Hi all, I have been on Valacyclovir since the beginning of December. I was on 3,000 mg per day in Dec and reduced down to 2,000 mg per day in January. I went down to 1,000 mg per day for the last 6 days in January but I felt my ear fullness significantly increase. I panicked and went up to 3,000 mg for February as it is a very busy time of year for me work wise. During Dec and Jan, I was averaging a couple of vertigo episodes per month. In February, even though I was at the high dose, I had 6 vertigo episodes. This has continued into March. I will say that my stress level has been very high due to work and family issues. I am questioning whether the Valacyclovir is even working for me. I think that my head fullness and brain fog is better. My hearing has not improved. Before valacyclovir, I didn't have that many vertigo episodes then either. But the aural fullness, brain fog, and hypecussis were horrible. I do feel that the other symptoms have calmed down except for the aural fullness. Do you think this could all be due to stress? In addition, we are approaching Spring/Summer, when history has shown that my symptoms really flare up. I definitely think that is due to allergies. My ENT and I are also looking at that aspect. I cannot do allergy shots or oral drops as I have had an anaphylaxic reaction in the past. My ENT is pretty skeptical with the anti-viral approach and I am trying to prove to him that this could be a part of my disease. So far, he is still prescribing them to me. Has anyone had any type of experience like this? It seems like most of the folks can follow Dr. Gacek's study and have very positive stories. And they aren't on the full dose for months.....just weeks. I am getting discouraged. Thanks for your thoughts!
First thing that comes to mind is what brand val are you taking, some have poor results with certain generics. Second thing that you reduced too quickly.. it took me 1 year to be able to reduce to my maintenance dose w/o getting symptoms. The fact that some symptoms have decrease is a good sign the anitivral is helping. I would not decrease from 3000 mg unless you are vertigo free for at least 2-3 weeks. Stress is definitely a trigger for just about all of us. allergies definitely trigger MM symptoms. I used to call April vertigo month for me. w/o fail I would get attacks every April before being on an antiviral.
I have had success with anti-virals, but I haven't been able to go down to less than 2500 mg/day, without a recurrence of symptoms. I also experienced an increase in symptoms when the generic brand I was taking was switched by the pharmacy. Which brand are you taking? Also, it occurs to me that your vertigo might possibly come from either MAV or BPPV. Have you explored those possibilities?
I started with the Mylan generic last summer and had a horrible reaction. In December, I got up enough nerve to try it again and took the brand name. That worked fine but it was outrageously expensive. Based on the advice from folks here, I switched to the Northstar generic brand on February 10th. I thought I was doing ok with it. I didn't realize so many of you had to stay on such high doses. I have been tested for BPPV and do not have it. I don't think I have MAV. I don't have the migraines and do not get everyday dizziness. I get vertigo....fast and hard spinning. I am lucky, my vertigo does not last long but it definitely causes immediate imbalance and nausea and just an icky feeling for several hours. My understanding with MAV is that the vertigo lasts over 24 hours and there is significant motion intolerance. I don't drive much these days due to the quick onset of my vertigo attacks but when I do or am a passenger, I am ok. I do think this high stress is definitely impacting me. It is just a rough time with my family and it is something I have to deal with....life. Thanks for your thoughts, everyone. I'll try to stay on the high dose for at least 6 months if I can continue to convince my doctor to continue prescribing it.
Stress is a MAJOR trigger for me. I have no doubt that a lot of my more active periods of cluster attacks (before anti virals) were brought on by stress. That is a very hard one to control of course - but perhaps try to figure out if there is anything you can do to try to bring your stress down.
My MAV never lasts anywhere near 24 hours. What a horrible thought. I hate even thinking of that. I don't think it ever has lasted more than about 2 hours, but usually it is probably more like 45-60 minutes. I do get migraine headaches, but not along with the MAV. The MAV and the headaches have different triggers for me. When a MAV attack is over, I usually feel remarkably well, and it will seem bizarre that I feel comfortable going out and doing something when I was feeling so awful not long before. I don't have motion intolerance. From what I understand the MM vertigo lasts longer, and people feel wiped out for a day or two afterwards. I don't think you need to stay on the dose for an arbitrary time like 6 months. If you start feeling a lot better you could try reducing, but if symptoms come back just go back up. I was never able to reduce to 2000 mg/day for more than a couple weeks, so Dr. Gacek suggested I try 2500 mg/day. I was able to stay on that for a long while. I think that changed when I switched generic brands, but I don't know for sure because I didn't realize I'd switched until much later.
Thanks bytheBay. I will continue to experiment with dosages. I wouldn't be surprised if the generic threw you off. Just 3 days ago, I refilled my Northstar brand, the generic brand that seems to be working. Within 36 hours, I was having weird vertigo sensations. Since we have been talking about this on the forums, I thought I would take a look at the new prescription. I couldn't believe it. It was manufactured by Aurobindo. It looked exactly like my Northstar brand. I called Target and complained and they gave me 5 pills last night until they can get a shipment in. I was shocked that I noticed something "off" and that had to be the cause. It is so unbelievable that the inactive ingredients can affect us so differently. How did you determine that you have MAV versus meniere's disease?
I'd noticed that the vertigo was often starting when I was at the computer. I realized that I was starting to have eyestrain at the computer because my eyes are aging (I was about 46 at the time) and I'm losing some of my closer vision. Around that time my ENT suggested I might have MAV. When I got prescription computer glasses the vertigo stopped. I continue to notice that eyestrain for various types can bring on vertigo for me. In addition, when I was reading about people's MM vertigo, I noticed that they talked about how wiped out they are afterwards. That is not the case for me. And wow, that's a striking story about generics.
hi i live in iran and 4 years ago menier come to my life . that time every 10 days i have attack and every things for my life go to be dark ...two years ago after i read a Article about Antiviral that maybe slow don menier i show the article to my doktor but she get mad ... i have a Pharmacist friend and he tell me i can use the period from Acyclovir and this not hurt me i used any 6 hours one tab of acyclovir 400 for 15 days that time i just use betacerk . after that for one years i dont have attact and after one years i have a big stress i have another attacked and another time i used acyclovir 400 and attacket gone . but some time i have Dizziness and my Hearing going low frome that time i dont use any drag just molty vitamin and gingoboliba. please pardon me for my por english in iran we dont have brand medicine and thay made in iran and thay are chipe
I'm not sure how the system works in Iran, but try to find another doctor who can help. You're very lucky that such a small dose is helping. If you can get the script, try to take it daily to avoid anymore attacks.
Welcome, Tolouee! That is so great that you were able to get acyclovir and it helped you. It sounds like you need to do a little more between attacks to keep the Meniere's under control. Are you able to read the resources here okay?
thanks for Source from the site i control my meniere . and with the antiviral i don't have attack for two years but i do not use a lot just two 15 day period. the doctor in my city are not up to date our do not want doing new and they just give Diuretic and betaserc and some of them telling for surgery our injection poison in ear . i don't like use daily drag and with the help of site i find anti-viral and this help me and another thing about food and stress i am careful about them with the information that i find in the web . i am 46 years old and this time i just lost 50% of my hearing and some time i have low vertigo but no attract .