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.

Frustrated!!

Thu, 08/11/2005 - 13:51
I'm extremely frustrated as I think I've had TLE for the past 15 years and can't get the diagnosis or support that I need to get through this. I just saw a second neuro after having had a normal EEG and MRI and being given Clobazam (kin to Valium) to calm the seizures. My body has become tolerant to the medication and I'm having seizures again every night. Before the meds I was having many seizures every night. The Neuro said that he doesn't think that it is epilepsy because there are so many different seizure types that I have. In the past 15 years I have lost conciousness numerous times (urinating on three of the occasions) but have never had convulsive seizures. At the moment I'm having what I think are simple partials because I always retain conciousness. I have auditory and visual hallucinations and then a wave comes over my body and I can't move. These usually only last around a minute. Occasionally I have stronger seizures where it feels as if I'm being electrocuted, and I can visualize the position of my body although by eyes are closed. I know that I am drooling and my muscles are contracted. These seizures are always accompanied by a rememberance of the same seizure in the past when I was younger. Some seizures I feel as if I'm being levitated and my body is turning around in space. I often have déja vu and have extremely poor memory. Do other people with epilepsy go through many differnt types of seizures? It seems to me from what I've read that people with TLE can have many different types of seizures, so why would this neurologist just dismiss it? He wanted to up the dose of Clobazam, but I demanded a 24 EEG, since most of my seizures occur in slow sleep. My husband doesn't understand why I don't just trust the neurologist and accept that I don't have epilepsy; he thinks the seizures are illusional. Please, someone tell me if I'm just going crazy or if someone experiences the same symptoms!Pine

Comments

RE: Frustrated!!

Submitted by grez-monkey on Thu, 2005-08-11 - 12:17

Pine,

 

Yes, you're going crazy...crazy and frustrated because you’re not getting anywhere we your so-called current neurologist. With your descriptions of déjà vu, feeling as if you’re being electrocuted, etc, those really do match the simple partial seizures, but as for the others mentioned, where you’re loosing consciousness, that easily fits into the big category of generalized seizures. The most commonly known seizure is nicknamed ‘grand mals’ but the real name for it tonic-clonic seizure. This is a back-to-back seizure. The tonic portion is where the person’s body stiffens up and then shifts into the clonic portion which is the convulsions. Here’s some websites for each one of these seizures...

 

Tonic seizures: http://www.epilepsy.com/epilepsy/seizure_tonic.html

Clonic seizures: http://www.epilepsy.com/epilepsy/seizure_clonic.html

Tonic-clonic seizures: http://www.epilepsy.com/epilepsy/seizure_tonicclonic.html

 

With all the trouble that youÂ’ve had to experience for many, many years, now itÂ’s about time for you to be seen by an epileptologist. This a special type of neurologist that specializes directly in the field of epilepsy. HereÂ’s a website with epilepsy centers scattered throughout the United States. http://www.naecepilepsy.org/centers/centers.html

 

hope this helps you in any way.

 

Bruce (link-guy)

Pine,

 

Yes, you're going crazy...crazy and frustrated because you’re not getting anywhere we your so-called current neurologist. With your descriptions of déjà vu, feeling as if you’re being electrocuted, etc, those really do match the simple partial seizures, but as for the others mentioned, where you’re loosing consciousness, that easily fits into the big category of generalized seizures. The most commonly known seizure is nicknamed ‘grand mals’ but the real name for it tonic-clonic seizure. This is a back-to-back seizure. The tonic portion is where the person’s body stiffens up and then shifts into the clonic portion which is the convulsions. Here’s some websites for each one of these seizures...

 

Tonic seizures: http://www.epilepsy.com/epilepsy/seizure_tonic.html

Clonic seizures: http://www.epilepsy.com/epilepsy/seizure_clonic.html

Tonic-clonic seizures: http://www.epilepsy.com/epilepsy/seizure_tonicclonic.html

 

With all the trouble that youÂ’ve had to experience for many, many years, now itÂ’s about time for you to be seen by an epileptologist. This a special type of neurologist that specializes directly in the field of epilepsy. HereÂ’s a website with epilepsy centers scattered throughout the United States. http://www.naecepilepsy.org/centers/centers.html

 

hope this helps you in any way.

 

Bruce (link-guy)

RE: RE: Frustrated!!

Submitted by pine on Thu, 2005-08-11 - 13:51
Thanks for the links, Bruce. Unfortunately I live in France and I'm not sure if there are special epilepsy centers. And if there are I have to first be referred by a neurologist in order for it to be reimbursed by my health insurance. I'm having the ambulatory EEG done and then I guess I'll have to accept the results. If it comes out normal then I think I'll just check myself into the psychiatric ward. Pine

Sign Up for Emails

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