Just a few days ago I was marveling that I could hear my Uncle talking clearly in my "bad" ear when I wasn't even facing him in a crowded room. Sunday night I was amazed that I was sitting in a restaurant with loud music and then two girls started playing additional music (or something resembling) music on the piano. It wasn't a pleasant sound, but I wasn't in pain. I could tolerate it. I was appreciating that I could go out to dinner without fear of a vertigo spell or even dizziness. And then the very next day--yesterday, I woke up with my ear stuffed, louder tinnitus, and waves of dizziness. By nighttime my hearing was more impaired than it had been in a while and that has remained the case today. On 12/24 I had just gone down to 2 valacyclovir from 3 for the third time. All three times I felt like my hearing got a little better right after going down to 2 (maybe less drama in the ear?) but in all cases something came up and my symptoms got worse--once a super stressful week, once getting sick--but in both cases the symptoms came back slowly. This time it was so sudden. All I can figure was that I slept in a hotel the night before and there was some fragrance on the bedding. I am sensitive to fragrance--usually it causes my skin to sting and my lungs to get tight. I didn't even have any lung symptoms. I guess that brought the virus back with a vengeance. I actually slept really well that night. I've gone back to 3 valacyclovir/day today. I've never been down to 1. Sound familiar to anyone?
Yes indeed it does bytheBay! It seems that the rains have the biggest impact on the roaring-fullness issues. I have only gone down to 2 on a couple of days..then bamb..the rains starts and back up to 3. All told with both the full dose of acyclovir and valacyclovir combined, it will be 90 days combined I have been on the 100% dosage sans about 4 days down one notch. So many factors besides the AV dose, right? Urg :
sensitivity to smells usually indicates MAV But One of my friends who has MM couldn't decrease either she stayed on 3000 mg of val for many many months she would decrease to 2000 mg and within 2 weeks her symptoms came back. You could have scar tissue preventing the av to fully suppress the virus (Dr G's explanation of why my friend couldn't decrease w/o symptoms) or like that article I posted maybe a mutated form of the virus.
If I am exposed to loud noises and restaurants, even if I do o'k while there, the next day my hearing and ear always seems to be worse. Add to that if I get tired. Sometimes it takes a few days to go back down.
I saw that about the mutated form of the virus. That's a scary idea. Makes me wonder if I should try Famvir. I'm also meaning to find that info about various generic brands of valacyclovir and see how mine stacks up. I wouldn't be surprised if I have scar tissue. This has been going on for a long time. nicmger, what you described happening to you with loud noises--does that happen on a full dose of AVs? I wonder if the bodily stress of fragrance could set off the virus. I don't think it set off MAV because I didn't have vertigo. Thanks for your thoughts and support everyone. Happy new year!
It is not as bad now that I am on the a/v - I am currently on the maintenance 1x day dose. But week of Christmas between staying up late, working and going to family (with kids....lots of them) - combined with holiday dinner party at loud restaurant I was struggling. My ear was loud, hearing impaired, pressure (not the worse I have felt by any means) and that overwhelming exhaustion. I spent last weekend recuperating and sleeping/resting. Much improved now. It is rare that I put myself in situations back-to-back loud crowds much less combined with minimal sleep. Believe it was the combination of the two that impacted me. One of these days I will learn...everything in moderation. ;D
I've been able to go down to the maintenance dose of one valtrex per day but after several months I tend to have a relapse. This was true last year at this time and just recently. I was fine through the summer and fall of this year being on the maintenance dose and then bam, things started feeling weird in my left ear, I knew what was coming, stuffiness, sensitivity to noise and imbalance. So it's been a week that I'm back on the full dose of three valtrex per day and hoping it doesn't take too long to get back to where I was. I don't get it. But I hope your situation clears for you.
So things were good in summer, but not now. What is the difference? Consider that very little or no vitamin D is produced by the body in winter, with little or no high-angle sun. Adequate vitamin D supports the immune system. Might want to consider 5000 IU of vitamin D-3 each day. --John of Ohio
Thanks, everyone. The tinnitus is louder than it's been in a very long time today. One thing that is so discouraging, is that I was just starting to relax about things a bit. I really am not even sure what set this off. At least I'm not as dizzy as I was yesterday. nicmger, when you have the increase in symptoms do you increase your dosage or just stick with the maintenance dose and wait it out? Also I'm wondering how long you've been on the AVs.
John, where I live, I don't get a ton of vitamin D in the summer either. But taking vitamin D certainly wouldn't hurt.
Wow, nicmger, you had it really bad. We are so fortunate that the AVs are a possibility and make a difference. Thank you for telling me about your dosages. That is helpful to know.
I am now 6 days past the increase in symptoms and 5 days past the dosage increase, and while I've had some mild improvement, I'm a long way from where I was. The tinnitus has been louder of a longer time than it has been for months. It quieted down a good bit about 3 days after I started taking acyclovir, which was before I started taken the valacyclovir. My hearing is just a tiny bit better than it was 5 days ago, but not nearly where it was a week ago. The pressure is bad. Fortunately, as of today the waves of dizziness seem to be gone. The other two time I went from 2 back up to 3, I was better in a day. This is really disturbing. Chinook, sounds like something similar is happening to you. Has this happened to anyone else?
Bythebay - "funny" that you say I had it bad...funny because during that year period the thing that kept me going was knowing that others had it worse, that I was blessed compared to them. During that year I reminded myself that some people have attacks more often, that theirs sometimes last for much longer; that the lorazapam was successful in shortening the attacks to "only" four hours. I didnt - of course - want anyone to feel worse than me but wanted to make sure to keep my trials in perspective. During it all I had a family that never questioned, friends that understood if it wasn't a good day and I had to cancel or didn't feel up to making plans at all, I had (still have) a job that I enjoy and who also was understanding and helped on "those" days to get people to drive me home and someone to follow in my car so I wasn't stranded at home. Everyone of course is different but the parts that were the hardest for me was the constant ear pressure and fatigue. It was so hard to think beyond the two of those because they seemed to weigh me down daily. My mom was a huge part of helping me turn my thinking into being thankful for any positives - if my ear didn't ring "as loud", or I didn't go dizzy that day, or if I did go dizzy but it "only" last 4 hrs. Focusing on something positive. That - combined with the necessary piece of accepting that this is one thing that I can't control (and I am a control freak! LOL); one thing I couldn't fix. I know that for some that piece seems to be the straw that broke the camels back - but for me accepting that it was out of my control and focusing on what I have good made all of the difference and I truly believe contriibuted to some of the improvement or longer stretches between attacks. No, my life is not the same since this started. Yes even with long stretches between attacks (but when mine come they are always in clusters and it will be h*ll) there is always that part of my mind that does not forget, that knows it could happen again. But every and any day that is better..I say thanks. And the days that are not as good, I do what I can in my control (drink fluids, make sure to sleep, stay safe, etc..) and know that one thing has been certain - as quickly as this thing makes my life h*ll, it can go dormant as well. There is always tomorrow.
Sorry to hear this bytheBay I have been on a pretty good run staying with the full dose valacyclovir. My ear isn't bad except the tinnitus which I can tolerate without the headaches and fulness, wanging, roaring. I am feeling the malaise last night and today which is kind of that overall feeling of ill-ease and exhaustion. But compared to the last two years and through September 2014, this is a massive improvement.