Relapsed after 18mos

I just responded to your other post. I think relapses are part of the disease. I have yet to identify any triggers for mine. It really shakes you when this happens out of the blue. Since you have upped your meds have you noticed any difference?

 

OK, nothing against anti virals. But can someone tell me, why, if they work, then why they stop working, on almost everyone I've seen in this forum. Then, we THINK, with some tweaks, they start working again.

Keep in mind that MM come and goes. So how, can anyone tell what's working and what's not? Unless it's a true, long term, sustained recovery.

It sounds like I'm being against anti-virals. But I'm just being against Meniere's and the mind games it can play on people. I'm sad for us. Don't be mad a me.

 

I think she caught a bit of a cold from her kids and that has caused many people including myself to relapse. I recently got thru a bad 3 week cold without relapsing. I take 500mg per day half Famcic and half Valacyc with black pepper to boost. I cannot stand 3000mg for too long , 30 days max, I would do that if I were you then gradually drop the dose, I believe you will get better. If you don't pay attention to the brand you are making a big mistake. Why trust a pharmacy to decide for you? That is the only pharmacy in your city? If you have to pay cash it is not expensive anyway. Many people here complain that their insurance forces them to take inferior brand. That is a bit silly. You can find discounts on any brand generic that you want and pay cash. Clearly your health is worth it.

 

Pupper I agree totally with you. My first attack I've ever had was at work and it was bad. Then I went just about 12 months and I had no symptoms at all. Everything was normal and I enjoyed it a bunch. I mean so normal I didn't even have tinnitus. I ate and drank what I wanted. Unlimited salt. Then after 12 months of remission, if that is what we call it the disease came back with vengeance on me. It got bad. In matter of fact I got so bad I ended up getting the vns. So with all that being said I really think that the medical docs don't really know enough about this disease to treat it properly. I see that their is alot of speculation on treatment. It is hard to treat something that is under funded and is in your head. The inner ear is next to the brain. It's hard to test something that is in that location. All I know is that when you aren't having problem with the disease then enjoy the moment of normal. Always know that the disease is still their. It will be their always. I hope the best for everyone on this forum. I hat meniers disease. It's awful. It has moved to my good ear. So, I'm bilateral now. I'm in the process of getting out of law enforcement after 15 years. It's not safe for myself or others for me to continue. This disease does not own me. I trust in god for my future.

 

There is a cure for Menieres Attacks. I am now coming up to nine years attack free. Please see my post The Cure for Menieres Attacks.

It's two vitamins - B5 and B6

 

Fisherman
Do you have a good Menieres Doctor?

 

Yes fisherman, I get it! I was really resistant to any of the procedures, or even repeating the vestibular tests or doing vestibular rehab.

Now that I’ve had many drop attacks, and therefore am not working or going to school, not driving... and my hearing loss is severe, and the vestibular nerve is more than 50% dead... and that my tests show my good side is unaffected... and I’ve tried many of the prescription and supplements...I am ready.

I’m agonizing over gentamicin vs laby. I’ve read that gent is 93% effective for people with drop attacks, but that 7% might weigh heavily on my anxiety. Also, some people after gent get a flare about a year out and need a top up. But of course the advantages are it’s outpatient, and might spare some of my remaining hearing.

I need to research more on laby - I’m assuming it’s 100% effective for the vertigo, but will definitely make me 100% deaf in that ear. I would get the crossover hearing aid that pipes sound from deaf side to hearing ear. I just want to know more about any other risks, and to feel confident that I’m in good surgical hands.

If you’re hearing is still good, the VNS is an option, but is a little scarier of a surgery.

I’m not telling anyone what to do - just sharing my experience and thoughts today. This is helping me think this stuff through.

 

I found the posts by Please No Dizzy to be helpful as I was going through the laby/gent decision and the laby experience. I was about a month behind her and posted about my experience, too. Maybe these posts will give you some information or bring up things to consider.

I had no useable hearing left on my bad side, and chose laby because I needed to be free of the anxiety as well as the vertigo. It was definitely the right choice for me. However, it would be a different calculation if I still had some hearing in the affected ear that could possibly be saved. In that case gentamicin might have been the best choice for me.

 

Fisherman, in most cases, when it comes to invasive procedures, gentamicin injections come first, then shunts (if you're feeling lucky), then VNS, then Laby. Gent shouldn't cause much hearing loss, if any at all.

More info on gent here:

Skip to "Last Resort Treatments"

Gap, JCPenney, Victoria's Secret, Foot Locker: 465 store closures in 48 hours

More on Gentamicin
Intratympanic Gentamicin Treatment for Meniere's disease

 

AnneT: "I’m agonizing over gentamicin vs laby." Is it a difficult choice because you still have ok hearing in the bad ear? I can't remember your hearing situation.

 

Hi Pupper
My hearing on my bad side is down to ‘severe hearing loss’ range, with about 30-40 % word recognition in ideal situations. In real life, with a hearing aid, I sometimes at least know that someone’s talking in that ear, and know to say “pardon?”

So if it’s gone completely, I’m ok with that. I’ll get one of those hearing aids that feeds into my good ear.

The dilemma for me is whether to have the less invasive, less scary gentamicin but it’s less sure to kill the vertigo (I’ve read 90-93%). Or the gold standard laby, probably 100% sure to kill the vertigo... but it’s surgery. I’ve never had surgery beyond dental stuff and colonoscopy, so I’m just scared.

I’m hoping they don’t push the sac surgery because my understanding it works in only 70%, and as you say, im not feeling lucky on that one.

 

I dont think they ‘quit working’. I think menieres is an immune problem caused often by a perfect storm assault that is too much for the body to fight. Maybe in my case allergies and virus. I think a severe viral infection i suffered months before weakened the system, add allergoes, add an eyedrop suspected of promoting viruses, add an auto immune predisposition from a previous ear surgery, boom menieres. Take anti virals and i get a suden relief of about 60% of symptoms mostly distortion related. Take allergy shots get Get more relief in form of better audiogram. Get sick, backslide some. It is not the drug thar quits working, it is the load on the immune system that changes. I think the antivirals always work but only against virus and that is one of several factors. Just the way it seems in my case. In my case i took them for months but have not needed them for many years now. For me it also seemed like after the virus and allergies were addresses, it took some time for damaged tissues to heal. No proof of any of this.

 

I am saddened to hear of the desperation of other Menieres sufferers. I am a 16 year Menieres victim, but have been free from Menieres for the last (almost) nine years. I was told of the "Cure" in 2010. No attacks since.

Menieres is a vitamin deficiency. All I ask is that you try two vitamins for a week to 10 days and prove if it works. No other medications so you know it is the vitamins. For one week.

1. Reduce your salt intake drastically. No high salt foods, no added salt to cooking or food. A very low salt breakfast to start day. Salt is a known trigger.
2. Take 100mg B6 and 125mg B5 at breakfast each day.

First to go will be the unwell feeling and lingering dizziness. Tinitus will diminish and after a month will be unnoticeable. If you do not reduce your salt intake, you may still get mild dizziness but it will not develop into a full blown attack.

B5/B6 stops Menieres attacks but is not not a cure for Menieres. They stop the dizziness, nausea, vomiting and Tinitus. You still have Menieres but it no longer affects you. Life returns to normal.

Menieres damages hearing and balance with every attack leading to deafness in affected ear. B5/B6 will not repair the damage Menieres has done, but will stop further damage.

Read my post "The Cure for Menieres Attacks" for more details including diagrams.

Just try two simple vitamins for a week. What have you got to lose? Except your Menieres attacks.