Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I recently requested medical records from my doctors. I had seizure like episodes starting in '07 that were diagnosed by my first neurologist as pseudoseizures. The records show that he noted abnormalities on my basic neurological exam but when a trial of Keppra didn't work and I had a normal EEG I was told it was pseudoseizures. I've continued to have them, tried psychiatric medication that didn't work, and in the end dealt with it. About a year ago I was diagnosed bipolar and put on Depakote which seemed to both help my mood and lessen these episodes, and then they stopped for a while. The second neurologist that I saw wanted a very thorough description of my episodes, never said a word to me about them, but I discovered in his notes that he put "complex partial seizures" in his assessment of my condition from the very first appointment.
I have a new neurologist now (I still have some neurological damage and they are trying to figure out the cause, plus these episodes). His office is booked and I can't get an appointment anytime soon. Meanwhile these episodes are getting worse, I'm having them almost every day now. Last week I was in and out of it for about 2 hours. I don't even know if I should be going to the ER or if I am supposed to be just dealing with them. I'm really stressed out by the whole thing and don't know what to do. I don't feel like anyone is listening and I don't know if I'm actually in any danger from these episodes or not. Does anyone have any insight they could share with me?
I have a new neurologist now (I still have some neurological damage and they are trying to figure out the cause, plus these episodes). His office is booked and I can't get an appointment anytime soon. Meanwhile these episodes are getting worse, I'm having them almost every day now. Last week I was in and out of it for about 2 hours. I don't even know if I should be going to the ER or if I am supposed to be just dealing with them. I'm really stressed out by the whole thing and don't know what to do. I don't feel like anyone is listening and I don't know if I'm actually in any danger from these episodes or not. Does anyone have any insight they could share with me?
It seems it doesn't matter how many Neuros you see, most will have conflicting Opinions. So, what to do? Educate Yourself about Epilepsy & all it's aspects, including Types, Triggers, tests, medications & alternative treatments.
http://www.epilepsyfoundation.org/about/types/types/index.cfm
Please bookmark this site & browse their info when you have time. :) Chek out Recommended Books, also. Treating Epilepsy Naturally by Pat Murphy has been on the list for over 20 yrs. :) Very Good Reviews. You can chek w/ Research Librarian at your Local Library for availability. :)
Start a Journal! This can help You figure out what is Triggering your seizures. As you will read, Triggers can include Stress (mainly from poor sleep), foods (Gluten & aspartame are the most common) additives, lighting, etc.
http://www.2betrhealth.com/index.html
As for ER: They are only good for 'noting' your seizures. There really isn't much else they can do. Unless, your seizures are over 5-15 min Non-stop. Then, the ER is Very Necessary!
Call your Neuro office & ask them if they can 'fit' you in sooner or to call you Immediately if someone cancels an appt.
Questions for your DR: http://wwwnomoreseizures.com/ Your DR may not have time to answer all these Questions, so list them in your Journal & at every Appt try to get an answer to 1 or 2 or more. :)
Causes of EP are Numerous. It will take Time & Patience. Keep in mind, over 65% of PPL w/ EP have 'No Known Cause'. Usually, you can figure out Triggers B4 a cause, if any, is determined. :( The most important thing for your DR & you to concentrate on now, is controlling the Seizures. This may take Several med &/or dose changes. Or Alternative treatment if you opt for that. But, most Neuros will not inform you of Alternatives. So, again, do your 'homework'. :)
http://www.glutenfreesociety.org/gluten-fre.../gluten-leaky-brain-and-epilepsy-seizures/
http://www.helium.com/items/1527695-brahmi
http://www.huffingtonpost.com/dr-mark-hyman/5-steps-to-kill-hidden-ba_b_739213.html
In danger: Yes, you should not be driving, cooking, climbing stairs, etc. till betr. Plus, frequent uncontrolled seizures can damage the brain.
http://www.ehow.com/how-does_4598154_seizures-damage-the-brain.html
Ok, enough 'homework' for today. Keep asking questions. :) I'll be here for you.
Love Candi
I didn't know there are so many different triggers. I was told that because mine can be triggered by stress sometimes that meant it was psychogenic, so that's definitely interesting. I didn't know food could be a trigger either, I've been keeping a journal but now I know some new things I should look for.
I think I'm having simple partials and complex partials. My boyfriend used the cam on my phone yesterday to record what I call "phase 2" of my episodes for the new neurologist to see. It was very strange to see it from the other side if you know what I mean. I heard these weird noises and I asked him what it was and he said that it was me breathing. I know that I feel like I'm not getting air during my issues but it was loud and it seemed like my breathing slowed down. It makes me worry that maybe I'm not getting enough air.
The video is a little over 5 minutes, sometimes they go for 10 to 15 minutes though. I've had them go for hours but not often, it wipes me out the whole day and the next one too. (That's not including the first part which I think is the simple partial.) I've been blowing them off for so long it's hard to convince myself that it's something I might really truly need to go to the ER for.
Thank you for taking the time to respond and providing good info for me to read this morning. :-)
http://www.glutenfreesociety.org/gluten-free-society-blog/gluten-leaky-brain-and-epilepsy-seizures/
If there is 'pauses' between your 'episodes' the ER is not necessary, but, maybe you should go just to be sure. :) here is why: Status epilepticus: http://en.wikipedia.org/wiki/Status_epilepticus
Love Candi