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Rae1889

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Okay, again i can't find the information that i want. I found only one youtube video but it doesnt give me the information I want.

I had a tonic clonic late last night at about 11. I'm at work today anyway and feel like crud, but oddly cheery. (lamictal messing with my brain?) I have a sinus cold and took some vicks congestion stuff at about 10:30. During my tonic clonic, Chad said that it seemed like only one side was affected. like only one side of my brain generalized. My left side went nutso. I found one video of a little girl having one side affected but not the following information. if anyone has/had this happen, can you answer these?:

1. What type of epilepsy do you have (JME, RTL, LTL, FL etc)?
2. Do the sides randomly change or is only one side ever affected? IE: right side for LTL or left side for RTL?
3. After it was over, did you feel less post-ictal and sort of normal again (like I said, I feel cheery. normal after a seizure, i feel poopy and grumpy and snappy, not to even mention that i have a sinus cold)

Do you think it could have been the Vicks Custom Care Nasal Congestion medicine? and if that triggered a tonic clonic, is it possible that the meds made it one sided?

thanks guys! (the best answer gets a cookie!)
 
Well, I vote for the seizure being caused by the Vicks. It contains phenylephrine, which is similar to pseudephedrine, a central nervous system stimulant. According to wikipedia:

The primary side-effect of phenylephrine is hypertension. Patients with congestion and hypertension are typically advised to avoid products containing phenylephrine. Patients with a history of epilepsy and on anticonvulsant medication should not take this substance. The drug interaction might produce seizures. Some patients have been shown to have an upset stomach, severe abdominal cramping, and vomiting issues connected to taking this drug.

Don't know about the one-sided thing, that's a mystery to me. Do you know which side of the brain your seizures tend to originate in?
 
Not at all. I totally forgot to ask where the blips weer found on my EEG. But initially they said right off the hop, before the EEG that I had JME...which doesnt make sens eot me as I have far less jerks than I do simple partials/complex partials and more T/C than what i read happen with JME. so it leads me to believe otherwise. I know that most of the time my left side seems to be affteced although my jerks have no preference which side jerks. absences and tonic clonics, my head and eyes turn to the right. I think the muscles on the left tense and strain to make it turn. not sure. Is there a form of E where both sides of the brain are affected? i have scarring on the right side near my tempe area. thats all i got form the CT. and I have an MRI on the 20th.
 
In my case, I probably have a tiny scar on the right side of the brain (from a childhood head injury). My seizures start there and generalize to the whole brain and I have tonic-clonics. Like you, my left side is prone to tension and twitching (which makes sense since the right brain controls the left side of the body), and when I actually seize, my head and eyes turn to the right. I would guess that at a lot of your seizure activity originates on the right side of the brain, so that the left side of the body is what get affected more. You could also have multiple kinds of epilepsy, the way Meetz does, so there might be different parts of the brain where your seizures originate.
 
You can have more than one kind? I thought that meant you can have more than one kind of seizure. hmmm interesting. I always thought when Meetz said she had 4 kinds, I thought she meant like T/C CP SP and Jerks....cool?
 
Well I guess that IS what Meetz meant -- these days epilepsy is broken down into many kinds of different syndromes, distinguished by where they start in the brain (temporal lobe versus frontal lobe, say) and how they manifest (absence as opposed to TC for example).
 
I learn so much from this site!
I look for information else where, but sometimes it is in medical gibberish and i can't understand much. so i mostly like to ask on here. more honest response too. as the doctors and sites seem to make it seem like everyone is the same.
 
From wikipedia:

"There are over 40 different types of epilepsy, including: Absence seizures, atonic seizures, benign Rolandic epilepsy, childhood absence, clonic seizures, complex partial seizures, frontal lobe epilepsy, Febrile seizures, Infantile spasms, Juvenile Myoclonic Epilepsy, Juvenile Absence Epilepsy, lennox-gastaut syndrom, Landau-Kleffner Syndrome , myoclonic seizures, Mitochondrial Disorders, Progressive Myoclonic Epilepsies, Psychogenic Seizures , Reflex Epilepsy, Rasmussen's Syndrome, Simple Partial seizures, Secondarily Generalized Seizures, Temporal Lobe Epilepsy, Toni-clonic seizures, Tonic seizures, Psychomotor Seizures, Limbic Epilepsy, Partial-Onset Seizures, generalised-onset seizures, Status Epilepticus, Abdominal Epilepsy, Akinetic Seizures, Auto-nomic seizures, Massive Bilateral Myoclonus, Catamenial Epilepsy, Drop seizures, Emotional seizures, Focal seizures, Gelastic seizures, Jacksonian March, Lafora Disease, Motor seizures, Multifocal seizures, Neonatal seizures, Nocturnal seizures, Photosensitive seizure, Pseudo seizures, Sensory seizures, Subtle seizures, Sylvan Seizures, Withdrawal seizures, Visual Reflex Seizures amongst others."

Kinda blows your mind, doesn't it?
 
wait a second. I dont understand now. so absence seizures, atonic seizures, clonic seizures, complex partial seizures, myclonic seizures, tonic seizures, and tonic clonic seizures are all listed as "Types of epilepsy"? so if i go by this information then if someone is diagnosed with say...catamenial epilepsy and has TC, CP, SP seizures that manifest, does this mean that they have 4 types of E?

So with me...I don't know exactly what i am diagnosed with truly....so aside from that I have Absence, Myoclonic, Complex Partials, Simple Partials/Auras, Tonic Clonics and *according to the list* I also have photosensitve seizures, catamenial seizures, secondart generalized seizures, Status, and the type that is triggered by sounds. So does this mean that i have 10 types of E?
 
Well... it's complicated, because epilepsies are classified in five different ways...

1. By their first cause.
2. By the observable manifestations of the seizures.
3. By the location in the brain where the seizures originate.
4. As a part of discrete, identifiable medical syndromes.
5. By the event that triggers the seizures.

...and those classifications can overlap.
 
argh! that is so confusing! lol
I'm just going to stil with the umbrella term. ...I have epilepsy. lol
 
Every last

one of my types of E is at this time, nocturnal, meaning they only occur in my sleep. This is PART of each label.

First, my NOCTURNAL tonic clonics (I asked about these, and got the most pained look) Don't originate on one side nor do I have one side that does any "flailing" more than the other. I DO do some flailing with my arms afterwards, but with BOTH arms. My head does not turn to one specific side, it goes back and forth, which explains why it hurts like **** afterwards. I also tend to move around ALOT, and have done some strange things during a couple of thing........have inadvertently broken parts of my back several times. Had these all my life.

Second, my NOCTURNAL myoclonics. Quite often, I will feel as if I am literally falling 5000 feet off a cliff, and then my arms, once in a while my legs, but not usually, will start jerking. It doesn't last very long, but again, I hurt like no one's business. Since I have been on Clonazepam, though, it's been much better. Had these for mmmmmmm, 7 or 8 years now.

Third, my NOCTURNAL electrographic seizures. These only occur ONLY when I'm sleeping, and there is NO physical manifestation of them at all. What happens is that the brain itself seizes all night, and you wake up TOTALLY EXHAUSTED as if you never went to sleep. Consequently, I'd prefer NOT to go to sleep anymore. We found this one a year ago this month.

Finally my NOCTURNAL focal seizures---these originate in the left frontal lobe. There is no witness to these, what I do during them, or whatever. They were caught on an ambulatory EEG last March. YIPPEE.

So, in total, I have four kinds of epilepsy. None of them are tied to my cycle, so they can't be called catamenial epilepsy. None of them are tied to photosensitivity, BUT I DO have better control over them now that I am on the celiac diet and some specific supplements, and it started getting better on the GARD diet. On top of that I DO have some other auto-immune disorders (it would blow your mind).

There is really not a "LABEL" that really fits me, such as JME, MAE or the like. I wish there were. I'd know what to expect, I think.

But, Nakamova's right. There is a lot involving the labeling. And there ARE more than 40 types of E. It's a pain in the ARSE.

If I've confused you more, I'm sorry. Just feel free to ask.
 
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No no, I think I got it now.
I do wake up feeling like I havent slept AT ALL. Like I remember closing my eyes, and suddenly the alarm is going off, and I don't remember it being restful or dreaming.
I get the falling "fling your arms up" thing alot. sometimes 2 or 3 times in a row. and your right it does feel like you are falling off a cliff. and i panic just a bit if its what woke me up. but the ones after I know not to be scared.
I have a few tonic clonics while sleeping, but most happen in the evening or early morning when I am super tired.
As far as focal seizures, I have no idea. gues i'll have to wait for the ambulatory EEG..
But that has clarfied a bit more.

I'm just still wondering if anyone else has had a "one sided" tonic clonic. I was completely unconcious, both eyes wide open, but only one side went tense and jerked. hmmm
 
You can ask your pharmacist about possible contraindications between Vicks (or other cough/cold medicines) and your AEDs.
 
Yeah, I asked, as I figured it might be a bad idea and i should maybe take some echinatia (spelling?) and he said i should be fine. so i bought it, and then like an hour later poof...TC.
 
Oops I didn't know that. So echinatia and vicks are bad. Dang! What can I take?
 
If you're

in doubt, there is usually a interactions checker on ......hmmmmm, I THINK it's www.rxlist.com. It might be www.webmd.com's drug thing, though. I can't remember. If someone else remembers, PLEASE post it for me.........I can't think at the moment.

And if you happen to be at the pharmacy, ask the pharmacist to run it through their computer to check for contraindicaitons.....
 
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