At this moment in time I would be considered a success story but that could change in the next 5 minutes. There are no cures for me - only symptom free maintenance periods and they are always at the mercy of unavoidable triggers. And of avoidable triggers when my self control fatigues. I will never again be carefree. There are too many triggers to stifle so I am potentially always "on the verge" of vertigo and vomiting and ear fullness/pressure and worse. I do feel, however, much more in control.
I have not suffered a severe, uncontrollable problem for 10 months. Before that bout I went symptom free for 15 months. I have small flurries of vertigo but I know what to do and they subside. I maintain a hearing loss in my right ear and varying levels of ear fullness (this fluctuates). This is my success. If I am careful not to feed the beast, he lays low.
Finally having mostly symptom-free periods of time came about, I feel, because I:
-found an oto-neurologist who said it was Migraine, not Meniere's. This took 50 months (An interview in "The Guardian,2008, of a physician at "The Balance Center" said it took, on average, 44 months for people to arrive at their door. Patients had seen their GP about 8 times and made four or five trips to other hospital specialists.) My doctor is at the UCI Medical Center in Irvine, California.
-was placed on Nortriptyline (Pamelor) for 12 weeks (kicked in at 5 days) (25mgs, then 50, then 25, then 10). This drug kept me vertigo free while I reduced and eliminated triggers. The only side effects were AM fatigue, constipation and maybe a 2 pound weight gain. I immediately began trigger elimination and rotation.
-developed the self control (mostly) needed to eliminate avoidable triggers and be more aware of the unavoidable ones. This took over two years to really internalize and believe they had an affect on me. I am still tired and less productive without coffee. I always get a little dizzy when I am at the computer too long. (People who work at computers all day, under fluorescent lights, and who have much busier lives than mine will have a bigger challenge eliminating triggers.)
-discovered nuanced triggers - additional ones that pertain to me. I am better off without bread (yeast?, wheat? high glycemic foods affects insulin levels?) and only small amounts of tomato based products and white potato. Of course, these are also all histamine foods. An occasional Allegra/Allergy or Nasonex helps my ear pressure and tinnitus and that too suggests a histamine (swelling) problem (rather than a secondary Meniere's issue). Eye motion is a number one trigger and I really have to limit reading and computer time and throwing my eyes around the room.
-read and re-read "Healing Your Headache -1-2-3" and the article "Migraine - More Than A Headache", both out of Johns Hopkins.
So, success means I have a plan. I can control, but never forget about, many triggers. This keeps my symptoms mild. Occasionally I take Allegra or Nasonex for ear fullness. If everything falls apart in the future, I can go back on Nortriptyline. My only fear now is outliving my doctor.
(Click Here to see what then happened after I wrote this post)
No comments:
Post a Comment