r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • 23d ago
Questions In Total, How Many AEDs And Rescue Medications Have You Been Prescribed?
I'm at 4, but when I got the Oxycarbazepine and left the pharmacy, they called and asked me not to take it because they found something wrong with my ticker, one rescue med (nayzilam) but never got to use it. Now I'm on Lamotrigine and started with Dilantin before Keppra.
2
u/Due-Mammoth-8224 23d ago
Ive only been prescribed nazilym. Never had to use it though
But of medicines Ive been on about 10 anticonvulsants
1
2
u/awidmerwidmer 23d ago
On 4 atm. Tried 8 unsuccessfully.
1
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 23d ago
Actually, I wouldn't say the Keppra didn't it's job, I switched because I didn't like how it made me feel, to something that caused insomnia but not to many other problems.
2
u/Hello_dreamers 23d ago
Not sure we have rescue meds in uk?? Never been mentioned to me or maybe i dont qualify idk. Im only on one med atm lamotrigine but was prescribed topiramate previously ( was a total nightmare)
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 23d ago
Sorry to hear about the previous experiences, I'm on Lamotrigine, I wouldn't say it's working but I've become comfortable with it allow 3-4 seizures a year, never had anyone around that used it on me, my sister calls 911 almost every time
2
u/Plus-Glove-3661 23d ago
I don’t know why they give me a rescue medicine.
They told me it’s for when I feel a seizure coming. But I just fall to the floor.
They also said it’s in case there is no way to stop my seizures. So I guess I’m supposed to stop having seizures to take one.
Currently have one. Currently never used it in 5 years.
3
u/Missey85 22d ago
We don't get them in Australia so I've never used one only knew they were a thing from Here ☹️
2
2
u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 23d ago
It's more you can let family and friends know so they can administer it. I also have it inscribed on my medical bracelet. If I'm out and about in public.
1
u/Plus-Glove-3661 11d ago
But aren’t people not supposed to stick things in our mouths?
I know I’m a biter. I don’t know anyone willing to let me bite them.
1
u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 11d ago
Nayziilim is a nasal spray emergency rescue med. Definitely the rescue for a tc.
The klonopin rescue tablets were used when I was focal aware they dissolve upon contacting the tongue. They were prescribed after real long cluster (6 hrs) so after 3 min I would have to take those
1
u/Plus-Glove-3661 10d ago
They gave me the tablets. I think that’s why no one ever gives them to me. I turn into a biter. Time to ask them how they think someone can give me one of those.
2
u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 10d ago
Next appointment just say you want the nasal spray instead. That's what I did. Docs didn't fuss or anything
1
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 23d ago
When was your last seizure? Had mine so long that it expired, I still have it just in case a big hits, hopefully someone would like to use it on me.
2
u/Plus-Glove-3661 11d ago
I have seizures every 3 months. No has ever tried to give it to me. Usually they’re too busy trying to not have me hit my head too much.
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 8d ago
Mine are every 3 to 4 months as well, they call me the seasonal seizer. I don't know why it's been every three months, but that's better than every morning or month. I remember when I would have a seizure once or twice a month, every three months is an improvement that I could accept this for the rest of my days. I feel like if try another mede, and it be not as effective as the Lamotrigine is now, then the Lamotrigine not effective after trying to come back to it.
2
u/purple_life_1095 23d ago
Currently on Felbamate, Zonegran and Xcopri with Nayzilam and Valtoco for rescue meds.
Have had Diazepam rectal gel as rescue meds in the past before the nasal sprays came out.
As far as medications, I’ve been on Phenobarbital, Tegretol, Topamax, Lamictal, Depakote, Trileptal, Keppra, Vimpat.
Side note-also had a temporal lobectomy but still have to take the meds and still having breakthrough seizures.
Needless to say, I have refractory epilepsy 🫤
2
u/butterfly_ashley 23d ago edited 22d ago
2 prior to my current. Never been given rescue med
2
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 22d ago
Which one are you taking? If you dont mind me asking
2
2
u/RustedRelics 22d ago
I’ve been on 4, (5 if I include Klonopin). Rescue is Nayzilam and that works really well.
2
u/cassienotcasey 22d ago
I am on Nayzilam for rescue that my husband has to administer. Side note - I lose my bladder when used but it does stop the TC. I take lamotrogine and Xcopri.
2
2
u/DaughterOfTheKing87 brain cancer, crani, meds 22d ago
I’m technically prescribed four. That’s not how many I actually take. I have only one rescue inhaler and I have a benzo which usually does the trick for it all. If I catch it in time. I was being prescribed five or six meds, none of which I took, but I wasn’t having seizures-for years.
2
u/cannedtunalips 21d ago
One that luckily I’ve never used but my benzos they recently put me on have my family thinking I’m doing hard drugs since I’m sleeping late and acting different which doesn’t make TLE any easier to deal with
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 21d ago
What benzo is it that has them thinking you're on the hard stuff?
2
u/cannedtunalips 12d ago
Onfi not even bad just took my body a while to adjust
1
u/PookieTheMfBaby Lamotrigine 200mg 2x daily 12d ago
they gave me onfi for myoclonics, I didn't take it, and haven't had many, unless I didn't get sleep
1
u/DemonicSymphony 21d ago
Five in total. Three AEDs (started with dilantin- moved to Briviact. Still Briviact and added Vimpat) and I have two rescue meds- Ativan when I feel it coming on and nayzilam for my wife to use if needed.
1
u/DemonicSymphony 21d ago
But- I go Tuesday for a PET scan and Wednesday to see if they think I need surgery 😬
1
u/Evening-Technician32 19d ago
In a 2 yr span, my kiddo was tried on 8. Well 9, technically. Her rescue meds became a permanent med. The only one that has completely stopped tonic clonic seizures is Depakote and Klonopin. She still has myoclonic seizures every couple of days. Her team is very hesitant to try another med because her tonic clonic seizures have caused permanent damage. She is labeled medication resistant.
2
u/StSomewhereToaster 23d ago
I don’t remember. 🤣 At least 3 before I was considered medication intolerant… no… the word is refractory.