Finally getting the nerve to post this one

[tam bam]

I am not too sure if this is even seizure related but believe it is. The medication doesn't seem to touch it but I thought I would post it anyway to see if I could get any answers here. I will try to explain to the best of my ability this weird problem of mine that I have been to many, many doctors and neurologists about and yet no one can even explain it. It showed up when my seizures began to get worse that is why I think it is seizure related and I had two movement disorder neurologists and they told me it is not a movement disorder so I am thinking it is seizure related but yet all the neurologists that I have been to just tell me they don't know so that is why I am going to put it here and see if anyone here will know what I am talking about by chance. I am desperate. I have also had this checked out by an oral surgeon and he didn't think it was tmj related and I also had it checked out by an orthopeadic surgeon and he didn't have a clue as well.

Here it goes. I will have brief episodes through out the day where I do not lose consciousness but my jaw and neck will move involuntarily very quickly or sometimes it is very slowly for no reason. I will feel this intense pressure in my jaw on my right side right beside my temple. The bottom part of my jaw will begin to move when this pressure starts. My jaw moves to the side of my mouth until it makes a pop noise and my neck will also move when my jaw does and make a pop as well. It is very painful and this can go on for many, many hours. I cannot control it but it hurts. This can happen many, many times per day. Sometimes it can go on for hours, and sometimes it can happen for a day or two. I have read that you can have a partial status epilepticus and it is common in your face. Could this possibly be what is going on with me? Why wouldn't the seizure meds be helping with this? I also get my regular auras with these events which also leads me to believe this is prolonged seizure or a back to back multiple seizure events. I know if I went to the ER in my hometown they would not have a clue what to to so that is why I have never went especially if the neuros can't figure it out so I have just let it take it's course. I know that is not good but what can you do? The meds seem to help with the rest of the seizures but just not this type minus a few break throughs here and there. onder:

If I have been too vague here and need more to go on please ask and I will try to tell you more about these strange episodes that plague me.

tam bam

 

[Deb12345]

Hello tam bam and welcome to this group. :hello:
Have you ever had any of the following?:
* A MRI scan
* A normal EEG scan
* A videoed EEG scan.
* A week EEG scan
If not these might help you and the Neurologists to figure out what is going on. I am new to epilepsy so couldn't really tell you much about what type of seizure (if one) you are having. My guess, though only a guess, that it could be a "Myoclonic seizure". onder: I hope others on this site will be able to help you out better.
Take care and try not to worry. This site is great and the people are very friendly. Any other questions you need to ask, just post them on this site.
Best Wishes
Debbie
:rose:

 

[Nakamova]

Hi tam bam --

Your jaw stuff does sound seizure-related. It may be a second, different kind of a seizure, which is why it doesn't respond to your current seizure meds. You say that you can't control it or make it stop. Have you tried any kind of intervention -- anything from taking a muscle relaxant, to having someone massage your neck/temples, to putting pressure on the pressure point right below the nose? Do you know if it's triggered by anything in particular?

 

[tam bam]

Thanks so much for the great suggests. Yes, I have tried muscle relaxers. Many, many, many of them. I even tried a very powerful one called Amrix that my oral surgeon gave me and it did not stop it. That is when my oral surgeon said okay it is not jaw related maybe brain related? I tried heat, ice, therapy and what not and still no relief. It is so weird.

I could very well be some sort of myclonic seizure. I have also run across this as well. Epilepsia partialis continua ( It has been argued that EPC is a form of focal cortical myoclonus) I just copied that from the web page so Deb you maybe on on to something here. I think you are doing better than a better job than any of the doctors I have seen. Thanks for thinking outside of the box on that one.

Also, Nakamova I have found no triggering factor with these episodes. Trust me I have tried. I have tried keeping a journal of events and have found nothing that even relates to these episodes. Argh, I wish I could figure it out. It drives me insane! My mom tells me to stop doing this all the time and I tell her I cannot. She doesn't get seizures at all. I HATE SEIZURES! Not sure what to do about it and how to convince doctors that this could be seizure related. I even tried to video tape it and the doctors I tried to show it to did not watch it. I handed it to them and they handed back to me. I guess this was their way of saying we don't have time. Geez, how else are they going to understand if they don't watch it. I give up.

Oh yeah, on my last EEG, Deb, the neurologist said he saw the jaw movements but he didn't know what they were. I also wrote down what time and described them for him so he could have a better understanding and he still didn't have a clue. the VEEG came back normal.

tam bam

 

[tam bam]

I forgot to add to that the jaw and neck movements are repeated over and over again unitl it finally decides to stop.

Also if it is epilepsia partialis continua I have read that it is usually resistant to meds so that could be the reason why the anti-seizure meds that I have tried do not stop it.

tam bam

 

[Kween]

Hi tam bam,

I can relate as my jaw and neck were thrown out of alignment caused from an accident I had and so I saw a chiropractor to fix the problem and even more unexpectedly ))))))))))) So maybe try that for yourself if you never have before.

Sincerely
Kathy

 

[tam bam]

Thanks Kween, I have gone that route as well and scared the hell out of that guy due to having a full blown seizure in his office. I think he thought I was nuts (this was before finding out I had seizures). Thanks again but please keep the great advice coming. There has got to be something out there I haven't tried.

tam bam

 

[RobinN]

Magnesium is a great natural muscle relaxant. It is possible that you are deficient in this mineral.

 

[tam bam]

Robin thanks for your thoughts as well. I did try that as well. A neurologist at one time suggested this and of course, it did not help. I really appreciate it though.

I do feel it is some sort of seizure though. Last night I was sitting on the floor and something happened for the first time with this type of whatever the heck this is. I was talking to my husband and he was on the computer and my jaw made the weird movement quickly pm the right side of my jaw and my neck and jaw snapped at the same time on the right side and BAM! I was out like a light with a seizure. Then I came to and then I had a cluster of 3 more seizures and then I went to bed because they made me so tired afterwards. This has never happened before. Do you think maybe this is progressing? Scary!

 

[Nakamova]

Hi tam bam --

Another idea: Have you ever tried seeing a cranio-sacral massage therapist? I'm not 100% convinced that cranio-sacral massage is the real deal, but I've heard success stories from others. It might be worth checking out, especially if you can find a practitioner with a lot of experience/training. Also an osteopath might help as well.

 

[Deb12345]

Hello again Tam Bam,
When you said you went "out like a light with a seizure" does that mean you had a tonic-clonic seizure?

Here is a good site to look at:

http://www.epilepsy.com/discussion/968069

I hope the link works by pressing it. If not just copy and paste.

It tells you over 40 different types of seizures. I hope it is of some help.
Kind Regards
Debbie

 

[tam bam]

Thanks Deb. Yes, I had a tonic - clonic. I appreciate the link. I will try it tonight. I appreciate all the help.

tam bam

 

[tam bam]

I finally have my answer! It is a frontal lobe seizure. It has been diagnosed as of tonight by my neurologist. What luck! Thank you doctor!

tam bam

 

[Crystal11]

Almost sounds like a simple muscle spasm of some kind. Normally Epileptic seizures don't last for days at all. You can have status but the EEG would show the abnormal brain waves.
Maybe you can ask for an AEEG or one you can take home with you- wear for a few days and maybe catch an episode while the EEG is runing. You can write the description down and give it to your neuro/doctor.

Is your awarness and abilities to function still normal during those episodes?

Have you seen a message therapist or chiropractor, or a physical therapist?
It could be something simple too.

Good luck with everything
Crystal

 

[tam bam]

Thanks so much for the helpful replies to everyone. When my doctor called the other night after reveiwing my VEEG again for the second time he has diagnosed me with epilepsy finally. He did see the odd mouth movements I am describing here and it was recorded and it did show a 3 second spike wave and he said okay this is not normal. It came from the frontal lobe.

After doing some reading I have found that this is very common with frontal lobe epilepsy depending on where in the frontal lobe the seizure is originating from. This is what I have found regarding this type of bizarre seizure: "Masticatory seizures (opercular seizures). Masticatory seizures are characterized by prominent mastication, swallowing and excessive salivation (Bancaud 1992; Biraben 1999). Consciousness is preserved. If the seizures originate in the dominant hemisphere, they are accompanied by expressive aphasia. They have been localized to the opercular region of the frontal lobes."

I have many other types of seizures with this frontal lobe epilepsy as well, gosh after reading about it, it sure has answered a lot of my questions and explained a lot of my bizarre behavior since childhood.

Thanks again to everyone.

tam bam

 

[RobinN]

Robin thanks for your thoughts as well. I did try that as well. A neurologist at one time suggested this and of course, it did not help. I really appreciate it though.

May I ask what type you tried?
How much per / day?
How long did you experiment for?

 

[tam bam]

Oh gosh, Robin. To be honest I cannot remember the exact amount. I think it is in my medical records and I will see if the neuro at the time put it in his notes. It has been about 4 years ago so to be honest I can not tell you. All I know is I tried it for about 2 months and it didn't help so I quit taking them. I think the brand was Natures Cure or something to that effect. I remember taking them twice per day and that is all I remember to be honest. Sorry that is all I remember.

tam bam

 

[Molly97]

Tam Bam,
What you have described in this thread reminds me of my experience back in 2006. I was on Geodon because the docs thought my seizures were due to my mental problems(which were resolved by therapy in 2001). After 2 years on the Geodon, I had a nasty grand mal. After that, I started having involuntary movement of my jaw and mouth. Went on from May until November. I finally brought it up to my doc because everyone who saw me commented on it. Doc said it was an adverse reaction to the Geodon and took me off cold turkey. I must admit that was fun and it took me almost 6 months to clear my system. Since then, I've had no more involuntary jaw movement.

I know you said you've been diagnosed with frontal lobe epilepsy. I post this so others can see other possibilities for the involuntary jaw/mouth movement discussed here.