Ear issues, A recap. Read only if you suffer from ear issues or are having issues falling asleep (this is boring)

I was going to try to make a long story short as much as I could, but realized that it is nearly impossible if I want to include all the important things I’ve learned. I pondered whether to post this or not, but, I decided to go for it in the hopes that it might help someone else. Someone wondering if they are losing their mind, popping pills and finding no respite from it all. Granted, of course, even the same symptoms don’t point to the same source of the problem but it is a start.

First thing I learned: trust your instincts (or in my case, my spouse’s instincts who always asked doctors “Is this possibly allergy-related?”

Second most important thing I learned: don’t put all your trust in doctors. Sadly, most won’t even care about you as you will. Do your own research. Google things until your fingers bleed. Stay within the boundaries of credible sources.

Even when a doctor is wonderfully sweet and seemingly caring there’s still the chance that they don’t fully understand your symptoms and where they come from. Don’t be fooled by feelings alone.

My symptoms came in three parts: 1) first and blown under the rug, 2) main infection and surgery, 3) post surgery symptoms.

1) First and blown under the rug

Random buzzing in ears about four months before the main event (the acute middle ear infection).
Dryness in back of throat (where palate meets throat) which made me extremely thirsty.
A general feeling that something was off and feeling very (VERY) low in energy.

2) Main infection and surgery

Two weeks preceding the actual surgery I had persistent low grade left ear pain. I thought I was tough by ignoring it. Big mistake.
One Sunday night in May 2010 I felt like my ear was going to explode. Unbearable pain. ER folks at Florida Hospital gave me wrong diagnosis and wrong meds and sent me home (Aaaaah! The power of listening!)

I got significantly worse and a day later my family doc sent me to a specialist who, in turn, cut my eardrum open and vacuum-cleaned the innards of my ear. A procedure I don’t recommend (very painful) so don’t mess around with earaches! As for the causes for this or any ear infection: unknown (per all doctors).

Doctor did a VEMP test and, in spite of my own telling him: “I still feel horrible”, was the champion ignorer and pronounced me healed. That doctor’s name is Dr. Boger. So unless you are with one foot on the other side, I do not recommend him.

3) Post surgery symptoms.

One of the most annoying/scary symptoms was my difficulty breathing. So days I could hardly catch my breath and more than once I was this close to calling 911 because it got so scary. I literally had to gasp for air, like a half dead fish. I still do sometimes but a lot less than before.

A slew of doctor visits ensued in the nearly two years that followed. With each doctor (I think about 10 in total) either absolutely not caring, or worse, implying that I was making up these symptoms, to the ones that cared enough to do just one more test.

Some of the testing that was not done timely was a simple X-ray (done by doctor number eight!) which showed that I had fluid in my mastoid bone, which sits right next to your brain, and if untreated, can have dire consequences…did I mention this bone is right next to the brain? So I was treated for that (which was, of course, also affecting my ear) but most symptoms still persisted.

One of the last specialists I visited, upon reviewing my extensive files, asked “why has nobody done an ear pressure test?” Beats me, I said. So he did one. As a point of reference for the ear-issue uninitiated: both ears should be the same and stay at around zero. My right ear was plus 15 and the left was minus 15. Alleluia! There it was, in black and white, official proof. The physical evidence, after almost two years, that it was not all a figment of my imagination.

The reason for this? Unknown, the doc said…”could be so many things…”

After having tried so many things (some of which included letting a snotty doc insert a camera down my nose all the way to Pete knows where, and having steroids directly injected in my ear drum. Yes. Ouch.) and getting nowhere, I called to speak with one of the nurses and she said “Have you tried an allergist?”…I told her that every single doctor (ten in all) had declared my issue non-allergy related. She explained that my symptoms, although not the classic ones of sneezing and sinus pain, do fall under the allergy category.

Got allergy tested. I am allergic to just about anything environmentally speaking (dust, pollens, feathers, molds, etc.) except for oak. Then came the realization not to overlook in the future. Most times Physician Assistants know/care more than the actual doctors. It was a PA that pointed out to me, after my allergist, Doctor Spector, did not want to put me on allergy shots because my range (which can be from 1 to 3) was “just a two” hence on the mild side….however, he neglected to point out that because I am allergic to such a large amount/variety of things it is the cumulative effect that is making me feel so darn awful.

So I had to beg him to send me to the shots. He finally agreed. I switched allergy doctors, to one I feel knows/cares more and is not talking with me with one hand on the door handle.

Started my allergy shots about three months ago, and although usually it takes six months to see any improvement, I have begun to have good days. Sometimes two days at the time! I am still not perfect, nor feeling fully like my old self, but I feel that I am headed in the right direction.

For those of you who suspect you may be suffering from allergies, below are a few extra things I hope might help you:
My symptoms stayed mostly (except for a brief post surgery period of about three months) under the ear line. Meaning that I had almost never had sinus headaches.

I never completely lost my balance, except for, again, a brief post surgery period…which I suspect might have something to do with the rough handling of my middle ear area. Mostly I felt a sense of being ‘off’ as if walking on a weird surface at times…very hard to describe, sorry. Definitely, not the feeling some Meniere’s Disease sufferers have of ‘oh my gwad, I am gonna fall flat on my face’

I also was, correctly diagnosed with Eustachian Tube Dysfunction, which I believe is just a clinical quantitative manifestation (aka a symptom) of my allergies. This is what, I believe, always gave me the feeling that my ears were off, and that I had to constantly be equalizing them.

Be careful of what allergy meds you decide to take. They all act differently on most people. But some symptoms are kinda generalized, e.g., Claritin D and rapid heart beat (which scared me to death because I did not know about it) and Allegra which will dry out the snot out of you. I stopped taking it because it was making my symptoms worse. Oh yes, in the small print it says that on most allergy meds: they can make your symptoms worse. I wonder how that’s even legal to sell.

For the throat/mouth dryness the only thing that worked for me (because I cannot tolerate anything with artificial sweeteners) was Ricola (the honey ones) which also did not upset my stomach…and oddly enough: it helped equalize my ears. Go figure.

In case you are wondering about any possible food allergies, the tests came negative for all foods. However, the place where I was tested is not reliable in my mind as while I was waiting for the second part of the testing procedure, I found three mistakes in their work. At any rate, I was not re-tested but I do find that because I am allergic to molds, I must be careful with any aged foods. This means that I cannot have vinegar, tea, or most aged foods. Coffee, I find, sometimes exacerbate my symptoms but not always. Each one of us has to slowly learn to read one’s body.

And speaking of tea. Right before the main surgery incident, I remember, I started drinking my home brewed kombucha tea. This is supposed to be a wonder to one’s immune system…yes! Provided your immune system is strong enough to begin with. Be careful with it. For me at least (in retrospect) it made all my symptoms worse…also, my dear friend Juliana also had it with ill results. So be careful in choosing what truly works for you.

One last interest thing I learned: allergies are not hereditary, but the immune system deficiency is. This means that the allergy might manifest in different forms in different generations. Which is the case with me as well.

If you have any questions feel free to email me or post a comment. My email address is on the right hand side of the screen.
Posted by Picasa


Heiko said...

That sounds like you've been to hell and back. Hopefully you'll manage to stabilise the situation now. I was feeling a little out of balance the other night when we spent the night in our caravan. I had the feeling the caravan was about to tip down the slope, but put it down to over-active imagination. Next day I hear it was a mild earthquake, so no allergy test needed for that.

Mr. H. said...

So sorry to hear that you are still struggling with these terrible issues...stupid doctors are sometimes not worth more that the label on the pill bottles they so happily disperse. Can you tell I am not a big fan of the medical profession.:( I don't know what to say other than keep fighting.

GetSoiled said...

Hell and back is right my friend. I am so terribly sorry to hear about your darn earthquake! Scary thing...glad you all were safe.
I lived through one of the biggest earthquakes in Chile when I was about 4 years old...living in a free standing highrise...I think it was 12 floor...it is one of the few childhood memories I have...and not a happy one so I don't envy you!

Mr. H...keep fighting it is! At least I am in a better place emotionally, I am not letting it get me as down as I let it get me before...and yes, none of the doctors I met are worth a penny. The worse part is that they don't even pretend to care...so sad. And worse, they can totally get away with it...

tervy said...

I am so glad to see you back and to hear how things are looking up for you. Allergies hmm, go figure. But, I have long suspected allergies and defective Eustachian tubes hang out together. My own balance issues are improving somewhat; primarily due to working in the garden and using a hiking pole while in the garden. I'm now making the rounds in Orlando with the dizzy specialists for my elderly FIL. Oh so not joy.


GetSoiled said...

Hi Dianne! Nice to hear you are also feeling somewhat better...I seriously hope you can find a great doctor, sadly, there is not one I could recommend. Isn't that so terrible? Out of over ten doctors not one!

If you need a place for allergy shots do let me know because I go to the most wonderful people.