietal lobe and some of it was on the frontal lobe, covering the Motor strip as well as the Sensory strip. Somatosensory seizures start on the sensory strip, which is right next to the the Motor strip. These 2 strips are right above the ear area.

Well my seizures start out with tingling and numbness and pins and needles feeling in my finger tips, then progress up my arm to my shoulders. Mine jumps over to the motor strip and starts moving my arm in a flailing type motion. Normally mine stop at the top of my arm, although they have gone as far as the side of my face. Once it went into a full blown grand mal seizures and a couple of times they were really bad seizures that would last 4 to 5 min throughout my whole body, while i was awake.

As for your question on whether medication help, there is only one answer, try it and see. Since we all are different, meds can work for some and not for others. Some meds i've tried in the past absolutely did not work for me, while for others it's there miracle drug.

Sorry you need to join our group, but glad you did, there are a lot of wonderful knowledgeable people on here that are going through the same thing or similar or know someone who is and are willing to take the time to help others.

Smile everyone, it's a beautiful day to be alive,

Zolt