Hi All, I was diagnosed with MD in 2018. At that time, I had experienced several events of extreme vertigo, hearing loss in my left ear along with tinnitus and the feeling of fullness in the same ear. I believe that I originally contracted the disease through some kind of infection. I remember being on a long haul flight and trying to equalise my ear pressure when I heard a "pop" sound and shortly afterwards had straw coloured fluid coming out of my left ear. When I got off the flight, my balance was pretty poor. I took a taxi home and felt like I was still flying. When I got home I ended up on the couch with the world spinning while feeling nauseous. This attack lasted a few hours. Over the next few days, I had several more attacks, each lasting several hours and would find signs of the same straw coloured fluid on my pillow after a night's sleep. I went to see a specialist ENT who ran various tests and diagnosed MD. He basically said there was little that could be done, gave me some anti nausea tablets and that was it. I then had no more attacks. I ended up with about 30% hearing loss in my left ear and persistent tinnitus, which I have been living with until now. Occasionally, my balance would be a little bit off, but nothing major. But last week I noticed that my hearing loss seemed worse than before, and the feeling of fullness was worse as well. I had my ears cleaned a few weeks ago so knew it wasn't a wax buildup. Sunday and Monday this week, I had severe vertigo attacks, one lasting about 4 hours and the next about 2 hours. So it would appear that MD is back with a vengeance. However, no vertigo at all yesterday and so far none today. I am going to go see an ENT specialist this week, but want to go in a bit better armed with knowledge of what I should ask for. Reading on this site, I see a lot about the possible viral causes of MD and am very interested in trying the JOH regime. I have ordered several of the components and the L-Lysine should arrive today, so I will start on that. But if I see a specialist this week, I should be able to ask him to potentially prescribe testing for viral load and maybe get him to authorise anti-virals. So what type of testing, and what anti-viral drugs should I ask him for? I see Acyclovir and Valacyclovir mentioned in a research paper - so are these still the "Gold Standard" or is there something else? I am also interested in upper cervical chiropractic in case that will help. So am looking for a local practitioner to have a chat with. Anyway, that's about it. Sadly it looks as if the MD is back, but I am going to use all the information on this site to try and combat it as best I can!
For me when that ear starts to feel full and the hearing loss increases...that's a sign that a vertigo attack could be coming. So my goal over the years has been to keep the ear as clear as I possibly can. The problem of course has nothing to do with "wax buildup" or any exterior ear cause; it's behind and inside that the fluid buildup occurs. So my solution has been diuretics and a course of inner ear suppliments that work on fluid buildup and balance. That along with the Lysene and bioflavonoids seems to be holding off the attacks. Other than on and off dizziness, no vertigo attacks for two years now.
Thanks for the quick response. As you say, I also have been keeping my ears clean, just so I know there is no problem there. Microsuction every 6 months or so. I have very narrow ear canals anyway, so need to keep on top of it. That way, I know that any feelings of fullness are not related to wax buildup. What diuretics and inner ear supplements are you using? I have some Lysene, arriving later today, so will make a start on the JOH regime with that ASAP. Will add the lemon bioflavonoids when they arrive in a few days and then the rest of the supplements step by step. ENT specialist is now booked in for Friday morning, but I haven't yet been able to find an upper cervical chiropractic specialist.
The diuretic is hydrochlorot. The suppliments are "Inner Ear Balance IEB9" and something called "Clear Sinus and Ears". They are expensive (especially the inner Ear Balance) but I really think they have helped do the trick. I take them every day and go full dose if my ear starts to feel bad. I also take an allergy pill every day as I sometimes suspect that my allergys can bring on the ear problem too. Whatever it takes. Anything beats the deafness and especially the vertigo attacks. The suppliments can be found on Amazon.
A little update from today's visit to the ENT consultant. We discussed the recent attacks and I asked him to prescribe Acyclovir or similar anti-viral therapy. He refused on the grounds that there was no peer reviewed, double blind medical evidence to show there was any benefit, and that at this point, there would be no point anyway He wants to start a series on intratympal steroid injections, based on the results of this recent 2020 study: DEFINE_ME The reasoning here is that the steroids seem to give the same results as gentomycin in terms of stopping vertigo, but without any permanent hearing damage, and that some patients even seem to recover hearing with this regime. I can't say I am thrilled about the idea of injections directly into my inner ear. He also prescribed a diuretic (bendroflumethiazide) and buccal prochlorperazine maleate tablets as a "parachute" to be taken immediately in case I get any more attacks. We also discussed betahistine, which he said was unlikely to help at all, and was viewed in his opinion more as a placebo than having any real value. So....it looks like I shall not be getting an anti-viral prescription, so shall be continuing with the JOH regime while I think about the steroid injections and whether I want to go forward with those. I started on the Lysine three days ago, and have added Gingko Blob, simply because it arrived. So far no issues or any difference in the MD feeling, but I will say that the 1000mg Lysine pills are big buggers to swallow.
New to the forum and new to Menieres. I believe a lot of my problem stems from severe allergies throughout my life. Now, I get fever blisters in my sinus cavities, that’s when I was prescribed Valacyclovir. Over time, tinnitus got excessive. After a couple of falls, I was sent to balance physical therapy. I did not think it helped until much later. Yes, I was a physical therapy drop out!. I read everything I could about my symptoms and decided to have my hearing tested. I had lost 30% hearing in my right ear. After getting hearing aids, I still had tinnitus and now bouts of vertigo. It was during this time that the physical therapy really helped. When I was in the shower, I was cognizant of the pressure on my feet. I could feel when I was starting to lean in any direction. This was one of the exercise they put you through! After a cat scan of my brain, my ENT put me on a very low dose of diazepam, steroids, and histamine shots. I’m supposing he was ruling out a tumor! The diazepam helped immediately. I’m afraid of it, but it helps the vertigo so much. As you can see, I’m still searching for answers.
Well, I found out how to get Acyclizine without my ENT doctor prescribing it, so I have some on order. I figure I may as well try taking that, plus the JOH stack, and go for the intra tympana steroid injections as well. Nothing like going all guns out against the MD, eh? I don't believe any of these three approaches will interact against each other as they are all so different. Lemon Flavonoids arrived yesterday, so now I am taking Lysine, Gingko Biloba and LF as part of the JOH regime. Vinpocitine should arrive next week. I don't notice any effect, but wasn't expecting to for several weeks at the very least. So far, no vertigo since last Monday, the pressure in my ear seems less, so maybe it emptied during the attacks.
There have been many folks come thru this website that have used anti-virals with great success...100% elimination of Menieres and I'm one of them. You should consider "shopping" doctors until you find one that will prescribe some for you. Ask for 3000 mg per day and continue uninterrupted for at least 6 months before giving up on them. My family doctor prescribes valacyclovir for me, I've been taking 3000 mg/day for the last 3 plus years and he's ok with that. Fullness has disappeared, hearing is back to normal, vertigo is gone and only slight tinnitus remains. And I was one of those folks who had to push the puke bucket in front of me as I crawled across the floor to get to the bathroom during vertigo episodes that lasted for 12 hours.
Well, I found out how to get the Acyclovir and it will arrive next week. So I shall definitely be jumping on it. The dosage of Acyclovir is less than Valacyclovir, right? What I have read (Gacek) was 800mg three times daily for 3 weeks, then twice daily for 3 more weeks and then 800mg daily as a maintenance dose. Given your success above, I will be certainly hoping for a positive result. I almost can't imagine what it would be like to have an almost normal ear again. Congratulations!
First steroid injection is now scheduled for Friday. Before I jump into this, does anybody have any negatives - and also does anyone have any idea on what I can expect to feel after the jab? I am meant to be tending bar about 6 hours later.... The steroid will be Methylprednisolone. I can't really find many negatives on the web, other than maybe it is a shorter term treatment than Gentamicin, but I am really not ready to go there yet. So if the steroids may bring some relief and some protection from the vertigo, then bring it on.
My Acyclovir arrived today, so I have started on that. 800mg three times a day to kick off with for three weeks, then 800mg twice a day and then a maintenance regime of 800mg daily. This is the regime from the Gacek paper so is what I am going with unless anybody has any better ideas?
I got a series of steroid injections in my ear back in April I believe. Doc said I had a 50/50 shot of it doing anything. So I figured what the hell. I'll try anything. Unfortunately, I got nada. Not even a tiny improvement. I had three consecutive shots of dexamethasone (I think). The procedure was pretty straight forward. I had to pick up the meds on my way to the dr. office. I sat in the chair and turned my head. The first time, he put a tube in my ear to help with the later injections. That whole process was...weird. But nothing bad. Then he injected part of the steroid and I had a vertigo attack. Hadn't felt that in a long time. But it was quite brief. It passed in probably 30 seconds, and I just sat there trying not to turn my head. Honestly, the worst part of the whole thing was the medicine trickling down my eustachion tubes into my throat and being able to taste it. Yuckus! After the fact, I was fine. Walked out and drove home. Ear felt a little full right after but cleared up. I was probably back to normal in an hour or two. Anyway. I went on three consecutive Thursdays. Hoped for the best but expected nothing. And nothing is what I got. But I had to try.
Welcome to the club that no one wants to belong to! From my Ménière’s journey, may I suggest - yes, try the alternative approaches. But also try whatever the doctors suggest (low salt diet, diuretics, Serc). Keep records of what you try, any positive effects, and any side effects. Hopefully something will work, and/or you’ll be in the lucky group that resolves on its own. But if not… and you get to the desperate point of wanting gentamicin injections or surgery, there won’t be a delay caused by a doc asking you to try one more pill first.
So my first injection went exactly as Bazookaman's. Wasn't too bad all. The Doc didn't put a tube in though. He used some local anaesthetic to numb the ear, then made two holes with the syringe. One to fill the ear with fluid and the other to allow pressure to equalise. Then he filled me us with steroid solution. It felt a little strange, but no pain. It was a pain to have to sit in the chair with my head tilted for 40 minutes, not being allowed to swallow, with saliva building up in my mouth. Next time, I shall get a cup to drool into! I was very slightly dizzy for about 30 minutes or so, then no more. A little bit of pain in the ear for a couple of hours and also the taste of the liquid. I drove hime just fine. So far, I don't notice much difference. Sometimes, it feel as if my ear wants to "open" a bit more. The Doc did say it would likely be a month and the other two injections until I noticed any difference if at all. Oh well....I am keeping on with my JOH regime and the Acyclovir as well.
Doc told me very much the same thing. That it could be a month at least before I felt an improvement. If any.
A little update. On Sunday I had a minor attack. This was actually not as bad as previous ones. I was sitting eating and suddenly felt the vertigo come on. Looking at the clouds, they were trying to rotate, and with my eyes closed, afterimages were rotating counterclockwise. I didn't feel particularly nauseous. I hadn't felt any excessive ear fullness prior this, which historically has been a sign of an attack on its way. I immediately took 2 Buccastem tablets (which I now carry in a key ring container for emergencies) and sat in the chair to wait it out. After about 2 hours, my balance was back and I was good to continue with my day. So this attack didn't have me needing to lie down, sitting was OK and I could keep my eyes open and look around. It was milder than previous ones which I am thankful for. Anyway, I have now been on the JOH regime for a bit over 2 week, I have been on Acyclovir for exactly two weeks and it is ten days since my first steroid injection. This was the first Meniere's episode in this timeframe. I have read some things that say to expect some flare ups in the early days of JOH, same for Acyclovir and my ENT also said I may experience some flare ups after the steroids. So....I am not surprised to have had one. I wonder if it is the virus trying to kick off under the onslaught of the broad spectrum treatment. Maybe something is happening.... I will keep going and see...
I had the 2nd intra-tympanal steroid injection today. It went exactly the same as the last one. I am back home feeling a little bit dizzy with a slightly sore ear and the taste of the steroids in the back of my throat. Give it another hour or two and I will get rid of the taste with a Negroni. Apologies, but I am using this thread more as an ongoing diary than the original introduction it started out as....
hello, we are on the same path. I do not use acyclovir or valacyclovir. I used JOH except for some products, but I still have balance problems. There is nothing worse than feeling dizzy. The idea of writing here on a daily basis and not being alone is still nice. I will have my third steroid injection tomorrow. I have been diagnosed with total hearing loss in the right ear and meniere in the left ear. I don't have any adaptation problems to life with one ear, but it is unfortunate that I have meniere in the hearing ear. I hope there is a medicine that solves all of our problems.
Prescription chosen: Serc two 24 mg three times a day, a diuretic 250 mg (diazomide).After four months, I convinced my doctor to have the surgery. I hope the injections (five shots in total) will help and they won't be necessary.
I had a very minor event on Tuesday. I'm not even going to call it an attack really. I felt a little bit wobbly in the morning, but could walk just fine. Went out shopping and when I came back, the wobbliness increased to the point that I had to lean on the wall waking from kitchen to dining room. I sat down and with closed eyes could see a little bit of counterclockwise rotation. No visual rotation with open eyes. No feeling of nausea at all. This lasted about twenty minutes, and after an hour or so of sitting quietly I was back to normal. I wonder if this would have been a full blown attack had I not been doing the steroid injections, JOH and the Acyclovir? If so, then it would appear they are getting milder and milder and at least one of the three treatment modalities is having some effect. I can't say that I have noticed any improvement in my hearing or my tinnitus yet, but it is still early days.