My Story (Going Bilateral?).

Hello everyone,

I don't really know where to start so..let's give this a shot:

I'm a 30 year old male from Europe (excuse me for any spelling or grammar mistakes).

I was diagnosed with Menières when I was about 17 - 18 years old I think, heavy vertigo attacks, vomiting, tinnitus etc.. tried all sorts of medications, nothing seemed to really work. Then my ENT at the time put me on a betablocker and Fenytoïne which is something usually taken by people with epilepsy. Now Im not sure if it were the meds or MM just went into remission, but I was able to live pretty much symptom free for a good 10 years, still had tinnitus and well hearing got worse, but for 10 years I lived my life.

At the start of this year however I started having attacks again. Me and my girlfriend just bought a house that needed renovating, we got pregnant, I guess fatigue and stress must've been a trigger. Since I was still on the meds mentioned above I'm more convinced that MM went into remission by itself and the meds didn't really have anything to do with it, although I guess we'll never know unless I get on them again. But one of the new ENT's I saw didn't really understand why I was on the epilepsy drug AND for so long. It wasn't a minor dosage either, but I did have to get bloodwork done every six months or so since the drug can have an impact on the liver.

At first the attacks were "severe" then they got few and far between again, usually if I felt an attack coming on, I went outside for some fresh air, the attacks usually lasted between half an hour to a few hours, but no longer feeling like crap for an entire day. Which was a big relief, I guess we have to keep in mind that I already have MM for a good 12 years so maybe my "bad" ear is burning out. I don't really know what to expect from the "burning out", I've read the phrase a few times but..

(I forgot to mention that I went to see another ENT and I got a Hydrops MRI (only two hospitals in my country do this). She told me that she could see that I have late stage Menières in my bad ear.)

2 weeks ago

A week ago I had an attack like I've never had one before, I knew it wasn't a typical MM attack. The first one was when I laid down in bed, the room started spinning out of control, came out of nowhere and lasted for about 20 seconds. Then it passed, I was still somewhat out of balance for a while and had a bit of an unsteady gait for a few days, then it seemed like everything was back to normal, then BAM again, out of nowhere when I was in the bathroom..same story, lasted about 20 seconds, a bit unsteady for the rest of the day. Then the next days most of the day I felt fine, but I had these brief moments (5-10sec) sometimes where I'd feel a bit unsteady.

Went to see a local ENT and she believes that I had BPPV due to my MM and the wear on my inner ear. She tried to "provoke an attack", but she didn't succeed, which made her conclude that the crystals fell back into their proper place. She gave me a prescription for Betahistine as a maintenance for my MM.

Bilateral?

A day or two after visiting the ENT I started developing T in my "good" ear and I feel like I also have a slight fullness going on, but to be honest the more I focus on it the more I start hearing/imagining.

This all made me get on the JOH regimen. So far I've been taking L-Lysine (3g/day), Lemon Bioflavanoids, Vinpocetine, Probiotics and a Garlic supplement. I also have Pycnogenol, but I haven't started that yet. I'm still thinking about what to add next, probably the Vitamin C.

Future?

I'm waiting on the reply of an ENT who is specialised in MM to probably see him in a month or two and get another MRI to check my "good" ear and to see what my options are for the future.

How I feel? To be honest, I'm quite scared of the future which causes me to have stress aswell, which is probably not good for my MM. But now that I have a baby boy, I'm just scared to lose my hearing, lose my balance, thinking things like "What if I won't be able to hear him anymore later on, what if I'll never be able to play with him? What if my girlfriend leaves me?". These things haunt my thoughts.

I'm inspired by alot of people on here who tackle MM head on, who seem to overcome everything MM throws at them. Deaf? No problem I'll get a CI. Balance issues? No problem I'll use a cane. I wish I already had that mindset aswell instead of this fear. I hope one day I'll have the same courage/mindset as some people on here. I have the utmost respect for you all.

Thank you!

For reading my story and thank you all for sharing yours.

Kind regards.

 

Hey!

Thank you both for your replies! Unfortunately a little while after I wrote my post I've had a full blown attack again and not just a small one that lasted half an hour..It was probably as bad as when I first ever got them..just spent the last four hours with my head over a bucket..

Also during this attack the T in my 'good' ear also increased which makes me even more inclined to believe I've gone bilateral.

First thing monday I'm going to make an appointment with the ENT unfortunatly this may take a month or two in the mean time I'm going to stick to your regimen JOH, I'm not going to let one attack (or maybe more) stop me from sticking this through untill I hopefully get some relief one day.

I'm also going to see my GP in the hopes that he'll prescribe me the anti-virals. Are there any suggestions as to which ones seem to yield the best results? Aciclovir, valacyclovir,..?

Thank you both for your interest in my story!

As for the baby, my girlfriend is still at home for a few more months so that's great althoug I feel really guilty when I'm not capable of helping her..since it's pretty exhausting for her aswell.

Again, thank you for your time. It does help venting my mind to people who truly understand what you mean.

Kind regards.

 

Hey,

Thank you for your replies.

I'm seeing my GP today in the hopes that he'll prescribe me anti-virals.

I'm also going to make an appointment with an ENT who specialises in MM and such. He's still rather young and also involved in genetherapy for inner ear haircell regeneration, so that might come in handy in the future..I'll probably have to wait a month or two on an appointment though (just my experience here unless you are happy with just seeing an assistent then you can go right away).

I've been on JOH's regimen for a good week now. The funny thing is: the tinnitus and fullness in my bad ear seem better (also possibly due to my recent attack) and the tinnitus in my "good" ear (which probably isn't so good anymore) is getting louder.

As far as meds go for when I have a spin attack, the local ENT gave me Xanax, which I just did some research on and doesn't seem to do anything to reduce spinning only anxiety that comes with an attack..

Right now (and probably always) my biggest fear is not going through all of this (it's still a big fear though), but is losing my girlfriend, my baby boy, my work, friends..etc..When I was first diagnosed with MM I was around 17 and the ''fight' seemed so much easier back then, I probably was just as scared and don't remember. Or I didn't know do much about the outcome of MM yet and had faith that a few pills a day would cure me.

I'll keep you all posted, thank you for the kind words.

Also in a month or two I'm going to my first MM meeting, it's like an AA group but for MM sufferers. I hope I'll get some emotional relief after talking to/with and listening to people who are going through or went through the same or a similar thing as I am.

Kind regards.

 

I'm not really sure what exactly Xanax is, I've read that it can take quite some time before it kicks in so I don't really know how it's supposed to help me in the midst of a spin attack though. I took one the other day and it took I think 2 or 3 hours before I started feeling better and maybe in alot of people's book that's pretty good, but when my ENT prescribes me something for during an attack I suppose I just expect immediate results?

A few more things I'd like to add that some may recognise or not:

Went to a chiropractor earlier next week, got some adjustments, day after I felt perfectly fine, more mobile, etc..the day after that..most severe attack I've had in years.

I also had a runny/stuffed nose for a few days (don't know if you can call it a cold)..after my attacks, 'the 'cold' was gone..coincidence or? I don't know I only remember thinking 'well, this is kind of weird'.

Another thing: apart from two attacks (which a local ENT claims were BPPV attacks due do Menière) all my attacks so far (and let's hope it stays that way) have always taken place in the early evening like 6 or 7 pm'ish give or take an hour. I was wondering if anyone else has like a ''pattern" in their attacks?

Final question: how many of you that are unilateral also have tinnitus in your good ear? I've only read one post on here yet where someone who is unilateral said they been having tinnitus in their good ear for about 3 or 4 years now. I recently developped tinnitus in my 'good' ear, which seems to get louder aswell.

Maybe I'm just looking for a sliver of hope that I'm not going bilateral until I get another MRI. Because a day full of hope (even if it's false) is a great day. (As long as you're also prepared for dissapointment I guess).

Kind regards.

 

Hi there,

I understand the 'young age thing' completely. I'm not sure if it's a positive or a negative aspect though. It's perfectly fine to think why me (don't we all?), why so young, I have my whole life ahead of me etc..and that's the most important one I think, we DO have our whole life infront of us, we do still have the time to figure things out along with our doctors, new therapies and tools are invented every day..back when I was first diagnosed there was no such thing as a Hydrops MRI, that clip surgery (or whatever it's called) has also only been around for a few years. CI's get better every year, I just saw an article that they are bringing a belt into production that helps people peop their balance, etc..I always get some relief from all that you know, if the day ever comes, there will be solutions, but I can't look you in the eye and honestly tell you that all I do is think positively unfortunately.

If I was single it would be a whole different ballgame for me, but I have a girlfriend, we bought a house two years ago, had a baby boy 3 months ago and I can just tell that my recent episodes are putting some tension on our relationship. And right now that's my biggest fear every day; losing them. Which then causes me stress, which then probably makes my symptoms worse..

So yeah, I guess everyone experiences MM differently and not just because of the symptoms.

I can also see how this forum can be therapy. I'm lucky to have found an MM talk group, kind of like AA meetings, but for 'us'. They are only 8 times a year and I still have to go for the first time, but the idea of being surrounded by people in the same boat (eventhough alot of them have about 20 - 30 years on me) I hope it'll help me emotionally.

Btw, may I ask how they established the immune response and what exactly this means?

Kind regards.

 

Hey, thank you for your kind words. It's just a bit frustrating to see that some people never seem to find anything that even just lessens their symptoms a bit or maybe they do and they just stop posting on forums then, I don't know.

The tinnitus in my 'good' ear appeared out of nowhere about a week ago, no apparent cause or anything, it's not nearly as loud as my bad ear, it's just a bit scary though..

I have to wait about a good 3 months before I can see a MM specialised ENT over here, which is pretty long, but yeah..

I hope you all continue to do well and have a good holidays.

 

I was wondering if anyone has ever experienced this;

The start of a spin attack for like 10-20 seconds, but then it subsides again, but it was like a coinflip between subsiding and going full blown vertigo?

Kind regards.