Brivaracetam — KV3.1 Modulator

Well, hopefully it is...We'll soon see when it comes out...Here's hoping!

 

I do feel like something is out there that will help us. Some days I can have a 1 and some days its an 8. If they can just find out why then they are on to something. As Danny boy mentioned previously, having tinnitus with a 1 is basically like not having it at all since you can ignore that and fortget abou it 95% of the time.

 

Having tinnitis at a 10/10 caused me to basically try to hang myself and bang my head on everything...So sorry, these drugs saved my life and my doctors totally ignored me and wanted to benzo me up and that would've made things even worse.

 

Did you changet your avatar? Its a different person now?

 

It's still me, I just changed my picture.

 

How did you reduce your tinnitus what drugs u took?

 

Well, I take Campral, keppra and trobalt.

 

I got a friendly reply from UCB to say that the best contact for my questions is not in her office at the moment but she will contact me next week ...

I think that`s a good start ..

 

Can you ask when they plan to release it?

 

Questions for UCB


1. What is the key difference between Keppra and Brivaracetam … are they not both working on the same channels Kv 3.1? Why would one be better than the other (side effects, efficacy)


2. Did you hear of AUT00063? Also working on Kv 3.1 … What is the chance that UCB and Autifony are actually researching the same molecule without knowing?


2.1 How is it possible that different molecules work on the same channels and what are the possible differences in the effect. Is it only efficacy and side effects?


3. Is there any knowledge at UCB that this drug might potentially have a positive effect on tinnitus? Did anyone have a coincidental positive effect on their tinnitus while participating the clinical trials of biravarecetam.

4. when will it be released?


quote and add questions if you have some

 

It's amazing how many drugs there are for epilepsy but nowt for tinnitus...does make me wonder so much.

 

@Danny Boy its like some other user said severe T isnt as common as epilepsy.. But yes i do think it is stupid they havent come up with a treatment at least i wouldnt mind taking pills for the rest of my life as long as it reduces it to mild or goes away while on medication..

 

@nills are u going to be a trailee? Even tho it isnt for tinnitus they are going to let you in the program?

 

Actually, they are nearly on par.

• There are around 40 different types of seizure and a person may have more than one type.
• Epilepsy can affect anyone, at any age and from any walk of life.
• In the UK, 600,000 or one in every 103 people has epilepsy.
• Epilepsy is a neurological condition.
• Every day in the UK, 87 people are diagnosed with epilepsy.
• Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
• Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy.
• Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life.

• About 1% of adults - 470,000 people - have tinnitus that has a severe effect on their quality of life. And 10 million have mild tinnitus. In the UK.

 

• The number of people with epilepsy, using prevalence numbers, ranges from 1.3 million to 2.8 million. In the USA

• 25 million to 50 million people in the United States experience tinnitus to some degree.
• Approximately 16 million people seek medical attention for their tinnitus, and for up to two million patients, debilitating tinnitus interferes with their daily lives.

So a much larger figure there.

 

The trails are finished and I don`t have epilepsy ... but i a hoping that there is a way to get it off counter before release ...

question: It does happen that medicine obtained off counter and before release isn`t it ... I read this before, anyone know more about this and how this usually happens?

(side note - I took my Trobalt some little time ago and apparently my brain switched to AZERTY mode instead of QWERTY ... I wrote all my A`s with a Q ... it has been years ago since I switched type boards : )

 

@nills u have very bad T right, so do i and its just gettinf worse i also have H.. Do u?

And is trobalt working for you? I am desperate for some relief from my H and T.

And do u think this new drug will work? And if so what exactly will it do? Lower T? Treat H??

 

My T is annoying to say the least ... I hear it constantly yes, I have H but only with certain frequencies ... some freq`s on high volume don`t bother me ... it is the frequency of cutlery and plates that really hurts.

I really don`t know about this medicine (Brivaracetam) that is why i`m contacting these people. I`m not a doctor or scientist.. everything I learned I learned here on the forum thanks to the knowledge of some great people and the papers being posted.

I just started taking Trobalt but 100mg doesn`t have any positive effect yet. T is as bothersome as before, although I do feel the medicine working in the body. I will move up with dosage and see what happens.

Best advice is to try it actually. It took me a long time to start taking Trobalt but I regret it a little bit now ... do it right and follow doctors advice - have your QT rate checked! because Trobalt possibly lengthens this and that can result in a stroke .. And if H is so bad start with Keppra. Sometimes we just need to move into action with this stuff, to think about it is not helping so make a decision and try it if it seems safe to do so

 

@nills yes me H Is very bad everyday it spikes my T very horrid.. I watch tv and only hear my T over the tv badly.. I can be in my room and a loud motorbike passes on my street and sets my T off hard .. My H is verry bad idk why it got like this... I live in the states and find it hard for a ent to probably prescribe me this (keppra).. But i also am worried since it is a epilepsy drug that itll somehow mess me up...and do u think it really helps from ur knowledge.. And also that new drug will u think itll help H.. I hear dannyboy saying it is stronger than keppra

 

Retigabine works on the Kv 7.2 channel while Aut00063, Keppra and Brivaracetam work at the Kv3 level. So they're not the exact same, all are potassium channels regulators (they influence the electricity or voltage of these channels). Retigabine seems to decrease tinnitus temporarily while the others might retrain the brain, to learn how to open the gates again without assistance, so the T is gone permanently. The Kv3 channels are high frequency channels. So it seems like addressing these will tone down the hyper active sate they are in and thus reducing or illuminating T. The Kv 7 are channels linked to the cardio vascular system. This is why it is important to check your QT rate (In cardiology, the QT interval is a measure of the time between the start of the Q wave and the end of the T wave in the heart's electrical cycle. The QT interval represents electrical depolarization and repolarization of the ventricles) This is why it is important that when you take a potassium channel opener like Retigabine you check this QT rate with your doctor first cause the (K)V)OLTAGE (elctricity) of this channels is altered and so also the voltage of your heart is altered and if your heart is to susceptible for it it can stutter and cause a stroke. I went to google and found some texts that explain some stuff ... enjoy

@Geo ps: don`t ask an ENT for Keppra go straight to a doctor. ENT actually don`t know anything about Tiinitus or H. It is not really their field cause it is a brain thing. My doctor told me this yesterday and I also was a bit stunned although I knew it to be true all along. You have to find a specialized doctor or hospital for T and H ... just ENT is waste of time. They will help just because you come but they won`t be able to help because they don`t know.

http://www.jneurosci.org/content/23/4/1133.full.pdf (kv 3 auditory neurons)
http://en.wikipedia.org/wiki/KCNC1
http://molpharm.aspetjournals.org/content/74/5/1171.full
http://worldwidescience.org/topicpages/p/potassium+channels+kv.html
http://molpharm.aspetjournals.org/content/67/4/1009.full.pdf
http://www.tocris.com/pharmacologicalBrowser.php?ItemId=47688#.VTn5jReedRk

 

@nills seems like you know ur stuff and how to treat it . It amazes me how they havent put out a drug when all this information is attainable and seems pretty much on the money...

 

Truly I don`t know anything, i`m just a parrot ... but at least it gives leads to things that work ... you have to sepparate the bull from the sh*^. That is why it is good to read a lot. And best is of course to try it. I think to say in @Danny Boy words. Take keppra for H ... and see what happens.

 

Geo, I've told you like 1000 million times to get keppra lol

 

And nills, Trobalt does work on the KV3.1 channels, it work on like 5 different channels...Hence the crazy side effects.

 

Thank you for correcting me buddy, I didn`t know RTG was functioning on all those levels.

I found this text that explains potassium channels.

http://www.ebi.ac.uk/interpro/entry/IPR005403

 

Yeah, I believe that's why trobalt has an effect on tinnitus because of how many channels it works on. Although, I do mix it with campral and keppra...Got to hope it does something haha.

 

You believe it has an effect because it works so broad? That would mean that if something nly works on one channel the effect would be less? ... it is possible considering that paper that states that T is generated/influenced by more regions of the brain outside the auditory cortex ...

I hope I can get those people from UCB to get me some of this medicin off-label ... I really don`t know how to go about it actually. @attheedgeofscience I want to try to get UCB to give me Brivaracetam off label. I know you have tied to get drugs off label before even when they were in early stages of trail. Can you give me some advice on the best way to do this? like should I come with a doctors prescription or some statement of `on personal risk` or just ask them bluntly ... what`s your advice? I have a phonecall with them next week.

 

Hopefully you can get it off label...If not wait till it's out and buy some in Spain haha.

 

@Danny Boy ... where did you find the information that this Brivaracetam works on Kv3.1 ?

Brivaracetam
Brivaracetam is a novel high-affinity synaptic vesicle protein 2A (SV2A) ligand which also displays inhibitory activity at neuronal voltage-dependent sodium high-affinity SV2A ligand and has a distinct pharmacological profile that differentiates it from other currently available treatment options.

In pre-clinical studies, brivaracetam demonstrated a 10-fold higher affinity for synaptic vesicle protein 2A (SV2A) than Keppra®. The clinical significance of these findings is not known. Brivaracetam also demonstrated inhibitory activity at neuronal voltage-dependent sodium channels whose abnormal function is understood to contribute to electrical discharges associated with seizures. These differences may be important for the antiepileptic activity of brivaracetam, its clinical efficacy and its tolerability.

http://2011.ucbannualreport.com/medicines/Future-treatments/New-compounds/Brivaracetam

 

What is the reasoning for thinking that Brivaracetam would be more effective than Keppra? It's more potent, but that doesn't mean you'd expect a radically different effect, it just means that you'd need a lower dose to achieve that effect.

Cynically, it is very obvious that Keppra is about to lose its patent protection, therefore the company which manufactures it is trying to get a new drug on the market to protect their profits. This is standard practice in the pharmaceutical industry. However, this does not necessarily mean that the new drug is of any benefit to consumers -- in fact, it is often the opposite, since the new drug will be much more expensive, and inherently have a higher risk profile owing to being untested in large numbers of humans over an extended period of time.