Try sticking with the facts and maybe more people will listen...No problem...I just want to help people, I wish they would listen! I am super happy it works for you.
Try sticking with the facts and maybe more people will listen...No problem...I just want to help people, I wish they would listen! I am super happy it works for you.
Try sticking with the facts and maybe more people will listen...
@Zechariah Sometimes there are no hard and fast facts with such a tricky affliction. Sometimes all we have to go on is anecdotal evidence. If someone gets relief from a treatment, it is normal to want to share it with others.
Yes, but I'm not talking about anecdotal evidence. Danny Boy just states that AUT00063 will be fast tracked even though the authorities haven't said anything which would confirm that. Only thing we have is that Autifony "wishes" it to be fast tracked. And we don't even know if the drug works. These are the facts and therefore you can't say anything like "AUT00063 will be fast tracked".
"Fast track designation is designed to aid in the development and expedite the review of drugs which show promise in treating a serious or life-threatening disease and address an unmet medical need.
Serious Condition: Determining whether a disease is serious is a matter of judgment, but generally is based on whether the drug will have an impact on such factors as survival, day-to-day functioning, or the likelihood that the disease, if left untreated, will progress from a less severe condition to a more serious one.
Unmet Medical Need: For a drug to address an unmet medical need, the drug must be developed as a treatment or preventative measure for a disease that does not have a current therapy. The type of information necessary to demonstrate unmet medical need varies with the stage of drug development: early in development, nonclinical data, mechanistic rationale, or pharmacologic data will suffice; later in development, clinical data should be utilized. If there are existing therapies, a fast track eligible drug must show some advantage over available treatment, such as:
- Showing superior effectiveness
- Avoiding serious side effects of an available treatment
- Improving the diagnosis of a serious disease where early diagnosis results in an improved outcome
- Decreasing a clinically significant toxicity of an available treatment
- Addressing an expected public health need"
The true test will be if the h stays gone after you stop keppra.@Zechariah Sometimes there are no hard and fast facts with such a tricky affliction. Sometimes all we have to go on is anecdotal evidence. If someone gets relief from a treatment, it is normal to want to share it with others. @Danny Boy is trying to offer his experiences to help others. He has also posted research studies and abstracts. Many people on this forum seem to attack those who want to help. These attacks are not productive at all. This is a "support" forum above all.
@Geo I would use caution on mixing the two until you see how you respond. Just my opinion, though.
First up...I am going to now presume two things regarding KEPPRA THREADS:
1. That this, here, is the main thread for reporting on Keppra and its relationship to "Hyperacusis".
2. That this: https://www.tinnitustalk.com/threads...ible-potassium-channel-modulator.7295/page-11 is the main thread for reporting on Keppra and its relationship to "Tinnitus".
Clearly there will be some overlap, but hopefully, we will have more continuity in Keppra reporting than having it spread over numerous places (like in the: "On Retigabine" thread, etc.). I hope that meets with general approval, as I have had a tedious time trying to find it all...Thanks!
@Zimichael I appreciate your difficulty trying to get a "fix" regarding my "situation." It is a complex case for sure, and I have been living it for far too long. I, too, am a stickler for hard proof and controlled data, being a researcher and professor myself. However, I have found that with this affliction, anecdotal evidence is something that one cannot ignore. And often it is all you are going to get.
Before taking Keppra, nothing would touch my hyperacusis. It was severe all of the time. Even the sound therapies made it worse. I was skeptical that the Keppra was making a difference too, given the complexity of my case. So I went without it for 24 hours and had a resurgence of hyperacusis symptoms. Given the short half life of Keppra, I thought that it might have been suppressing the symptoms. My neuropharmacologist friend concurred.
Since being back on Keppra, my hyperacusis is stable, and my tinnitus is extremely fragile (fragility that I attribute to the surgeries). Of course, one size does not fit all, and there is not hard proof data here, or a clinical trial. However, I would not have posted on this thread if I thought Keppra did not have an effect on my hyperacusis. There is mostly anecdotal evidence on many of the threads on this Forum. People are sharing their experience, strength, and hope for others to take or leave as they wish. I have no problem with anyone discounting me, because of lack of hard proof. I am just sharing my experience.
But if I feel better, and it is not the Keppra, I would still take a placebo over hyperacusis any day of the week. My researcher friends, who know me well from being a reviewer for peer-reviewed journals for several decades cannot believe I am saying this. I guess it is hard for me to believe too. I look forward to hearing how Keppra works for you. Best of luck to you!
knowing that keppra helped someone else gives me great joy... i just want to take it already..too bad i stopped i shouldved just cut the dose like you it probably woulve'd relieved my H by now@Zimichael My dose is extremely low. I am taking 250 mg in the morning and 250 mg in the evening. I started at 500 mg once a day and quickly went up to 500 mg BID, and the side effects were driving me into the ground! But I was noticing a change, a real benefit from the drug that I did not want to give up. Quite a dilemma. My neuropharmacologist recommended cutting the dose in half to see what happens. And viola -- I started to accommodate to the side effects. He also recommended titrating up very, very slowly, not a quick jump. I plan to increase by 250 mg after two weeks to see if there is an increase in benefit. I know you are a small person too, so a slow titration may help if you are experiencing side effects. I am 12o pounds and 12% body fat, as a former marathon runner. Not all physiology is created equal! I will be interested in hearing about your progress. Best of luck.
Good morning Keppra Klatch participants. I just thought I'd give a weekly update on my Keppra experience. I am still on a low dose of Keppra, and my hyperacusis continues to be greatly reduced, and without the original side effects from the higher dose. I do think that the dose needs to be adjusted according to one's size. It says on the Keppra insert that dosage is dependent on weight in children. It could be possible that this dosage adjustment also applies to small adults. I am a small person.
Before Keppra NOTHING would touch my H, I kid you not! This is coming from someone who could not be in the same room with someone eating toast! We ate off of paper plates, because the sound of the fork touching the plate was excruciating. And I could not handle the sound of an ice cube clinking against a glass. Painful beyond belief!
Yesterday I walked around a busy, bustling village, with church bells chiming, children screaming, and people rolling huge trash bins along the street. There were loud trucks and chairs being scraped across the concrete. My husband immediately put his hands over my ears at every sound, but when I said "no, that sound didn't hurt," his jaw dropped. The only noise that hurt my ears was a high-pitched barking dog in close proximity. Now that really hurt!
I was able to RIDE IN THE CAR to a place I call "my thoughtful spot" just in time to see the Orca whales passing through on their way south to Salmon Banks. I watched a family of otters teaching their young to fish. Keppra has made it possible for me to "boldly go" out to places, where in the recent past I did not dare.
I know that Keppra is not for everyone, nor do I know if the effects will be lasting once I discontinue use. I also know there are many variable involved in this diabolical affliction. For now, I believe that Keppra is playing a role in treating my hyperacusis, and for that I am grateful. It has given me a new lease on life. I am sharing this for anyone who might be interested. I am not claiming a panacea. Take what you like and leave the rest. I am still keeping my fingers and toes crossed for everyone here that you will find some relief from this beast. Best of luck!
knowing that keppra helped someone else gives me great joy... i just want to take it already..too bad i stopped i shouldved just cut the dose like you it probably woulve'd relieved my H by now
see bro i wasnt lying about the horrific ear aches i should of just dosagged down.. nothing yet..i increased it by 100 today 200-200-100..maybe when i get to a higher dosage ill feel something. no bad side effectsI did tell you it could work...I'm sorry it gave you pain...I just wanted you to get better. Is trobalt working?
see bro i wasnt lying about the horrific ear aches i should of just dosagged down.. nothing yet..i increased it by 100 today 200-200-100..maybe when i get to a higher dosage ill feel something. no bad side effects
so if itll work ill be too high to do stuff??You'll get the drunkenness sedation feeling at higher doses and I do believe you about the ear pain, just a shame.
so if itll work ill be too high to do stuff??
that sucks im a active person not so much lazy before this happened lolWell, it'll basically help with sleep...400mg will do that. Just wait until you do, you get that sedated feeling with super low tinnitus. So great.
that sucks im a active person not so much lazy before this happened lol
Im happy youre doing so well. Thanks for keeping us updated, Please keep them coming !Good morning Keppra Klatch participants. I just thought I'd give a weekly update on my Keppra experience. I am still on a low dose of Keppra, and my hyperacusis continues to be greatly reduced, and without the original side effects from the higher dose. I do think that the dose needs to be adjusted according to one's size. It says on the Keppra insert that dosage is dependent on weight in children. It could be possible that this dosage adjustment also applies to small adults. I am a small person.
Before Keppra NOTHING would touch my H, I kid you not! This is coming from someone who could not be in the same room with someone eating toast! We ate off of paper plates, because the sound of the fork touching the plate was excruciating. And I could not handle the sound of an ice cube clinking against a glass. Painful beyond belief!
Yesterday I walked around a busy, bustling village, with church bells chiming, children screaming, and people rolling huge trash bins along the street. There were loud trucks and chairs being scraped across the concrete. My husband immediately put his hands over my ears at every sound, but when I said "no, that sound didn't hurt," his jaw dropped. The only noise that hurt my ears was a high-pitched barking dog in close proximity. Now that really hurt!
I was able to RIDE IN THE CAR to a place I call "my thoughtful spot" just in time to see the Orca whales passing through on their way south to Salmon Banks. I watched a family of otters teaching their young to fish. Keppra has made it possible for me to "boldly go" out to places, where in the recent past I did not dare.
I know that Keppra is not for everyone, nor do I know if the effects will be lasting once I discontinue use. I also know there are many variable involved in this diabolical affliction. For now, I believe that Keppra is playing a role in treating my hyperacusis, and for that I am grateful. It has given me a new lease on life. I am sharing this for anyone who might be interested. I am not claiming a panacea. Take what you like and leave the rest. I am still keeping my fingers and toes crossed for everyone here that you will find some relief from this beast. Best of luck!
damn i guessI know...But this is what we need to do for tinnitus/hyperacusis to not drive us crazy.
thats all chineese to me bro lol does this mean your not going forward with keppra? or are you saying that theres no data on how it actually works for H but your trying anyways ..OK...seeing as this seems to be the most "happening" Keppra thread I am posting this: Questions about the MOA of Keppra here, rather than in the "Tinnitus - Keppra" version thread. (Though it would be nice to keep all of them more clear, and Trobalt stuff in it's camp too. Oh well. Dream on Michael...).
Well, trying to get a handle on MOA of Keppra is a total wildlife park without fences...Just about every "ion" (Ca, Na, K) and numerous 'other pub mates' (GABA, Glutamate, etc.), are regular visitors to the surrounding suburbs/feeding grounds.
The assumption that Keppra is a Kv3.1 modulator is a bit loose to say the least. (Agonist or antagonist by the way??? I can see benefit to both aspects of that voltage gate theory too - depending on if 'stuck' open or, as assumed, maybe,...stuck closed!). I can't really find any newish info on it at all though.
The more recent data (over and beyond the initial definitive stuff in 2008 – 2009) seems to trend towards a "multi-factorial" approach, which to my simple mind means: "Who the hell knows?!"
In 2014, some good soul must have got frustrated, and like me, asked the question: "Can someone explain exactly how Keppra (levetircetam) works?"
http://www.researchgate.net/post/Can_someone_explain_exactly_how_Keppra_levetiracetam_works
After the SV2A, Calcium and Glutamate are mentioned, one reply goes to this later source from 2014:
http://journal.frontiersin.org/article/10.3389/fncel.2014.00164/full
Whereupon this part, (inserted below), is intriguing...Almost inferring that a Keppra induced "construction remodel" happens where the action potential is basically deferred by kicking the can down the axonal road! Like, hey, the further away it all happens from the synaptic cleft, the less likely (the gates, activating the neronal transmission) are to fire as much! This could be akin to saying it's harder to hit a target with a sub-machine gun (aka, 'hyper firing of epilepsy') if it is further away. Any soldier will tell you this is true. Actually it's pretty hard to hit someone even super close up if over hyped up on adrenaline... or synaptic Glutamate perhaps?! Etc., etc.
Don't take my word for it read it here, or on the link!
Because transmitter release is controlled by action potential-(AP)-triggered calcium influx in the synaptic terminal, regulation of ion channels which shape the axonal AP and terminal depolarization is an effective mechanism of presynaptic plasticity. With this definition, the AP initiation zone (AIZ) could be viewed as part of the presynaptic equipment. A striking form of homeostatic plasticity has been documented for the AIZ: this entire subcellular structure including voltage-gated Na+(Nav) and K+(Kv) channels can be shifted along the axon (Figure1), thereby counteracting hyperexcitation by increasing thresholds for AP generation (Grubb and Burrone, 2010). Such axonal remodeling may be facilitated via ion channel trafficking regulated by alternative splicing, as shown for "shaw-related" Kv3 channels (Gu et al., 2012).
Cool idea huh?! Just get rid of T or H by booting it down the hill...Sigh!
Anyway, as you can probably tell by now...I am giving up on trying to see if Keppra is a Kv3 regulator. Either it works for us or it does not. Or for some of us, and not for others.
Same old tinnitus guessing game.
Best, Zimichael
sounds worth it just for that.You'll get the drunkenness sedation feeling at higher doses
thats all chineese to me bro lol does this mean your not going forward with keppra? or are you saying that theres no data on how it actually works for H but your trying anyways ..
Geo... Well, no sweat if the axonal synaptic Keppra dance is Chinese to you, as it is to me too after trying to "translate" it. All to say, the key thing that counts is if it works.
However, one of my reasons for going into it in more detail was to see if it had genealogical ties to AUT00063, as then there could be some relevance to "time frame" and "dose" guesses...Well for me anyhow. *[Recall that we Kv fans were somewhat chuffed to find out that when Autifony first published the trial info, that it was a zap, straight on max dose pill from the get go...no taper. Thus reinforcing the "Marines at the door - overwhelming force" theory v. the "Medieval slow siege" theory].
I was hoping to bring more of my own 'understanding' to that aspect, but as reported, ended up in a wild suburb with no street signs. Thus the guessing game...As look, here we have "results" from @svintegrity at 250 mg BID = 500 mg total/day...yet potential doses of up to 3,000 mg total/day (or more). So...Ummmmmmm???????????
Your other question. No, I mean "yes"...I am continuing with Keppra as before, but just without much of a plan. Currently I am at 1,500 mg total per day (750 mg BID) and was going to ramp to 2,000 mg today, but decided to wait a few more days due to the complete "unknowns" (see above conversation and lack of MOA discovery on my part) on the "temporal v. dose" question.
Also, before I go and give myself a bigger headache in the mornings (my main side effect right now, though good organic coffee seems to obliterate it ), maybe I should actually "evaluate" my H first???!!! Like: "Oh, how do I know if my H has changed unless I expose myself to some known levels of 'hurt' sound???!!" Which of course, I have not been too keen on in the past few years. Thus I need to go to town and seek out some free range kids in the natural foods store, or stand outside the library until one of those redneck trucks with fat tyres and a big exhaust sticking out the side goes past...And see what happens if my earplugs are not in, or half in...Basic medical science stuff, etc., etc.
My 'tinnitus' has not changed. That one time blip in volume or tone change from Eeeeeeee to Ddddddd, on the second day, did not hold or repeat. Though my T is not as loud as it can be (aka "deafening"), but that can just be because it has not been 'amp-triggered' by sticking earplugs in, or going to said 'town' for many days. If I stay home and be in my general 'open ear canals noise control zone' my T hits baseline (quite loud enough thank you!). So no cigar there either.
Ummmmm...That's about it I guess....Oh! Maybe this is relevant, though is actually relevant for a lot of the AEDs (anti-epileptic drugs), I reckon Keppra is somewhat of an "upper". Not as much as Trobalt for sure (where a lot of trialees have been high as kites), but my general levels of energy and attitude are better since starting it. BUT...that could also be just because I am doing something, instead of just sitting in a T/H prison watching the bars go by.
And lastly, @Danny Boy, if you have any decent papers/reports giving the skinny on Keppra and the "dose saturation efficacy v. temporal" debate, do please let me know. *[I have the three main ones we all reviewed ref. 2008 - 2009].
Best, Zimichael