Revolutionary new drug set to be available on NHS cuts risk of fatal epileptic seizures Once-a-day pill, costing £5, helps prevent the most dangerous seizures Trial found 23% of those taking it stopped having such seizures completely Epilepsy affects about 600,000 people in the UK and fits can cause serious injury or sudden death Epilepsy sufferers have been thrown a lifeline by a revolutionary new drug that can significantly reduce their number of potentially fatal seizures. The once-a-day pill, to be available on the NHS, helps prevent the most dangerous seizures, which leave patients unconscious and can lead to serious injury or sudden death. The worst affected can have dozens of fits a month, usually without warning, so many are afraid to go out and can’t socialise normally. Some even lose their jobs. A revolutionary new drug that can significantly reduce their number of potentially fatal epileptic seizures is to made available on the NHS But an international trial of the drug Perampanel found 23 per cent of those taking it stopped having such seizures completely. A further 64 per cent saw seizures cut by more than half. The drug will cost the NHS £5 a day per patient – about £1,800 a year. Glasgow University’s Professor Martin Brodie, director of the Epilepsy Unit at the city’s Western Infirmary, said: ‘This lets people get on with their lives and relax, without worrying whether the next seizure means breaking bones or ending up in hospital. ‘Their quality of life hugely improves. The results from the trial are encouraging, but I would expect the drug to perform even better in the real world, because a wider range of people will have access to it.’ Epilepsy affects about 600,000 people in the UK. The drug is licensed for those with genetic epilepsy (around a third of sufferers) who also experience the most serious seizures, known as primary generalised tonic-clonic, or PGTC. These increase the risk of sudden unexplained death in epilepsy, which is linked to some 1,000 deaths in the UK every year. It is estimated that about 91,000 people fall into this category. Perampanel, manufactured by Eisai, targets a new mechanism in the brain to prevent cells from becoming overexcited. Epilepsy sufferers can have dozens of fits a month, usually without warning, so many are afraid to go out and can’t socialise normally. Some even lose their jobs It has been available for those with partial-onset seizures since 2012, which means that NHS organisations are already able to prescribe it. Scott Barclay, 34, from Glasgow, lost his job as a financial adviser after suffering seizures in front of clients. He had up to 15 fits a day and ended up in a wheelchair after one left him with a broken back. But since taking Perampanel he averages a seizure a month. Mr Barclay said: ‘My life has changed completely. I can go out by myself and be at home by myself, travel and socialise. For the first time, I can be an adult.’
By the way, the cost works out as £150 a month, which is cheaper than Trobalt (Trobalt costs £159.60 a month for 400 mg x 84 pills). Gosh, we need to try this...
Perampanel, manufactured by Eisai, targets a new mechanism in the brain to prevent cells from becoming overexcited. And tinnitus is what? Hyperactive neurons.
Perampanel was taken off from the German market in 2013. Same reason as with Trobalt: No real benefit was seen compared to placebo. Therefore, health insurance companies do not pay for it. We are talking about treating epilepsy, not tinnitus. We have 600,000 epilepsy patients in Germany, so this is a huge market. And hopefully by coincidence, a tinnitus drug will be found.
Anyone taking this stuff yet? Here is the USA main link: https://www.fycompa.com/hcp/about-fycompa Geeezuz... Take your darn pick about which of all our old synaptic or post synaptic gates/doors/entries/whatever could be the "one that rules them all" for Tinnitus! Now we have AMPA receptors in the mix... Sort of a long way from the Kv locations at the start of the axonal freeway ramp! God knows... Tinnitus = Frustrationville to the power of n.
It's available in Greece as well, however at the current price (170 euros for 28 10mg pills) it's just too expensive.
Well, after 5 days of taking Fycompa, I have not noticed any effect - positive or negative - on my tinnitus. To me it does not work. The only effect I have noticed is a terrible sleepiness which does not let you out of bed. Fycompa is useless for tinnitus.
Hi guys! This Perampanel/Fycompa might still be something to try. What if it's as effective as Trobalt, but as people have stated, with less side effects. Trobalt wasn't effective until you reached a high dose and so far as I can see no one has tried higher doses of this medication. Any news or updates about this?
There is literally no reason to suspect this drug will have any impact whatsoever on tinnitus. None. This was someone's fanciful speculation. I think that riding a magic pony might cure tinnitus, but I'm not going to start a thread about it... "As effective as Trobalt", lol, another drug which has literally zero evidence to suggest that it's helpful with chronic tinnitus. Yes, we have some anecdotes to that effect -- we also have some anecdotes on here that Lipoflavonoid, vitamin C, and prayer can reduce tinnitus.
There is no clinical evidence to support the hypothesis that Trobalt reduces the symptom of subjective tinnitus in humans or animals. There is limited evidence to suggest that Trobalt might reduce the risk of tinnitus occurring in animals following acoustic trauma -- but by itself, this is not compelling. The same thing has been demonstrated in humans using Magnesium, among other things -- which have likewise not been shown to have much impact on chronic tinnitus once it has developed. I am not suggesting this is a worthless line of inquiry, only that we are putting the cart well in front of the horse if we go around assuming that Trobalt is a useful tinnitus treatment in humans. Disclosure: I've experimented with Trobalt, and would not discourage anyone else from doing so, provided they have consulted with a neurologist and are fully aware of the risks of the drug, the complete lack of evidence for efficiency, and the potential for long-term damage.
@linearb, I agree that there isn't anything that shows that Perampanel works. But it's always worth a shot to try. What if provided some relief? What you say about Trobalt isn't true, I would say. Yes, the statements and anecdotes about Trobalt are few, but of all the treatments, meds and supplements that people here on Tinnitus Talk have tried, Trobalt shows the most promise. I, at least, can't find any other med on Tinnitus Talk that worked as well as it. Now, the drug has a lot of nasty side effects, but it makes sense in how it works. So in a way, you can say that it works for some and you can also say there is no evidence, depending on how you see it. But if you go through all the posts here on Tinnitus Talk where people have written about their experiences with trying out Trobalt, many have had an effect, and that shows that something indeed happens. Trobalt might be a good base to develop new more pinpointed meds with less side effects, like SF0034 (if I'm not mistaken).
I said there was no clinical evidence; there isn't. I admitted that there are anecdotal reports of people achieving a reduction in symptoms with it. The same can be said for benzodiazepines, which do actually have some clinical evidence along the same lines. A few dozen people have reported their experience with Trobalt here. Even if if these anecdotes were controlled, blinded clinical data, it is still far too small a sample group to come to any significant conclusion about it. I completely agree that the hypothetical model of tinnitus based on animal research into Kv channels, is an excellent reason to proceed with research along these lines, including more assessing more narrowly targeted drugs like SF0034 for potential therapeutic potential in tinnitus. I personally would stop well short of saying that this hypothetical model is a good reason for humans with tinnitus (and without uncontrolled epilepsy) to start experimenting with Trobalt, but I completely get that desperation and discomfort make us do irrational things sometimes. Like I said, I have taken Trobalt myself. I do not regret it, but I also will not claim that it was a rational decision based on a factual analysis. It was an emotional decision based on suffering and wanting to suffer less.
Thanks for your reply and information @linearb. That I agree on And yes, desperation does make us do desperate things. I haven't tried Trobalt myself but would consider it as a last resort if my tinnitus doesn't get better in maybe 6-12 months. How did Trobalt affect you and your tinnitus?
Haha, I just wrote you a short novel here to answer your question I have only experimented very briefly with it. The first time, I took 50 mg TID, for one day only. On the second day, I had very strange, reactive tinnitus (which I rarely/never have otherwise) -- the sound of my own voice caused a shrieking scream in my left ear. This distressed me, so I discontinued immediately. A few months later, out of, yes, desperation, I started up at 100 mg TID. I proceeded at that dose for only 2-3 days. It did seem like the T was less intense/distressing, and, frankly, I rather enjoyed the sort of floaty/"out of it" sensation that I got for 30-40 minutes after each dose. However, on the third day, I suffered a recurrence of a chronic pelvic pain condition which I've had in the past, but which hadn't been a problem for a good number of years -- initially it just seemed like I was having trouble completely voiding my bladder (which was something I was prepared for, though it happened faster than I was expecting). However, over the 24 hours that followed, this changed, first turning into a nagging sensation of "having something stuck in my urethra", and then escalating into very, very significant pain -- pain bad enough that it actually made my tinnitus seem like a pretty small problem in comparison. I discontinued the Trobalt at that point, but the symptoms continued for a number of weeks; ultimately, a combination of physical therapy, specific stretching, and warm baths seemed to resolve the symptoms. I am in no way claiming that Trobalt caused this problem... I only took it for a couple days, and the rational skeptic in me thinks it's sort of unlikely that such limited, short-term use of a drug would cause problems like that which persisted for months afterwards. However, given my prior experiences with this kind of pelvic pain, I think it's reasonable to believe that my bladder muscles and genital nerves are hypersensitive and prone to misfiring. So, it does not seem impossible that Trobalt was "the straw that broke the camel's back" and pushed me over the edge into a flare-up. My urologist and primary care doctor both share that view. However, this incident did cause me to really look hard at the adverse incident reports surrounding Trobalt, and I came across one case study where a seizure patient developed severe urinary symptoms during Trobalt use, discontinued the drug, and became permanently unable to urinate without a catheter. So, that alarmed me -- this is a serious drug, for sure. Whatever positive impact Trobalt had on my tinnitus (if it truly did, and was not just placebo) is not any more significant than the impact which benzos do. I know from lots of experience that if I take 15-20mg of Valium, my tinnitus is much less bothersome for the 2-3 days which follow... but I've so far been unwilling to take it more than very occasionally, because of the fear of long term damage and dependence. (I did actually take benzos for this and other reasons for a number of years, and the withdrawal process was absolutely harrowing). So, the thing which scares me off Trobalt at the moment is this thought: "I believe that Valium is physiologically much safer than trobalt, and yet I am unwilling to take Valium because I think it's too dangerous. So, how can I rationally justify prolonged Trobalt use?" Again, this is just my personal judgement call, based on my personal experience. If I had taken Trobalt, seen the reduction in tinnitus and not had the severe pain/urinary problems, then I would almost certainly have tried to work my way up to 300 mg TID for a couple months before tapering off to see if there was any long-term impact on my tinnitus. And, ultimately, that is what interested me in Trobalt -- the anecdotes on here from people who claim to have taken it for a while, and seen lasting improvement in their tinnitus following withdrawal from the drug. Dangerous drugs which can temporarily reduce tinnitus appear to be a dime a dozen to me (Klonopin, Sabril, etc) -- but none of these things have a lasting impact, for me, or for anyone else that I have polled.
I've been four days on Perampanel. Two days on 2 mg, and two days on 4 mg. No change in tinnitus (or it's a little worse, who knows...) Side effects: mild dizziness, slight drowsiness, slight tiredness. In future I might give a 2nd chance to Perampanel 8 mg but for now I am not in a great condition to try this for longer. I feel my tinnitus has become a little more reactive while taking it. Perampanel seems to work like a mood stabilizer. No great anxiety while taking it.
