Kinda at My Wits' End

I was diagnosed with Meniere's about a year and a half ago.

However, I don't really think it was the right diagnosis.

I do have low frequency hearing loss in my right ear, did the MRI (came back clean), and did the balance testing (two organs in my right ear did not respond). I have been on tons of different drugs since then. I would go months with no issues and then they come back. I did have a little vertigo, but not to the point of getting physically ill.

Well, in the last three weeks, things have really gone downhill.

My T changed. It is actually coming out of my good ear (the one that was Meniere's free) and is constant. A loud roar. Before it was a hum, that would come and go as I spoke. Now my right ear is making a tone noise as well. Like a beep or a bell.

I am having huge headaches, with plugged ears daily.

At times I have facial numbness as well. I have been having intermittent chest pains too. Was referred to Cardiologist who gave me a heart monitor to wear for two days (EKG came back odd).

I have a stress test scheduled in a couple of weeks. I went to ER with ears and was given steroids and antibiotics which has not helped or even touched this.

About 2 times a day there is fluid in my right ear canal. But every doctor says my ears look fine. I went to my Neurologist today. He's not sure it is Meniere's either. I am schedule Thursday for another MRI without contrast.

I am wondering if it is an Acoustic Neuroma would it show up?

Also, it that comes back clean, he wants to do a spinal tap (which I REALLY dn't want).

Can anybody tell me if any of my symptoms sound familiar. I am at a total loss and am MISERABLE.

I'm taking the lipoflavonoids, steroids, valium, tylenol, etc. no relief in sight.

 

Hi @Gin, I'm sorry to hear you're suffering, some of your symptoms sound very like mine, I sympathise. I don't suffer full blown vertigo but since my noise trauma I do get episodes of unsteadiness. I also have extreme fullness/plugged feeling in my ears and numbness in my face. I haven't yet found a doctor that has helped me, but I'm seeing a new doctor tomorrow so fingers crossed. My T is in both ears, a high pitched ringing.

 

You may want to have @glynis to answer some of your question on meniere's as she has dealt with this for a long time. Some of your symptoms seem to be stress/anxiety related, such as the headaches and chest pain. Try to do some relaxing activity such as leisurely walk/jogging to help unwind the nerves and muscles. If you need it, you may want to try some natural alternatives to help calm the body and nerves, such as Melatonin, Lemon Balm, Valerian, Hops, Catnips, Passion Flower, Chamomile, Lavender, Kava, etc. You can do google search or check Amazon.com for each of them to know how people review these products, and see if you can take them as a supplement. Check out this site on using natural herbs for helping to sleep or to calm the nerves. Take care. God bless.

http://www.christopherhobbs.com/lib...ealth/herbs-and-natural-remedies-for-insomnia /

 

Hi @Gin,
Sort to hear your having a tough time at the moment and your other ear now got tinnitus.
Pressure in your ears like they are blocked and headaches come with it also.
Cinnarazine 15mg 3-6 Adam is for Menieres and calms down tinnitus also.
I have these on top of my Betahistine as needed but can make you tired to help sleep also it take two an hour before go bed and help relax you.
Had a bad spell over the weekend that came out of know where but I moved my neck and gave a loud crack at the base of my head and neck so I think that caused it with a nasty headache.

Have a chat with your doctor about having a daily med and a add on med for rough patches to help.
I had Nortryptaline added help me sleep and it stopped my head tinnitus.
I totally understand how you feel as it's so hard as tinnitus due to Menieres is sever and at burn out left with it and hearing loss and balance as most of everything else settles .
Love glynis

 

Well I am taking steroids (which aren't doing much) right now with the Lipoflavonoids (which used to help alot, but not as of lately). I started taking Lysine (can't tell any difference in that). I took Nortriptyline a while back, but I forgot why, ha, we changed and started verapamil. I think I will start taking Cinnarazine. Is that something I can buy over the counter like at Wal-Mart? Does it have a generic name? Also, one more question, I don't have a Meniere specialist I am dealing with right now, just my neurologist, who has limited info on the subject. Is it normal for this to go on non-stop for like three weeks now ? (the plugged ears, roaring/ringing and headaches). It seems like everyday it gets a little worse. The hypercausis today is terrible.
Thanks for your help.

 

You need get Cinnarazine 15mg for Menieres off your doctor as its a high dose but helps reduce tinnitus also when it's raging.
Attacks of Menieres can last a few days or 2or 3 episodes following eachother and quite debilitating but with Cinnarazine it will soon get it under control again for you.
Love glynis

 

Get tested for lyme!
i dont believe its just "meniere" the palpitations / facial numbness are not menieres symptoms.
http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html

 

I had that and never had facial numbness either.... Lyme disease is a wicked one and can annoy the hell out of someone...

 

You may want to get tested for multiple sclerosis
http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-symptoms#1

 

Well if her MRI came clean, and it affects both ears... its suuuuper unlikely to suspect MS

 

Well, I do the MRI tomorrow afternoon. My neurologist says if it comes back clean maybe do a spinal tap. Really don't want to do that. May insist on going back to my ENT specialist before doing that.

 

I got tested for Lyme. Had to really push to get tested. Since I live in the Southeast. It came back negative. I know there are a lot of false negatives. But I think getting my neurologist to test it again would be impossible.

 

I recently had a spinal tap to rule out MS, lymes and many other autoimmune diseases. It really was not as bad as I expected, though I did have a spinal headache for about four days but it was manageable and resolved in its own.