I am looking for some advice. Any feedback is very much appreciated. I tried anti-virals last summer and didn't have much luck. I was thinking I was only on them about a month but I researched the old forum and found that I was on them 41 days. I posted a 40 -day update 2 days before I found I was pregnant and then stopped them immediately. I see in my old post that I had noted a slight decrease in number of attacks and that they were slightly shorter in duration. I am really starting to think again that my case is viral. Because of my two Bell's Palsy attacks both on the left side, and its my left side that's affected by CH. Plus, since I have been having trouble again with my ear I have also been getting sores in my nose. Anyway, here is where I am looking for advice. I had just picked up a 30 day supply of Acyclovir from the pharmacy and then found out I was pregnant a few days later. I stopped the pills and put them away. That was August 2013. My oto did not prescribe them to me because he said he doesn't prescribe anti-virals and doesn't believe the theory. I had a difficult time convincing my GP to prescribe them but she finally agreed but wasn't too thrilled. So my question is - would it be a bad idea to start taking the Acyclovir that I was prescribed a year ago and has been sitting in my medicine cabinet ever since? Or do you say "go for it"... I don't think my GP will be very willing to let me try again. But I will ask if I have to.
If it is not expired I would give it a try, but at the right dose. what dosage were you taking? I would suggested 800 mg 3 times a day for 3 weeks and see if you have any control over vertigo. If you do you have a good reason to ask your gp to write another script for you
Thanks for your response, Vicki! I was taking 800 mg, 3 times a day. The prescription is 90 pills, 800 mg each. I didn't see an expiration date on it though... I will look again when I get home from work. I believe I only took a few from it. The bottle is almost completely full. I didn't really specify in my original post but I am extremely fortunate and do not get vertigo. I have Cochlear Hydrops/ a-typical Meniere's. When I said "attacks" I meant extreme fullness, loud roaring tinnitus and decreased hearing. I did see that there was 1 refill available but I unfortunately just missed that time frame. It said 1 refill available before July 28, 2014. Too bad I didn't think of it sooner.
if it was filled aug 2103 it should be good until the end of this month, you can also ask your pharmacist.
I agree with ask a pharmacist. Are there other ENT options? This is hard enough. So much better to have a practitioner who works with you.
I have tried looking for another neurotologist to go to but am having trouble figuring out who to see. I have heard good things about Dr. Goebel but I called and he is only working part-time now and can't see me for a few months. I may have to just suck it up and make an appointment with him and wait it out. I found another that sounded promising but when I called they said he needed a referral. I just wish I knew which doctors in the St. Louis area will prescribe anti-virals and believe in the theory. My current doctor (Dr. Benecke) is supposedly one of the best in the area but he does not prescribe anti-virals.
There is a thread in the old database forum called something like 'doctors who have been known to prescribe antivirals'. You might check it.
I keep meds I take long term in the fridge. I heard about it somewhere. Don't even know if it works but I still do it.
Well, I just put in a request for a new prescription for Acyclovir. Lets hope my GP will let me give it another try. Fingers crossed.
I wanted to add that the bottle I had in my medicine cabinet expired last month and I had one refill available but it said on the bottle that the refill was available until 7/28/2014. So I just missed my chance. Too bad I hadn't thought of it earlier.
Can you have the pharmacy call Dr to refill it? Here's something I noticed after a wonderful but very busy weekend, and then getting some bad stress about a family member. And my Oto always said good stress,(excitement,etc.), can be just as bad as bad stress. Today I have some ear pressure, and mild tinnitus. I'm also off balance and bumping into things. I added and extra antiviral pill to my regimen. That brings me to 1600 mg. today. I usually maintain only 800 mg.,a day but for this busy weekend I upped it to 1200. I feel that I need the extra to keep me stable. So the antivirals have gotten me to a point where vertigo spells have not affected my life. I haven't had one in over a year, but there can always be small setbacks. I hope you're doing better today and that you can get what you need. I have never used Lysine as many others have. The antiviral was my saving grace.
Still the same but add to that the exhaustion and I'm feeling like all I should do is rest. This too shall pass. I wonder if anyone else on an antiviral regimens get these setbacks? I attribute it to stress and over doing it.
I had mild set backs about once a year for years. They are rare now if i stay away from caffeine, antihistamines and dont get sick.
when one is fatigued, sick, stressed etc MM symptoms get triggered, anything that weakens the immune system will trigger symptoms even on AV's, that's why we are advised to increase our dose at those times.
Well, my doctor finally agreed to give me a prescription... but she would only do 400mg, twice a day. Sigh. I know that is much lower than what Dr. Gacek recommends to start off with. Is it worth trying at that dosage? Or would it only aggravate the virus?
I dont think it would aggravated the virus but it might give you the idea that antivirals wont help you when indeed they might if taken in the needed doses.