— Begin quote from “Molly”
Hello -
I’m feeling frustrated because I had two great days (Thursday and Friday) and today stunk. I totally enjoyed my virtually symptom free days and feel THANKFUL to have had them, since they are so few and far between. It’s just that every time I have a good spell, whether it’s a few hours or a couple of days, there is this part of me that is clicking my heels together saying, “hooray! Just maybe we’re done with this freaky thing!” And the disappointment when it comes back is such a bummer. My dad said to me recently, “You know Molly, I just know that some days I feel better than other days. They aren’t all perfect.” It’s so hard for me to remember what normal even feels like. When I am at a D2 as I call it (Dizzy 2 on the scale from one to 10) I am completely thrilled. It’s my new “good day.” I can’t remember what it feels like to be totally dizzy free.
From where I sit, all variables are the same for me from day to day. I eat the same. I basically sleep the same. My stress level usually remains pretty much at the same level. I drink the same amount of water. So i just can’t point to any triggers. Maybe it’s hormones, which makes we ask if I should look at oral contraception.
I’ve been upping my visits to the acupuncturist since my diagnosis, now that I know what this is, and I’ve been hoping that it would “cure” me. I went twice this week and so I thought maybe I was “fixed” because of my great Thursday and Friday. I know everyone here knows what I"m talking about. The fantasy of a miracle. That one morning I’ll wake up not fearing how quickly I move my head or fearing the brightness of the sun. I’ve hoped so much to do this without medication. Somehow I felt like when I got the diagnosis, I’d just get better. That somehow just finally knowing that I wasn’t dying from some mysterious brain disease which would leave my children motherless, would cure me. I’m sure this sounds crazy to think that. I’ve done so much that is holistic in order to combat this. We’ve spent a fortune and so I guess it’s time to try the drugs. I’ve become such a pharmaceutical cynic - to my detriment.
I am rambling. I just had to put out how I’m feeling to all of you who understand this roller coaster ride. I so appreciate you listening.
Best,
Molly
— End quote
Roller coaster is a real good way to put it. For the first few years (initially diagnosed with Meniere’s in early 2005), it was real frustrating. Kept trying all sorts of different things, had some breakthroughs, then went back a few steps. Had some fairly significant breakthroughs last year after an MAV diagnosis in August 2007, some more progress early this year, then some setbacks. Kept trying different things. Went through a few docs.
Hit my stride in a big way a few months ago with a new doc. Getting very, very close to complete, steady remission. For me, it’s a combination of a superb doc adjusting some things in my treatment program, a great physical therapist who seems to know more about this ailment than a lot of doctors, and continuous experimentation with diet.
To be sure, it’s noteworthy that I’m kind of a “hybrid” case. It’s a combination of MAV (primary diagnosis) and Meniere’s (this was my initial, solitary diagnosis in 2005, but was re-confirmed last month along with MAV after further testing…SCD and fistula were suspected, but ruled out) mixed with a palatal myoclonus and some cervical vertigo.
Thinking back to early 2005, I tried the following before for a year or two before really hitting a steady stride this year:
Basic Salt restriction and valium for Meniere’s
Acupuncture
Herbs & Teas
Craniosacral
Ear tube insertion & Meniett
Vestibular Rehabiliation Therapy
In 2007, tried verapamil and Serc for a while. Kept using valium…which was always helpful. Dropped the Serc completely after a few months. Verapamil worked real well, mixed in with adjustments in diet. Upped the verapamil dosage…realized further progress…but then ran into some setbacks in early 2008.
Now, I think the progress is mostly attributable to **physical therapy **(my new doc referred me), keeping the same verapamil dosage, mixing in low dose effexor (no side effects for me), continuing with low doses of valium (I’m sometimes off of valium for 5 to 6 days at a time…don’t need it as much), and keeping to a very strict diet regimen.
I could not work full-time until this year. Now, 40-45 hours isn’t a problem. I just went through a 7 day stretch of work without a break this past week without significant issues.
Running about 60-65 miles per month (couldn’t run until last year…and it was limited), and doing about 5,000 to 6,000 crunches per month plus some stationary bike work and light weights. It’s a huge, huge relief.
One gadfly on the horizon is the change in weather sometime in late October. Weather is a big, big trigger for, but I’m not nearly as aprehensive about the winter this year than before. I experienced incremental improvement from 2005 - 2007, thus it should be even better this year.
Hang in there. The roller coaster can be a daunting, frustrating, and debilitating challenge, but the possibility of smoothing out definitely exists.