If this keeps up, I'm going to have to create an off-shoot blog, tentatively titled "Half A Bubble Off: My life with Meniere's Disease."
So yesterday I went to see the Ear Nose Throat guy. This is the appt I've been waiting for since the whole situation began, almost a month ago. It seemed a long time to wait. What I understand now is that the rough plan of my life is that I will be seeing Dr. Mooney EVERY month for a long time to come. Thus to manage my chronic vestibular disorder. Unfortunately it was sort of anti-climactic. I brought a list of questions, but felt like I had to nearly chase the Dr., who was quickly moving on, down the hall to get them all answered.
Okay– so the results of my dizzy test last week were SORT OF good. That is, I don't have any wildly horrible damage in my inner that's beyond repair. I don't have any type of ghastly malfunction that made all their machines go wild. No. In fact, on a lot of the tests, my "balance organ" was normal. THis news alarmed me in a strange way, not unlike that frustrating feeling when the mechanic can't hear the clunk your car is making. You see, the dizziness issues are making a mess of things in many ways. For example, just on Sunday, I got dizzy en route to Ben's Quaker Meeting, and had to lie down much of the time, and had to be helped around by others, and then spent the balance of the afternoon unhappily dizzy on the couch.
However, they did find one little doo-dad that was out of place, that is that when I change positions, things go heywire. There's this other disorder, other than Meniere's, called BPPV (benign positional something vertigo), in which little crystals floating around in your semi-circular canals get in the wrong places and you get vertigo. Well, since this whole thing started a few people have been sending me info about it and I didn't think I had it. Sadly– because it can apparently be fixed with a few simple manipulations of your head to adjust those silly crystals back where they belong. But BPPV doesn't come with all the hearing and ear symptoms that I've been having along with my dizziness problems, and also it lasts just a few minutes, when you're in the wrong position, and then goes away, which mine does not.
So anyway, I was sort of wishing I had BPPV instead of Meniere's, but didn't seem too likely. Yesterday the dr. brought it up, saying that my test results show a "positional component." I mentioned my understanding of the difference between the two and effectively he said, "Well, you seem to have both Meniere's and BPPV. They're interconnected and sometimes occur together."
Okay– it's a twofer. Well, on the upside, that gives me hope that maybe the head manipulation thing COULD help me after all, and so as soon as the rest of the world wakes up this morning, I'll get on that. I need to find a vestibular therapist anyway, because balance exercises could help my Meniere's problems, and apparently the same person can get my crystals (??!) under control also. I really think I could live with the hearing loss and the ringing if it were not for the dizziness.
So– action steps for now:
- find a vestibular therapist and begin work
- find an allergist and get a full allergy work up– allergies may have been at the root of my bad spring of multiple illnesses and may have triggered the Meniere's
- experiment with a larger dose of diuretics as needed. Looks like I'm going to be taking these for a looooong time.
- take Antivert– my new emergency medicine– if I'm really having a vertigo attack. Except that it says right on it, "do not take while breastfeeding," so that means I need to call the pediatrician too
- use daily steroidal nasal spray to keep sinuses under control… a whole nother aspect of this is my sinus malformation. The word surgery was bandied about yesterday, although I would get many opinions before anyone goes inside my head and starts cutting.
- Gotta call insurance and see how much of this is going to be covered
- Come back to see Dr. Mooney (ENT) in four weeks
- Plan on an MRI of the head in a couple month– this will look to see if anything else is in there, i.e. a tumor, and confirm the Meniere's thing, and see if my sinuses are still a mess or getting better.
Is that all? Like I need another full-time job, managing a fleet of doctors and paperwork.
But by the same token I have to do all I can, as this is really a major problem at times. I have had a few occasions when I've been here, alone with Elias, and have gotten so dizzy I've had a moment of blackness. My fear is of really passing out, falling, and being alone with a two-year-old at the time. Also, I'm very tired, already (although it's only been a month– Meniere's is all about the long, long term) of having my day totally up-ended by dizziness. I can't plan anything, although I do anyway. But who knows– will it be a good day or a bad day? This sense of non-control of my life is very upsetting.
Couple days ago I asked Ben if he had any questions for the dr. He said, "When will I get my wife back?" I have the same question– although instead of "wife" mine is "life."
But who knows– we're going to attack the problem from many angles, and supposedly mine is a "mild" case. Maybe the vestibular therapist will work a miracle, as has been the case with others I've read about!
In the meantime, this is my new hang out: