Meniere's Disease

@Jkph75 aww sorry to hear you went through so many miscarriages that must of been tough. I'm glad you now have 2 children after trying for so long. I have PCOS so I certainly have hormones problems. I miscarried in Sept 2015 but had on going hearing problems since then on and off. Follows the same pattern as my first pregnancy it lasted 18months following having my daughter for it to settle down the tinnitus and reduced hearing etc... Its funny you should say that because my balance therapist checked me over and listened to me about my symptoms (before tinnitus flared up again though) and he said Migraine associated vertigo matched my symptoms. Even ENT up until now said Migraine. Can Migraine associated vertigo cause hearing loss temporarily? Through some of my dizziness last year I had sensations as if something was on top of my head like a hat or a squeezing feeling with no pain and everything could look bright which would make me feel spaced out. Each time the ENT or balance physio has done checks ie putting me over a couch and moving my head forcefully suddenly it never creates any vertigo for me. Being deaf in one ear also could possibly make us feel dizzy and suffer balance issues as we get older. I have always had some dizziness since a child that would come for a while then go again for years so I probably have always had issues due to my hearing. Have you had any balance testing before? It must be hard having two small children to look after, i only have one and find it tough lately with feeling so unwell with it all. Do you have any support to help look after your children to let you rest or have some time to yourself? Tiredness i find makes it worse I feel worse when I am tired even now a full nights sleep doesn't feel like enough. I do think hormones have played a part because its weird how pregnancy can trigger it all off. Are you based in the UK?x

 

Still feeling really dizzy lost count how many days its been its got to be in the second week now. Betahistine is not helping. Not vertigo but really bad dizziness where although I can walk I feel off balance and floaty. Surely there has to be something that can settle it to take? Its not normal to feel dizzy daily with no relief. On the plus side my tinnitus is lower past couple of days and hearing fine. Sometimes I feel like I sound weird when I talk like I feel like I am somehow distant although I hear fine and clear almost like when I talk I feel like I am surreal. I wish I had some relief so fed up of feeling dizzy all the time. I am going to ask my doctor next week to try a Migraine medication to see if it helps because all this makes no sense all of last year I only had dizziness as a symptom on and off.

 

I would take proclorperazine also...can get it from the chemist xxx

 

My MRI revealed legions all over my brain. This is so much worse than Meniere's. I am so scared!

 

Aww no !
Did they say what causes them and any medication you can take ?....lots of love glynis

 

They said they have no idea and that I have to see a neurologist. She said it would be normal if I was 65 or 70 but not normal for my age. So scared!

 

Try not to worry to much till you have been seen by a neurologist.
Some scaring is normal they told my son's as we all have some scaring and everyone's brain is unique a bit like a finger print.
Stay positive and wish you luck.....lots of love glynis

 

What does your son have?

 

They both have epilepsy....lots of love glynis

 

@Jkph75 sorry to hear about the MRI not going to well. I can't say what it may be it could be anything and I am sure a lot of treatable/minor things so try not to worry but easier said than done as I would be the say. The only suggestion I can make but again I am not sure I have only heard of this but could it be MS? I have heard about that showing legions on the brain also. I have only ever had a CT scan due to claustraphobia which was normal but I am wondering if I should get the MRI done now it may be the best option to show anything up.x

 

Same

 

Romans had legions, the things that show up on brain scans are called lesions.
And while MS is a possibility, lesions could exist due to benign and treatable conditions. Just follow your doctors advices and all will go well.
Hell, there is a big silver lining here. You have a real chance that your tinnitus is treated as well.

 

I agree with the above comment it could mean finding something and which doesnt mean its always serious could mean the cause of your symptoms like tinnitus and dizziness which could result in treatment to stop these symptoms. Does anyone know if CT scans would detect lesions (thank you for the correction above)? I have always been told they do not detect as much as an MRI maybe only if something say is bigger or blatently noticable. I have never had one but I am wondering if its worth facing my claustraphobia fears and having it done. ENT have always been okay with me having a CT and not concerned but I do wonder sometimes if something could be missed or not detected on a CT compared to an MRI

 

CT scans are glorified x-rays. They are very useful for detecting bone issues and to a lesser extent, cancers.
Not the best way to detect soft tissue damage (such as lesions and early stage cancers). They also emit quite a bit of radiation which is not a good thing.

MRI is way better for imaging soft tissue because of its ability to "enhance" the clarity of the images by modifying their contrast in real time. But they take more time than a CT (especially when it comes to brain stuff, half an hour at least). And its a bit claustrophobic.
However, there are newer MRI machines which have their sides open (not like the usual closed cylinder ones).
If you're gonna have an MRI, I'd suggest looking around for one of these. They're a breeze (still loud though).

 

I think I have MS too. I have other symptoms like headaches and weird tingling and cold sensations. The first thing that freaked me out was the tinnitus. I thought I could never live with it. Now it's so much worse. It's amazing how your whole life can change in just a couple of weeks. I feel bad for even complaining about the tinnitus in the first place. @Mand b

 

Whoops. Sent that too soon. It couldn't hurt to get the MRI. At least that way you would know. I was anxious too but I made it through. Also, you could see if you could try some progesterone. That might help with the symptoms.

 

So, I went to the neurologist today. He said that I don't have MS. He thinks I have viral labyrinth and migraines. He mentioned Meniere's but said I would have to have hearing loss and a distinct episode of vertigo to have that. From all the information I have gathered I seem to be in a pre Meniere's state. If I continue my low salt diet do you think I can prevent this from happening?

 

I was first diagnosed with labrynthitus but as I was getting full on menieres attacks with all symptoms I got diagnosed with Menieres as Well as tests.
Try not to worry about Menieres as it will or won't come to light only time will tell over years.
Do what you can reduce salt and sugar and use the skills you learn on this forum and what items can be used and counseling for tinnitus in a positive way to enjoy your life and love everyone in it.....lots of love glynis

 

@Jkph75 thats great to hear you do not have MS. So having walked away from the appointment what was the diagnosis? Have they said its Menieres for sure or do they not know? Its the same with me I do not get vertigo so its frustrating not knowing whats what. Especially with me I get dizzy with no other symptoms. So for 2 years I only had dizziness as a symptom no hearing loss or tinnitus. I hope to get answers when I see a top consultant next month as non of it makes sense and more importantly for my symptoms to have been going on this long why isn't the symptoms more severe by now after 5 yeara ie no vertigo or a constant hearing loss. Anyway how are you feeling now after seeing the neurologist? Did they say its a pre menieres state? If they suggested it could be migraine then maybe trying a migraine medication firstly would help to see if it makes any difference. I am going to ask for the same as up until now I have always been told migraine as I had symptoms to match its only because of tinnitus appearing again my ENT is unsure x

 

@Mand b


He said viral labyrinth and migraines. I stopped the Prednisone a couple of days ago and the ringing is at an all time high. I also feel decreased hearing. My Dr won't even see me or give me anything. It's outrageous. Luckily, my other Dr is giving me a higher dose of steroids and an antiviral.

Fast forward. I'm on the steroid. Hearing is normal, tinnitus, much lower and no dizziness. I think I do have Meniere's but I think it is related to hormones or autoimmune since the steroids are working so well. My ENT originally told me that steroids don't work, yet they do for me and I have read that they have helped other people too. I'm not sure where to turn. There is obviously something wrong with me and no one wants to try to figure it out. They just want to follow my hearing until I actually lose it and then give me a bunch of treatments which they claim won't work anyways? What is the point?

Does anyone know which drs are actually really investigating this and trying to help people? Seriously, I'll go anywhere and do anything. I would let them rip my whole ear out and get a Cochlear implant, if it would let me not get dizzy and continue to function. I have babies and no one to care for them. I can't afford to be disabled now or in 10 years.

 

@Jkph75 Where are you located?

 

US in upstate ny

 

If the steroids are working for you, you should consider taking them long term.
Look into betamethasone. It has a very long half-life and as such is a bit safer for long term use.
It's usually delivered by intramuscular injection once a week.

Unfortunately, there are no meds that will cure Meniere's or autoimmune diseases or the damage from a long existing viral labyrinthitis infection.
Cutting out your ear will make you more diszzy (less auditory input = worse balance) and a cochlear implant is usually associated with overwhelming tinnitus (plus, it is indicated for severe to extreme hearing loss).

 

@Jkph75 Hmm. Upstate new york is a big place! Without doing any more research, if I lived in your general area I would look into Mass Eye and Ear: http://www.masseyeandear.org/specialties/otolaryngology/balance If you want to go West, you might look into Chicago Dizziness and Hearing (https://dizzy-doc.com/). Dr. Hain is the more experienced Doc there I believe. They also have a more information based web site: http://www.dizziness-and-balance.com/

I have no personal experience with either organization. Both of these places seem to combine academic research with clinical care. Hopefully that is the best of both worlds.

 

Well, I only hear out of 1 ear as it is. Once the hearing is gone in this ear, I would need a Cochlear implant to hear at all. I was hoping that might get rid of the tinnitus too. Too bad. My mom had to have her thyroid removed but now takes meds to supplement it. It may not be a "cure" but she has no problems as a result of it. I would like there to be something close for Meniere's. There seems to be no hope with this disease. People with it seem to be tormented every moment of every day by it, until they are completely disabled and tormented further. It sounds like a place as close to hell as you can get here on earth. I don't think I have even begin to suffer yet. Is there anyone researching this? Stem cells or something? I'd spend my last dime to get a treatment.

 

The quote above about CIs and tinnitus is not borne out by the evidence:
http://www.ncbi.nlm.nih.gov/pubmed/21647911
http://www.ncbi.nlm.nih.gov/pubmed/22931903
http://www.ncbi.nlm.nih.gov/pubmed/17260883
https://www.actiononhearingloss.org...chlear-implants-to-suppress-tinnitus-g43.aspx
I'm sure there are others as I am sure there are people whose tinnitus was made worse. However, these seems to be good evidence it can improve.

Regarding research, there are a number of clinical trials ongoing.

https://clinicaltrials.gov/ct2/results?term=Meniere&recr=Open The SPI-10005 or the OTO-104 trials might be worth looking into.

Having said all of that, it seems like you have gotten different diagnoses from different doctors. It really might make sense to try to find someone who has seen *a lot* of patients with vestibular issues and see if you can get a diagnosis that really fits.

 

Here are some more links.

http://www.ncbi.nlm.nih.gov/pubmed/8343245
http://www.ncbi.nlm.nih.gov/pubmed/22626945
http://www.ncbi.nlm.nih.gov/pubmed/11771024

You would think that that after all those successful trials the world would be tinnitus free.
Nope, its just researchers skewing statistics so they can justify funding.
An invasive procedure inside the inner ear will not have any positive effect - unless you are almost deaf and the increased auditory input after the CI helps mask the t.

 

Interestingly, I have no tinnitus in my deaf ear, however since this tinnitus started I can feel it vibrating on that side when it gets really loud. My nightmare is being left with no sound, only horrendously loud sound of t. I would think at that point the CI would have to help.

What is SPI and OTO 104? The other drugs are all psych drugs. I don't see how they're going to help the real problem. Unfortunately, I couldn't participate in these trials yet, as I only have a diagnosis of possible Meniere's.
The T studies don't have enough people in them to really make them relevant.

I talked to my ENT tonight. He said he's going to taper down on the steroids until I am low enough to still be suppressing my symptoms until he can get me to an immunologist. He said that steroids don't work for most people and that he has no idea why they are working for me. I am constantly afraid that they will stop working. I don't understand how you can be completely healthy one day and have a debilitating disease the next. All of the stress on my body from having a c-section, being up all night and taking care of a newborn and toddler must have broken something in me. Something that apparently can't be fixed.

 

These are two of the trial drugs.

Sounds like you should keep working with your ENT.

 

I was wondering if you knew what kinds of drugs they were and what exactly they did.