May have hydrops?

My story in a nutshell....

About 4 years ago, all of a sudden I started having terrible problems with my ear clogging. It was really bad and went on for about a month-5 weeks acutely and then gradually improved. I was tested at the time with minor high frequency hearing loss. No idea if that was already there or if it was caused by the clogging.

About a year later, tinnitus developed. It took several months to get 'used' to it. It was almost always an air hissing type of sound and it would actually go completely away for days at a time and eventually it got very low. For the next 3 + years it was nothing more than a minor annoyance.

All of a sudden about a month ago, I got a mild case of the clogging for a couple days. I came home from work a few days later and fell asleep. Woke up in the middle of the night with a new high pitched ringing that thankfully went away the next day. However since then the tinnitus seems to have 'spiked'. Then the random fullness started happening again. Then I would get a few episodes where the pressure in my ear would build throughout the day and get to the point where it felt like it 'exploded' and would start ringing in a high pitched tone for like an hour.

While on prednisone, the symptoms definitely improved but when the dose was finished the problems came back again, although not as bad as before.

My hearing test is slightly worse than it was a few years ago, but my losses are in the higher frequencies, not the low like I read its typical for Meniere's/hydrops.

I have not had any vertigo thus far.

Anyway I want to get on top of this now in the possible early stages before it gets any worse. For me the loud tinnitus is by far the worst problem. Luckily it is not loud everyday but it is extremely disturbing to me and makes me miserable.

I don't even know for sure if I have hydrops. My doctor 'diagnosed' only on my symptoms and hearing tests. I have not had any MRIs or other types of testing. But that said I have read about Dr. Gacek and his son. I am only about 2 hours away from the younger Dr. Gacek in Mobile (I'm in New Orleans area). He takes my insurance so I plan on making an appointment with him to try to get on the antivirals. I have had fever blisters since childhood, as well as chicken pox and a mild case of shingles right around the time this all started 4 years ago. I spoke to my ENT here today about the antivirals and he totally dismissed it--I know he'll never prescribe it.

I have also ordered all of the JOH ingredients (they all haven't come in yet) as well as Benny Hill's B vitamin regimen. Been on the Lysine, Lemon Bioflavonoid and the B vitamins for about a week now. Not enough time yet to know if anything's working.
I also noticed there is a cervical chiropractor near me. I may consider that option if these first options aren't successful.

Anyone have any advice for me? I have gotten so scared and depressed, thinking i was going through a tinnitus 'spike' to now thinking I've gotten this rare lifetime disease.

 

Just wanted to add....I've always thought there was a significant allergy component to my issues. My first attack started in July. Every time I've ever had problems, they have always seemed the worst around the late summer/ early fall (July/August/September/October).

I remember a few months after when I first developed tinnitus, I went on a trip to visit my cousin in Minnesota. I live in South Louisiana, the allergy capital of the world it seems. My tinnitus was virtually gone the entire week I was there, only to return the day after I got home.

I was tested several years ago for environmental allergies, and I think I was found to be allergic to at least 8 or 9 different things, including ragweed, oak trees, dog dander and grasses. The doctor said the test did not show that I was 'highly' allergic to anything, and by that time the tinnitus was getting much better on its own, so I did not follow through with the shots.

The other weird thing about my tinnitus was the fact that it will completely disappear for days at a time. At one point it was staying away for weeks at a time. Even when it was there, it was usually just a gentle air hissing type of sound that was usually so low as to be unproblematic. That has been the pattern the last 3 years until a month or so ago. For instance, all last week I had virtually no tinnitus other than a very ignorable 'seashell to the ear' type until yesterday when the hissing came back pretty loud. It seems better today but sometimes it will get louder or more persistent throughout the day.

 

Thanks for the great advice Ivan. I may not have been clear in my post, but I never did even start the allergy shots. I should have ignored the ENT and went ahead with them anyway---maybe I wouldn't be going through this right now. Since it's been several years since I was originally tested, he is having me retested after we get the symptoms under control with some steroids. Even if I still show only 'mild' allergies, I am going to insist on going through with the shots this time. If anything it really can't hurt anything but the spot where they stick the needle...and my pocketbook.

 

Oops, somehow trying to edit my post, I see I actually quoted myself and edited there...sorry!

 

Tomorrow is my appointment with Dr. Mark Gacek in Mobile (Dr. Gacek's son). I am takng the 2 hour drive over from my home in the New Orleans area. As I explained in my previous post, I am pretty positive I have cochlear hydrops in my left ear. No vertigo yet. Only had some mild lightheaded/slightly dizzy episodes so far; not sure if that is from the Triamterene actually. But I have pressure (sometimes really bad) and all the other symptoms.

Anyway, I find this extremely distressing and disorienting. I can't imagine living with this (I'm 44 YO) PLUS vertigo attacks for the rest of my life. Therefore I am hitting this head on with everything I've got. I started JOH 3 weeks ago and have been following it religiously. Already lost 20 pounds from eating much less. Having to take Lysine on an empty stomach actually cuts out a lot of unnecessary snacking! My BP is better from reducing the salt. I have also been following Benny Hill's B vitamin regimen. Will look into upper cervical chiropractor if it comes to that.

But from what I understand, the "Big Gun", so to speak is the antiviral drugs. I am willing to beg Dr. Gacek to prescribe them to me tomorrow. I have had fever blisters my whole life as well as chicken pox. I even had a mild case of shingles shortly before my first bout of aural fullness happened several years ago.

Which type of antiviral works best? Is there a specific type to ask for? Is the name brand Valtrex better than the generic? From what I've been reading it seems like the Northstar brand is preferred and Mylan is to be avoided.

I have United Healthcare. Can anyone fill me in on the relative cost $ of these medications? Is it worth it to pay for the brand name for at least the first high dosage period? I would be willing to pay a pretty penny if it works better!

Not sure about anyone else's faith, but the distress of this situation has helped me to focus my attention back on what's truly important in life. I have started attending church again after many years, started praying and even started studying the Bible with my grandmother. I pray that God helps me to get through this so that I can be a better person and help others. Money, clothes, cars, etc means nothing when you are miserable and in distress 24 hours a day!

 

Well the appointment was almost 6 long months ago now. He started me at first on acyclovir then switched to valacyclovir about 6 weeks ago.

It took many weeks/months and I have had several periods of setbacks, but over the past 6 months I am definitely trending towards significant improvement. Tinnitus is still there most days, but it is returning to the soft hissing that is much more tolerable (the way it was before the meniere's diagnosis). However, it has actually disappeared completely several days the last few weeks. The clogging/fullness (most hated symptom) has mostly disappeared. Never had vertigo but had some periods of lightheadedness/mild dizziness. That has almost completely returned to normal.

I have also recently started allergy shots (about 6 weeks ago) so not long enough to know how that might help yet.

 

Not really specifically.
He basically said 'eat healthy' lol. He said if the antivirals got your symptoms under control then the ultra low salt thing shouldnt really be necessary anymore, although don't go crazy with the salt, either.