A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Tuesday, July 5, 2011

House Ear Clinic Visit and a Day of Fun @ the Irvine Spectrum

It's been a busy day!  It started off with a 90-minute drive from San Diego to the Orange County House Ear Clinic location (more on that later), followed by an afternoon at the Irvine Spectrum.

We arrived at the Spectrum just in time for lunch at The Cheesecake Factory.  Notorious for the large portions, we laughed that it takes a family of five to be able to finish a meal there without being completely stuffed.  There was some sharing of food and we still came home with a doggie bag.

After lunch we took the kids to Dave and Buster's to play video games.  They were in heaven!  The place was empty and they ran from one game to another, racking up enough tickets to buy a few pieces of candy and a couple of chintzy plastic toys from China. I watched them play the coolest touchscreen game, Fruit Ninja.  Now I see it is also available for the iPhone. Uh, oh.

After D & B's, we headed over to the Ferris wheel for a bird's eye view of interstates 5 and 405, as well as the foothills surrounding Irvine.  It was a beautiful, albeit somewhat smoggy, So Cal day.  We topped it off with another new discovery, Pinkberry frozen yogurt.  Yum!!  I've certainly heard of it, just hadn't gotten around to actually trying it.  I got coconut with these funky little mango-flavored juice ball things.  I will be back.

Down to business now with the details of my visit with Dr. Wilkinson.  First off, I'd like to say he's a really nice guy but, as is the status quo just about every doctor, our time was rushed.  Despite our rather short time together, I still feel like quite a lot was accomplished.  I'll break things down by the questions I had for him and the resolutions:

My current medications include furosemide 20 mg (plus Klor Con potassium) once a day.  My SD doctor switched me from HCTZ to this a couple of months ago seemingly at a loss as to what to do about my complaints of ear pressure and nasal inflammation that were not improving on allergy meds.  What do you think?

According to Dr. Wilkinson, furosemide (aka Lasix) can be ototoxic, especially in combination with oral or IV aminoglycosides (i.e. gentamicin).  Since I am taking a low-dose of furosmide it's unlikely it's had any ototoxic effects, but he wants me to d/c it and go back on hydrochlorothiazide (HCTZ) however at 50 mg once a day.  He said some people respond better to the higher 50 mg dose given at once rather than split between two 25 mg doses.

I had allergy testing done last month that showed no clinical signs of me being allergic to anything.  I brought the report with me which detailed that both specific and nonspecific tests failed to identify any objective signs of allergy.  Yet the allergist did observe that I have significant nasal inflammation and called it nonallergic rhinitis.  He said I could continue taking Claritin, though he didn't think it would help anything, and also prescribed Veramyst which is yet another nasal steroid spray.  I had some improvement initially, but most days I still wake up with facial pressure and nasal inflammation.  (This can't be helping the pressure in my ears.)  What are your thoughts?

Dr. W felt I needed further allergy testing as my symptoms, to him anyway, seem to be some kind of allergic response.  I disagree since I don't have sneezing or any kind of dripping nose or watery eyes, just inflammation which to me feels like by body trying to fight something off.  Yet I am not opposed to further testing, so he referred me to his colleague, Dr. Jennifer Derebery, House Ear Clinic's allergy and antiviral guru.  I will be making that appointment soon, but have to iron out insurance details first.  In the meantime, Dr. W prescribed a 6-day Medrol pack.  I have been resistant to oral steroids up to now, but I am at a loss and desperate to get some relief.  I asked about other allergy meds, such as Singulair, instead of taking steroids, but he wanted me to see Dr. D first.

I am on week three of famiciclovir 250 mg twice a day.  I have noticed more gurgling in my ears, a good thing I think, and my good days I seem to feel better than usual but I still cycle through my usual set of symptoms which are fluctuating tinnitus, ear pressure, and balance problems.  I think it is too soon to tell if they are helping or not.

Dr. W says he usually only prescribes antivirals for one month, but admits Dr. D will sometimes give a 3-month prescription.  I told him I felt strongly that I should try them for 3 months to be sure I gave them the best possible chance of working if they were in fact going to work.  Since I will be seeing Dr. D within the next couple of months, he was agreeable to that plan.  In addition, he ordered the following blood tests: CBC w/ dff, Sed Rate, quantitative serum immunoglobulins, ANA, rheumatoid factor, FTA, and urinalaysis.  I asked about other viral load tests, but he didn't feel they would be helpful at this time and didn't "see the point."  But, he said, if any of the above come back out of range, then further tests might be indicated.

After digesting all of the information, along with my lunch and the Pinkberry, I have decided to do the following:

1. Discontinue the furosemide and go back to taking HCTZ, just 25 mg once a day for now.  I am afraid that taking 50 mg at once will make by blood pressure too low and leave me lightheaded and dizzy.  Clearly no one with MM needs that.  I will increase it, however, if my ear pressure becomes worse in the future.

2. Start the Medrol pack tomorrow.  I am eager to see if the facial pressure and cycle of symptoms can be improved with steroids.

3. Make an appointment with Dr. Dereberey, most likely at the end of August after the kids have gone back to school.  I don't want to pay a sitter to watch them all day since we have to see her in Los Angeles, a minimum two-hour drive each way, and I certainly don't want to bring them up there with us.

4. Follow up with Dr. Wilkinson after seeing Dr. D.

I still hold on to hope that the antivirals will produce some kind of significant improvement and believe I need to give them more time.  I will continue to take them for the full 3 months for which they were prescribed.  I may well make an appointment with my GP along the way, too, and have all the usual blood tests to be sure my body is tolerating all the drugs I am taking and just get her caught up to speed with what is going on in my MM world.

I feel pretty good about my appointment, but as always I wish I could take these guys out to dinner, get them drunk, and pluck their brains for more details about what they know about MM.  I also asked Dr. W what, if anything, new or exciting he was aware of that was happening in the field of MM study, but he said there was really nothing new he knew of except some stuff going on at Hopkins with IT dex.  We both agreed that was probably not the answer, but he did seem genuinely willing to share anything new as it came along.

All in all, it was quite a productive day.


  1. that sounds like a good visit! glad he's letting you continue with the antivirals for the 3 months. hope you can go even longer than that! i wish i could get a script for that long here. i also think it's exciting that you'll be seeing dr. d. i've heard such great things about her. i can't wait to hear your take on your visit with her. i think my "allergy" experience is like yours. inflammation but no positive allergy results.

    i wonder what it is with the medrol pack. my oto always wants me to do that too. i can't though because i have stomach issues and they do not go well together. hope it helps.

    and...sounds like a fun day with the kids!! :)

  2. Love the Spectrum!
    Teeny-tiniest little Nordstrom ever, though. (I imagine you liked the monster Target?) Excellent venue to spend the day overall! There may be more beautiful people per square foot there than anywhere except South Coast! Awesome people-watching!

    Next time you crave a day of shopping en plein air, keep my parasol and me in mind ;)

  3. Oh, Jen, you came up while we were there. Found a new store called G-Rated, all pink frou-frou stuff with a heavy Hello Kitty inventory. Erin wanted to go in, but I told her we'd come back another time and BRING AUNT JENNIFER. ;-)

    And, yes, lots of pretty people. Lol! But I missed the giant Target'. I think Phil steered me in the opposite direction.

  4. Nicki,

    I have been so resistant to steroids in the past. I am just worn down. I have to take 6 (!) today. After the 1st 2 this morning, I felt kind of tweaky, but ok now. I'll let you know if I notice anything in the next few days. But, yeah, they can have brutal effects on your stomach, etc. Even Dr. W admitted they are only a temp fix in the majority of cases and he doesn't Rx them over and over.

  5. I know G-rated and would happily go with Miss Erin :D
    I'm stunned you missed the Monolithic Target ... did you hit Sur la Table? The ultimate Angelea shop!
    CiaoCiao ;)

  6. Sounds like you had a very nice, day! What a treat!

    The doctor sounds promising. I wonder if he's heard about the research at Duke that I'm involved in. I don't think they've published anything yet, but I'm curious to know.

    I hope the steroids work, with no side-effects. I've been on them way too many times. ugh!
    The first time I got a lot of energy, in spurts, it was amusing. They often make people gain weight. Or at least are hungry the whole time they are on them. I gained some when on them, but took it right back off.

    Unlike now.

    My doctor put me on Prozac last month to help with the PMDD, and all I want to eat all the time is ice cream. I'm really not much of a sweets person normally, but I've been going through the ice cream. Crazy. Think I'll be calling him soon...I'm not gaining more weight, but I think it's because I'm not eating enough good food. : )

    Hoping you find relief!