So I started antivirals last November. It took about 6 weeks, but I actually felt a lot better (I was also doing JOH and upper cervical chiropractor). I felt so great until the beginning of April when I went on a two week trip to Europe. I've posted before about how all of my symptoms have flared up since I've been back, but I've tried everything and nothing is helping. I've been on the full dose of antivirals since I started them and never got to the point where I was lowering the dose. Now that I've been back from my trip for over 6 weeks and I still have zero improvement, I'm wondering if they ever worked in the first place and if getting better back in December was just a coincidence. They aren't cheap and I'm struggling with how much longer I should stay on them. At this point I've been on them for 6 months nonstop and doing poorly for the last 6 weeks. My hyperaccusis is driving me mad along with all of the other symptoms of MM. Anybody else have this issue???
It sounds like maybe they are not doing the trick. Unfortunately, it doesn't work with everyone, and you've given it the best chance you could. If you've done everything else, you may want to start considering the laby if you're unilateral and sure that you don't have MAV.
I should mention that I haven't had vertigo since last year - just all of cochlear hydrops symptoms. Terrible hyperacusis, tinnitus, hearing loss, lightheadedness, and pressure. Think that matters??
I've only had vertigo 6 times in 14 year of MM and they were all last year. I tnink the last time was about 3-4 weeks before I started the antivirals. I haven't had any episodes since, but a lot of lightheadedness!
It's really hard to say then. I feel for you, buddy. Are you sure that you don't have MAV? Have you followed the MAV diet to see if that helps?
For a lot of us, air pressure changes are a HUGE trigger. My ENT at least admits this, but he told me no one really understands why. (Go figure.) When you fly, the cabin is generally pressurized at a simulated altitude of about 6000-8000 feet. (There's a whole lot of technical mumbo jumbo about that.) That is a huge change in pressure rather quickly. Putting that much pressure on your ears, so quickly, can certainly send you for a loop. Especially if you do it a few times over the course of a week. I love to hike big mountains with my friends, but the altitude changes really threw me for a loop and I'd always have to hang back and climb much slower. (Yet another way this bastard of a disease isolates us.) If you feel the anti-virals were helping before, they probably were. Stick with it. I've been on the Northstar and Mylan brands and I'm feeling much better than I have in years. I wish I had an answer for how to get your ears back in line. Hope this clears soon for you.
Agree about air pressure. My ent said the ears are very pressure sensitive. They are what fish use to tell their depth fwiw. As for antivirals, my experience was that they took care of a certain part of the symptoms, primarily distortion which was about 60% of my problem. They also stopped the progression of the disorder which was moving forward alarmingly fast. They did not immediately heal all the damamge tha t was done. That took years. I also think allergy shots helped with the latter. I took antivirals a few months. Think of it like mono, another herpes viral disease. When you get over mono, you may be weak for months, perhaps have some residual damage to organs that never heals. It doesnt mean antivirals 'dont work' it means there can be residual effects just like with any disease. You can have a bad eart the rest of your life even though the strep that damamged it is gone.
Scott tom- Different people on these posts have mentioned MAV, but I've never had migraine headaches, have a lot of hearing loss and am not bilateral. I don't get vertigo regularly (knock on wood) as I've only had it 6 times total (all last year), but I am lightheaded all the time. It seems that what I've read about MAV doesn't necessarily correlate to my symptoms so I haven't tried the diet?? I'm starting allergy shots today. I just paid for another 3 months of the antivirals because I wasn't quite ready to give up on that. I guess I'll reevaluate when I'm out of that prescription. I don't know about you guys and your significant others, but I have such guilty feelings that I'm making my boyfriend be antisocial because I'm so antisocial anymore!! It's a viscous cycle!
You might try going off the anti-virals or reducing the dose and see what happens. For me when I've reduced the dose too low the flares ups have started at about 2.5 weeks. The same thing happened when the generic brand was changed. I wasn't aware the brand changed until a few months later. Long story, but I later figured out that was the cause of that flare up. When I got back on the better brand I was better within a few weeks. I had a very bad flare up last November due to stress (I now know to increase my dose when under prolonged stress), and it took a couple months to get back. It really seemed to take both increasing the dose of anti-virals to the max and increasing the Lysine I was taking.
Bythebay- wouldn't lowering my antiviral dose just make my bad ear worse? The brand I'm on hasn't changed, but I'm nervous if I lower the dose it will just be worse? Can you build up a tolerance to them?
They are not known to build up tolerance. If you reduce or stop your dose, and you get worse, then you know they are working. That's the upside. The downside is that it could take months to get back to "normal". Are you also taking 3000 mg of lysine per day on an empty stomach?
Extended travel forces us to use different pillows and beds that may be misfit to you. Maybe you had to sleep on the airplane seat as well. They affect cervical condition. Those who had cervical misalignment are susceptible to going back to misaligned condition. I have experienced that my cervical condition kept easily fluctuated until my neck muscles becomes balanced and stable.
I just meant that if you think they aren't working you could try stopping, and I think you'd know pretty soon. But I can imagine that if you're not doing all that well, you very well might not want to mess with anything that could make things worse. Probably better to try increasing the Lysine. I don't think you can build up tolerance to the anti-virals. These might be good questions for Dr. Gacek, who is generous about responding to emails.
My MM was diagnosed in 1992....didnt have a horrible flare until the spring of 2016 when it all hit with a vengeance. I had only experienced tennnitus and severe hearing loss (bilateral) from my initial diagnosis until this point. Coincidentally I had been on a maintenance dose of Valtrex (500mg daily) for herpes from 1999 until the same time frame in 2016 when all hell broke lose . I had no concept, nor did my GP, that there was a correlation between MM and antivirals until I was at my wits end in Feb of this year. When I found this site and all the testimonies about the antiviral approach, I immediately called my GP who was more than willing to Rx the high dosage. I'm sharing all this to say that with that the 9 month break from not taking my Valtrex, I'm still not back to the 100% quality of life I knew prior to my stopping the meds. I'm still holding out hope that one day I will regain most of what I lost this last year, but it is a slow process. I continue to take the max dose of Valacyclovir along with the full regimen of JOH. It has been a little over three months at this dosage. However, I plan to do so for at least three more months. Personally I would not risk missing one day let alone stopping the meds. Just my opionion.
FG, it makes you wonder how many people with herpes or shingles would show MM symptoms if they weren't taking the meds.
Trust me Scott, I would NOT have stopped the Valtrex last spring if I knew then that it was probably keeping my MM in check. Tough lesson to learn, for which I'm still in the "learning curve". This is one aggressive bugger of an illness that truly does NOT want to be contained. Even after three months of trying to control this thing, I had another "set back" yesterday. However, I'm determined to keep on keepin on. And as I've said before, I am "ForeverGrateful" that I found this site when I did.
What are the antivirus supposed to do? Is this assuming that the initial problem started with a virus? There are opposing views on this idea. At first I was told this, but they put me on steroid treatment. Very high dose of 600mg! I weaned off of them and said I would never do that again. So bad for the immune system!