Meniere's and Antivirals - Week Three

Well, I waited an extra day to post hoping I would have something more concrete to say.  I’ve done the 800mg 3x/day for 3 weeks now.  Today I’ll taper down to 800mg 2x/day.  At this point, I can’t really tell much difference.  I am still having problems with dizziness and my tinnitus is still really loud.  The only area in which there MIGHT be some improvement is hearing.  The distortion seems to have cleared somewhat and some noises seem louder in my affected ear.  Of course, I am hopeful it’s the antivirals working but it could just be normal fluctuation.  Also, if my tinnitus was, for example, a 10 on the loudness scale, it might be a 9 now.  Again, hard to tell if it’s normal fluctuation or if I’ve just gotten used to the new level of loudness it had reached.  I was really hoping my balance issues would’ve, er…”balanced” out by now, but no such luck.  It’s still a good day here or there with mostly bad days.

I wrote on Monday about my awesome hiking and camping trip (yay!) and I am still recovering from that.  Really tired and dizzy from it.  So I feel like that could be interfering with results too.  You play, you pay…I guess.  Still worth it in my opinion.

So sorry to report, no exciting news yet.  But I’m not giving up hope that something will change soon!  I will continue with the 800 mg 2x/day for at least the next 2 weeks.  Then I have to decide whether or not to go ahead with the one time gent injection.  I’ve thought about postponing it but my problem is if I postpone it, it puts me in the summer when I’ll be home alone with my kids and this summer, I don’t have a lot of help that I can fall back on.  (no pun intended)  I’m just thinking of the worst-if I get really sick one or two days from the gent, I don’t want to be home alone with the kids.   I know some people get really sick for a day or two and some people don’t. Usually, if there’s a chance of a bad side effect, I get it so I have to prepare for it.  It would scare my kids to death if they witnessed a full-on vertigo attack and if I can protect them from that then I plan to.  I’ve got two more weeks to decide and that’s good news and a lot of time for something to change.  I’ll post on this in another week and see if there’s any change.  Hopefully, there’ll be no sicknesses or other factors to interfere and I’ll better be able to tell if they are working or not.

Meniere's and Antivirals - Week Two

First of all, I've been up since 3:30 and it's now 7:30 so I hope this makes some sense.   ;)

Second of all, the basics of the past week...I have continued on the dosage of 800mg 3x/day.  For the past few days, I have been worse.  Especially yesterday.  Dizzier, light-headed, and yesterday including the heavy-headed feeling and some mini-spins.  I'm not sure what to chalk that up to as their as some other factors at play.  Could it be the whole "it gets worse before it gets better" thing?  I sure hope so!!  I know this happens to a lot of people who try antivirals.  I plan to continue for one more week at the same dose before I taper down so still keeping my fingers crossed.  The hearing in my affected ear may be slightly better and slightly less distorted.  My tinnitus is still extremely loud.

But to confuse things a bit, I seem to have had a touch of the sickness my kids have had.  My son had a bad cough due to some inflammation in his lungs and my daughter had a cold and an ear infection.  On and off for the past 5 days or so, maybe more, my chest has been tight and my good ear was hurting.  That has eased up.  Also, yesterday morning, my Meniere's ear had some clear drainage coming out.  It's gone now as well.  So did that make me feel worse?  Don't know.  It was all so mild and variable that I just couldn't say for sure that I was sick.

Just to further add to the mix, I was also very busy this weekend.  My husband had to work very late Friday night and then was gone to a funeral in another state and was gone all day Saturday so I had to do a lot more around the house and care for the kids.  I spent about an hour cleaning out my daughter's toy boxes and closet yesterday and by the end was when I started getting the mini-spins.  So maybe I overdid it?  I don't think so but it's possible.

I'm still having some gastrointestinal problems too.  Mostly very mild but I was woken up at 3:30 with stomach pain and nausea.  It was pretty easily fixed with some Pepto and some Zofran.  But I haven't been able to get back to sleep since.  Feeling pretty dizzy now and hope to take a nice long nap sometime soon before time to go get the kids.

So I guess that's all for now.  Plan to post again in another week or before if something major changes.  As I've mentioned before, I've had this for 12 years so this is probably going to take some more time for me.  Even if this turns out not to work for me, I am so glad that I'm getting to try it. 

Meniere's and Antivirals-Week One

It's been a week now.  I've been taking Acyclovir 800mg 3x/day.  So far I can't tell any major difference.  About day 3 into it, I had a great day where I felt "normal" and was able to get out and play with the kids.  It was awesome but I'm not so sure I can chalk that up to the new medication.  Even before the medication, I would occasionally have a "good" day like that.  I do feel a little more stable getting around the house.  I'm not holding to things as much but again, still hard to say if that's just the natural course of this or the medicine.  Yesterday, I had a very busy afternoon with having to take the kids to the doctor and dentist.  I got pretty dizzy during all of that and had to take 1mg of Valium.  I haven't noticed any change in hearing or my tinnitus.  My tinnitus has been extremely loud since about a week before I started this medication.  I'm dizzy and tired this morning.  I have read that some people get worse before they get better.  I've also read that the longer you have this disease, the longer it takes to notice any changes with the Acyclovir.  I've had this for over 12 years so it may take me awhile.

Side effects noted so far have been drowsiness and I'm sleeping a lot more.  I can easily sleep 10-11 hours a night.  The Acyclovir also seems to be causing some minor gastrointestinal problems but nothing serious and no nausea. 

So that's week one.  I have a busy afternoon today as well.  We'll see how it goes and I plan to report back again in another week to see if anything has changed.  Of course, if I notice anything significant before then, I'll be back to write about it when it happens.

Great Dr's Visit-Starting Antivirals!

Wow, what a long but great day!  My hearing test and ECoG results indicate that I am not bilateral!  Yay!!  My right ear (good one) is doing great.  My doctor thinks the pressure I'm feeling in it is related to my TMJ so I'm going to wear my little mouth guard for awhile and see if it helps.  The hearing in my left ear was worse but I'm okay with that because the results for my right ear were so good.  The audiologist described it as severe mixed loss.  80dB loss in the lower frequencies.  Speech discrimination at 85dB was 68%. 

After getting these results, my doctor was very happy for me and said he was willing to give me one gentamicin injection.  He's pretty anti-anything destructive because he's seen too many people have destructive procedures done, then go bilateral and end up in wheelchairs.  He said that since my right ear is so good that he was willing to give me a one-time, low-dose gent injection.  I was thrilled he was willing to do that.  I've been so miserable lately, I was prepared to beg.  But before we do that...

He agreed to prescribe antivirals for me!!!  I couldn't believe it.  I had asked him once a couple years ago and he politely and reasonably said no.  Now that there are generics available and the risk of side effects are so low, he said "sure, let's try it"  Whoa!  I was shocked.  He said he honestly didn't think it would work, but at this point, I had nothing left to lose.  I was prescribed Acyclovir.  800mg 3x/day for 2-3 weeks, then down to a maintenance dose of 400mg for a couple weeks.  If this doesn't work, then I have my gent injection scheduled for May 25th.  I'm so thrilled to be moving forward and trying something to stop this off-balance, dizziness, and nausea.

I think it helped that when I asked him about antivirals that I told him up front that I knew chances were they wouldn't work but that I wanted to exhaust my possibilities before I did anything destructive.  He kind of laughed and said, "if this works, I'll pop open a bottle of champagne for you!"  and then went on to say he would prescribe them for his next patient.  Yikes, I really hope they do some good for me.  I really don't want to ruin anyone else's chances of trying them.  So many people have benefitted from antivirals.  I plan to post on my progression over the next few weeks.  An honest telling of any side effects, new symptoms, improvement of symptoms, etc. 

Here's a link to a great compilation of resources that may be of interest or help to anyone who wants to give antivirals a try...

http://www.menieres.org/forum/index.php/topic,23217.0.html

I had e-mailed this to my doctor yesterday but he didn't have a chance to read it.  From a scientist's point of view, many of the studies are flawed.  However, there's still good information in them.  It's the personal success studies that intrigued me the most.