New Member Intro - Wilson

Hey Tony I'm sorry that you are here. Although you will find great information in these blogs. I have ha meniers since 2012. It started with my left ear and to make a long story short I ended up on the operating table getting an vestibular nerve section in 2015. The surgery was the best thing I could have done to control the vertigo. Then in 2018 I started having the symptoms in my good ear. So, I have bilateral meniers. I've been in law enforcement now almost 15 years and I am medically retiring in June. It's not worth my safety at all. I see you are military. I really hope the best for you. I wonder how you've been hiding the disease. Respond back please

 

Hi and welcome! I'm sorry you're here too. I should probably do one of these new member intros...good idea! Anyway - I had the dexa shot too without any benefit. I was going to do the gent shot but got nervous and backed out. I want to try EVERYTHING else first before I do something destructive. I have about as many attacks as you when things are bad (like once a day). I've been taking the John of Ohio (JOH) regimen for about two weeks now and have noticed improvement (although he states numerous times to give it at least six months, which I will). And I started the B5/B6 about a week ago with good results as well. Definitely worth a try! Good luck! Let me know if you do the shot and if so, how it goes.

 

Have any of you tried Betahistine,(Serc)? My ENT says he has had about a 90% success rate with his Menierer's patients. I just took my first 8mg tablet last night. (ENT is starting me out slow, and will increase dosage as we discover if the low dose isn't helping). I live in US, so I purchased through a Canadian pharmacy. I spoke to a pharmacist yesterday who use to do compounding. He said when he was doing that, he compounded Betahistine for one of his customers who said he really liked the drug. Although the pharmacist couldn't remember why the customer was taking it. I've had MD for about 19 years. Did pretty good after the first couple years of terribleness, through strict diet & duiretic, (in that I didn't experience full blown vertigo, but still had fullness and tinnitus all the time. Some days worse than others. Lost all hearing in that ear, except extreme sound sensitivity.) Three months ago it really started getting bad again, & I suspect it's trying to go into other ear. I got REALLY strict with my diet, (lost 14 lbs). I've taken Anti Verts several times because I felt I would have vertigo at any moment. My balance is bad, ear ache, head aches, and general feeling like crud. No energy, depressed all the time. So, my ENT has ordered a thyroid work up to make sure thyroid isn't causing some of it. I am so in hopes that I am one of the lucky ones that Betahistine does it's magic. I just started a new position at work, so I sure can relate to your stories of trying to get by while working. Our families suffer along with us with this terrible disease. My faith is the only thing that keeps me hoping something will help. Also I wonder just how many Menierer's people have the herpes virus? Some in the medical field think MD might be a viral thing, but, I wonder if a study has been done to find out the percentages. I have been taking an anti viral drug for a couple months, now, and it doesn't seem like it's helping?? Not that I wish this disease on anyone, but I think it's going to take someone "important" to get diagnosed with it before extensive research is being done. The disease doesn't kill people, so it probably doesn't get the attention it needs. What they don't realize, is that depression is huge!! I pray all of us find relief and keep the strength to fight.

 

Welcome Tony you will find a wealth of information and support here! Try everything you can for me it was antivirals and Joh that helped to stem the tide. Also look into environmental allergies I have bad allergies and can cause my MM to flare at certain times of the year. Good luck, stay strong!

 

I have had menieres for about 3 years and it is getting worse. My Dr. is suggesting Vestibular Nerve Section and to be honest I am scared and nervous. I would like to hear if anyone else has had this surgery and what to expect. I understand that everyone is different but it is the unknown that is scary.

 

I believe that this is at least part of the reason this disease doesn't get the awareness other diseases do, along with the fact that it isn't all that common, and isn't communicable to other people. It isn't like other diseases that are common and affect large numbers of people.

 

Ward, vns surgery is honestly no joke. Going through what I went through is by far nothing I would consider never doing again. My surgeon did not tell me the feeling afterward. So, to say the least it came by surprise. I was hospitalized for four days. You will be very dizzy and nauseated. The reason being is because your brain and eyes have to get use to only one ear balancing you. So look at it like thus: an airplane that's in flight has an engine that goes out so you have one engine left which is on the good wing. That good engine will take over and balance everything out. That's how my doc explained it to me. Although it does take some time. Just try to be mobile as much as possible and do balance exercise. I am now happy I had the surgery. The hearing is getting worse in my bad ear but at least the attacks are gone. If you have any questions please feel free to contact me.

 

Hello, I am stevensroser. I am new here.

 

Welcome Steven! I sent you a lengthier welcome under your Headache post, but being new to the site, figured I would note that. Bonnie

 

You mention three quite different treatments -- laby, sac decompression, and vestibular nerve section. You also mention dizzy spells rather than vertigo. How disabling is your condition? How is your hearing on the affected side?

As I understand, each of these three treatments targets vertigo but with varying certainty and side effects. A laby will leave you deaf in the affected ear and unable to locate sounds, which makes it difficult to follow conversations in a situation where there is background noise. There is a risk of some permanent imbalance. Your brain will have to learn to balance based on vision and muscle signals, and it is difficult to keep your balance in low light conditions. There is also a small surgical risk of damaging a nearby nerve which can cause facial paralysis. If you should go bilateral, your treatment options are limited. All that said, it will stop the surprise vertigo attacks and will allow you to go on living without that anxiety.

I don't have first-hand knowledge about sac decompression, but have known some people who have had relief for a couple of years and then needed to have it done again. But they didn't lose their hearing or balance from the procedure. I'm sure others on this forum can answer your questions about it.

Likewise, I don't know much about VNS, and others here can be more helpful about its effectiveness, side effects, and risks.

I'm concerned that your doctor hasn't gone through these options with you in a way that you will understand the effect each will have on your life. Ask the doctor how many times he/she has done each procedure and whether he still follows those patients. Ask to have the risk factors and benefits spelled out for each treatment. Consider getting a second opinion. Delay surgery until you're sure of what you need.

 

Tony,

We are in the exact same situation. I too have severe/profound hearing loss in one ear and I am scared to lose what little I have.

However the worst part for me on a daily basis is the constant dizziness. I already had the shunt surgery and it was a total waste.

I am going to see Dr Hain in Chicago in October to see what he thinks my best course of action is. I have been thinking about the VNS. There are not many people on here who have had the VNS.

I would start a new thread (VNS feedback) and see what you can find out...good luck bro! We are in the same rocky boat!

Mac