MemberI hope you're not sarcastic! I wrote that for new members who may not be familiar with it.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
I hope you're not sarcastic! I wrote that for new members who may not be familiar with it.
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Of course not.
I heard someone mention SF here and there but didn't know what they were talking about. I thought it was something possibly related to San Francisco but not Retigabine.
Of course not.
Yes modified version of retigabine, less side effects!
Music to my ears but unfortunately it doesn't look as if anyone is in any great hurry to start human trials!
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Yeah I have some music in my ears right now in the form of hissing.
It would be nice if they could modify Retigabine somehow? Maybe Otonomy's injections have a more likely potential to help us though.
Yeah I have some music in my ears right now in the form of hissing.
Let's call "an additional music" to an orchestra that we already have
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
I don't see why anyone would be in a hurry to make a loud obnoxious noise go away in their ear(s)/head?yes noone is in any hurry
Had a horrible day yesterday. Car stolen and I have to deal with it. T through the roof. Last night, woke up around 4 and could no longer sleep. Put some cricket sounds on. Decided I need a T break. Benzo or Trobalt? One hour ago, Took Trobalt 200 mg on empty stomach and took a shower (15 minutes). Afterwards my T was down from a 8/10 or 9/10 to a 2/10 or 3/10. My ultra-high pitch head sound is now more faint and covered by normal noise. My anxiety also went down and energy came back.
It is different from a benzo. A benzo makes you more high and does less on T. Of course a high dosage of valium kills T more or less completely.
But the Trobalt also gives me dizzyness. I am a little bit high. So I would say that Trobalt does something on T. And I can also say that I probably do not have a clinical depression. It is more mega T drilling in my head endlessly making life so hard.
It is different from a benzo. A benzo makes you more high and does less on T. Of course a high dosage of valium kills T more or less completely.
But the Trobalt also gives me dizzyness. I am a little bit high. So I would say that Trobalt does something on T. And I can also say that I probably do not have a clinical depression. It is more mega T drilling in my head endlessly making life so hard.
Yeah man , who wouldnt be down having the exploding head syndrome ?
When I get better days I am confident that I am not depressed, I start to plan all kinds of things and get super happy, which is depressing when it kicks back in .
And yes, Trobalt does without a doubt affect T , not because you are drugged and dont care as much.
When I get better days I am confident that I am not depressed, I start to plan all kinds of things and get super happy, which is depressing when it kicks back in .
And yes, Trobalt does without a doubt affect T , not because you are drugged and dont care as much.
Yes, but after some time you don't know yourself anymore, if you have a "normal" anxiety order and depression or if it is reactive to T. People tell you T cannot be that bad, so it must be something else. I also immediately got energy and started doing things. So we must get rid of this somehow. I hope Trobalt works for you. BTW it lasted 2-3 hours and then T was back in all its glory.
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
@Martin69 Why don't you take valium more often then? It would seem to me a lot safer than Trobalt. I don't have any experience taking Trobalt though.
Addiction and Tolerance.
In the beginning of T, my GP gave me valium infusions.
Calmed me and T completely down.
- Jan 25, 2013
- 3,596
- Tinnitus Since
- 2008
- Cause of Tinnitus
- TMJ disorder, airplane barotrauma, noise exposure.
Is that a IV of valium of some kind or a injection? Don't regular 5mg tablets work for you?
We go little bit off-topic here, but anyway. I don't know exactly what it was. It was an injection/infusion, a bottle of something they let run into my arm for about one hour. I don't know how much Valium it was, maybe 5 or 10 mg. I was completely calm and T was nothing. Yes, a valium tablet would do the same I guess. From time to time, I take 0.5 or 1 mg lorazepam.
It is saline infusion with 10mg of valium (I think). Often prescribed in Germany for t spike in hospitals. Also there is often add of some glutation (main part of NAC) in infusion.
Hi all folks, I was last couple of days thinking in some facts and trying to connect them all together, now it all makes more sense to me. I will divide my thinkings in sectios to make it easier to read and connect
Introduction
Well, all began when i was looking for an online tone generator. I found this one, quite simple http://plasticity.szynalski.com/tone-generator.htm, luckily I readed all text and followed the link wich got me to "Plasticity", wich is a "game for tinnitus" wich was already posted in TT. (I want to thank Tomasz P. Szynalski for making this game) Well, the most important is the base of why he made this game, the reason is in this article about Tinnitus and the Tonotopic map in auditory cortex.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC21510/
I guess it was shared before somewhere else in TT. Note this text explains two of the main causes of Tinnitus (trauma and deafness)
Thanks to Neuromagnetic Source Imaging we have a scientific proof that some changes happens in the auditory cortex (tonotopic map) on tinnitus sufferers.
Tinnitus and learning
From my point of view, tinnitus is nothing else than a LEARNING.
Regardless of the cause of your tinnitus, once you got it for a long time, it will stay there even if the cause disappears. Why? Because your neurons leartn to receive a 24h sound and now they can't live without it, they will miss it so much that they will complain in this way. If you give them this sound (your T frequency) they stop for a while, this is my hypothesis of residual inhibition, but nobody knows for sure why it works
A learning can be good for us or bad. For example, someone can learn to drive in Australia, that is there is a good thing. But then if this person moves to Germany for example and starts driving in an empty road, probably it will do it on the left lane and have an accident. It woulded be better to learn nothing and start learning in Germany. I know a real case of motorbike accident caused by this same example.
What im trying to say is that it quite difficult to dis-learn something, but its easier to learn something similar that makes you forget about it. Thats why i believe that ACRN or this game Plasticity CAN work to alliviate tinnitus. Now the problem is that someone wich had tinnitus for long time, that tinnitus or "bad learning" is quite Hard Wired. So we either will need: 1.- a lot of time 2.- some trick or help to dislearn and learn faster (here comes the next section)
Learning and Trobalt
Many member of Tinnitus Talk, me included have experienced and concluded that trobalt temporary lessens or erradicates the tinnitus level. But this doesnt mean that an rewiring in auditory cortex is happening, its more simple, it just calms the neurons in the area so we feel relief. It not only calms the neurons in auditory cortex, but also in many other areas in the body and brain (everywhere we have KV 7.1-7.5 channels expressions, bladder included). To have a permanent improvement we would need a rewiring, and its effect is just calming neurons, so why the hell I am writing about trobalt here? Because i believe trobalt helps to forget bad learnings and learn new ones. If that motorbike driver had some Trobalt before driving in Germany maybe he woulded avoid the accident. Here is why I believe that Trobalt helps in learning and also helps to un-learn bad learning:
Ok, and now what?
Why I'm writing all the text above? First to understand better what tinnitus is, and secondly probably you are guessing already.
The idea I have in mind is that combining at the same time sound therapies with Trobalt will be much more effective to permanently lessen tinnitus than each one separatedly. Sound therapies are for persons who have a pure tone tinnitus.
Wich are the sound therapies we have? As i know, there are three, i will try to exaplain
1. Residual inhibition: The idea is to play the same frequency of your tinnitus at the same volume for some seconds and then stop it. This makes you some moments of silence. In my case if I use with Trobalt, its makes a big difference and i can reach total silence for longer time, like one minute or so and then slowly comes to baseline. Nobody knows for sure why is this working and if it helps to a permant cure, but for sure is a good relief. I exposed my hypothesis about this previously
2. ACRN: http://generalfuzz.net/acrn-hifreq/ I didn't read much about this so better read in the web to understand how it works. I will just tell my experience: I tried only yesterday but i will continue because i had good results. While residual inhibition maked me silence for a little time, this kind of "breaks the tone" converting a pure tone in white noise. When you play ACRN you will listen 2 tones below your T frequency and 2 tones above in a sequency, it sounds like a strange music. My experience: breaked my tone for much longer time than residual inhibition
3. Plasticity game: http://plasticity.szynalski.com/ I still didn't try this. Game is simple: 2 similar frequencies will be played and you have to say if they are the same or not. Its based in a good scientific theory and its meant to make a real rewiring in the auditory cortex, i will try soon.
My opinion about this therapies: this is just my opinon: while I think methods number 2 and 3 probably will produce a real rewiring, or un-learn tinnits. About number 1 (RI) im not sure, as it just seems to give the neurons what they expect, so they calm down for some time.
All are focused for people with a pure tone tinnitus (per ear), so if you have many tones, or your tones are above the audible spectrum, you are not lucky for this treatment. If you have few tones, like 2 or 3 maybe you can treat them separately
Some other thoughts
I think that many of us, me included, have been a little closed-minded about tinnitus as we were focusing only in calming down the nervious system, just because it works temporary we thought it will work permanently. When we reach a calmed state, T will also calm down because all neurons have less activity, but it does mean that a rewiring is happening, so when stress comes back we are exactly like before.
Now maybe I understand better my case: when my T started it was a very low hissing, and probly me and my attitud towards it made it a bit louder because when it started I was paying a lot of attention to it, so this behavior made the neurons in auditory cortex more excited, specially the ones surrounding my T frequency, nowadays is more like a pure tone. Maybe if I didnt give a fuck about it when started it woulded disappear. I noted many of the people with T are the kind of perfeccionist and not exactly dumb ones. I have four close friends with tinnitus and curiously all of them have a good position in their jobs, its that a coincidence?
My experience
I came to this conclusions yesterday so unfortunately I have just one day experience, it worked quite good i would say. My plan is to do sessions of 20 to 60 minutes before going to sleep. Take 300mg of Trobalt and listen to ACRN at the same time. On the last months, for some unknown reason my tinnitus changed. It almost disappeared from left ear, and right ear became more tonal, so i will try to apply only to my right ear. Having one single tone as i do is the best to use sound therapy. I also plan to play plasticity game and see if i have an improvement over days. I will keep posting. Hope this post helps in some way. My T frequency is 4K, wich is totally audible for me, i discard deafness in that frequency as a cause.
Introduction
Well, all began when i was looking for an online tone generator. I found this one, quite simple http://plasticity.szynalski.com/tone-generator.htm, luckily I readed all text and followed the link wich got me to "Plasticity", wich is a "game for tinnitus" wich was already posted in TT. (I want to thank Tomasz P. Szynalski for making this game) Well, the most important is the base of why he made this game, the reason is in this article about Tinnitus and the Tonotopic map in auditory cortex.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC21510/
I guess it was shared before somewhere else in TT. Note this text explains two of the main causes of Tinnitus (trauma and deafness)
Thanks to Neuromagnetic Source Imaging we have a scientific proof that some changes happens in the auditory cortex (tonotopic map) on tinnitus sufferers.
Tinnitus and learning
From my point of view, tinnitus is nothing else than a LEARNING.
Regardless of the cause of your tinnitus, once you got it for a long time, it will stay there even if the cause disappears. Why? Because your neurons leartn to receive a 24h sound and now they can't live without it, they will miss it so much that they will complain in this way. If you give them this sound (your T frequency) they stop for a while, this is my hypothesis of residual inhibition, but nobody knows for sure why it works
A learning can be good for us or bad. For example, someone can learn to drive in Australia, that is there is a good thing. But then if this person moves to Germany for example and starts driving in an empty road, probably it will do it on the left lane and have an accident. It woulded be better to learn nothing and start learning in Germany. I know a real case of motorbike accident caused by this same example.
What im trying to say is that it quite difficult to dis-learn something, but its easier to learn something similar that makes you forget about it. Thats why i believe that ACRN or this game Plasticity CAN work to alliviate tinnitus. Now the problem is that someone wich had tinnitus for long time, that tinnitus or "bad learning" is quite Hard Wired. So we either will need: 1.- a lot of time 2.- some trick or help to dislearn and learn faster (here comes the next section)
Learning and Trobalt
Many member of Tinnitus Talk, me included have experienced and concluded that trobalt temporary lessens or erradicates the tinnitus level. But this doesnt mean that an rewiring in auditory cortex is happening, its more simple, it just calms the neurons in the area so we feel relief. It not only calms the neurons in auditory cortex, but also in many other areas in the body and brain (everywhere we have KV 7.1-7.5 channels expressions, bladder included). To have a permanent improvement we would need a rewiring, and its effect is just calming neurons, so why the hell I am writing about trobalt here? Because i believe trobalt helps to forget bad learnings and learn new ones. If that motorbike driver had some Trobalt before driving in Germany maybe he woulded avoid the accident. Here is why I believe that Trobalt helps in learning and also helps to un-learn bad learning:
· First "just a clue", for some reason, residual inhibition works much much better when on trobalt. The same for ACRN.
· If you have read my posts in "Trobalt user experiences", you will know this. Trobalt kind of "removes" any automated learning when it hits you. Examples of "automated learning": those who you can do automatically without thinking on it: Tie showlaces, play the guitar, rollerskate tricks, put-on clothes, etc....and Tinnitus also included. It puts your brain in a state able to learn new things not being interfered by the previous learning. You feel like a child, full of emotions. Emotions and learning are very connected, you need some emotion to learn something. You might heard of many people having tinnitus in a time of emotional traumas. When Im high on Trobalt, thousands of new ideas come to my mind, because its not Limited by my believes or previous learnings, my mind is more free, as i said like child's one
· Now i will connect 2 facts: You may know already, to be able to learn, your mind must be rested, that is after sleep or a nap is the best moment to learn new things. Fact number 2: Many trialees of Trobalt complained that it's effects hits quite randomly, but specified that curiously always hits harder in the morning. For me, its not random at all and i will explain why: It hits you "harder" when you are well rested (ready to learn), that is after sleeping, yeah normally in the morning. Im 100% convinced because i tried many times. When i took it on a Monday after work+gym(wasted), its does nothing to me even 300mg. Monday i work 1h more than other days, and its after weekend so probably i slept less. If i take only 100mg on a Saturday morning after a long sleep it hits me harder than the 300mg of any Monday night. Its very important to have a good rest
· Last night I was testing if my hypothesis is true, I was trying to remember all moments when i was high on Trobalt. I could remember all of them very very good. Specially the ones on wich i had a good rest, for example when i had holidays and i was traveling.
· Another experience i had on Trobalt: one time I took 400mg, the highest I took on single dose. I played crickets to see what was the minium masking level, well after stop the sound, i was still hearing the crickets for some seconds. My neurons learnt to play this sound and totally forgot the tone of my tinnitus. This hardly can happen without Trobalt
· Another Trobalt fact that reinforces my theory that it helps to un-learn bad learnings. When I had a bad day, let say a day i did something wrong or i feel bad about something, that day when you cannot stop thinking in that thing that worries me.. If i take Trobalt, I will forget that much easily and i will be able to think about other new not connected things. Thats why many people reported that trobalt helps to habituation, it breaks the link between Tinnitus and bad feeling. Besides it helps because it removes any piece of stress.
· If you have read my posts in "Trobalt user experiences", you will know this. Trobalt kind of "removes" any automated learning when it hits you. Examples of "automated learning": those who you can do automatically without thinking on it: Tie showlaces, play the guitar, rollerskate tricks, put-on clothes, etc....and Tinnitus also included. It puts your brain in a state able to learn new things not being interfered by the previous learning. You feel like a child, full of emotions. Emotions and learning are very connected, you need some emotion to learn something. You might heard of many people having tinnitus in a time of emotional traumas. When Im high on Trobalt, thousands of new ideas come to my mind, because its not Limited by my believes or previous learnings, my mind is more free, as i said like child's one
· Now i will connect 2 facts: You may know already, to be able to learn, your mind must be rested, that is after sleep or a nap is the best moment to learn new things. Fact number 2: Many trialees of Trobalt complained that it's effects hits quite randomly, but specified that curiously always hits harder in the morning. For me, its not random at all and i will explain why: It hits you "harder" when you are well rested (ready to learn), that is after sleeping, yeah normally in the morning. Im 100% convinced because i tried many times. When i took it on a Monday after work+gym(wasted), its does nothing to me even 300mg. Monday i work 1h more than other days, and its after weekend so probably i slept less. If i take only 100mg on a Saturday morning after a long sleep it hits me harder than the 300mg of any Monday night. Its very important to have a good rest
· Last night I was testing if my hypothesis is true, I was trying to remember all moments when i was high on Trobalt. I could remember all of them very very good. Specially the ones on wich i had a good rest, for example when i had holidays and i was traveling.
· Another experience i had on Trobalt: one time I took 400mg, the highest I took on single dose. I played crickets to see what was the minium masking level, well after stop the sound, i was still hearing the crickets for some seconds. My neurons learnt to play this sound and totally forgot the tone of my tinnitus. This hardly can happen without Trobalt
· Another Trobalt fact that reinforces my theory that it helps to un-learn bad learnings. When I had a bad day, let say a day i did something wrong or i feel bad about something, that day when you cannot stop thinking in that thing that worries me.. If i take Trobalt, I will forget that much easily and i will be able to think about other new not connected things. Thats why many people reported that trobalt helps to habituation, it breaks the link between Tinnitus and bad feeling. Besides it helps because it removes any piece of stress.
Ok, and now what?
Why I'm writing all the text above? First to understand better what tinnitus is, and secondly probably you are guessing already.
The idea I have in mind is that combining at the same time sound therapies with Trobalt will be much more effective to permanently lessen tinnitus than each one separatedly. Sound therapies are for persons who have a pure tone tinnitus.
Wich are the sound therapies we have? As i know, there are three, i will try to exaplain
1. Residual inhibition: The idea is to play the same frequency of your tinnitus at the same volume for some seconds and then stop it. This makes you some moments of silence. In my case if I use with Trobalt, its makes a big difference and i can reach total silence for longer time, like one minute or so and then slowly comes to baseline. Nobody knows for sure why is this working and if it helps to a permant cure, but for sure is a good relief. I exposed my hypothesis about this previously
2. ACRN: http://generalfuzz.net/acrn-hifreq/ I didn't read much about this so better read in the web to understand how it works. I will just tell my experience: I tried only yesterday but i will continue because i had good results. While residual inhibition maked me silence for a little time, this kind of "breaks the tone" converting a pure tone in white noise. When you play ACRN you will listen 2 tones below your T frequency and 2 tones above in a sequency, it sounds like a strange music. My experience: breaked my tone for much longer time than residual inhibition
3. Plasticity game: http://plasticity.szynalski.com/ I still didn't try this. Game is simple: 2 similar frequencies will be played and you have to say if they are the same or not. Its based in a good scientific theory and its meant to make a real rewiring in the auditory cortex, i will try soon.
My opinion about this therapies: this is just my opinon: while I think methods number 2 and 3 probably will produce a real rewiring, or un-learn tinnits. About number 1 (RI) im not sure, as it just seems to give the neurons what they expect, so they calm down for some time.
All are focused for people with a pure tone tinnitus (per ear), so if you have many tones, or your tones are above the audible spectrum, you are not lucky for this treatment. If you have few tones, like 2 or 3 maybe you can treat them separately
Some other thoughts
I think that many of us, me included, have been a little closed-minded about tinnitus as we were focusing only in calming down the nervious system, just because it works temporary we thought it will work permanently. When we reach a calmed state, T will also calm down because all neurons have less activity, but it does mean that a rewiring is happening, so when stress comes back we are exactly like before.
Now maybe I understand better my case: when my T started it was a very low hissing, and probly me and my attitud towards it made it a bit louder because when it started I was paying a lot of attention to it, so this behavior made the neurons in auditory cortex more excited, specially the ones surrounding my T frequency, nowadays is more like a pure tone. Maybe if I didnt give a fuck about it when started it woulded disappear. I noted many of the people with T are the kind of perfeccionist and not exactly dumb ones. I have four close friends with tinnitus and curiously all of them have a good position in their jobs, its that a coincidence?
My experience
I came to this conclusions yesterday so unfortunately I have just one day experience, it worked quite good i would say. My plan is to do sessions of 20 to 60 minutes before going to sleep. Take 300mg of Trobalt and listen to ACRN at the same time. On the last months, for some unknown reason my tinnitus changed. It almost disappeared from left ear, and right ear became more tonal, so i will try to apply only to my right ear. Having one single tone as i do is the best to use sound therapy. I also plan to play plasticity game and see if i have an improvement over days. I will keep posting. Hope this post helps in some way. My T frequency is 4K, wich is totally audible for me, i discard deafness in that frequency as a cause.
I just had the most weird side effect while taking trobalt I have myopia or nearsighted (slight), just took 300 mg of trobalt (1000 mg per day) and it was completely gone for 10 minutes, now it's fluctuating with my tinnitus between perfect vision and how it was before. Very weird indeed. In case you are wondering how I know I have 20/20 in the left and slight myopia in the right -0.5. so I just compare eyes.
Nice ideas Juan, but far as i know, there is no one cured from t with sound therapy, even clinics that do sound therapy, state that their goal is to habituate person with his t, not to cure him from having any sound.
On the other hand, we have seen people here mpt, presley (anecdotal or not) that have cured themself with trobalt.
So, combination of those two can not be wrong for sure, but I have doubts that sound therapy can produce any permanent effect in dismissing t.
That short lasting effect is offten I suppose, i have it whtout trobalt after listening ACRN, (suppose many here have) but it is short, in my opinion and feeling without any prospect in permanent possibilities...
But for sure, good luck Carlos, and share updates here on TT!
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Sound ACRN therapy with trobalt had much better and lasting effect than trobalt, provided to listen sounds 1h after trobalt hit you. I wrote about it.
Problem is that ACRN does not function with t over 10khz so what one can listen is just external stimuli same as tinnitus. And say brain you heare fake thing. ACRN producer said they dont offer help over 10khz and charge 4000€.
What many do not understand is that we are all different, our t is different, freq are different, subtypes. For GOD SAKE it is computer motherboard, any curcit can brake and there are million of types of boards , there is no single solution.
As noticed one good solution might help 5% population who have 3 factors as why they have t same.
my oppinion.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I would like you to know i stopd trobalt 10 days, and I am on keppra, and higher dosage that i am lowering now of benzos. I restarted trobalt 2 day ago and here is my new report. I know you will maybe say wow but I say my report is of right this second.... lvl 3/10
https://www.tinnitustalk.com/thread...ga-—-user-experiences.6047/page-8#post-153327
https://www.tinnitustalk.com/thread...ga-—-user-experiences.6047/page-8#post-153327
I have also had this experience of hearing my bathroom fan that makes a screeching sound for a few minutes after turning it off. weird ?
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
the day after the first day I took Trobalt, I had absolutely ridiculous reactive tinnitus, unlike anything I've had before or since -- so it doesn't surprise me to hear this. I totally believe that trobalt is directly interacting with the tinnitus machinery, but without more data, that feels pretty fucking dangerous to me.
As with any medication - if you take enough of it - death is the worst that can happen and so far it has proven to be irreversible.
No but seriously. Just google "Trobalt" it's right there.
http://www.ema.europa.eu/ema/index....5/human_med_001431.jsp&mid=WC0b01ac058001d124
so, if i understand, after a 10 day break and come back to trobalt, your T level dropped from level 13 to 3?
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
If you would take...I don't know...10 000 mg in one dose! I'm sure it would kill you, or at least get very close to death. Every drug has a dose where it turns lethal. They actually test this out in animals before starting trials with people. Just so they can be pretty sure they're playing in the safe zone.
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Can't argue against that. This is the only thing we can be sure of in regards to tinnitus and retigabine.
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