How Do I Know If My Problem Is E Related?

[Solicitous]

Hi every one.

I have been having Simple Partial S's and Tonic-Clonic Ss

For a while now I have been having some weird episodes that I am not sure if they are E related.

I did tons of research and can not find anything.

I thought that they are autoisms but I really don't think so.

Here goes:

Sometimes when I am watching TV, I'm relaxing in my chair, then all of a sudden, my head turns left to right then upwards, and at the same time both of my arms are making odd uncontrolled movements. My eyes constantly blink. I am totally aware of what I am doing, but my mental awareness is altered. It lasts anywhere from 1-3 minutes, and afterwards I get very confused.

Another similar episode happened at the restaurant and other places. When the waitress came to our table and she went to hand me a menu, I had the same experience. It was as if I was scared of her or something, but I was not. It was like a trigger that set it off.

The same type of episode happened but more sever.
My family disowned me because I had a couple of seizures while on the phone to my mother. And she told me to smarten up!!
One day I got on the chairivan, and my mother was on it, aand I calmly looked at her and said hello. She gave me a dirty look and turned away.
It didn't seem to bother me at all, in fact I thought it was kind of amusing.
She must have brought on a trigger, because I went through the same motions of my head turning in all directions as well as my arms. I couldn't control it.
2 minutes after getting off of the chairivan the symptoms stopped completely.
If I was a doctor I would say that it was an anxiety/panic attack, but in my belief that is the farthest from the truth.

I even do the same thing with my wife when she approaches me suddenly and I automatically put my arms out like in a defensive way and I get the same reaction.

This has got me worried and totally perplexed.

I have too many things to discuss with my doctors appointment tomorrow to talk all about this.

Now what would I ever do with out my wonderful new family? All of you have been so good to me and for me.

Bless you all.
Norm Beam:onder:

 

[Nakamova]

Complex partial seizures can manifest as automatic movements of one sort or another. Also could be reflex epilepsy -- triggered perhaps by flickering on the TV, or by sudden movements by your wife and mother. Definitely mention these to your doctor.

 

[occb]

My partner and I had the same problem with doctors. We had a list of symptoms as long as my arm, and trying to communicate it to them -- they didn't listen. I have since discovered -- with the awesome help of people here -- that writing these things down in detail and bringing it in with you is the best way to communicate with the majority of physicians.

Listing exactly what happens is important -- what kind of odd uncontrolled movements did you experience in your arms, for example -- did they jerk rhythmically, at the same time as each other, did they jerk around independently? How did you feel (I just discovered this one after my partner reported giggling when the bicep on one side, and the hand on the other side jerked in unison in a rhythmic fashion. Weird, eh?)

There are some odd, odd ways seizures can behave, so this stuff you're reporting could very well be seizure activity.

 

[occb]

I almost forgot to say too -- when I had spoken to the advocate for the Epilepsy Association, she said record everything and anything unusual, whether you know what it is or not.

 

[Bernard]

I have been having Simple Partial S's and Tonic-Clonic Ss

For a while now I have been having some weird episodes that I am not sure if they are E related.

They sound like complex partial seizures to me.

 

[kyrissa]

I have complex partial seizures, and these symptoms sound similar. I am unaware of my actions, but am told that I smack my lips over and over, and swipe my fingers together. During my post ictal stage, I attempt to brush my hair over and over, or wash my face over and over. I have no control of my actions.

 

[Endless]

Part of it is finding the right doctor, no matter how good the documentation of your symptoms is. I built a list of symptoms with a description, when it first came on (some back to childhood), when it happens and how often.

I went first to my primary care physician, who saw my extensive list of symptoms, and she said, "it sounds like seizures to me," and she sent me to a neurologist.

I gave my list of symptoms to my first neurologist, and she looked at me like I was bonkers, told me it was menapause, and told me to take namenda for the memory issues. This was a gross misdiagnosis and in my opinion she should no longer be practicing medicine. When my primary care physician heard the diagnosis her response was, "well, she ought to know." I think my PCP & that neuro are personal friends, too, so it explains a lot.

I was disgusted with the first neuro, and on my own initiative dragged myself to a second general neurologist. He had called my first neuro in advance and gotten a pre-story from her, and came into the room assuming I was a nut. He took one look at my long list, gave me this look which I didn't think looked terribly respectful, but he did immediately refer me to an epilepsy specialist. In that one appt. he referred me & sent me on my way without explaining why he was sending me to a seizure specialist or what it might be, so I was still completely baffled. I haven't seen him since.

So on to my third neurologist, the epilepsy specialist I was referred to by the second neuro. The Epi specialist took one look at my list and said, "I know exactly what's wrong with you," and he explained termporal lobe epilepsy to me, scheduled more tests, and gave me a prescription for an AED. I'm still seeing this neuro today.

I had never heard of TLE before that point and I was rather flabbergasted. The Epi specialst, (my current neurologist), gave me some literature to read, and when I did, all the puzzling symptoms made sense. They were spelled out in black and white on the websites he had given me. For the first time my symptoms fit in with the Dr's diagnosis. Eureka.

Now I'm getting the right treatment, and I have big hopes that my seizures will be under control someday soon. I'm not saying my doc is perfect, he's not. Sometimes we have some big communication problems. But it's worth working through because he's a good guy who cares about his patients, and he has a blazingly smart brain. I feel like I'm in really good hands.

Keep looking for the right doc. Hard to do when you don't feel good, but you need to do it in order to get properly diagnosed and treated. You'll know him/her when you find him/her.

 

[occb]

Good point Endless -- I really don't want to go back to the neuro we were sent to before, because he seems to think one negative EEG means it's not seizures, and he only focused on one symptom, instead of the whole spectrum we told him about, resulting in a one hour EEG where they only paid attention to the activity of one specific lobe. We could have talked ourselves blue in the face, and he still wouldn't have listen beyond "a space-out caused by looking at an optical illusion", nevermind that we stressed short, plentiful and clustered episodes, or that we stressed that most of the activity appears to be nocturnal *shakes head*

I'm going to try to push the GP to send us to the Epilepsy clinic for diagnostic testing instead of back to him. Hopefully they'll know what they're doing better than that yahoo did.

 

[Chris515]

Keep looking for the right doc. Hard to do when you don't feel good, but you need to do it in order to get properly diagnosed and treated. You'll know him/her when you find him/her.

Very good point. My first neurologist put me on tegretol from the age of 11. By 23 my seizure control was decreasing, and the side effects were getting unbearable. Especially the memory loss and severely shaky hands. Also the dizziness and drowsiness were getting progressively worse. I wanted to switch to another medication.

He refused, saying tegretol was good enough for me. I repeated the side effects - he looked at me like I was a moron and he actually said "it's all in your head. tegretol doesn't have side effects like that. you're having a psychiatric problem. I can't help you with that."

I was just flabbergasted. After I collected myself I told him where to go and walked out. It took almost a year but I found another neurologist and I'm still seeing him (7 years). He told me that it's likely the side effects were getting worse because I was on the medication for so long, and trying something else might work better for me. And lamictal did. Not perfect but better.

 

[occb]

The good old "it's all in your head" defense. My partner is so sick of hearing it. Of course it's all in his head -- his brain is in his head!

 

[Endless]

Arrogance... some docs can't admit they don't know, so they blame the disease or lack of explanation on the sufferer/patient, instead of taking responsibility for the lack of diagnosis themselves. Hence "It's all in your head."

A better response would be, "I don't know, but let me do some research and I'll find out."