I dont know what to do anymore

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Horsehead, my original dignosis was that my seizures were "all in my head" and "ideopathic dystonia". THe dystonia part for me was that my fingers would curl up and my right hand would twis unaturaly nearly 360 degrees around or the same for my right foot. It was extremely painful. This is the only thing my first neuro believed was really going on with me. I was put on serotonin for it.

Now, to be fair, I don't think it was dystonia for me though. The serotonin didn't work. That problem went away when I was finally put on E meds. I have the odd episode now and then but they are rare. Dystonia is quite debilitating and from what I learned back then it is another on of those things that is managed at best (pain meds, botox injections etc).
 
Maybe go through the library and see what you can come up with.
I have some time today, so i'll start by looking up the thread that talks about things that look like E, but are not. These are things like MS, Dystonia, Parkinsons etc that people mistake. If it gets too long to post here, I'll PM it all to you.

Have you thought about posting your seizure diary on here to see if an outsider can spot a trend.

**I think it would be super cool if there was a bedroom section in this forum where you can write in your diary or people could read you diary based on your screen name. maybe something in the groups. you just start it by your username and then keep posting daiy.**
 
Got back from the dentist. She said i twiched a bit an was unresponsive. I felt like I went to sleep.vision was a little blurry otherwise ok. I'm tired. The energy surging through my body this morning is gone now.
 
Horsehead,

Here is some info I found at epilepsy.com/professionals in regards to the video EEG:

The "gold standard" in the diagnosis of nonepileptic seizures (NESs) is a recording of a typical event during video-EEG monitoring. This procedure is available at all centers specializing in epilepsy and is increasingly available at general hospitals and even in some neurologic group practices.

During this procedure, the EEG is recorded for a prolonged period, accompanied by continuous closed-circuit video observation. The digitized EEG and recorded behavior are displayed simultaneously, allowing point-to-point correlations of recorded events and any accompanying electrographic changes.

Video-EEG findings

During NESs, the EEG will show:

-no epileptiform activity
-no initial change such as premonitory spikes
-no postseizure slowing

Although the EEG tracing is frequently obscured by movement artifact, small interpretable segments containing alpha activity may be apparent, indicating that consciousness is preserved.

A normal or nonepileptiform EEG during a seizure may suggest a NES, but it can also occur during a simple partial seizure or frontal lobe complex partial seizure undetected by surface leads. A normal EEG during a seizure in which the patient is displaying generalized motor movements would not be expected in a true epileptic seizure, however.

The most important task is to ensure that the recorded event(s) are typical of the patient's spontaneous attacks. This task can be accomplished only by reviewing the recorded attack with a person who has witnessed such events. If it is determined that the recorded and spontaneous attacks are similar, a presumptive diagnosis of NESs can be made.

Some clinicians require that more than one attack be recorded, but this is not always possible. Nonetheless, it appears that a single recorded event similar to previous attacks is sufficient to consider NESs the most likely diagnosis.

This diagnosis, of course, does not exclude the possibility of coexisting epilepsy, especially if the patient has attacks with different clinical features. Some epilepsy patients experience psychogenic nonepileptic seizures at some point, and patients with psychogenic nonepileptic seizures can have neurologic illness.

The interictal EEG is not useful in making the distinction because it may be normal or abnormal in either case. The interictal EEG of patients with NESs may contain epileptiform discharges, even though the ictal record does not reveal electrographic seizure activity.

Taking anti-depressants-Trazadon and Nortriptiline can definitely decrease your seizure threshold. Make sure all your doctors are aware of these medications. As far as financial aid, does your husband's insurance from his job cover diagnostic testing, medications?
 
Horsehead, please listen to me. Please call your dr. and ask before stopping cold turkey like that. Please listen to me. It is not one of those drugs that you just start and stop cold turkey like that. Your body gets use to it. Please contact your doc.

As for the the dystonia. I was diagnosed with that too at one point and thought I had it for a year and half and as soon as I went on AED's it stopped. That is when the docs knew that dystonia was not my problem plus I went to see two movement disorder specialists and they said it too. One even exclaim "You are having seizures!" I was floored! I thought I had a movement disorder and wasted time and money trying to figured that out instead of seizures. It was a mess. I was walking around for almost two years thinking I had it in my neck, jaw and even in my torso region. It was painful and horrible. What was really going on was Jacksonian Marches not dystonia. I think I saw a total of 6 neuros for this and one was able to figure this out. Go figure.

Cint, Thank you for your very useful post on NES. That really answered a lot of questions that I have been asking lately regarding EEGs and NES.

tam bam
 
Iwas asking for the same reason tam bam was cautioning you. Abrupt stopping of ADs can cause health concerns. If you're choosing to stop, you need to educate yourself on how best to do this to avoid any negative consequences.
 
As for the the dystonia. I was diagnosed with that too at one point and thought I had it for a year and half and as soon as I went on AED's it stopped. That is when the docs knew that dystonia was not my problem plus I went to see two movement disorder specialists and they said it too. One even exclaim "You are having seizures!" I was floored!
tam bam

tam bam...it makes you wonder just how many people out there with dystonia, particularly the idiopathic type, might be misdiagnosed. You are so right about the time and money too, I know for me at the time everything was name brand and little of it on the formulary :(
 
Writing everything down in a diary as suggusted. I hope it does some good. I woke up last night with my mind racing my vision was swirling like my eyes were rolling around in my head and in between that I saw flahes of light. Has that happened to any of you?It was so weird as if I was watching laundry go around only everything was doing it.
 
oh wow!

good description! yes! that makes lots of sense to me. when I get tired and start to have small absences. I can notice the small clusters only because I snap back and go right into another so the inbetween moments look like i'm watching laundry!
 
aww good ,well sorta good, at least it has happened to someone else and I'm not crazy. I had another spell while tring to sleep a little while ago. Just felt a jolt and my legs jerked out. I was not asleep this time.
 
aww good ,well sorta good, at least it has happened to someone else and I'm not crazy. I had another spell while tring to sleep a little while ago. Just felt a jolt and my legs jerked out. I was not asleep this time.

I have that too, I never really thought that was a spell because people with out epilepsy have that too. There called hypnic jerks. I never really associated that with my epilepsy or any type of seizure. How do you know for sure that was a spell for sure?
 
I have heard of hypnic jerks they normally according to what I read happen in the first stage of sleep and happen because your brain does not realise you are sleeping and thinks you are falling.According to my veeg this jolt happened during stage two sleep and I scream with it. Yesterday it happened and i wasn't asleep at all. I dont know what it is. The neuro said he thought it was a Non e seizure or a parasomnia.
 
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