Please help - newly diagnosed

I've had it for over 10 years and I shot 83 on the golf course yesterday.

 

I wish I had good news for you. I'm sure someone on here does. When you're not having the spells everything is great. Some spells are not as bad as others. I've had to go to the ER with some. I have went several years in a row without spells. It's different for different people from what I have read on here. I'm sure there's people that used to be on here that are not any more because it went away. There was many times I thought mine were gone for good. I'm sorry I can't tell you there's nothing to worry about. Hopefully you have a good Dr. to do the right things for you.

 

Try not to hyper focus on the negative until you get your 2nd opinion I would say. I have had this for 16 years; never had an employment issue; successfully raised children; ride motorcycles to boot. Hang in and be your own best advocate when it comes to trying to get to the bottom of this. There is a trove of information on this site that can help you.

Best of luck!
Kevin

 

I would also say, keep calm .
It seems to me the diagnosis MD is given too early and a bit careless in your case. In Germany no doctor would have messed you up, especially if the full range of symptoms is not given.
I also really panicked when I read the horror stories of other people.
So, please focus on your strength and nice things and try to calm down, care for yourself and let others care for you. Best wishes Lilja

 

Hey Newbie,
I started experiencing aural fullness in one ear in 2015 and in 2017 I experienced my first violent rotary vertigo attack which brought me to using the John of Ohio regimen and I also use 24mg if betahistine every 8 hours. There is your Menieres and my Menieres like someone already pointed out so it will take time for you to experiment to put together an effective regimen. I work full time and I’m in my early 50’s. The biggest change for me is socialising. I have lost most of my hearing so I can’t really hear conversations in a crowded cafe or a family gathering when more than one person is talking which makes it awkward so I just spend a lot time at home with my wife and 2 cats. Hang in there and find out what works for you - you will be ok. One of my favourite quotes that I have posted on my refrigerator is from Winston Churchill- Never, Never, Never give up.

 

Hello. I can only report my own findings. Before I get onto that, I selected my name Dying Ear BEFORE I tried some of the solutions on here - I would now choose a different moniker.
I've had it for around two years and it's caused dizziness, SS deafness and the obvious side effects (mainly depression).
I'd tried acetozolomide which seemed to help initially but then didn't. It's really important for me to be well too as I'm in my mid-40s, am a musician and am about to become a father.
About six weeks ago it finally all got on top of me and I decided to move to the John of Ohio regimin - or as near as dammit. The results have been very encouraging.
I started taking six lipo-flavanoids a day (two morning, mid-afternoon and then just before bed). Then a few days later I upped it to this (per day):
6 Lipo Flavanoids
6 slow acting Vit C pills (6,000mg)
6 L-Lysine
1 MSM
1 Ginkgo-Biloba

My ear feels clearer, though much of the deafness remains, I've had 0 dizzy spells. In fact the ear has remained fairly clear throughout. Incredibly, for the first two weeks, the tinnitus pretty much disappeared (something which hasn't happened for two years).

I am aware I'm not taking the actual JOH regimin. I plan to switch to this in the next few weeks. I didn't start the regimin properly because I couldn't get hold of the vinpocetine and I'd already bought a bottle of the Lipo Flavanoids. I'm taking what I think are some of the most important, especially the Lysine and Vit C.

Interestingly, I started it just as I'd developed a cold sore. I have suffered with them throughout my life and the JOH theory runs that Meniere's is the cold sore (herpes simplex) virus which has spread to the inner ear.

The cold sore I had went away - I thought because I had taken the Lysine - but this morning I woke up and there is another cold sore developing on another part of my lip. This is unprecedented - it's always the case that once a cold sore clears up, I don't get one for another year or so; so two in six weeks??!!

Also, my ear started kind of throbbing occasionally (I can hear my hearbeat in the bad ear) - kind of a mini step backwards.

Now, I'm sure I read that the problem sometimes gets worse before it gets better. Someone I think theorised that this was the virus going into fight mode because it's under attack. I wonder if this is what is happening with me?

Anyway, I hope you feel better. My advice - consider the regimin because there are a lot of anecdotal positive stories on here about it. It seems to be working for me - touch wood. Hope you feel better.

 

I go to the Dallas Ear Institute at Medical City. Dr. Yoav Hahn has been treating me since 2012 and is, quite frankly, amazing in my experience. Best of luck and feel free to send a private message any time!

 

We've all been there. We've all shed a lot of tears and had many nights of terror on how our lives would be destroyed. Especially when you have young kids depending on you (I'm with you on that). But the best thing you can do is read through these forums. There is a gold mine of information on supplements you can take, dietary changes you can make, things to ask your doctor for, etc. Many of us are living full lives now after making the changes. So there is a LOT of hope for you.

I wrote the following a couple weeks ago to another new member; I hope you find it useful:
I believe this disease is multifactorial. There is no one cause. It's a culmination of many things that all contribute to overwhelm the body. And that's why there is no "cure" and that's why some things help some people but not all. So you have to take the approach of addressing, at the same time, multiple streams of things that will impair your health at once. For example:

• Ditch the salt. Read labels and try to keep things around 1500 mgs per day of sodium. Processed foods are the worst and eating out, even if you think it's healthy, is often loaded with sodium so check nutritional information at your restaurants and watch the sodium content. *very impt
• Up the potassium (if your kidneys are healthy) as this balances sodium - read up on potassium rich foods
• Avoid foods high in arginine (or that don't have a balance between arginine and lysine, ideally 1:1 or more lysine)... this is because many feel that MD has a viral component and arginine feeds viruses. Especially if you are eating a lot of nuts or nut milks....
• Look into having an IgG antibody food allergy/sensitivity test done. Eating foods that your body is reacting too will mess up your immune system and cause inflammation
• Have your hormones tested including testosterone, thyroid (ask for free T3 and reverse T3, not just TSH), cortisol, estrogen and progesterone.
• Follow the John of Ohio regimen (found on these forums) *very impt
• Read up on Candidiasis and see if this rings a bell (if you have taken courses of antibiotics over your lifetime quite possibly... in fact if you get yeast infections from time to time.... it's guaranteed)
• Make sure you are taking a good multivitamin with about 50mgs of the B vitamins (the health food store owner can help translate this) and that the form of B12 is methylcobalamin not cyanocobalamin
• I see a chiropractor regularly since I have chronic neck issues and misalignments can cause vertigo and hearing issues and also see a craniosacral therapist every 6 weeks or so.... though this may not be for everyone

These are some of the main things that I think can help turn things around.

 

That doctor pushed things a bit. I am glad you are seeking more information.I have suffered greatly, can't hear without aids, lost so much money, lost jobs, and here I am. I am the winner, not the disease. Remember that we are who we are and we are not this disease. No matter how terrible it can be we are still ourselves.