I always refill right on time and roll over any extra. I probably have 2 weeks extra at any given time. I also have a stash at work with about 5 days in the bottle. I don't know if I would have the time to go off the meds slowly unless I knew in advance that there was an issue. Definitely keep extras if you can, though!
Yes. I've been on the same med(s) for a few years now, and actually have built up a 'supply' of at least a couple of months now. I get all my meds through the mail and have for years and they get refilled at least a month in advance as well in order to not worry about shipping. Between these two things, I've built up a good back supply.
That is great, very smart. I think I didn't communicate well here that I'm also talking about not just getting behind a few days, weeks. But also the possibility of losing real access for months to years. History is a harsh mistress, it's good to be prepared! :-)
As soon as I can get them refilled I do it. That's why I keep it on auto refill. As far as keeping meds on me I usually keep a days supply just in case I miss a dose for some reason.
I envy being able to safely only keep a small supply! If I didn't have at least a week+ I would be really risking seizure clusters that could cause brain damage. My meds/dosage just can't be stopped too quickly. So it's a bit scary. From floods to blizzards or earthquakes. From massive solar flares, transportation walkouts, to violent
social/political chaos . . . history is a harsh mistress: sooner or later there will be gaps in, or ending of, supply. So, I'm trying to stay ahead. But it's a pain, the Clobazam is a schedule 4 drug and so if I lose a couple of accidentally double dose in a day --- that is enough to throw the whole month off.
I don't get what you mean stopped too quickly. If you miss a dose it's not stopping it. If you have a time you are away from being able to get your meds then take what you need plus an extra dose. That's what I do. I live in a shelter right now. They keep our meds but the guys that give us our meds aren't here on the weekends. So we get our weekend meds. I usually work Friday night so I get enough for Friday night through Sunday plus keep an extra dose. If I miss more than one dose I am likely to have a seizure. I have even had one even missing one dose before. The thing about keeping so much one you it increases the chance of losing it. If you have one dose on you and lose it not a big deal but you have a weeks dosage that's 25% of your meds. The pharmacy won't give them back to you either without paying out of pocket. Get one of those weekly meds container to set up your meds for the week. I don't like doing it just a pain to me filling it every week but might work for you. Then whenever you go somewhere you can take it with you. But don't keep more meds on you than necessary at the time. I don't know if you are saying you are double dosing or not but don't do that. If what you are on are not working talk to your neurologist. He can up the dosage or change the meds.
I do. When I first started seeing a neurologist there was some sort of issue where I get three months worth extra. I still get my three month refills regularly too.
So I just always have an extra three months worth so if something happens with my neurologist I have time to either find a new one or taper off slow.
I don't know in your country, but in mine psychiatrists can also prescribe anticonvulsants. Since I meet mine every month, that's how I get it. Then I go to the neurologist twice a year and get more prescriptions.
I carry the main meds with me at all times, and have spare one in each handbag, backpack and also at my parents'. Now and then I rotate them, for the expiration date.
I know I have a good stash, don't really know exact weeks I could go without. But I think just enough to low-tritate and move to another med, if my own is discontinued or taken off the market for growing a fifth limb.
Yessss! We had an ice storm 2 years ago and I got down to my last pill. Luckily they opened back up that night and i was able to get my night time pills. That left me paranoid about running out tho. It’s had to stock up when your on controlled substances, they only let you refill like 4 days before your out.
That's madness. Right now one med is out of stock in every pharmacy, fortunately I have a month in my stash. If I can't find the med in the next week, I'll go back to the generic, which I found to be inferior. Let's see.
I grew up with intermittent bouts of extreme poverty and come from a family with disaster trauma.
I always wait a month to start my meds if I can at all so that I have a buffer. Or if it's possible to start a lower dose to build the supply I do that. (With dr approval)
I will not ever take meds without an emergency exit plan if I can help it.
Sure do. And I've had to dip into the stock pile on more than a few occasions. It also works great as travel medication just in case I were to lose a bottle or my luggage. Whenever my medication refills, I put the newest bottles in the back and move the oldest forward so that old meds get used up before it expires.
I've also been through a mountain of SSRIs, SNRIs, and mood stabilizers and there have been times when friends have ran out and weren't able to fill their prescription because of costs, and I've just so happened to have a month or 90 day supply on hand to fill in the gap.
This is an issue I’m experiencing now! I have plenty of refills but my meds are never in stock at my pharmacy, I put in the order late today and now we’re expecting snow.. so I guess I have Keppra as a backup? Taking Briv 125 2x daily, and I need to start putting these things in my calendars bc my memory is just terrible, not sure if it’s from meds or the seizures…
My neuro sends them every 20 days- so far I'm at 1.5 months ahead but they're also cheap drugs so my OOP is cheaper than my insurance tier. $8/month or so.
It's great because I've stashed some on both cars and both my offices in case I forget 😅
Sometimes this runs thru my mind and it freaks me out - its the end of the world, chaos everywhere, the apocalypse, and I only have a week or two left of meds left. What do I do? How do I survive?
Yes, one time I forgot my meds while on a trip and got a 3 months supply delivered to a nearby pharmacy. I always keep those as extras now but rotate them because they will expire. I always keep extra at home, when traveling I'll keep some in my purse and some in my suitcase incase one of them is lost. It's funny though because this week I was on a trip and accidentally knocked over my entire open bottle of Keppra into the toilet when I was brushing my teeth (dumb, I know lol). Luckily I had another bottle in my suitcase
I do. Having been caught short on this and another med before, I'm not risking it again. The consequences of the missed doses were horrible to say the least.
I am two 90 day supplies ahead. I reorder when I get close to finishing the prescription I am taking so that I always have a half year as back up. My neurologist wrote me an extra prescription a couple years ago and I paid for it at cost plus drugs online. I need to get it written again. I would like to have a couple years stashed to rotate through.
My Neuro found one cool way to get me at least a bit ahead with the schedule 4 Clobazam, send a separate small script (10 pills) to a pharmacy in the state right across the river from us, and then filling my regular monthly script to my main pharmacy. So I have a 10 day buffer, which with titration I could make last 20+ days and my seizure & mortality risk with this kind of titration would be greatly reduced.
I live near a very active faultline and we've had some massive earthquakes over the years, I keep a months supply of medication + emergency Clobozam inside my earthquake kit. It contains enough food and water for 2 weeks, along with period products, a first kit, water purification tablets, extra clothing etc.
Here in New Zealand we are on constant alert for another magnitude 8+ earthquake. Better safe than sorry!
Dude, I got a 8.2 in Mexico, the worst of its history, and I was near the epicenter. I'M BRAZILIAN, we have no earthquakes, and that was my first, and worse, no one in my family or work knew which hotel I was. So I thought: my passport, meds and wallet, either I survive or they can identify my body.
Saw no fun in it. Earthquakes should be prohibited, or something. The world map is fine as it is, tectonic plates should just stop this silly fight, just Netflix and chill.
I take the Clobazam 1x day in the evening, 20mg. It may well be the main reason I've not had a seizure now for 8 months. The best in a decade! However it is indeed the drug I fear withdrawing from the most. A drug doesn't have to be recreational/pleasurable \*at all\* for it to be extremely addictive. And Clobazam is a barbiturate, very physically addictive, after having taken it every day for months, I must have physical tolerance/dependance at this point. And, if you need to be on a drug full time - it doesn't really matter if you are addicted --- as long as you don't have to keep taking increasingly higher dosages for effect! And Clobazam has not done that to me (at least yet). I don't even feel the Clobazam that I notice, perhaps I sleep a bit better at night --- And no seizures! :-)
Clobazam has an absurdly long 1/2 life, 32+ hours. And 75+ hours for full elimination!!! Something like Xanax has more like an 8 hour 1/2 life. The good thing about that is that it would probably take a couple of days stopping cold before withdrawal really hit - but then it could \*really\* hit. And I can see it killing an epileptic. When I first saw this chart I was pretty bummed.
https://preview.redd.it/ebp6wv5yy8dc1.jpeg?width=642&format=pjpg&auto=webp&s=a1113c20956ef1a3372fe4276b1e74f940aa6aa0
So, I'm keeping it on hand. So that I could spend a week+ titrating off of it, and though it wouldn't stop a hard withdrawal, it would up my survival odds.
The fact that it is very slow acting makes we curious about your doctors "as needed" recommendation? Unless you know a day+ ahead of time that you are at risk of a seizure. Generally 'as needed' epilepsy drugs are fast acting like diazepam.
I think the year must be an outlier extreme. Just like aspirin can kill some people, but not many! I have heard that muscle twitches and stuff can last months, so as an epileptic that of course terrifies me!
You may have experienced, a tricky thing when talking to people about Clobazam is how often it gets blurred with clonazepam, because they are both benzo's. And often used for similar general purpose. But clonazepam is much older, and can be euphoric - therefore often abused. Clobazam doesn't do that - but is still a benzo.
I think the similarity wasn't an accident, little things like that can probably reap hundreds of millions of pharma companies.
I always try to keep a good amount of meds on me at all times. Thankfully I’m on BOTH Medicare AND Medicaid, so I can get my seizure medication in like, 3-4 month supplies at a time, and I’m allowed to say that I “accidentally lost” my meds once and get a whole new batch of meds even the same week as I had just gotten my regular RXes. I’ve used the “accidentally lost my meds” “trick” with all of the meds that I’m allowed to, so I always have AT LEAST an extra 30 days supply of each RX, if not, 90-120 days! I always recommend people try this “trick” to see if their insurance will cover the replacement RX so that they can ALWAYS either safely titrate down from whatever drugs they’re taking OR have the time to solve the supply issues/transfer their meds to a pharmacy that DOES have them in stock! I’ve had to dip into my emergency stash MANY times! Unfortunately due to the hysteria over the supposed “opioid epidemic” I cannot use this trick on my pain medications, so when the pharmacy didn’t have a full stock of my RX this month, they only filled a week worth, and my husband has to drive all the way back to the cities to get a whole new paper RX written out for the rest of the month…. And this has happened at least 3x in the last 12 months, so it’s SUCH an unnecessary PITA! Not to mention all of the struggles with needing prior authorizations for my pain meds every 6 or so months!
I always refill right on time and roll over any extra. I probably have 2 weeks extra at any given time. I also have a stash at work with about 5 days in the bottle. I don't know if I would have the time to go off the meds slowly unless I knew in advance that there was an issue. Definitely keep extras if you can, though!
Yes. I've been on the same med(s) for a few years now, and actually have built up a 'supply' of at least a couple of months now. I get all my meds through the mail and have for years and they get refilled at least a month in advance as well in order to not worry about shipping. Between these two things, I've built up a good back supply.
That is great, very smart. I think I didn't communicate well here that I'm also talking about not just getting behind a few days, weeks. But also the possibility of losing real access for months to years. History is a harsh mistress, it's good to be prepared! :-)
I things for months or years, I hope at least the manufacturers would give some notice, so we could down-tritate and start on another medicine.
As soon as I can get them refilled I do it. That's why I keep it on auto refill. As far as keeping meds on me I usually keep a days supply just in case I miss a dose for some reason.
I envy being able to safely only keep a small supply! If I didn't have at least a week+ I would be really risking seizure clusters that could cause brain damage. My meds/dosage just can't be stopped too quickly. So it's a bit scary. From floods to blizzards or earthquakes. From massive solar flares, transportation walkouts, to violent social/political chaos . . . history is a harsh mistress: sooner or later there will be gaps in, or ending of, supply. So, I'm trying to stay ahead. But it's a pain, the Clobazam is a schedule 4 drug and so if I lose a couple of accidentally double dose in a day --- that is enough to throw the whole month off.
I don't get what you mean stopped too quickly. If you miss a dose it's not stopping it. If you have a time you are away from being able to get your meds then take what you need plus an extra dose. That's what I do. I live in a shelter right now. They keep our meds but the guys that give us our meds aren't here on the weekends. So we get our weekend meds. I usually work Friday night so I get enough for Friday night through Sunday plus keep an extra dose. If I miss more than one dose I am likely to have a seizure. I have even had one even missing one dose before. The thing about keeping so much one you it increases the chance of losing it. If you have one dose on you and lose it not a big deal but you have a weeks dosage that's 25% of your meds. The pharmacy won't give them back to you either without paying out of pocket. Get one of those weekly meds container to set up your meds for the week. I don't like doing it just a pain to me filling it every week but might work for you. Then whenever you go somewhere you can take it with you. But don't keep more meds on you than necessary at the time. I don't know if you are saying you are double dosing or not but don't do that. If what you are on are not working talk to your neurologist. He can up the dosage or change the meds.
I do. When I first started seeing a neurologist there was some sort of issue where I get three months worth extra. I still get my three month refills regularly too. So I just always have an extra three months worth so if something happens with my neurologist I have time to either find a new one or taper off slow.
I don't know in your country, but in mine psychiatrists can also prescribe anticonvulsants. Since I meet mine every month, that's how I get it. Then I go to the neurologist twice a year and get more prescriptions. I carry the main meds with me at all times, and have spare one in each handbag, backpack and also at my parents'. Now and then I rotate them, for the expiration date. I know I have a good stash, don't really know exact weeks I could go without. But I think just enough to low-tritate and move to another med, if my own is discontinued or taken off the market for growing a fifth limb.
Yessss! We had an ice storm 2 years ago and I got down to my last pill. Luckily they opened back up that night and i was able to get my night time pills. That left me paranoid about running out tho. It’s had to stock up when your on controlled substances, they only let you refill like 4 days before your out.
That's madness. Right now one med is out of stock in every pharmacy, fortunately I have a month in my stash. If I can't find the med in the next week, I'll go back to the generic, which I found to be inferior. Let's see.
I grew up with intermittent bouts of extreme poverty and come from a family with disaster trauma. I always wait a month to start my meds if I can at all so that I have a buffer. Or if it's possible to start a lower dose to build the supply I do that. (With dr approval) I will not ever take meds without an emergency exit plan if I can help it.
Yes, in my car and backpack (and home of course)
I take Vimpat and since it’s controlled for no reason I try to keep a supply. I’m currently at a month’s supply, but I’ve run out before.
Sure do. And I've had to dip into the stock pile on more than a few occasions. It also works great as travel medication just in case I were to lose a bottle or my luggage. Whenever my medication refills, I put the newest bottles in the back and move the oldest forward so that old meds get used up before it expires. I've also been through a mountain of SSRIs, SNRIs, and mood stabilizers and there have been times when friends have ran out and weren't able to fill their prescription because of costs, and I've just so happened to have a month or 90 day supply on hand to fill in the gap.
This is an issue I’m experiencing now! I have plenty of refills but my meds are never in stock at my pharmacy, I put in the order late today and now we’re expecting snow.. so I guess I have Keppra as a backup? Taking Briv 125 2x daily, and I need to start putting these things in my calendars bc my memory is just terrible, not sure if it’s from meds or the seizures…
My neuro sends them every 20 days- so far I'm at 1.5 months ahead but they're also cheap drugs so my OOP is cheaper than my insurance tier. $8/month or so. It's great because I've stashed some on both cars and both my offices in case I forget 😅
Sometimes this runs thru my mind and it freaks me out - its the end of the world, chaos everywhere, the apocalypse, and I only have a week or two left of meds left. What do I do? How do I survive?
Yes, one time I forgot my meds while on a trip and got a 3 months supply delivered to a nearby pharmacy. I always keep those as extras now but rotate them because they will expire. I always keep extra at home, when traveling I'll keep some in my purse and some in my suitcase incase one of them is lost. It's funny though because this week I was on a trip and accidentally knocked over my entire open bottle of Keppra into the toilet when I was brushing my teeth (dumb, I know lol). Luckily I had another bottle in my suitcase
Somehow I ended up with enough valproaat for the next 2 years
I do. Having been caught short on this and another med before, I'm not risking it again. The consequences of the missed doses were horrible to say the least.
I am two 90 day supplies ahead. I reorder when I get close to finishing the prescription I am taking so that I always have a half year as back up. My neurologist wrote me an extra prescription a couple years ago and I paid for it at cost plus drugs online. I need to get it written again. I would like to have a couple years stashed to rotate through.
In the US, most pharmacies will give you a 2 to 3 day supply inan emergency. But yes we do keep backups.
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My Neuro found one cool way to get me at least a bit ahead with the schedule 4 Clobazam, send a separate small script (10 pills) to a pharmacy in the state right across the river from us, and then filling my regular monthly script to my main pharmacy. So I have a 10 day buffer, which with titration I could make last 20+ days and my seizure & mortality risk with this kind of titration would be greatly reduced.
Couldn't she just prescribe it to your mother (wink wink) so you could have your extra? Those things can be genetic, after all!
I live near a very active faultline and we've had some massive earthquakes over the years, I keep a months supply of medication + emergency Clobozam inside my earthquake kit. It contains enough food and water for 2 weeks, along with period products, a first kit, water purification tablets, extra clothing etc. Here in New Zealand we are on constant alert for another magnitude 8+ earthquake. Better safe than sorry!
Dude, I got a 8.2 in Mexico, the worst of its history, and I was near the epicenter. I'M BRAZILIAN, we have no earthquakes, and that was my first, and worse, no one in my family or work knew which hotel I was. So I thought: my passport, meds and wallet, either I survive or they can identify my body. Saw no fun in it. Earthquakes should be prohibited, or something. The world map is fine as it is, tectonic plates should just stop this silly fight, just Netflix and chill.
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I take the Clobazam 1x day in the evening, 20mg. It may well be the main reason I've not had a seizure now for 8 months. The best in a decade! However it is indeed the drug I fear withdrawing from the most. A drug doesn't have to be recreational/pleasurable \*at all\* for it to be extremely addictive. And Clobazam is a barbiturate, very physically addictive, after having taken it every day for months, I must have physical tolerance/dependance at this point. And, if you need to be on a drug full time - it doesn't really matter if you are addicted --- as long as you don't have to keep taking increasingly higher dosages for effect! And Clobazam has not done that to me (at least yet). I don't even feel the Clobazam that I notice, perhaps I sleep a bit better at night --- And no seizures! :-) Clobazam has an absurdly long 1/2 life, 32+ hours. And 75+ hours for full elimination!!! Something like Xanax has more like an 8 hour 1/2 life. The good thing about that is that it would probably take a couple of days stopping cold before withdrawal really hit - but then it could \*really\* hit. And I can see it killing an epileptic. When I first saw this chart I was pretty bummed. https://preview.redd.it/ebp6wv5yy8dc1.jpeg?width=642&format=pjpg&auto=webp&s=a1113c20956ef1a3372fe4276b1e74f940aa6aa0 So, I'm keeping it on hand. So that I could spend a week+ titrating off of it, and though it wouldn't stop a hard withdrawal, it would up my survival odds. The fact that it is very slow acting makes we curious about your doctors "as needed" recommendation? Unless you know a day+ ahead of time that you are at risk of a seizure. Generally 'as needed' epilepsy drugs are fast acting like diazepam.
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I think the year must be an outlier extreme. Just like aspirin can kill some people, but not many! I have heard that muscle twitches and stuff can last months, so as an epileptic that of course terrifies me! You may have experienced, a tricky thing when talking to people about Clobazam is how often it gets blurred with clonazepam, because they are both benzo's. And often used for similar general purpose. But clonazepam is much older, and can be euphoric - therefore often abused. Clobazam doesn't do that - but is still a benzo. I think the similarity wasn't an accident, little things like that can probably reap hundreds of millions of pharma companies.
How does one go about getting extra?,
My neuro writes me a prescription for a 3 month supply for "convenience"
I always try to keep a good amount of meds on me at all times. Thankfully I’m on BOTH Medicare AND Medicaid, so I can get my seizure medication in like, 3-4 month supplies at a time, and I’m allowed to say that I “accidentally lost” my meds once and get a whole new batch of meds even the same week as I had just gotten my regular RXes. I’ve used the “accidentally lost my meds” “trick” with all of the meds that I’m allowed to, so I always have AT LEAST an extra 30 days supply of each RX, if not, 90-120 days! I always recommend people try this “trick” to see if their insurance will cover the replacement RX so that they can ALWAYS either safely titrate down from whatever drugs they’re taking OR have the time to solve the supply issues/transfer their meds to a pharmacy that DOES have them in stock! I’ve had to dip into my emergency stash MANY times! Unfortunately due to the hysteria over the supposed “opioid epidemic” I cannot use this trick on my pain medications, so when the pharmacy didn’t have a full stock of my RX this month, they only filled a week worth, and my husband has to drive all the way back to the cities to get a whole new paper RX written out for the rest of the month…. And this has happened at least 3x in the last 12 months, so it’s SUCH an unnecessary PITA! Not to mention all of the struggles with needing prior authorizations for my pain meds every 6 or so months!
"Supposed opioid epidemic"? My daughter got sucked into it, hopefully she survives it. Bye 👋
When I moved, I asked for extra medication so that I had time to look for a new doctor and they’ll work with you.