feeling alone

You say the reading you're doing makes you hopeless. I felt the exact same way when first started my readings. It's scary. But you just feel hopeless because you don't know enough right now. Trust me. There really are ways to make it better. I'm still on my journey to find relief. And I know from listening to other people's stories and council that there really is reason for hope. It's not just something people say to be comforting. We'll get there together kid. Chin up!

 

What you are going through is so difficult. I'm sorry it's happening to you, but I'm glad you found this place. You are not alone, and there is lots of support and hope here.

I have had vertigo from Meniere's, migraines, and BPPV. Also stuffy ear, tinnitus, and hearing loss. I have found ways to manage all of it, and am doing much, much better than I once was. I do have recurrences, but I'm know what to do now when they happen.

Some things you can do before seeing a specialist:

If you haven't yet, read John of Ohio's write up (http://www.zoominternet.net/~kcshop/JOH.PDF). It's a great overview, and gives you some things you can do right away.

I find that acupressure wrist bands, really help take the edge off dizziness and nausea for me. I use sea bands brand.

It's very common to have both Meniere's and migraine, so you might look up migraine triggers and see if there are some you suspect are setting off the episodes. Then try eliminating them.

Educating yourself here as much as you can before seeing the specialist will help. Be sure to learn about anti-virals which, if they work for you, can make a huge difference and have very low side effects.

 

Welcome to the site. The vast majority of people find partial or full relief through various methods and are able to live quite normal lives. This forum has the really hard cases, as most people move on after they get relief. Don't assume that you'll be one of the tough cases. The odds are greatly in your favor. So don't be discouraged. Try everything.

There are several things that can cause Menieres-like symptoms. You can find an exhaustive list here:

http://www.dizziness-and-balance.com/disorders/index.html

You should first have yourself checked for all the possibilities by various specialists. Be sure to get the full workup. For example, without an MRI, you cannot rule out tumors. Without a high-resolution scan, you cannot rule out SCD. There are a a lot of different tests for different things.

Get a second and third opinion. A lot of doctors spend less than 10 minutes looking at your file and then make a diagnosis. A lot of folks here have been diagnosed with one thing (e.g. Menieres), only to find out years later they had something else (e.g. MAV).

Check your diet. MAV can often be controlled with diet. Viral-related Menieres requires that you control your Arginine-Lysine ratio in foods.

A lot of folks have found relief from antivirals. Obviously, this doesn't work for everyone, but for those of us who are viral-related, it works about 90% of the time (this number is based on published data by Dr. Gacek in peer-reviewed journals). This is a good place to start reading about antivirals

http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf

https://fhs.mcmaster.ca/otolaryngology/documents/recoveryofhearinginMeniresusingantiviraltreatment.pdf

Many people have found relief from various supplements. The most famous one on this board is JOH. You can find his regimen here:

http://www.zoominternet.net/~kcshop/JOH.PDF

If you think you might have MAV, read this book:

https://www.amazon.com/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&qid=1498501145&sr=8-1&keywords=heal+your+headache

There are many other regimens that have worked for others, so be sure to read all the threads on this site. There is a wealth of information here that has been built up over 20 years of experience.

Even if nothing works, don't panic, because you can always get a labyrinthectomy, which almost certainly will end your vertigo problems. Just make sure you know which ear is bad and that you're not bilateral (even then, you can laby both ears in a last resort scenario).

Lastly, while it's good to listen to your doctor, also listen to your body. You are your best advocate. If you think your doctor isn't giving you the best treatment, get another opinion. Keep searching. Most people who found this site eventually left because they got better. Many of the remaining folks are the really tough cases, so don't panic and assume that you'll be one. Think positive and get started on your journey with both eyes and ears open.

Good luck. We're here to help.

 

Welcome to the forum dizzygirl . You are not alone here. We have all been where you are now. Some have found their solution, some are still looking. The main thing is not to give up and look for your way out. Scott Tom said it all so please read his post carefully. I hope you feel better soon !

 

Listen to these peope. Take time to put it all together. It takes a while. But you need to know right away that there is not only hope bit probably a solution for you. Everyone is a little different and it takes a while but lemme tell you how good it feels when you get things straightened out. Even some doctors for some reason, dont seem to know. Dont let anyone make you give up. We will be here for you while you figure out what works for you.

 

Welcome to the forum, dizzygirl. Just keep reading here. You will learn a lot.

 

I'm new to this forum but I have had Menieres disease since 2012. I have lost all hearing and now have two Cochlear implants. I still have very violent vertigo attacks ,although not very recently, so I just remember what I first said when I was informed of this affliction. " Enjoy the good days, and suffer the rest. " Now, this isn't a negative feeling, it's just reality. We have a disease that very little is known about and there is very little we can do when vertigo hits. My doctor prescribed low dose Valium, but that didn't seem to help much and I was afraid I would become dependent upon it so I stopped using it. The only thing that works for me is to lay down to control the spinning and eventually fall asleep. Sometimes I wake up good to go and other times I remain in bed for days waiting for the spinning to subside. That's how I cope with it. This is not to say you should just give up. I just want to encourage everyone to live your life on the good days and not let this control your life.

 

Welcome, Fatboy! How are the cochlear implants working for you? Did your hearing loss start in 2012? If so, that seems so fast. I'm so sorry that happened to you and also think thank goodness we live in a time when there are cochlear implants. I am not at that point with my hearing, but it is such a great reassurance to know that they are there if I need them.

That is such a good point that we learn both physical and emotional/spiritual ways to handle the hard times.

For me now, with much thanks to this forum, when my symptoms get bad, I have things I can do to manage them and make them better.

 

Thanks for the response. I didn't realize that this was a short time to lose my hearing. To be honest, I had three episodes. First one I lost about 60% in my left ear. Second one i regained most of my hearing in my left ear and my right ear was about 50%. My last episode, the most violent, I lost all hearing in both ears. Just like that, in an hour, i was completely deaf. I know my case is unusual but I still feel that I can offer hope to people who are suffering also. I will continue to post in the upcoming future. Thanks again.

 

Welcome dizzygrll and fatboy
before my appt. I started the first recommended supplements in the JOH regimen with fair results. I got great advice and support here as i was fearful, overwhelmed and depressed.
after my appt. in Feb. 2017 I started on Acyclovir (prescription) which i now understand is less expensive that Valacyclovir; which is working for me. I haven't had vertigo (with vomitting) in the past 6 mos.
My best to everyone.

 

Hey Dizzygirl,

First off, welcome to the forums! If you're anything like me, you'll find solace and hope in the fact that there are others out there who are experiencing the same thing you are, and that there may be things you can do to alleviate and/or eliminate symptoms.

My cautious side says you may want to consider getting a second opinion, meniere's (MM) is a diagnosis based on symptoms and there are several causes for vertigo, ear fullness and tinnitus. Even so, if it is MM try not to be afraid, as with most illnesses the more you know the better off you are, even if much of what you know is bad.

As already previously mentioned by some here, take a look through the forums and read what has worked for other people. MM (if that is what you have) is also a disease that may have many causes and because of this, effective ways to reduce and/or eliminate symptoms can vary wildly depending on who you are, and your medical history.

Don't be afraid! Much of what has worked for others has been because they took steps to make things happen, whether that is talking to your doctor(s) about various options or surgeries, speaking with NDs and/or homeopathic treatment specialists, pushing for prescriptions for anti-virals, or trying things that have worked for others such as the JOH regiment.

Until your doctor can get you something for the vertigo (mine has prescribed low dose valium for me and it is a wonder for the low to medium episodes of vertigo) try good old OTC motion sickness pills (Meclizine) it helped a lot for me before the valium (it will make you tired, so make sure you understand that) I also find that getting plenty of sleep and reducing stress helped me a lot as well.

Whatever happens, remember that you are not alone and try to stay positive (I truly believe that always helps) focus on the good days and keep pushing forward. There are solutions that have worked for many and you can find one!

Stay well and stay hopeful!
RWJ

 

Welcome, Dizzy.

I've had Meniere's since 2003 or so. Started slow then this year BAM!! It's been unrelenting. I came to this board and was blown away at how much I learned, and more importantly how much I need a second, and then third opinion. The ENT's I saw were quick to diagnose me but failed to really give me and hope or offer alternate solutions. That's what this forum is about.

I started acyclovir and lysine about two weeks ago and my body has responded by getting worse, hopefully for me this means that I have viral MM and will improve over time. This treatment was never mentioned to me, and in fact when I brought a study to a second Dr they just handed it back and said they refused to prescribe the med to because "it doesn't work like that"... A third opinion from my cardiologist of all people and I had the mads in hand.

What I'm getting at is DONT EVER GIVE UP on MM. Like others have said, when people get well they leave the forums and get back to their lives. I take Valium and meclizine almost daily, zofran if I'm feeling queasy. They do a decent job of allowing me to work full time and keep up with my family. Sometimes an attack will happen and you are along for the ride. But it WILL END and you can pick up the pieces. I've lost count now, but I'm much more in tune with what my body is telling me and I know when to say when.

Best of luck to you!