I've had Menieres for as long as I can remember. My hearing was bad for more than 20 years before I started AVs. Now I have completely normal hearing. So I'm not sure where you're coming up with that conclusion. Are you suggesting there is a cutoff point after which hearing can't recover?
I've had meniere's symptoms for well over 15 years ago now, but the dizzyness / hearing loss would come and go. Meniere's was mentioned and I had a few packets of SERC lying around. But it wasn't until about 6 years ago that I got referred to the top guy at the hospital here and he said definitively I had meniere's but this seemed to be mainly based on a 5-10 minute chat about my symptoms. I felt really cheated as I thought it would be the start of a series of exhaustive tests to rule out other more treatable conditions, but that seemed to be pretty much it apart from one test where he squirted hot / cold water in my ear and the results came back that I had a normal dizziness response to this. I said that was great, as it could mean it was something else but he told me it didn't really prove anything either way. The ENT I have been seeing the last few years did some test where he jerks your head around and a computer tracks your eye and this gave positive for meniere's in my right ear, where it is my left ear which gives me problems. So anyway, the diagnosis has been a long, drawn out thing but it's been something like 3 years now since I've been able to hear properly in my left ear. As to doctors, Scott, I'm sure there are good and bad like in any profession but the system doesn't help. Even with private medicine here they only get a few minutes per patient and are paid based on how many they see, not on how much they helped them, so they just keep trying to churn them through. In the UK when I was a kid dentists were paid on the work they carried out so most kids had their mouths full of fillings. Here in Spain they used to prescribe brand name drugs until they started giving bonuses for to doctors for prescribing generics. Now you can't get a brand name for love nor money . . . but wouldn't you think a doctor would prescribe based on a drugs suitability. So I pay 50 euros a box of Valtrex and thankfully I can but yes, after years of dealing with the medical profession with this I have a bone to pick or two. Anyway, I just hope these good times keep going but even if not, I'm really enjoying the break just now. ;-)
Well it is good to hear of two cases where the length of symptoms has had no impact on hearing improvement. There are plenty of anecdotal stories where the reverse is true. Just goes to show that until we have proper double blind clinical trials that we are all left to conclude whatever we like, and often on very small sample sizes, and the flimsiest of evidence.
Yes, I totally agree that a double blind trial is needed and I have also read people stating that everything from vitamins to massage oil helped them. With diseases that come and go we are tempted to stop doing the things we did just before we had a bad patch and assume whatever we did just before we felt better was the cause. But for me this time it's not just that I feel better, it's how good things are now. Even in the good patches before I still had pressure, tinnitus, hearing loss and even if I wasn't dizzy I couldn't say I was 100% stable either. But for anyone reading this thread, if you've got this far to be reading this forum then what have you got to lose? No drug is 100% safe (just look at Bruce Lee ), but this one is as close as you'll get. And before you start thinking about surgery this has to be worth a shot.
The three big differences between antivirals and other remedies is that, first, virtually no one comes back and says antivirals worked for a year and now they don't. This has only happened when pharmacies changed generic brands, like it did for me. Second, other remedies only claim to stop the vertigo. There are dozens of people on this forum, and hundreds from various clinics around the country, who are stating that most, and sometimes all, symptoms are gone. Third, we have published medical reports showing the 90% success rate from hundreds, if not thousands, of patients. There are more than a dozen clinics nationwide that are finding the same rates. I've got emails from most of them confirming this. But there will always be detractors. They call it a placebo. They demand double blind studies before they're willing to try it. They troll relentlessly. But it's working for too many of us now to brush it away. Beanz is right. It's a safe route to try before chopping out body parts.
No one has suggested not trying AVs until a clinical trial has occurred, and furthermore not everyone who has a different perspective to you is a troll Scott. They have to be worth a shot even based on anecdotal evidence. I have always understood that the sooner the better on the understanding that hearing deteriorates permanently over time. But there are still question marks like why don’t they work for everyone? And how can the bulking agents used by different generic manufacturers have such dramatic impacts on efficacy? However, my wish for a properly conducted double blind clinical trial remains undiminished, despite the apparent unlikelihood of it happening.....
Yes, fine. But, knowing the exceptionally high rates of antiherpetic treatment successes (in the realm of 90%), before any double-blind clinical studies have been conducted, how willing might you be to be included in the control group of such a study, where you for the duration of the study (many months or years) were given only a sugar, placebo pill instead of the real substance being evaluated? In fact, how would any general study population react to this conundrum, where it is already demonstrated thousands of time over that those taking antiherpetics have high chances of symptomatic relief? How, presently, could there be a double-blind test? Wouldn't the majority of those participating demand to be in the experimental, get-the-real-drug arm of the study, knowng full well that those in the control, placebo arm simply will continue to suffer, no matter what? Frankly, a double-blind test of antiherpetics against Meniere's is probably now impossible. Way too much evidence that antiperpetics actually do bring relief for the vast majority of those who use them. Just who would be ignorant enough to participate as a test subject? --John of Ohio
The ENT I go to see just doesn't really believe (care?) about antivirals for Meniere's treatment. I'm sure that very few if any of his patients are taking them. These would be the kinds of people that would be good subjects for any study.
Agreed. Only an idiot would agree to this trial, given that they can simply get the actual drug themselves from any doctor, and find out for themselves directly. It would only make sense IF the drug were not yet available UNTIL the clinical trials. But some folks are so desperate to bash Gacek and antivirals that they'll say any of kind of silliness to get attention. lol
I mean, can you imagine someone with HIV agreeing to stop taking the current meds and go into a clinical trial for a new med, given they have a 50% chance of getting the placebo? Or someone like me who is symptom-free from MM agreeing to stop taking the drug? Or someone who can simply ask their doctor for Valtrex but chooses instead to join a clinical trial? LOL... smh.
Maybe nothing is ever going to work for everyone because the same syndrome can have multiple or combination causes? My approach for myself was selfish. I did not wish to delay my own cure until a cure that would work for every single hydrops sufferer was found and confirmed. So sue me. I think everyone wants more research but this arguing about the proof of one true cause of a disorder that has no objective way to confirm and isolate diagnosis is just, i dont know, something to do on a slow day i guess. Yeah, antivirals helped me a ton.
With respect, June, I think it's about more than something to do to while the time away. I believe that probably the majority of meniere's sufferers do not take antivirals and have no idea that they could hold the answer. If a double blind study were carried out and it did show that antivirals are an effective treatment then these people could be helped. Also, as there are so many that are not on antivirals but just continue to suffer with this disease there wouldn't be any shortage of test subjects. Test subjects in a double blind are not told, "you may or may not be taking antivirals but if you were, they would help and you can get them at the store anyway". They are just told that there is a medication that may help their condition, or they may be part of the control group and so no worse off.
It would be unethical if there were not told that. Typically, participants are told that the drug has not yet been approved, and is still in experimental stages. They are told that if they participate, they have a X% chance of being in the experimental group. If they do not participate, then they will have to wait until FDA approval to receive any potential benefits. This is the recruiting "hook" so to speak. In this case, since the drug is already approved, any IRB would almost certainly require the experimenters to inform the participants that the drug is readily available if they choose to take it outside of the study. To not tell them would be tantamount to deceiving them into thinking this was their only option.
Imagine how a jury of laymen might react to a trial where a medical tort lawyer files against a practicing research physician who conducted a double-blind antiherpetic study; where his client in the placebo arm got a severe MM attack and suffered injury. “Doctor, did you indicate to my client that because she might, in study blindness, be in the placebo arm, and therefore would be open to adverse events typically caused by Meniere’s? My client, now severely injured, had reason to suspect she was getting the real drug, and would get better. Instead, your study allowed, even caused my client to suffer severely in her imposed ignorance. I turn to you, the jury, and ask for a $1 million remedy.”
I’m so glad that you understand the simplicity of the proposal Beanz, especially as the other respondents have failed to grasp it. If AVs are not a licensed medication for Meniere’s (and the key point is that they are not!) then the trial is no different from any others taking place currently, with for example steroids. Scott and JOH have carried out their own unscientific trials and are satisfied with the fantastic results, which then seems to cloud their judgement. The medical community doesn’t share their enthusiasm because it is not based on cold hard scientific evidence. New guinea pigs become available every day. If half of them are on AVs immediately and the other half a year later then the numbers of AV success stories will be far greater than the current situation where the lucky and persistent few are on them. A lawsuit brought against a researcher is not logical. Thus JOH’s argument, and Scott’s insults are as unsound as their faulty logic. A quote from a report on the OTO-104 steroid trial sums it up nicely; “Rigorous clinical trials like these are essential to test whether an experimental medicine is safe and effective. If a new medicine successfully completes all the phases of clinical testing, health regulators, doctors, and the public can be confident that it is safe and proven to help the people who need it.”
Valtrex is not a new medicine, and it has already been proven to be both safe and effective as an antiherpetic. But feel free to wait until those double blind studies have been done on MM patients before trying it. The rest of us are going to keep taking it despite the silly trolling attempts. And yes, you are a troll. You've had posts deleted on this forum because of it. I get private PMs on a regular basis from people who don't want to post in the public forum because of people like you, so you can imagine that I have little patience with your trolling.
Yellow, with all due respect, I am trying to understand the motivation behind your continued argument towards others. i don't think anyone disagrees that a double-blind study could be helpful in a way to encourage more doctors to accept the treatment - but the plain reality is that it is most likely never going to happen. Most studies are to prove new drugs that can make the manufacturer lots of money. As a drug that is already available no extra money is available therefore no "reason" for the cost of a study. And yes, I would like to believe that suffers of Meniere's are reason enough - but that sadly will never be the case. It rarely is about the good it can do - more about the money that can be made. I truly do not understand why you feel the need to argue to push for the double-blind in a format such as this board. Here people are struggling and looking for support and anything that has helped anyone that they could try. That is what people are doing here - sharing that for many (not all) anti-virals have helped them. That there are doctors out there who agree that antivirals are an option - although not most. No one here has the ability to decide when/how a double blind study is coordinated. That is between the drug companies and doctors. Here we can just share what we have experienced and what "we" individually have found works for us.
Go for it! I dont think anyone opposes more testing. Personally, just not waiting around for it because years of being deaf and more is too great a price for me to pay. I have had almost 9 years of normal hearing when i could have been a dutiful little one and waited for someone to round up the money for these tests and 'prove' something to someone's satisifaction but i wasnt willing to sacrifice my hearing or sanity and i would not ask others to. There have been double blind placebo controlled tests and they were statisitically inconclusive though promising. It is not as if no one thought of this. Round of the money and do it, please! Also round up the money and test similarly shunt surgery, diuretics, prednisone, serc, low sodium diet and all the other accepted and typically prescribed but as yet not proven to be the cure remedies please!
Please try and take a little more care to read what the words actually say. Steroids are not a new medicine either. That is not the only point of a clinical trial. What we are talking about is approval for the use of AVs in the treatment of Meniere’s. A sanction for every GP and ENT to prescribe them as a drug of choice. The aim must surely be to bring AVs to a wider audience than those few of us reading our own particular versions of reality here. At no point have I ever discouraged people from trying AVs - in fact quite the opposite. But there are a lot of GPs who won’t countenance it without scientific proof and a listing on their database of medications for Meniere’s. So many sufferers (and more join us every day) are left without the knowledge and/or the chance to share in your own success story. Even the start of a clinical trial would garner publicity and raise awareness! If the above amounts to trolling then I can only apologise to those sensitive souls that you mention.
Yes, it would be great to have clinical trials. I'm sure you're busy trying to convince the drug companies to do that when you're not trolling this forum. I wish you all best of luck with that. In the meantime, I hope you don't mind that thousands of people (based on doctor's reports) are finding relief from antivirals. Why you keep harping on this is mind boggling, but I suppose it entertains you.
