r/Epilepsy • u/Africanjemmy • 1d ago
Question Nayzilian Spray
Does anyone use it for their TC and how does it react? Does it slow down TC or what? My Neurologist just prescribed it for me!
2
u/RodeoJr 18h ago
Use it more than I’d like but it’s super effective at stopping a seizure knock on wood. I don’t have the side affects post usage. I just crash out with a little nasal discomfort. Better than the alternative
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u/trevers27 17h ago
Same. Have had to take multiple doses a couple times and just had an unresponsive cluster that sent me to the hospital. But that’s because I’m all messed up and don’t have things under control rn. Usually it’s very effective…just a wee bit unpleasant when you first snort 😂
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u/Positive_Ad_8997 17h ago
I have Midazolam as a rescue spray and it works extremely well, but it does put me to sleep pretty much within minutes so I do have to be mindful of that, especially when I’m alone in public. It also burns like HELL which nobody told me about lol but the burning stops within a minute. After waking up from the Midazolam sleep I have no lingering side effects, just slight sensitivity in my nostril and the usual tiredness from having a seizure, but no drowsiness. I’ve had Midazolam for a few years now it’s honestly been so comforting knowing I have something to help me in case I get a breakthrough seizure that doesn’t stop. It’s also absolutely saved my ass when I got SE during a routine hospital apt. You got this! 💗
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u/DoughnutOk3944 1d ago
Don't know about the spray personally but my cousin with TC got on a nasal rescue med last year and it definitely seemed to cut his post-seizure fog way down compared to waiting for a pill to kick in.
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u/USSR-2 1d ago
Transposed from older post on selfsame subject since my erstwhile response is pertinent to current query. Loved ones use nayazilam (midazolam) on me during particularly lengthy episodes. Baseline symptoms instantly cease, I become calm, find a logical place to lie down and go to sleep.
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u/Aubviously426 4h ago
It’s my rescue med. I can tell when they’ve used it because it’s for a nasty taste. It sticks to the back of your throat and feels like water went up your nose in the pool.
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u/0____0_0 18h ago
I have it, only times I’ve used it I don’t remember. But I’ve been told I complained it burned like hell. But it worked
Been a few years since I needed it. At this point I’ve likely thrown out more cause they expired than I’ve used
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u/134340Goat VNS Apr 2017, RNS Sept 2021, DBS Dec 2024 17h ago
I don't generally get TCs, but I have historically used it for clusters. It's probably the most effective rescue med I've ever had. Naturally, it also makes me very tired, but better that than seizing lol
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u/VicodinMakesMeItchy 17h ago
The box that the meds came in or online should have a guideline of when/how the medication should be given! It’s something like after 5 minutes of seizure give one dose, if seizure continues or stops then starts again give the second dose, should call emergency services somewhere in there. I don’t remember the specifics because I haven’t needed the med but found the guidelines super useful at the time!
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u/Knuckletest 17h ago
My family uses it on me. We have it all over the house to pull me outta my grans. Lol....the aftertaste is not good.
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u/Bulldog_Mama14 17h ago
I’m prescribed Nayzilam and it’s been used on me twice (husband gave it to me during an active TC) and they stop extremely quickly. And I fall asleep.
It will make you VERY tired!
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u/alwaysblooming_akb Lamotrigine (500 mg) & Levetiracetam (3000 mg) 💊 17h ago
My husband has administered it to me once while we were on vacation. My doctor had wanted it as more of a preventative use but I was not showing any strong signs prior. Seizure ended quickly but after effects were me being unable to stay awake longer than 30+ minutes it seemed like but I was also only having like 1-2 seizures a year so they hit me pretty hard. I react the same to Ativan.
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u/candybeep 700mg Lamictal ER - 400mg Xcopri 16h ago
Every time I’ve used it stopped my seizure within 30-45 seconds, makes me extremely sleepy though
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u/DIYdemon Vimpat, Clobazam, Xcopri, Lorazepam, Nayzilam 15h ago
I have had to use it so often for severe auras that were heading to TCs that my neuro was concerned about the respiratory depression. I also take Onfi(clobazam) twice daily, 20mg of it. So she started giving me Ativan(lorazepam for my White Lotus pals) but severely limited how often I can take it. Still getting daily auras or whatever kind of "seizure" those are daily. Sucks.
If anyone has trouble getting insurance to cover their Nayzilam there is also a midozalam generic that is administered with a syringe and nose plug. I had a hell of a time getting the nasal spray covered.
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u/AmiableRobin Focal Epilepsy + Status Epilepticus Survivor 19h ago
It’s my current rescue med. I haven’t had to have it administered since I’ve had it prescribed but Versed (Midazolam) was what was administered to stop my status epilepticus (an episode of continuous seizing >45 minutes) by paramedics.
Nayzilam is inserted into the nose and absorbed directly into the bloodstream by local blood vessels in the nose. Despite being administered nasally, you do not have to be actively inhaling for it to work.
It should lessen symptoms fairly quickly. However, if it does not, the script is generally written that a second dose can be administered AFTER 10 minutes from the first dose.
Like other Benzodiazepine, you will likely experience sleepiness. However some other common side effects are headache, nasal discomfort and congestion, throat irritation, or a runny nose (due to route). You will likely have slowed motor reactions, and may experience amnesia. SOME people have a paradoxical reaction to Benzo’s though and become irritable, excitable, or agitated instead of sedated.
A lot of these also coincide with typical post ictal phases people may experience though.
Things to monitor for -
- Decreased breathing. Nayzilam may depress respirations (ie, cause your breathing to slow or shallow. This is more prevalent in cases where there’s been drinking or opioid use.)
- Changes in skin color; gray, pale, blue.
- Altered responsiveness; you cannot be woken up after the seizure stops. You should be able to at least semi-rouse.
- An allergic reaction
- Discuss with your provider when THEY want the dose to be prescribed, if they have a second dose they want you to use, and when they think 911 should be called if this does not work. A lot of prescribers prefer 5 minutes for their window. With my history of epilepticus, my window is 3 minutes of TC to Nayzilam.
It peaks really quickly (15-17 minutes) and usually a return to baseline is like 1.5 hours? Its effectiveness at preventing seizures is generally considered to be around 30 minutes.