Diagnosed with Meneires 15 months ago. I had three vertigo flare-ups last year. And three this year. But this year I got the full-pressure in my ear. I thought I was going to go deaf. Gave up on ENT, all he wanted to do is diuretics and steroids. Went back to GP who is also into natural means of healing. I told him I wasn't concerned with the vertigo since I only had it three times last year and three this year. Both years between January and June. BUT, this full-pressure was scaring me and I thought I was going deaf. We tried 14 days of fluconozole and acyclovir and after four days my ear had cleared up and my hearing was actually good. I didn't want to stay on meds so I started looking into natural ways of healing. But, I had relief from one of these two meds and didn't know which one. When the meds ran out the full-pressure came back. I didn't know if it was the anti-fungal that helped or the anti-viral. So, we tried a 14 day prescription of fluconozole. After a week there was no relief. Then I tried Olive Leaf extract, garlic allicin, and fungus fighter and they weren't doing anything to help. I didn’t think it was fungus after this. Then we found a study that said 2400 mgs of acyclovir for 3 weeks could help. So he wrote a prescription for that. I took the acyclovir for a day and then I found JOH and then this forum. I went out and bought Lemon Bio-flavinoids, L-lycine and vinpocetine. The next day I had a vertigo flare-up. A light one. I mean I couldn’t walk and stumbled to my bed and had to sleep it off. But, it wasn’t like a couple other flare-ups that I have had. You know, where you can’t walk and start throwing up. A couple days later I drove up to the top of New Found Gap, which is around 5,000 feet and on the way down I had to pull off the road and let my wife drive. Half hour later I was puking my guts out and felt bad for about four more hours. However; since I have read everything on this forum and some of the archives I saw where some people got worse before getting better. So, I kept taking all four every day. And every day around two in the afternoon I would get a flare-up. After 10 days I stopped taking the acyclovir but continued taking the other three, 3,000 mg of L-Lysine, 20 mgs of vinpocetine and 2,000 mg of Lemon Bio-flavonoids. Now I am having a flare-up of vertigo about every other day or even two days. The last two times I was shopping and had to sit for a while and then today I was actually working. I was entertaining a class of preschoolers with my drum, cymbals, guitar and harmonica as well as singing. Because I was sitting I just kept playing and singing for another forty minutes. I sure was hoping I wasn’t going to get the puking flare-up. I didn’t. I waited until everyone left the room before I tried to stand up. I was very wobbly and felt terrible. I stumbled out without anyone noticing. I acted like I was kind of dancing my way out. Then I sat in my car until I was well enough to drive. All in all these latest episodes are lasting about 3 hours. My ear started off a little full-pressure today but lately my hearing has mostly been good. I’m hoping that the episodes are getting lighter and easier to deal with. I’m also wondering if all these recent episodes are the virus freaking out because of this regimen I am taking. And I’m hoping it’s making a Custard’s Last Stand. And…….Custard is going to die!!!!! I ordered the pycogenol and will start taking that on Friday. Thanks to all that host and post on this forum. You have given me hope!! And a positive feeling that we are all going to beat this together!!
I know hearing aids help with the pressure a lot. I think its how the sound is put into your ear. Sometimes meds that help one person will cause a flare up in another. Also I have found if I cut salt out totally I will get sick so I have to have some salt in my diet. I hope things get better for you so glad you have Doctor willing to work and figure things out often that isn't the case.
You have found the answer. You respond to antivirals. Keep taking them until you can sustain remission without them. Try 3 months (assuming there is no kidney, liver or other problem that makes them contra indicated for you.) Three months has been the minimum I have heard of being able to reach that point. Many take them for many months and years and others take them on and off (after the first 3 months) as needed as I do. IMO, if you let yourself go deaf in order to avoid some hypothetical side effect that you have not experienced and has not been discovered in the many trials this drug has gone through, well I don't get that reasoning. Lysine has been used by many on this board but it will take longer than antivirals and while you wait, damage to your ear will continue. Your source on lysine on this board is John of Ohio. If you find a 'natural' substance that has this effect for you, it has the same risk of doing something you don't want as much as any FDA approved med. There are no substances that can make only good changes in our bodies. Good luck.
As June said, I was exactly the same with the antivirals. I still maintain a dose of 800 mg. everyday. After 3 months I noticed a definite improvement, but still had my off days. After 6 months I was vertigo free but at times experienced a sense of being off balance. I occasionally have tinnitus and pressure but I blame that on the weather and I can function with that. It's the vertigo that wrecked havoc with my life. I sure wish you good luck and keep us posted. The initial dose for me was 400 mg. 3X a day. I've read of some whose dosage was higher.
I agree with June, stick with the acyclovir sounds like you were responding to it. Lysine is good if you do not get any side effects but takes longer than the acyclovir to give relief and I believe you can take lysine while taking acyclovir. Some need to stay on longer than the 3 weeks on 2400mg of acyclovir before reducing. Everyone is different.
also 3 weeks of ayclcovir is not the end of the protocol. Once you feel vertigo relief on the 2400 mg you reduce to 1600 mg for another 3 weeks, if vertigo is still under control you reduce to a maintenance dose of 800 mg a day. If when you reduce your symptoms return go back up to previous dosage level and try reducing again after another 2 weeks or so. when under extra stress, allergy flare ups, fatigue, getting sick increase your dosage by 1 pill until that situation passes.
Personally I have found (more thru error) that it is too difficult to figure out what is working if I throw everything at it at once. If it were me, I would go back on the anti viral and eliminate everything else. Need to stay on it for a while though, don't think it is a one week quick fix. Then if you need an "extra" something try to add in one at a time giving space between to understand what is impacting you. Next, while I realize you do not like taking drugs, I HIGHLY recommend that you ask your doctor for a prescription of Lorazapam/Ativan. I have it for when the vertigo hits. I put one under my tongue and it significantly reduces the length of the attack. And because it dissolves quickly under the tongue it gets into the blood stream immediately - and therefore puking doesn't make it worthless. For me, it reduces my attacks from 4+ hrs to under an hour typically. My doctor usually prescribes 20 with no refill. Some active periods, I need refilled in a month; other times I can have that bottle with me for 3-6 months and never need it. It is a highly addictive drug if taken regularly I believe - but for me I have not needed that often because my attacks typically come in clusters. Good luck
Good Morning Everyone Thanks for your suggestions This morning I awoke with some fullness-pressure. I took 1,000 mgs of lysine on empty stomach. ( a little acid burn in stomach ) Waited 20-30 minutes before breakfast. Then took 10 mgs of vinpocetine and 1,000 mgs of Lemon Flavs. Two hours later as I am singing in another preschool I get vertigo. I get dizzy and hot, start sweating. After children leave I sit for awhile and then wobble out to my car. I have now wobbled across street to library where I am writing this. I am still wobbly and disoriented. I'm sure some must think I am a typical library drunk. I try to disguise my wobblieness with exagerated dance like moves. I am experiencing less pressure, but still some and some nausea. The tinnitus is screaming. I should be lying down but I refuse to. I see where some of you think the acyclovir (antiviral) is better than the lysine,vinpocetine, and lemon flavinoids (antivirals). My question to you and myself is if I just did acyclovir would I be having all these vertigo flare-ups? I am going to stay with the Lysine, vinpocetine and lemon flavs for the rest of today. If I awake tomorrow with ear full-ness pressure I will just take the acyclovir. I'm concerned about the vertigo flare-ups, but if this is something I have to go through for awhile to get rid of the ear fullness-pressure than I will persist.
I just want to reiterate that I only had three vertigo episodes last year and this year. But, as soon as I started taking the antivirals I am having numerous episodes.
I misread your original post. I am still unclear what you were taking and did preceding the new vertigo attacks. I do not see how you can guess what is causing what when you are trying so many things at once or so closely together.
I reread your post again too. Your post said you took acyclovir for 14 days and had a nice improvement, then you took it again with JOH and felt worse. As June and nicmger said you are trying too many things at the same time to tell which is making you feel better or worse. I still feel you should try the Acyclovir again only, and stick with it for 3 weeks to see if you have any improvement. Then make a decision from there.
Thanks again for responding. Back in June (no pun intended) I think it was.... Because of the full-ness pressure, not because of vertigo or tinnitus, I started a combo of Fluconozole and Acyclivor. After four days my ear was clear. No vertigo, still tinnitus. But, the clearness only lasted three days. Two days of full and Then two days of clear and then full again. Those few days of clear gave me hope. What I had been reading was Joe http://joebongiorno.com/menieres-disease he stared by taking prescription anti-virals (800mg acyclovir) , l-lysine (3g/day) & vitamin C (3/gday). This gave him relief for about 3 months. Symptoms started again and he started taking fluconozol while continuing his antivirals and after four days things cleared up. But he only had a 7 days script for fluconozol and then the symptoms started creeping back in. Then he got a 14 day script for fluconozol. And along with his antivirals his symptoms again cleared in four days. He stopped the fluconozol. But stayed on his antivirals and was great for five months. The symptoms began creeping back again and immediately started the fluconozol again and symptoms never got bad and were gone in a few days. He then and I quote, “This prompted me to start looking at natural approaches to yeast/candida control to prevent the fungal infections (not wild about prolonged/repeated prescription meds) and I got on a natural regimen, mainly of probiotics (20-40 billion/day) and a garlic supplement before each meal. I also stopped drinking white wine & soda (high in sugar). I lowered my sugar in-take in general, which wasn’t particularly high, but I watched it closely. My studies also showed me a connection between mold allergies and fungal infections. My allergy testing showed that I was allergic to mold. Food allergy testing showed an aversion to cheese (has mold) but not all dairy. I was also highly sensitive to milk whey protein. Gone was dairy from my diet! To this day I have not had another episode. I still have some bouts with tinnitus, but never sustained, usually just a few hours once or twice a week in the morning. I continue with daily doses of l-lysine, vitamin C & natural anti-fungals. I will not hesitate to hit the prescription anti-fungals again if symptoms return. i have noticed that after taking anti-biotics, my symptoms increase, showing a very clear connection to a fungal infection. Anti-biotics deplete your intestine of candida fighting bacteria.” He gives credit to his treatment plan from the archives with taximom http://www.menieres.org/forum/index.php/topic,25945.0.htm He had me sort of convinced it was fungus. SoI got my Doctor to prescribe the fluconozol and 2400 acyclovir and my ear cleared up and I did not have any vertigo. I didn’t want to take both drugs and wanted to find out which one was working. That’s when I just went to fluconozol, but it didn’t work. Then I started exploring this forum and found JOH regimen and acyclovir combo. Maybe I should have just tried the acyclovir alone because Together they are probably causing the vertigo. Most days my hearing has been clear but the vertigo is very frequent. The lysine on an empty stomach is not good for me as I have GERD and it gives me heart burn. Tomorrow I am just going to do acyclovir. If acyclovir works I will slowly introduce the others. Thanks again
Antivirals take months to work completely. It is not an on off switch, it is more a zig zag two steps forward and one step back for a long time. Imagine you had shingles or mono. Would you expect to be completely well as soon as you started to take anti virals? Remember, damamge has been done. Even if you knock the virus back, the tissue needs time to recover. My suggestion would be to ty the antivirals for 3 months and not take a bunch of other stuff at the ame time. If you get side effects, you want to know what caused them and if you get well, you want to know what helped.
Thanks friends..... I am going to try the acyclovir only for the next few days and if I don't have anymore vertigo I will get another refill. Fingers are crossed.
Is there an edit button on this forum. After I post I see where I can make things more clear. Like when I said I'm going to try the acyclovir only for the next few days. I meant I am going to try the acyclovir for the next few days and nothing else.
I am a new user and new to MD. I have only been fighting this disease for 2 months, with 2 vertigo attacks, off and on ear fullness and dizziness. I was astonished to read that it could be virus related b/c I am also having my first experience with shingles. 2 days ago my Dr. put me on Valtrex and L-lysine for the shingles. I guess I will soon see if it helps my meniere's. Initially the meds have made my ear fullness more constant, but the dizziness is less. Too early to tell much more, but the shingles are improving! In a strange way I am kinda glad to have the shingles b/c my ENT would never have prescribed anti-vitals. He only believes in reducing sodium and Triamterene (Diaxide).
Hi Diana, The dosage for shingles might not be high enough and long enough for MM. The starting dose for Valtrex for MM is 3000 mg a day for 3 weeks then down to 2000 mg for the next 3 weeks if your vertigo is under control, then 1000 mg a day for maintenance.
Yesterday I only took the morning dose of Lysine, vinpocetine and lemon bioflavs and had vertigo within two hours that lasted 3-4 hours. Last night I took 800 mg of acyclovir and this morning another 800 mg of acyclovir and I haven't had vertigo today. I have not taken any lysine, vinpocetine or lemon bioflavs today. I just took another 800 mgs of acyclovir and I will take one before bed. My ear was still a little full this morning but cleared up around 10:00 am. So, for now it's just going to be acyclovir. I am also taking vitamins and probiotics. I'm still in the experimenting phase with dealing with this Meneires full-ness pressure. So, I am not passing on any advice. But, it feels good to talk to people that understand what I am going through. Thanks again everyone!