right temporal lobe epilepsy anyone??

[leonora]

Hello I don't know what country you are all from but I am English I had right temporal lobe epilepsy for over 20 years the de ja vu's the dream like qualities the mysticism the oooh help me feelings of dread embarrasing moments when I woyuld bend double and fall shaking then I ended up moving from a small hick town in the county of lancashire to the county of kent near London where all those nice big hospitals are with important neuros in white coats who know what their doing they study at our hospitals from all over the world. Music it turned out triggerd my siezures and aren't we all surrounded by music? whether shopping or whatever. Well I told them my talse of woe and they said they had heard of this type of epilepsy but had never come across it before. So out came the big machines the scanners the imagaers the dye for the damaged part of the brain (to highlight this area) music was played and I had an enourmous TLE fit all classic symptoms of musicogenic epilepsy appparantly and they knew just how to fix it and so they did all within 12 months. Mind you I had to half my brain shut down to make sure the other side would take over in case things went wrong.
Well alls well that ends well hope you are all keeping OK

 

[Endless]

Leonora,

Welcome to the forum!

I'm so sorry to hear about your seizures. Did I read right that they are under control now?

Music triggered your seizures? That is so interesting. It's a form of reflex epilepsy. You aren't alone. Here's a story on an American TV Channel (ABC) on the same thing:
http://abcnews.go.com/Health/News/story?id=4156548&page=1

I have TLE, too. I get the dream states, deja vu (and jaimas vu), and embarrassing moments, too. My embarassing moments are usually when I say or do something crazy during a complex partial seizure.

Did I read that you had surgery? If so, how did that go? Are you on medication?

 

[Rae1889]

Music triggers my seizures too!

Well some of my seizures and only some songs. I have found that computer sounding songs with beeping and shrill high pitched sounds trigger it. So basically techno. And loud heavy base that you can feel in your chest makes me feel ill, which could be a simple partial.

I'm not sure if I have right temporal lobe or not. I have damage there, but my first neuro said it was jme and my second neuro said psychogenic seizures. So I think they are wrong as I have symptoms that are classic temporal lobe seizures, and my myoclonics don't happen nearly as often as they did and to be honest I now think it was the lamictal causing the increased twitch

 

[dragonlady1978]

Certain fast beat songs trigger seizures in my son, rhythmic motions like swinging or spinning can do it sometimes too. We used to live in mountainous region of Arizona, one of the roads out was very winding/twisting with sharp turns...driving on it used to trigger them also.

I have to keep shades on my car windows because the sun coming through trees as we pass can make light/dark changes very quickly like flashing and that is another trigger.

It's very strange, and hard when the triggers are difficult to avoid in day to day life.

It's great to hear that you are now seizure free! I'd also be interested to hear what your treatment was

 

[KelVarQ]

Wow, I have RTL epilepsy and I never considered music to be a trigger. I've had the surgery and I know what you mean about having 1/2 your brain shut down to see if the other 1/2 will take over...it's called the WADA Test. Interesting test as you're actually functioning on 1/2 a brain ; ) I also had the weird deja vu' for years prior to the tonic clonic and had no clue what they were until I had the tonic clonic. I would call them "emotional deja vus' since I never had a name to it nor knew they were actually seizures. That's interesting about music and I don't know if it's a trigger for me but I certainly hope not. I'll have to keep note of that, thanks.

 

[ColmanMac]

Hi prompts & welcome - I'm Col & still consider myself a newbie here - Am in Northumberland with "sh*t-hot" Neurotic @ Newcastle RVI - Don't know if it's ethical to plug one's own consultant via site but feel free to pm me if you wish-
Regards
Col.

 

[leonora]

Hi many thanks for replying
Oh I love that bit where the docs say that its due to an emotional respose to the music
You dont' have the bleedin' time to work up a response your brain has gone into meltdown mode. jamais vu's dejavu's you name it i had it oh and talk about walk about tours... Of I would trot with my husband following me in my wake as I dragged the hospitals expensive equipment glued to my head as the docs tried to work out what temporal lobe was misfiring hey you have my county's symbol (lancashire) the red rose... how cool is that?

 

[leonora]

Yup am now cured apart from the night time seizures but am mostly controlled by Keppra specifically designed for the temporal lobe. But I will add too anybody taking them never ever skip a dose or those fits will wake you up like being bludgeoned over the head with a sand bag and also they cause SUDEP I am sure you are all familiar with that phrase.

 

[leonora]

haven't you ever been booked into a hospital for overnight tests and observation? Drs are pretty cautious and do not take the optiion of cracking your skull open lightly but you do deserve some help please make sure you get it for your own health and sanity.
How does it work over there private/public health or what? thank goodness for our glorious NHS Yes the hospitals are victorian relics but our technologies are state of the art and we have the best people from all over the world who want to work for us.

 

[leonora]

Kelvarq please get the help you need and deserve. How do you fund your health over there? thank goodness for our NHS yes the hospitals are old and victorian but the equipment is state of the art and many doctors visit us from other countries to gain expertise.

 

[ColmanMac]

Hiya leonora; My Szs tend to be a response to Sunderland losing @ home!
Col.

 

[leonora]

Sunderland ? you poor deluded person We're having a re-run over here on the likeley lads oh that takes me back

 

[ColmanMac]

As it's coming to Christmas, leonora; D'ya know why Jesus wasn't born in Newcastle?

(They couldn't find three wise men & a virgin!!).

Col.

 

[hedtrouble]

Left temporal lobe myself. Weird feelings hot sensation from feet to head, deja vu, weird smell too, headache then sleep. Had the same before grand mal only quicker & too late. Im originally from Tasmania, Australia now live in a little town in the country called Minyip only 450 people in Victoria, Aus. Im 54 new to this & will take a bit of time to find my way around. I have a very bad memory, get confused easily, and as for the mental issues well thats another story, Nice to be here.

 

[Minkels]

Hello Leonora and welcome...I am currently in the grand, progressive state of Kentucky (LOL) in the U.S. but have visited England and really enjoyed my trip there. I don't have TLE, but a guy I know with TLE has seizures that are triggered by orchestra-type music, which makes it kind of hard for him in shopping centers and in doctors' offices, where they seem to play that music. Welcome to the site, and I am sure that you will find much support and help.

 

[leonora]

No surprise there then you still got that nice geordie accent?

 

[leonora]

No surprises there then.

 

[leonora]

Aye man you lot were never as wiswe as we mancs

 

[barbara]

left temoral lobe epilepsy anyone??I have a problem with television,not the flashing lights but the sound.I love music as long as its not R&R.Gregorian Chant is my favorite.My disagreement with the television gets worse and worse as time goes by.Alot of people will not give up TV no matter what.Glad for you that you were able to be fixed.What do you think of music now?