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Bubble

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Hi
Guess I'll introduce myself. I'm 23 years old, you may call me Bubble (they/them) and I have been diagnosed with epilepsy as a kid, when I was about 7 or 8 years old. Seizures usually only come when I'm sleeping, which makes coping with daily life fairly easy. There's exceptions to the rule though, like right now, I often get more seizures when I'm in pain, and I've fractured my leg two weeks ago. I also feel that exercise has a huge impact on the amount and intensity of seizures that I get, and whenever I'm injured, I can't exercise properly.

I'm on four medications at the moment, and increasing one of them, since I'd usually only get night-time seizures, I would only take them at night, but now that it's acting up, my doctor prescribed it for mornings as well. It's moments like these when I realize, that I'm incredibly lucky to only go through this at night. Just debating over getting dinner, or waiting if the feeling passes until morning, is such a mind fuck. I'm from Switzerland, so I'm not great with english terminology, but I get the "Aura" thingy 90% of the time, or more. So I know if there's a risk or not, but I don't know how big it is. And I hate asking for help, it's truly not something I'm great at.

I thought I'll come here and look for people who are going through the same, or similar things. I've been raised with the mindset of "Your epilepsy is a different kind from the others", have always been the odd one out or the "difficult case", and somehow I used to think that means I'm not one of you, or don't belong in this kind of community. If I ever say something hurtful, call me out on my bs, it's not my intention to do so.
 
I'm also fairly new here, but welcome to the site. If there's one thing I've learned since my diagnosis as an adult, it is that everyone's case does seem to be unique. This is a great site though, with lots of helpful people who have all kinds of experience.
 
True, I've also met a few people in clinics that had completely different types of neurological disorders, I might even know more of those, than I know anyone who's got textbook epilepsy. Thank you for the kind words. How are you doing? What brings you here?
 
Well, I had my first seizure, a tonic/clonic when I was around 3 or so. Then when I was around 9, I started having absence seizures. It took a while to get a diagnosis for those because they are so subtle and happened without warning. I was put on medication for that and eventually it stopped. Fast forward to now, at 42 years old I had another tonic/clonic seizure while driving home from work one day. I lost consciousness and my car crashed into a house, but luckily no one was hurt. After a bunch of testing, they gave me my diagnosis of epilepsy. As it turns out, I was having seizure activity for a couple years before this last tonic/clonic seizure (the auras were actually seizures, for me they were visual phenomena that cause temporary partial blindness. I didn't know what it was, other than it happened to me from time to time and I was always fully conscious and aware). Now that I'm on medication, I've been ok for almost 5 months now. I might have to take medication for the rest of my life to keep it under control, but my neurologist is still ordering more tests and investigating to try to find out what's going on in my brain.

It's not great, but I consider myself lucky. The hardest thing for me right now is figuring out how this diagnosis will affect the rest of my life and career, and how I can continue to support my family. I've been an auto mechanic for over 20 years, which isn't exactly an epilepsy friendly type of work. Still figuring things out... I found this site through a list of links from my local epilepsy society, and it's been a great place to get information and support.
 
That sounds like quite a journey. I can't imagine what it must feel like to crash into a house, I'm lucky to almost never get into accidents, as I know beforehand if there's a risk for a seizure within the next hour or so, and can just stay safe.

It's nice that you have such a dedicated neurologist though. I sometimes feel, that mine is trying to prescribe as many meds as possible, be it for research or higher income.

He's also been suggesting a VNS now, but I don't know anything about it, and won't go into invasive treatment without knowing what the risk factors might be.

I hope you can manage to keep your job. I get that it's not epilepsy-friendly, as you put it, but in my experience, I've had a lot less seizures when I was in a good mental headspace. And workplaces can have a huge impact on how you feel, as far as I can tell.
 
Hello, Bubble & welcome to CWE. You'll get a lot of info & help here. I've had epilepsy since childhood--wasn't diagnosed until I was 14. That's when an EEG done after some grand mal seizures captured what I kept describing as "weird/strange feelings in my head". It turned out that those feelings were simple partial seizures! Approximately 26 years ago, I began having complex partial seizures as well. I completed both an Associate's & a Bachelor's Degrees, but the complex partials have kept me from working.
These have been VERY PROBLEMATIC for me. Those occur w/o any aura, & unless there are witnesses, I'm unaware of their occurrence. When I am alone, I have to suddenly note a time gap, injure myself, do something to my surroundings to realize that one took place. Strange things have happened during some of them--for example, I've actually changed my clothes during them--twice, & I had ALREADY taken meds earlier in both cases!
I now take 300mg Xcopri & 500mg Zonisamide. I've noted that my seizures (despite taking meds) occur MOSTLY for 2 reasons. One is stress/tension, even if it is unfelt--the affects must accumulate, & cause a seizure. The other, which I've OFTEN noted AND warned family about, is EXTREME disruptions in my sleep/wake timings. After staying up late up late 1 night, staying up late the next night will cause seizures--even if eat ALL my meds AND sleep enough after the second night.
 
Hello Bubble, and everyone else.

I find this site to be a great place to learn, thank you to everyone that's using it.

My first seizure was a Tonic Colonic, December 9th 2020 at the age of 40, out of nowhere heading to my jeep to go for a ride with my wife and a friend, I woke up 20min down the hwy in an ambulance (We live 30min out of town, Cranbrook) my 2nd one January 1 2021 I only remember waking up in the emergency room, them telling me if I can get myself from one bed to the other I could go for an MRI, I could hardly move myself, but we made it happen, and I was diagnosed with Epilepsy, Its been a struggle. We put some puzzle pieces together an come to realize perhaps the weird things that were happening to me as far back as August 2020 were in fact focal aware seizures.

I've been on many medications in the past 5 years, some causing great side effects. Keppra 2000mg/d, oh the rage!, I truly believe it almost cost my marriage. Dilantin 700mg/d, diabetes insipdus, lucky I was not on it long and I kicked the diabetes a short time after getting off it. Currently I take 400mg 2x/d of Carbamazepine. 100mg 1x/d of Xcopri, as well 200 mg 1x/d of Xcopri, along with some antidepressants, vitamins and Ativan as a rescue drug, my days are horrible. My work told me I was a hazard to both myself and them if I continued to be there, June of 2024. I currently have roughly 1-2 Tonic Colonic, 4 focal both aware or unaware seizures a month, I've had many at work. I recently went through with an SEEG, and learn my best chances to eliminate my seizures is to remove my left temporal lobe, or an option for VNS for minimal effects. Now I need to figure out what I will do........

I am starting to believe my goals/hopes are unrealistic - I'd like for my wife not to worry about my epilepsy anymore, I don't want to be on these meds for the rest of my life, and it would be great to have a drivers licence again one day.

Cheers!
Andrew
 
Hello, Bubble & welcome to CWE. You'll get a lot of info & help here. I've had epilepsy since childhood--wasn't diagnosed until I was 14. That's when an EEG done after some grand mal seizures captured what I kept describing as "weird/strange feelings in my head". It turned out that those feelings were simple partial seizures! Approximately 26 years ago, I began having complex partial seizures as well. I completed both an Associate's & a Bachelor's Degrees, but the complex partials have kept me from working.
These have been VERY PROBLEMATIC for me. Those occur w/o any aura, & unless there are witnesses, I'm unaware of their occurrence. When I am alone, I have to suddenly note a time gap, injure myself, do something to my surroundings to realize that one took place. Strange things have happened during some of them--for example, I've actually changed my clothes during them--twice, & I had ALREADY taken meds earlier in both cases!
I now take 300mg Xcopri & 500mg Zonisamide. I've noted that my seizures (despite taking meds) occur MOSTLY for 2 reasons. One is stress/tension, even if it is unfelt--the affects must accumulate, & cause a seizure. The other, which I've OFTEN noted AND warned family about, is EXTREME disruptions in my sleep/wake timings. After staying up late up late 1 night, staying up late the next night will cause seizures--even if eat ALL my meds AND sleep enough after the second night.
Thank you for the response, Sabbo.
Being unaware of seizures sounds horrible, a friend of mine has that as well. It's impressive that you take your meds, while not really conscious. I'm usually always conscious, unless it's small enough not to wake me up, in which case I'd be sleeping.
I'll have to look up all the drug names, I only know the swiss terminology. I hope they are working for you at the moment.

On topic of causes: Yes! Stress is a huge amplifier for me. It might not always be the cause, although I find I have more intense seizures when I'm not doing well (it feels like such a joke, when you're not well, life just gives you more shit, as the cherry on top lol). I remember I had a medium size seizure a few years ago in hospital, and a nurse noticed and she was at a loss of what to do, and seemed angry that I couldn't stop it, which resulted in me panicking and the seizure lasting for a lot longer than it usually would.

As for sleep: It's very difficult to say, since I mostly just have them when I'm sleeping anyway, but when I studied for my finals, I had a sleep cycle of being up for 36 hours and then falling asleep for 12. I was so exhausted, that it worked. But usually, I also have a feeling I'm better off when I'm sleeping on a regular basis, especially since I have to take my meds when I'm going to sleep, so if I push that time around, it is messing with how the meds work.
Still, I've never been seizure-free for much over a week, if I'm lucky they're just rather small, more of an annoyance during sleep than anything to worry about. So it's hard to tell what makes it better or worse (unless of course I'm in pain already and get woken up properly by the seizures lol)
 
Hello Bubble, and everyone else.

I find this site to be a great place to learn, thank you to everyone that's using it.

My first seizure was a Tonic Colonic, December 9th 2020 at the age of 40, out of nowhere heading to my jeep to go for a ride with my wife and a friend, I woke up 20min down the hwy in an ambulance (We live 30min out of town, Cranbrook) my 2nd one January 1 2021 I only remember waking up in the emergency room, them telling me if I can get myself from one bed to the other I could go for an MRI, I could hardly move myself, but we made it happen, and I was diagnosed with Epilepsy, Its been a struggle. We put some puzzle pieces together an come to realize perhaps the weird things that were happening to me as far back as August 2020 were in fact focal aware seizures.

I've been on many medications in the past 5 years, some causing great side effects. Keppra 2000mg/d, oh the rage!, I truly believe it almost cost my marriage. Dilantin 700mg/d, diabetes insipdus, lucky I was not on it long and I kicked the diabetes a short time after getting off it. Currently I take 400mg 2x/d of Carbamazepine. 100mg 1x/d of Xcopri, as well 200 mg 1x/d of Xcopri, along with some antidepressants, vitamins and Ativan as a rescue drug, my days are horrible. My work told me I was a hazard to both myself and them if I continued to be there, June of 2024. I currently have roughly 1-2 Tonic Colonic, 4 focal both aware or unaware seizures a month, I've had many at work. I recently went through with an SEEG, and learn my best chances to eliminate my seizures is to remove my left temporal lobe, or an option for VNS for minimal effects. Now I need to figure out what I will do........

I am starting to believe my goals/hopes are unrealistic - I'd like for my wife not to worry about my epilepsy anymore, I don't want to be on these meds for the rest of my life, and it would be great to have a drivers licence again one day.

Cheers!
Andrew
Hello Andrew
I didn't know it could show up this late in life, that must be so disrupting. I get the "not being able to move" after a seizure. Even if it's just in bed, afterwards I feel like I got thrown over by a truck. I'm glad you got the diagnosis!

Oh yes, good old Keppra. I got it as a 10 year old, my poor parents had to deal with the side effects. I got off it soon after. I have found Briviact to help the same brain regions as Keppra, but with less intense side effects. (I'm not a neurologist, that's just what I was told and my experience).

That's a pretty high average in seizures, if it happens during the day. I'm sorry it's screwing with your workplace. Surgery has always been scary to me, I don't want people to poke around in my brain, but I know it can help some individuals, and it can also be done safely. I hope you figure out a treatment plan that works for you, but I also understand wanting to stay realistic and not get up the hopes too much.
 
Most AEDs have SOME annoying side effects. I've taken/tried SO MANY that the most common side effect--sleepiness--no longer affects me. When I started on the AED path, I only had simple partial seizures (the grand mal seizures happened over 1 or 2 nights--never again). While on phenobarbital I needed monthly blood tests--I'd joke w/the clinic's techs to stick a cork in my arm so they could easily take the blood needed. Now, I no longer feel it when lab tech poke me for blood.
I've actually made a list of EVERY AED I've taken, including when, my last (or highest) dose of each. I have had SEVERE allergic reactions to some. Xcopri is basically the 14th AED I've used, Zonisamide is #12. I tried Vimpat in between, but our insurance changed, & the new company wanted us to pay out of pocket for it--$1600! Others would work, keep me seizure-free for a max of about 6 months, & then the breakthroughs would start again, as if my brain "became immune" to them.
 
I feel like I might be the only person on here that hasn't had major problems with Keppra! I'm taking the generic version (simply called Levetiracetam), not sure if that makes a difference. I mean, when I first started taking it I was spaced out, dizzy and tired all the time, but that stopped after a while. I do find that I can get angry very easily, but I'm able to keep myself in check easy enough. I'm only taking 500mg twice per day though, maybe I'm at a low enough dose that it doesn't affect me as much. The question is, will it continue to be enough, or will my body become immune to it at some point, and then a change will be needed...

Catahoula / Andrew, Crankbrook BC? I'm in BC too! Vancouver area.
 
Most AEDs have SOME annoying side effects. I've taken/tried SO MANY that the most common side effect--sleepiness--no longer affects me. When I started on the AED path, I only had simple partial seizures (the grand mal seizures happened over 1 or 2 nights--never again). While on phenobarbital I needed monthly blood tests--I'd joke w/the clinic's techs to stick a cork in my arm so they could easily take the blood needed. Now, I no longer feel it when lab tech poke me for blood.
I've actually made a list of EVERY AED I've taken, including when, my last (or highest) dose of each. I have had SEVERE allergic reactions to some. Xcopri is basically the 14th AED I've used, Zonisamide is #12. I tried Vimpat in between, but our insurance changed, & the new company wanted us to pay out of pocket for it--$1600! Others would work, keep me seizure-free for a max of about 6 months, & then the breakthroughs would start again, as if my brain "became immune" to them.
Wow, 14 is a LOT. I tried counting, I might be missing a few, I'm not entirely sure what I got between the age of 7-10, but I'm counting eight, I think, currently taking 4. So far everything worked up until a certain point, but I also get 'immune' after a while. Unfortunately, if I try reducing it, seizures do increase, so that's a pain. I've been on vimpat as well, but it made my mind so foggy, I felt stupid all the time, like my IQ just dropped. Went back to normal as soon as I got off it though! Not sure if that's a similar experience that other people have as well. I'm lucky to live in Europe, so far insurance always covered everything, otherwise I'd be broke lol.

The most severe side effect was probably psychosis for me. I got it when I had to come off of Valium as a kid, and then again two years ago, after my one and only status epilepticus (not sure what you call that in english). They gave me Keppra and Vimpat, which I both had in the past and both reacted to badly. It took a month to come off them again, and I continued having psychotic episodes all throughout. Funny thing about it, for the most part I remember exactly nothing, (except for hallucinations of course) but when the neurologists were discussing the medication, after I got admitted to the ER, I heard them mention Keppra and Vimpat, and tried telling them that I'm allergic to both. I was only semi-conscious and halfway hallucinating, but according to family who was there at the time, I managed to say something like "No Keppra, no Vimpat".

They ignored it. At the time I didn't understand how they can make decisions like that and disregard what the patient is saying, but I got told that that's the only meds available who have immediate effect, and they did not want me to die. I guess that's fair enough, then.

As for sleepiness, I wish I knew how awake and focused I'd be without meds. I don't know, since I've been taking them for so long. I do know that I get tired more easily than others, and that my focus isn't the best, but there's also adhd and autism in the family (I'm not diagnosed, but on a waitlist, since 90% of my family are neurodivergent. Guess we all have silly brains).
I know that coming off of Oxcarbazepine had a huge impact. I took it for over a decade, and felt so much more energized after being done with it.
 
I feel like I might be the only person on here that hasn't had major problems with Keppra! I'm taking the generic version (simply called Levetiracetam), not sure if that makes a difference. I mean, when I first started taking it I was spaced out, dizzy and tired all the time, but that stopped after a while. I do find that I can get angry very easily, but I'm able to keep myself in check easy enough. I'm only taking 500mg twice per day though, maybe I'm at a low enough dose that it doesn't affect me as much. The question is, will it continue to be enough, or will my body become immune to it at some point, and then a change will be needed...

Catahoula / Andrew, Crankbrook BC? I'm in BC too! Vancouver area.
I'm glad it's not hitting you that hard. Just because you are able to manage the anger, doesn't mean it isn't exhausting though. I hope it lasts a while longer. Getting immune to meds sucks.
 
I feel like I might be the only person on here that hasn't had major problems with Keppra! I'm taking the generic version (simply called Levetiracetam), not sure if that makes a difference. I mean, when I first started taking it I was spaced out, dizzy and tired all the time, but that stopped after a while. I do find that I can get angry very easily, but I'm able to keep myself in check easy enough. I'm only taking 500mg twice per day though, maybe I'm at a low enough dose that it doesn't affect me as much. The question is, will it continue to be enough, or will my body become immune to it at some point, and then a change will be needed...

Catahoula / Andrew, Crankbrook BC? I'm in BC too! Vancouver area.
Yes, actually between Cranbrook BC and Skookumchuck at Wasa lake, we used to live on the North West coast of Vancouver Island, my wife was born and raised there. All my medical procedures and my neurologist is in Vancouver, quite a trip whenever required!
 
Hi Bubble,
Welcome to Coping With Epilepsy! I've had epilepsy for 53 yrs. I have had absence and complex partial seizures most of my life
but a few yrs. ago I started having seizures in my sleep and right before I went to bed long with aura seizures. I had a sleep study
done and they found out that I had sleep apnea and that's why I was having seizures in my sleep but then I was put on Vimpat
and that drug stopped that form of seizure. I've had brain surgery to reduce my seizures and I found out that I have more seizures
in the fall and winter compared to the spring and summer because there's less serotonin this time of the yr.

You may want to ask your Dr. to do a DNA test on you. By doing this they will draw blood and get some salvia from the
inside of your mouth. This goes to the lab where they will be able to see the amount of enzymes in your liver along with your
body chemistry and then the Dr. can match that up to the best seizure med for you with the least side effect. It worked great
for me because the Dr. found out I was drug resistant so I was told to start using the medical marijuana and that reduced my
seizures even more but it made me feel tired so I stopped using it. What I have found that works great is taking zinc 50 mg.
twice a day.

I wish you the best of luck and May God Bless You,

Sue
 
Hi Bubble,
Welcome to Coping With Epilepsy! I've had epilepsy for 53 yrs. I have had absence and complex partial seizures most of my life
but a few yrs. ago I started having seizures in my sleep and right before I went to bed long with aura seizures. I had a sleep study
done and they found out that I had sleep apnea and that's why I was having seizures in my sleep but then I was put on Vimpat
and that drug stopped that form of seizure. I've had brain surgery to reduce my seizures and I found out that I have more seizures
in the fall and winter compared to the spring and summer because there's less serotonin this time of the yr.

You may want to ask your Dr. to do a DNA test on you. By doing this they will draw blood and get some salvia from the
inside of your mouth. This goes to the lab where they will be able to see the amount of enzymes in your liver along with your
body chemistry and then the Dr. can match that up to the best seizure med for you with the least side effect. It worked great
for me because the Dr. found out I was drug resistant so I was told to start using the medical marijuana and that reduced my
seizures even more but it made me feel tired so I stopped using it. What I have found that works great is taking zinc 50 mg.
twice a day.

I wish you the best of luck and May God Bless You,

Sue
Hi Sue
Thank you for the answer. That sounds quite similar to my kind of seizures. I never heard of DNA tests helping with figuring out which drugs work, that sounds interesting, I'll have to look it up. I also figured out that Switzerland hasn't adapted all the practices that are being done in the UK and/or US, so I'm not sure if that's a procedure they have in place yet. They do test the drug levels in my blood though.

What made you think of zinc? I've only got a few supplements, zinc is not one of them, but I'm always interested with trying vitamins.
 
The very WORST meds for me was Tegretol (given after my grand mal seizures).
Tegretol caused an EXTREMELY severe reaction. I had a rash all over my body, very high fever, & itched it SO BADLY that I was like a fish out of water all over the hospital bed. What REALLY made that reaction worse is that it also caused me to lose 85% of my hair, which NEVER grew back! Even a dermatologist I saw couldn't understand it, saying that the follicles were open, just not producing hair. At the time, Rogaine was a prescription but would be a 100% out-of-pocket expense. IF it regrew any hair, that hair would fall out when stopped, so I never used it--plus there was the issue of possible interactions w/my AEDs.

Keppra simply caused such SEVERE cramps that I was doubled over in pain. Lamictil is another AED my neuros attempted to add but it turned out that I'm allergic to it because its chemically related to Tegretol. A few days after I started taking it, I began to feel the SAME type of rash beginning across my upper back. I quickly called my neuro's office, & he said to discontinue it, saying this AED was related to Tegretol.
 
Hi Sue
Thank you for the answer. That sounds quite similar to my kind of seizures. I never heard of DNA tests helping with figuring out which drugs work, that sounds interesting, I'll have to look it up. I also figured out that Switzerland hasn't adapted all the practices that are being done in the UK and/or US, so I'm not sure if that's a procedure they have in place yet. They do test the drug levels in my blood though.

What made you think of zinc? I've only got a few supplements, zinc is not one of them, but I'm always interested with trying vitamins.
Hi Bubble,

After I had been on so many different seizure meds my Epileptologist ordered a DNA test to be done on me. As long
as they can draw blood and get some salvia from you that's all it takes and it will go to the lab where they can see the
body chemistry of a person along with the amount of enzymes in the liver. The lab tech will give the Dr. the report and
the Dr. can find the best seizure med for a person or the test will show if a person is drug resistant.

In regards to the zinc my Epileptologist told me that this is one thing that could help stop some of my seizures so
started taking 50 mg. a day and it was a help but what has helped me even more is taking 2 Tablespoons of apple
cider vinegar with mother in it. The mother is a type of good bacteria and a good protein. I was using it to lose weight
but then I noticed my seizures decreased even more. My Epileptologist told me it will work for some people it all
depends on that persons body chemistry. I checked out YouTube and one person hasn't had a single seizure since
using the apple cider vinegar with mother. I wish you only the best and May God Bless You,

Sue
 
I'm sorry about the entire experience, especially the hair, that really sucks. I don't understand why you didn't get a prescription for anything to grow it back.

I'm all good with Lamictal, which is great because it has the least side-effects ever, but yes, apparently it can cause a deadly rash, so I'm glad your neuro stopped it!
The very WORST meds for me was Tegretol (given after my grand mal seizures).
Tegretol caused an EXTREMELY severe reaction. I had a rash all over my body, very high fever, & itched it SO BADLY that I was like a fish out of water all over the hospital bed. What REALLY made that reaction worse is that it also caused me to lose 85% of my hair, which NEVER grew back! Even a dermatologist I saw couldn't understand it, saying that the follicles were open, just not producing hair. At the time, Rogaine was a prescription but would be a 100% out-of-pocket expense. IF it regrew any hair, that hair would fall out when stopped, so I never used it--plus there was the issue of possible interactions w/my AEDs.

Keppra simply caused such SEVERE cramps that I was doubled over in pain. Lamictil is another AED my neuros attempted to add but it turned out that I'm allergic to it because its chemically related to Tegretol. A few days after I started taking it, I began to feel the SAME type of rash beginning across my upper back. I quickly called my neuro's office, & he said to discontinue it, saying this AED was related to Tegretol.
 
Hi Bubble,

After I had been on so many different seizure meds my Epileptologist ordered a DNA test to be done on me. As long
as they can draw blood and get some salvia from you that's all it takes and it will go to the lab where they can see the
body chemistry of a person along with the amount of enzymes in the liver. The lab tech will give the Dr. the report and
the Dr. can find the best seizure med for a person or the test will show if a person is drug resistant.

In regards to the zinc my Epileptologist told me that this is one thing that could help stop some of my seizures so
started taking 50 mg. a day and it was a help but what has helped me even more is taking 2 Tablespoons of apple
cider vinegar with mother in it. The mother is a type of good bacteria and a good protein. I was using it to lose weight
but then I noticed my seizures decreased even more. My Epileptologist told me it will work for some people it all
depends on that persons body chemistry. I checked out YouTube and one person hasn't had a single seizure since
using the apple cider vinegar with mother. I wish you only the best and May God Bless You,

Sue
Okay, I'll ask at my next appointment then, thank you!

Will definitely look into zinc, the apple cider vinegar mother seems far fetched, but if it helps, that all that matters. I'm glad you found something that works.
 
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