Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

60+ seizures in the past 6 months and seizure activity on 2 seperate EEG's but no diagnosis

Mon, 01/22/2018 - 17:57
I am a 35 year woman with no other health concerns. Last July I was at a dental appointment and within moments of being injected with prilocain among other numbing agents I had my very first seizure ever. We all thought is was a negative reaction to one of the shots I had been given. A few weeks later I followed up with the same dentist to finish my dental work and he decided to inject me again with prilocain stating that there was no way this medication was the culprit, and it had to be one of the others he had injected. Low and behold seizure #2. I was actually a few days out from a military PCS to a new duty station so there was nothing I could do but wait until I got to my new duty station to have a work up done to find out what went wrong. Upon arrival I was immediately referred to a neurologist who ordered an EEG and MRI before our first visit. I followed up a week or two later and to my surprise he told me that I definitely was suffering from seizure activity in my left temporal lobe. I had only had the two seizures at that point and they were brought on by the dental appointments. He told me to start medication but I refused because it just seemed odd to me. I thought it had to be something that was caused by the shot and if I just did not take that shot again I would not have a seizure. Fast forward about a month and I am sitting in class getting ready to have what I think is a panic attack so I leave before I disrupt class. On the way home I am not sure how I knew what was happening but I pulled over, called my husband, and told him I felt weird and that I thought I was about to have a seizure. Next thing I know my husband is shaking me and an ambulance is pulling up. I had had another seizure that left my entire left side of my body paralyzed. I was somewhat conscious and I could feel my body still twitching but I was unable to talk. Long story short I had several more seizures that evening and after the emergency room ruled out a stroke and heart issues they sent me home doped up on ativan. The following day I felt alright, but by nightfall I was having back to back seizures again. Went back to the hospital and was admitted for almost a week where I continued having several seizures per day. They did another EEG and found seizure activity in several regions of my brain but still nothing on an MRI. I was placed on Keppra and sent home after 48 hours observation on the meds. I went back to my Neurologist the day following my release because the Keppra was causing my blood pressure and pulse to drop dangerously low. Something the hospital neurologist had noted and cut my dose in half. My neurologist completely took me off the Keppra and placed me on klonopin. Very low dose. It seemed to be working for the past two months mostly. I had occasional breakthrough seizures but nothing severe. But last monday I felt is was less effective. By thursday I was having cluster seizures again. Saturday back in the ER because after the 10th one my husband called 911. I still have yet to be diagnosed officially with anything. Seizure Disorder or Epilepsy, my neurologist does not seem very interested in getting me in to adjust my medication or dose to control the seizures I am having now, and he will not even tell me what type of seizure it is I am having. I seem to mainly have one type although I have had a few that are completely different. Is this normal? Is this how things go when first being diagnosed? I know I cannot expect immediate answers, but it is so hard not knowing what the heck is going on. Right now I don't even officially have a name to call whatever is happening to me. My life is at a stand still because I can no longer drive and I live in fear that since I am home alone in the day one of these episodes will occur and I will either fall and hurt myself or that when it starts if I am alone it will not stop and no one will be here to do something to stop it. Any advice would be greatly appreciated.

Comments

Anybody with a brain can have

Submitted by birdman on Mon, 2018-01-22 - 19:55
Anybody with a brain can have a seizure, but epilepsy is the name given to those of us who are more vulnerable to having seizures.  An epilepsy doctor might call this vulnerability a "lowered seizure threshold".  So if you have epilepsy even when you are not having a seizure there can be excess discharges in the brain showing up on an EEG that indicate you are vulnerable to seizures. Many medications can lower that seizure threshold just enough to set a person with epilepsy into a seizure.  I'm not sure what the effects of numbing agents are.  I have not had any problems with these but every patient is different.  But don't forget that even anxiety and stress can lower the seizure threshold.  Maybe the stress of dental treatment is enough to add to your problems.  If you take Klonopin or some other anti anxiety medication you might want to take that medication just before you go in to that next dental visit (or any other stressful event).That's to bad that no doctor has told you a name for what you are dealing with.  Surely they must have come up with a diagnosis.  Ask you doctor what the diagnosis is or even ask for a copy of your report from the next neurological visit.  It sounds to me like you have "partial epilepsy" also know as "focal epilepsy" and the big seizures that you have are generalized seizures that evolve from partial seizures.  Don't ignore any sudden, odd sensations that come and go throughout the day without developing into big seizures.  Keep track of these and report them to your neurologist.  I understand you have panic attacks but try not to be alarmed by these.  Just keep track, be calm, and take notes.  These might be simple partial seizures that can evolve into generalized events.

Thank you for the advice. I

Submitted by MamaJ on Tue, 2018-01-23 - 14:16
Thank you for the advice. I try to keep records of episodes but I could do a better job. I will definitely be sharing them with my neurologist the next time I see him. I'm beginning to feel like my life passing me by waiting on some answers. I am trying to be positive and not let it depress me, but the longer things take the more opportunities I am missing out on. May I ask, how long did it take for you to get a diagnosis or treatment plan once you began having seizures? 

I had febrile seizures as an

Submitted by birdman on Tue, 2018-01-23 - 19:57
I had febrile seizures as an infant and was given medications for this.  As a child I was diagnosed with a "seizure disorder" and was given medications to try to stop them.  Mom asked the pediatrician if I had epilepsy but mom said he was reluctant to call it that. It would be interesting to know why doctors can be so slow to make the diagnosis.I think I was about ten years old when I saw my first neurologist. I don't remember the diagnosis "epilepsy" until I was a teenager but I've been on treatment all my life

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.