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Old 12-23-2018, 05:51 PM
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Lennox-Gastaut syndrome (LGS)


Has anyone here been dx with it? I think it's a new diagnostic category but it's made up of familiar seizures types, such as tonic, clonic, partial, drop seizures and a few others. It's supposed to start in very early childhood, 2 yrs of age and up. (my friend's started at 14) The brain scans are usually clear so surgery isn't an option. But it's supposed to have a definitive EEG pattern. Nothing has been very effective on my friend but she does take Tegretol.
She was just given Onfi (generically called Clobazam). As the name suggests this is a Benzodiazapine and judging from the doses used it's in the older class of Benzos e.g. Valium as opposed to Xanax or Klonopin. At one time Klonopin was hailed as an anti-seizure med. I don't think it was very effective and fell out of use. All Benzos are addictive and/or habit forming, as well as causing drowsiness. However they are usually quite inexpensive. But I just read Onfi is very expensive.
Something doesn't make sense here. I have been known to be a cynic.
If Lennox-Gastaut syndrome is a new name for familiar seizure types it might be a pharmaceutical marketing scheme to get an old Benzo FDA approval for use in seizure control. They can then rename Clobazam as Onfi and sell it at a high price. They can also urge the Doc's to write the script so that the generic can't be substituted for the name brand. Way too many docs know little beyond what the Reps tell them. I've hit my head on that wall dozens of times. On the plus side most Benzos do reduce anxiety levels which is a known trigger for most seizures. But some benzos reduce anxiety much better than others and I don't know about Clobazam because for some reason it hasn't been used much. Unless it has dangerous side effects it's worth trying.

These are the reasons I asked if anyone here was dx with Lennox-Gastaut syndrome. I don't know if my friend was told she has Lennox-Gastaut but she was given Onfi. I hope someone tried it and that there were no real side effects that made you quit the drug?

I'm sorry this is so long.
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Old 12-24-2018, 06:06 AM
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Lennox-Gastaut syndrome (Lennox-Gastaut Syndrome) is not new, it is just rare. But it is very serious.



https://www.epilepsy.com/learn/types...t-syndrome-lgs
https://www.webmd.com/epilepsy/lennox-gastaut#1
https://ghr.nlm.nih.gov/condition/le...staut-syndrome
https://www.livingwithlgs.com/aboutl...SAAEgLBZvD_BwE

When I was younger i was on Tegretol. It is used as a first anti-epileptic drug. Most people do well on it,
but often need the doses increased. The most common side effects are drowsiness & dizziness. It is common for children on Tegretol to grow out of its effectiveness, even
when I higher dosages. Many neurologists will add another anti-epileptic drug to the regime, or switch to
a stronger anti-epileptic drug.

Onfi is a stronger anti-epileptic drug that will be tried if other anti-epileptic drugs (Dilantin, Lamictal, Neurontin) are deemed ineffective. Like most anti-epileptic drugs, its side effects include drowsiness & dizziness. But
in Onfi, they seem to be magnified. When I was on it, I was out in 20 minutes after taking
each dosage. I would sleep like 2-3 hours before I was ready to do anything. While I was taking Onfi I also lost weight. I was too tired to eat. Fortunately I was only on it for a short time.

Remember all anti-epileptic drugs have side effects. Some "good", some bad, some horrible. You need to
consider the benefits of taking the medication. Is this medication helping me more than hurting me? How will this medication effect me long term?

As for Name brand or Generic, that's up to you. If either can effectively help you go with the generic. Most insurance companies will push for the generics anyway. You can always
have your neurologist order Name Brand or Generic specifically on your Rx.
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Old 12-24-2018, 07:10 AM
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Thanks for replying Bigman. I can use my friend's name because she hates computers and won't touch one. I hope she tries the Onfi because she usually fills the scripts but never takes the pills. Tegretol already makes her tired so when a new med causes even more sleepiness she hates it. The doc told her to start with 1/2 the dose prescribed. Donna's seizures are severe but thankfully she usually only has 3 or 4 a month. They are always drop seizures and she wets herself 75% of the time. She's had them 51 yrs and they've changed over the years. She moved to a new county which brought her to a new, very large University hospital with all new doctors. New for Donna. One wants her to try Medical Marijuana or CBD oil. I favor this because Donna says she never ever had a seizure while stoned. She won't do MM because she doesn't want the intoxication anymore. I don't blame her because neither do I. So I'm pushing CBD but Donna is stubborn.
The 2nd new Doc prescribed Onfi, I hope she tries it. As soon as I heard the name Clobazam I figured it was a benzo. As a teen Donna had bad experiences with Librium & Valium but it was because she drank with them. We both quit alcohol about 10 yrs ago.
Once, they had her on Dilantin + phenobarbital. They made her so sleepy she couldn't go to school. So they added dextroamphetamine to it which made her nutty. In short, Donna hates drugs.
The question is did Onfi stop or reduce your seizures?
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Old 12-24-2018, 08:00 AM
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Originally Posted by Afriend View Post:
The question is did Onfi stop or reduce your seizures?
No unfortunately it didn't. The tiredness side effect was too much. It was the last new anti-epileptic drug I tried. I've been on Trileptal for over 10 years with various other anti-epileptic drugs. It has seemed to be the only anti-epileptic drug to "help" me. It kept me from having Tonic Clonic seizures. But I was still having complex partial seizures often. When the complex partial seizures got worse to the point I was losing days.

I decided to go the surgery route. So in 2014 I had my RTLS.
I'm still taking my Trileptal. I past 55 months without a seizure on Dec 13th, '18.


Hopefully your friend will have better success with Onfi. Everybody's body handles medications differently. While some may feel a bit goggy, some pass out, some don't
experience anything. You don't know until you try them.
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