Help.Tics? (not the insect kind!:D )

[Dirt_in_the_ground]

Ok,this might sound really strange.
Actually very very strange.

I have epilepsy and was diagnosed when I was 15.

Through the years,I noticed weird things happening to my body that I wasn't in control of.
My eyes started jerking,well the eyelids.Like I was constantly blinking,sort of.
Well that went on for a few years until I started a new drug for my epilepsy and it stopped.It happens now and then,but I feel more 'in control' of it.

The other one is my mouth 'jerks'.

I would be in the middle of talking and my mouth jerks and I lose the ability to talk,I just kind of make a weird noise when it happens.

I've told my neurologist about it but he didn't really take it seriously.
I had an EEG recently and I had a couple of 'mouth jerks' but no seizure activity showed up when it happened.
So I don't know if it's related to my epilepsy.

Nervousness makes it worse,like if I am trying to stop it from happening, but it happens at any time during the day,when I'm with Darren (fiancee),when I'm on my own.
It's embarrassing and Idon't know what to do about it.
My next appointment is the 22nd of this month,and I'm asking to be transferred as a private patient to Dublin to get better care,but I have no idea when I'll get an appointment.

Does anyone know what I can do,or have any idea what this is.It's becoming quite debilitating and embarrassing.

 

[Nakamova]

I've told my neurologist about it but he didn't really take it seriously.

I bet he would take it more seriously if it were happening to him! It could well be seizure-related, but originating too deep in the brain too show up on an EEG. Can you control it all or do you just have to wait until it passes. How long does it usually last?

You might ask your neurologist about this possibility that it is Essential Tremor.(http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001768/) It often shows up in the hands, but can also affect the head, mouth, and voicebox, and it tends to get worse in social settings or other stressful situations. Caffeine can make it worse. Medications like Primidone and Propranolol (which also have anti-seizure properties) are used to treat essential tremor, though like other brain meds they can have their side effects.

 

[Dirt_in_the_ground]

I bet he would take it more seriously if it were happening to him! It could well be seizure-related, but originating too deep in the brain too show up on an EEG. Can you control it all or do you just have to wait until it passes. How long does it usually last?

You might ask your neurologist about this possibility that it is Essential Tremor.(http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001768/) It often shows up in the hands, but can also affect the head, mouth, and voicebox, and it tends to get worse in social settings or other stressful situations. Caffeine can make it worse. Medications like Primidone and Propranolol (which also have anti-seizure properties) are used to treat essential tremor, though like other brain meds they can have their side effects.

Thank you for such a detailed answer.
I can't control them,they just happen and I have no control over them,when they start or finish.

 

[valeriedl]

Every so often my eyes will "flutter". My eyeballs will wiggle back and forth really quick for only about a second. I mentioned this to my neuro but he didn't say anything about it.

I also had a problem with my body shaking, stress usually brings it on. When it first happened I was in a fight with my husband - stress involved there. All of a sudden my whole body started shaking like crazy, like I was having a grand mal, but I knew everything that was going on around me and could answer any question that anyone asked me.

When it wouldn't stop after a few minutes he called 911 and an ambulance took me to the er. I can't remember how long I was in there for and I know they gave me some sort of medicine to calm me down then sent me home. I was still shaking on and off, usually just a leg or an arm. My neuro had me go into the hospital to have tests done, but couldn't find anything that related it to seziure activity.

It contuined going on for a few months after the first episode. Now every so often if I'm stressed over something I'll notice that an arm or leg will shake. I'll even sometimes a little shake, sort of like when you get the chills, and I'll have an arm or leg shake for a few seconds.

As you said, it's something that I just can't control, it just happens.