California Sun - Questions

Mac--
I am not sure what it is you want to know, so I will just tell my story and you or others can ask specific questions which I will try to answer.

The symptoms in my right ear started in 1971, when I was 17. At first it was just a slight full feeling, then progressed to tinnitus. The symptoms came and went. Then I started having imbalance issues which finally progressed to full out vertigo. It took three years to finally get a diagnosis. My symptoms weren't taken seriously by the doctors I saw and I was told that I had "anxiety" and given a prescription for Valium. I was finally diagnosed at the House Ear Clinic after having all kinds of tests--all of which were normal. At the time they prescribed niacin (to promote blood flow to the head), Lemon Bioflavonoids, Benedryl at night, something called Pro-Banthine (which has been off the market for decades now), something that I think was similar to Serc, and which I could only get at a specific compounding pharmacy. Nothing helped, and things got worse. I lost my job due to frequent absences and was stuck living with my parents at a time I wanted to get out on my own. I finally got the shunt in 1974 when I was 21.

Things improved after the shunt and I was able to live a fairly normal life--held down a job, lived on my own, got married, got divorced etc. I still had issues from time to time but nowhere as bad as they had once been. I still had some dizziness issues but they gradually lessened over the years. That ear has remained "quiet" for about 25 years now--just a little bit of tinnitus which is always there, and a slight bit of fullness when the barometric pressure changes. I don't have normal hearing in that ear but I hear well enough that I can do without a hearing aid. I hope things don't change with that ear.

The MD in the left ear started when I was 39, in 1993. I was fine one day and woke up with no hearing in that ear the next day, along with pressure/tinnitus. I had vertigo later that day. I knew what had happened and the doctor at the House Clinic confirmed it. Again, things didn't improve and I had shunt surgery later that year, the day before my 40th birthday. The shunt stopped the severe vertigo but I was still dizzy and it didn't do anything for the other symptoms. After a couple of years things got better. I started school to get my Pharmacy Technician license. Shortly after I started having problems with that ear again and had to quit school. I was told that nothing more could be done for me.

Eventually, things got better again but the MD continued to go in and out of remission, primarily tinnitus, pressure, and hearing loss. Then it went into a complete remission which lasted for about 5 years. The last couple of years I've had nothing but problems with a few complete remissions lasting a few months. The issues are the pressure, tinnitus and hearing loss. I did have some balance issues last year that were a low-grade lightheadedness that resolved after about 4 or 5 days, but I still would feel slightly lightheaded looking up or down or bending over.

This latest bout started in mid-February. These symptoms are debilitating and prevent me from living a normal life and doing normal activities most of the time.

The only triggers I have ever identified are drastic changes in weather/barometric pressure and prolonged stress.. Never noticed any correlation to anything I eat or drink, allergies, or anything else.

Last year my Kaiser PCP sent me to an ENT, which was not only not helpful, but a very all-around negative experience. I don't have any illusions that I will ever get any help from the medical community. I know better. All I can do at this point is hope for another long-lasting remission.

The emotional/psychological toll of this horrible disease is as bad as the physical toll. Even after so many years, it hasn't gotten any easier to deal with. It isn't something I've ever been able to adjust to. I find the symptoms harder to cope with the older I get. Having this horrible disease has taken a toll on my self-esteem. I can't help but to feel less than because of it. It's been demoralizing that it's prevented me from doing things I wanted to do. And I hate having to be dependent on others when I am having issues. It really is a life-diminishing and in some cases life-ruining disease.

It makes me angry that little to no research is done and there is still nothing new to treat this since I was diagnosed all those decades ago.

I don't know what else to say. Wish I had some words of wisdom for all of you, but I don't. I struggle just as much as everyone else.

 

Thanks for sharing. I hope another remission comes quickly for you.

 

Thank you. Maybe if we start having consistent weather, that will help. I wish you good days as well.

 

What hell for you! I fear I am on a similar road. I’m wondering if what you experience with the pressure and tinnitus is the same as what I’m experiencing...
My ent and neurotologist aren’t exactly sure if it’s Ménière’s yet. It’s been going on 2 years. I don’t have vertigo but have had floaty feelings on and off but don’t bother me much in comparison to everything else.

I get “episodes” that can last days or weeks and vary in intensity which include low pitch tinnitus exactly like the sound of sitting in the cabin of an airplane, fullness,pressure, I FEEL it in my head/ear like energy, like something is taking over from the inside- this is the most bothersome. My hearing in the lowest frequency drops during it, but then returns to perfect after. The symptoms are always together, never isolated. It’s so messed up. Does any of this sound like what you have experienced?

I can’t work because it’s so intrusive and I can’t be myself or feel confident in dealing with patients. The past year the longest symptom free time has been 3 weeks. The year before that, I had a run of maybe 4 months free.
I can’t correlate it to any triggers and I’ve tried serc with no luck. Thanks for your time

 

What you describe sounds very much like what I deal with. Are the floaty feelings you are experiencing related to the position of your head, such as looking up or down, bending over, etc.? Occasionally I will get those floaty feelings as related to the position of my head.

 

My floaty feelings don’t seem to be related to position. I don’t experience it that often anymore. It seems like it was more prevalent last year for about 5 months. But I definitely feel off and weird in my head during the episodes.
I’m 41 and can’t imagine life like this.
Your hearing loss was only during episodes too?

 

My hearing fluctuates when I have symptoms. The amount of pressure, and the pitch/loudness of tinnitus vary as well. I do have permanent hearing loss in both ears, much worse in the left ear, which is the one giving me so many problems these past couple of years. I had a hearing test last year which showed more hearing loss in the right ear, which so far I have not had further problems with, so I don't know if that loss is Meniere's related or just age-related. I am 65 and both parents had a lot of age-related hearing loss, which started in their 60s.

 

Did either of your parents have Ménière’s? They say it’s hereditary...I have a large family and apparently no reported ear issues. Shrug.

 

No one in my family had Meniere's that I am aware of, or that my parents were aware of. The only known ear issues were age-related hearing loss. At the time I was diagnosed, I was told that as far as what anyone knew
there was no known hereditary factor, but that was 45 years ago.

I chose to not have children, and Meniere's was very definitely a factor in that choice.

 

Wow. That is definitely a huge decision to deal with under these circumstances. I’ve recently been questioning my ability to care for a baby if I were to get so lucky. I’m been trying to get pregnant for over 3 years...IVF, everything... maybe the universe is telling me something. The clock is about to shut down anyway. All very devastating. I could cope enough i suppose if things don’t get any worse (meaning I never develop vertigo) but my luck doesn’t seem to go in the right direction!

 

It wasn't a big decision for me. When I was diagnosed at age 20, I was already about 90% certain that I did not want children, for a lot of different reasons. The Meniere's was just one more good reason to add to my list of reasons for not wanting/having them. I already saw nothing but downsides to having children, even if I didn't have this disease.

Even if I had been leaning towards wanting children, I would have thought long and hard about having them, having this disease. Not only because of the difficulty of caring for child while dealing with the symptoms of this horrible disease, but also the possibility that I could pass this on to someone else. Considering that they are now saying that Meniere's could be hereditary, I personally think it's a bad idea to risk passing it on. I do think it's something to think about and consider. I wish you the best, whatever you decide to do.