Midazolam (Nayzilam) nasal spray

[valeriedl]

This medicine is a nasal spray to stop seizure clusters, If you're having them one right after another or two or more in one day. My neuro's physician assistant prescribed this to me on my last visit.

When I tried to have it filled they told me that the Midazolam (the generic version of Nayzilam ) spray doesn't exist, only some sort of vial. I spent all afternoon looking stuff about Midazolam I think that the vial is a shot. The only 'nasal spray' is made by the brand name, Nayzilam, of the med. This cost over $500, this is through GoodRX too, and there's no way I can afford this.

I very rarely have seizure clusters that happen right after another. I do have more than one seizure a day at times though.

Does anyone know more about it and how to lower the cost?

 

[Porkette]

Hi valeriedl,

The next time you are online check out Valtoco.com this is also a nasal spray for seizure clusters and on their webpage
they stated it was $20.00 for a bottle of spray. They give all the side effects and details of the spray.
I wish you the best of luck and May God Bless You!

Sue

 

[Heavy Kevy]

I was given Nayzilam on my previous visit as well. I experienced cluster seizures for the first time. I was unaware they were going to continue so I didn’t use it. When I spoke with the Dr today he said twice, “don’t be afraid to use it”.
I forgot to ask what to expect for side effects of a medication this strong. I have to imagine it’s quite a shock to the system.

 

[C0urt]

my doc gave me a few a bit back, the hospital calls me every month to see if i have used the ones i have, if so they mail me a new box, they are a controlled here. my girlfriend uses them when i am seizing for an extended period of time. with my current drug combination it rare they are needed, but odds are they help

 

[Heavy Kevy]

After at least one seizure a day this week. I tried Nayzilam today for the first time. Also recognized my aura and was able to sit for the first time.
Slept most of the day, and feeling useless.
I still don’t understand how the rescue med is going to help me 24 hours from now.

 

[XxBlaqkxX]

Some medications are highly expensive and barely accessible unless you can fork the cash and sometimes, that's how it is.

I asked my neurologist about having a benzodiazepine on hand (ick, hate 'em!) in case a bad seizure starts to come on because of an issue I had with ER doctors fueling 3mg of Lorazepam in my IV line last time and then the nurse's argued with the doctor who authorized that and who was liable if I fell on the way to the bathroom, even with assistance. Some of the nurse's flat out said they wouldn't help me to the bathroom if they had to take liability for the fall when they didn't authorize that high of a dosage. For me, 1mg has been more than enough in the past. I want to avoid that situation again because boy, was I mad that I couldn't do anything but lay on the sofa the next few days and had to have my mom come watch me and the kids while my husband worked.

My neurologist told me about these really cool benzodiazepines that were dissolveable film when placed in the mouth. That sounds a whole lot safer than dissolving the pill under the tongue for me (I can't swallow it before a seiziure because I'll throw it up, but usually have time to dissolve one under my tongue with water as the onset is generally slow for me). Went to the pharmacy and picked up a few pills because they told me my insurance didn't cover what my doctor prescribed and it was going to be expensive as well. There was no real way to lower the cost as it was a specialized type of medication. I'm betting it was a high tier/schedule medication and a lot of insurances don't like to cover the cost of those 100% or even a good percentage worth. Some of them are also more highly controlled by the state, I can imagine nasal sprays might be more highly regulated.

Sorry you weren't able to get what you needed.

I wish some of the actual convenient medications would be a lower price for those with seizures, but that's not how the pharmacy game likes to work.

The only other thing I can think of is to talk to your doctor about other options and if there are other, more affordable nasal sprays that your insurance may cover more. You could also call your insurance company and ask if there are any ways to reduce this cost, but they'll generally refer you to prescription saver programs, manufacturer discounts, and you've already attempted to use the GoodRx.

 

[Heavy Kevy]

I tried to ask my Dr about how long will the rescue spray last?
“Seizures beget seizures” is what he told me. Something I hadn’t thought of. My one a day cluster did stop after using it.

 

[Heavy Kevy]

Gave the spray a try this morning. Tough week
Possibly had 1 or 2 SZ a day starting Sunday night.

 

[Nakamova]

I hope you can have an easy weekend.

 

[Heavy Kevy]

It could be working. I’ve used it 4 times now. If a cluster was happening I’ll never know.
Not slowing the frequency but the seizures have stopped each time.

 

[Nakamova]

That's great to hear!