Tourette Syndrom and/or Epilepsy?

[Malla]

Hello everyone.

I have to ask this question - is there a link between Tourette Syndrome and Epilepsy - or can a variety of Epilepsy resemble Tourette Syndrome?

I am sorry if I have touched on the subject before in threads in this forum - but I am still trying to gather the pieces. Both for my son and for myself, as what we are experiencing remains a big mystery.

I have a brother who is diagnosed with Tourette Syndrome. He has extreme upper body & facial/head jerks/tics.

My son is experiencing what I have chosen to call a "light version" of Tourette Syndrome, he has upper body jerks, but no head or facial tics. My son also has a sleeping disorder - since he was a baby he would have trouble falling asleep. Also, he wipes his nose frequently and often has dilated pupils. In addittion to this he has gluten intolerance. He is NOT on any medication.

Moreover, he explains waking up confused, sometimes thinking he is in another room, or somewhere else than his own bedroom. He also explains having precognitive dreams, deja-vu - and lucid dreams. He explains spacing out, and being in his own dream world... Lastly, he explains having some sort of automatic behaviour. Especially when he is playing a game on the computer, he says: "It is as if someone else is controlling his actions" for a brief period. (And ofcourse he says this automatic behaviour makes sure he wins the match haha)

I remember having "eye rolling" as a kid. I remember my head sometimes turning to one side - and wiping my nose aswell. I also remember "spacing out" frequently. I remember precognitive dreams and visions - and now when I am 38 - seizures.

Are we talking Tourette at all? I am prone to think that this is a form of Epilepsy, maybe something like Absence seizures. I know there are supposed to be like 40 different types of E, so it's hard to tell - but can anyone shed some more light on this pussle of ours? = Anything is welcomed

Should I take him to see a doctor for a second opinion? I have already been to a pediatrist, who said there's nothing wrong. But I have my doubts.....


Thank yous, hugs Malla

[knothing]

Tourettes dances a fine line with many other disorders for example OCD and ADHD and sometimes they share medications. I have never heard of Epilepsy and Tourettes being very similar at all and I know the medications for the most part are not the same. I have Epilepsy and my son has Tourettes. My Epilepsy is from head trauma and his Tourettes is just how he is wired.
We went to several therapists with my son before finding a diagnosis that made sense. His case is light and he has a tendency to get new vocal tics all the time and the few physical tics he has are very borderline OCD.
In your situation it seems more like Epilepsy combined with maybe Tourettes (it took us 2yrs to him diagnosed mainly due to his symptoms showing at age 3). I would see a pediatric neurologist if there is such a person like that. Myself I would look into a Ketogenic diet for him since he has an issue with Gluten. You have my deepest sympathy because I know what it is like looking for answers to get your kid on the correct path.

[Malla]

Thank you knothing. And yes I will definitely look into the ketogenic diet for both of us. I guess it's the jerks that makes me think of E and T being related to eachother. But then again I'm not a neurologist:/ lol...... oh well let's hope they do find a cure for both !! Hugs Malla

[Nakamova]

Tourette's and Epilepsy are both neurological disorders that can cause involuntary movements, but they tend to differ in how the movements are experienced, and how they show up on EEGs. Some of the symptoms you describe sound more like absence or simple partial seizures. If they seem to be progressing, you might want to have your son checked out for any neurological issues -- including sleep disorders and epilepsy.

[confusled dad]

Malla,

I have been looking for info for years. I saw your post and pretty much crapped in my pants. our 2 experiences could not be any more similar, except none of my brothers have it, and it seems to have skipped my daughter. I have had doctors tell me for 6 years that I am crazy, that my sons making up stories. the precognitive dreams you spoke of gave me the shivers when i read it, i thought i was losing my mind. seriously, its like you copied one of my own medical files.

I did not have my first seizure until 2009, I was then 36. I has as many as 17 in 1 week, and as long as 14 months without one. I had been treated for ticks and compulsion issues (speech mostly) since as long as I could remember. the ticks went away, but i do admit some things that come from my mouth i cannot explain or even apologize for. It only happens when i am stressed or angry or scared. my son shows none of those symptoms yet, but those didn't start for me until I was 15-16

all the symptoms your son has mine has, including the wake up confusion, and the comment about video games. he also does that with movies, and will sometimes get so sucked in he starts having conversations with the characters, until I tap him or say his name loudly.

for 22 years doctors have bounced me around from add meds, to antidepressants, now to seizure meds. i keep telling them they are linked, and i keep getting the " you watch to much house on tv" attitude.

like you i have not medicated my son yet, as hes only 12. he does not have gluton issues, but ANY over amount of sugar ( like more than 2 cookies) and he gets violently sick for 12-24 hours, then miraculously better, which has also baffled every pediatrician he has ever seen, and every single one gave a different diagnosis.

with me and my son its not rubbing the nose it the eyes. and twitching them, and both ( mine went away) CONSTANT clearing of his throat like there is a lump in it he says.

Do you get the weird taste and smell in your mouth before your seizure? like 30 sec to a minute before, either like burning electricity, or maybe a copper taste, or the smell of rotting produce? i know thats weird but its driving me nuts, even though its nice to have a warning.

anyway, not really looking for anything just wanted to rant, and thank you for helping me sleep feeling less like I am nuts. If you get anywhere, or find a specialist anywhere that understands anything you are saying, please try to let me know

[Malla]

I believe they are linked too, somehow. ADD/ADHD/TOURETTE/EPILEPSY.... however.... I do get terribly itchy eyes before seizures. To the point I had to quit make-up ha ha And yes... sometimes I do smell weird smells, rotten eggs or burnt.

When I was in my teens, I always had to "clear my throat" and cough! .... and the eye twitching - yes that too I've had. Since I started to go from all these weird symptoms, to what could be characterized as seizures - I get the smells/itching/flashing of lights/goosebumps/sudden emotions like fear/happiness/depression and even nausea... then the muscles in my legs/arms starts twisting and flexing, I get very dizzy and feel like fainting - and I feel like I'm charged with some electrical power that needs to get released - then BOOM! then the shaking/jerks starts.

I also have absence seizures.

Sometimes, I dont have the warnings prior to a seizure - If I'm without meds, I get a sudden weakness/feeling of being really sick in my whole body, two split seconds before I faint/shake.

What about the out-of-body experiences/weird recurring dreams and the ... (forgot what I was gonna say) AMNESIA HA HA

Hey, the violently sick for 24 hours you were talking about may WELL be gluten intolerance (if it involves nausea/vomiting/sweating/headaches) Please check it out - or even better, remove GLUTEN..... ugh

I just thought of something, when my son eats gluten, he gets sick like that - I wonder if they may be gluten induced seizures ?! :O hmm

[Malla]

And I will definitely let you know whats going on - I will be admitted to the private epilepsy hospital in Denmark next monday, is where the specialists are gathered

[poshpoodle]

My daughter, 7 years old has been failing miserably at 1st grade. All year the teacher has said that she stares off into space and she can call her name several times and gets zero reaction from her. She also has mild tics. We go for an EEG on the 10th. Is there anything I should ask. I am clueless. The doc said it could be Tourettes and absent seizures. I am heartbroken for her.

[AndrewIrish]

I'
m going through the same thing with my brother right now. I have diagnosed juvenile myoclonic epilepsy so I'm more inclined to believe he's having myoclonic jerks when 'ticks' rather then him suffering from tourtettes or something similar... it's an oddball situation.