I started Acyclovir on 07/22/15, am still on full dose, started JOH regime 08/03/15, taking faithfully, taking more of the vitamin C in hopes of not catching a cold virus, I stopped caffeine in all forms on 09/28/15, read book "Heal Your Headache" and am following the diet restrictions in that, I also added one of my own and am trying to go gluten free most of the time, I have been off of Prozac for 3 three weeks now because it can be a trigger for Migraines, (I think I probably have MAV too due to symptoms) started Amitriptyline 10 mg three weeks ago, but then I read that it may cause tinnitus in ears, and since I have been having loud, serious tinnitus, I am thinking it might be a mistake, so I am cutting my pills in half. I also switched taking omeprazole and am taking Famotidine after reading the headache book. I was disappointed that amitriptyline was adviced in the headache book when it can cause tinnitus. I take Tegretol because of simple partial seizures that I have since a brain tumor was removed in 2006, I was thinking of switching to Depakote but then I read one of the side effects of Depakote can also be Tinnitus. Again disappointed that Depakote was also advised in the headache book when people like me have loud tinnitus already. I had a lot of serious go to bed type vertigo through the last few months and as it was getting me down, I decided to order the Menniet Device, it came last Friday, I get tubes put in my ears on Tues, Dec. 8th, then I can start using it. The eighth was the first day I could get in to see the ENT. He will put the tubes in my ears, the device was advised for me to try last May when I saw an otolarynologist who practices 8 hours away from here.( I live in a small, rural area in Eastern Montana.) He was also the one who told me to google Meniere's. org, and I am thankful to him for that. The otolarynologist gave a diagnosis of bilateral Meniere's, but I wanted to try the anti-viral first, since I am trying to work I need to get rid of this vertigo. The last week and a half, I have started to get vertigo (bad) but it only lasts a minute and then it leaves, this can happen 3-4 times a day, I usually grab 2 Meclazine tabs and chew them right away, but the vertigo leaves before they hit my stomach sometimes, my husband thinks this means I am getting better, at any rate it is better than being in bed all day! I am going to stay on the anti-viral and JOH along with the Menniet device, if I have success with the device I will cut back on the anti-viral. I have 6 weeks to find out if the device works for me, if it doesn't work I can send it back with full refund. I can't find much information on the Menniet device, just a couple of positive testimonials. Am feeling kind of down today, but is also grey and gloomy outside, and I am tired after working 12 hour shifts the last 2 days. :-X
Thanks for the update, Linda. I will be curious to hear if the Meniett Device helps you. I, too, have short vertigo bursts. I usually don't take anything unless I am out and about and start to worry about my surroundings. I then take an antivan under the tongue. It works quickly and calms both the vertigo and my nerves. My vertigo episodes used to be longer too. I thought that since the episodes are now getting shorter, I am progressing to the burnout stage that can occur. My hearing and tinnitus are both getting much worse. I just started antivirals, so they seem to be helping with the fullness. I, too, have been eating healthier and trying to take as little prescription medication as possible. That could also be the reason for our shorter vertigo episodes? What a perplexing disease! It is so hard to figure out what to do!! Keep us posted with your thoughts on the Meniett device.
Linda, also wondering if you have tried Valtrex? I know that Acyclovir is in the same family but perhaps Valtrex might work a bit better? Also wonder if you could try the Epley to fix BPVV (since your vertigo is now so quick)?
Went to the ENT today, but first before I left I dropped one of my hearing aides and a piece broke off of it! So now I am with only one hearing aide for a week! I showed the ENT paperwork on Antivirals, he WAS NOT interested! Ugggg! He wanted me to start hydrochlorathiazide again, I told him about my low sodium last July and ending up in the hospital, and he kept insisting hydrochlorathiazide does not effect sodium, only potassium, so I asked about acetazolamide instead and showed him the copy, but he said it was too small of a study and ordered the hydrochlorathiazide, and told me to eat a banana everyday! He also told me to put sodium back in my diet, the OTO is the one who told me to take it out. I didn't even bother to tell him that I don't eat bananas any more (even though I love them) but they may be a trigger for MAV. I am so thankful the Internist that I see is more open to things that I find out about on this site. Anyway the tubes are in, he gave me ear drops to use for three days and then start using the device after that. He also told me the OTO reported to him that if this doesn't work he wanted me to get decadron injections in my ears. I wish the OTO lived closer, but if things don't look up I will just have to go see him again, he seemed more open to things, he is the one who told me about this site. I still pray the device works. I was slightly dizzy when I went to appointment, took Ativan under my tongue because I thought it was probably nerves, but after I came home I became dizzy in afternoon, I was able to take a nap and have kept the vertigo, nausea, vomiting at bay. But time for some meclazine, hope works go okay tomorrow with just one hearing aide! I was frustrated in office because I had to keep getting closer to hear the ENT, he has a low voice and he kept turning his head down to the paper work, and I need to look straight on at people, I didn't even ask about the Epley to fix BPVV, because at ONE time when I was in his office, I didn't need it, and I couldn't hear him with only one hearing aide, I could hear his nurse and other people I talked to (women) and my husband who has learned to talk louder! The weather here is cloudy and I guess I am just a little down in the dumps! Thanks for letting me vent! I have never tried Valtrex, just acyclovir, which I am still on.
Hi Linda You certainly have been through a bad time. I can't help but see that you are taking a lot of different medications and or trying different things at once. It will be difficult to know what, if anything is working for you. Your symptoms and difficulties sound like I was suffering from 2005 to 2008. I also had MAV and menieres at the same time. Not wanting to add to the mix of medications, but if you are still struggling I would try betahistine or serc as it does stabilize sufferers until they can take a considered look at their situation. It worked for me together with stemetil ( similar to ativan ). That combination did stabilize me, which then gave me the opportunity to concentrate on the MAV and to follow Buchholzs dietary suggestions. I would certainly consider that before having injections of whatever in to your ears. Serc is the first option in Europe and it works well. I believe you can have it made up as a compound in America. Whatever route you take I wish you a speedy recovery or at least control over your symptoms. On a really positive note burnout can happen. I have been well since 2009 with no episodes since then. In 2009 my vertigo episodes became shorter as yours have and they then disappeared altogether. Frank
Thanks Frank, hopefully this meniette device will work, I start it tomorrow, I had to put Cipro ear drops in my ears for 3 days before starting the device. I first started the acyclovir and then JOH. I think they both have helped somewhat, that is why I want to keep taking them while I use the device. I guess I am desperate for "hurry up and now" because of wanting to continue to work for a couple more years. I asked ENT if Decadron shots would cause more hearing loss, and he said no, but I will definitely look into it more before I decide to do that, I have 6 weeks to see if the meniette works, if it doesn't I can return it with a full refund to me, I just want it to work! Do you have any material and dosages for Serc, hopefully I don't need to try anything new, but I would like to be prepared just in case. Nystatin also sounds interesting, But since I have the meniette, I will give it a full 6 weeks!