So glad to report that I’m barely on this site anymore! It was my lifeline last year and now I just check in occasionally because I’m doing so well. I do want to respond to the person a month ago! who asked what the cocktail of 4 drugs I’m on: 37.5 Effexor (Venlafaxine actually, the generic form) in the morning and then at night: 15mg of Amitriptyline (20mg got me craving carbs) at 9pm, 12.5mg (half the lowest dose) of Klonapin and .25mg ((half the lowest dose) at 10:30pm. I’m zonked by 11pm most of the time, and wake up at 8am. My fitbit tracker shows that I’m getting around 8 hours of sleep each night and a good balance of REM, light and deep sleep. I was afraid that the sedatives were affecting my sleep. But on the contrary, they keep me steady at night and during the day.
I DO have some big stuff ahead - I will be a witness in a trial and I am worried about that time on the stand. Already I do get dizzy spells when I’m stressed - as soon as my blood pressure goes up. I’m working on some meditation and breathing techniques (that’s what Hilary Clinton did in her 11-hour Bengazi hearings so it must work!) But may also try a beta-blocker. We’ll see.
I’m working again - still haven’t started giving my public talks yet - not quite ready for that. But I am doing the other jobs where I’m on my feet all day (no computers and no elevators since they are both a trigger still for me .)
I have NO IDEA what I have. Mal de Debarqement is what top doc in Boston suggested, another thought plain old MAV. A previous doc in NYC saw signs of secondary hydrops.
I’m just treating the symptoms and trying to take great care of myself. Exercise, plenty of water, FFO (fresh food only) and lots of love from friends and family. I eat dairy - tons of cheese, avoid caffeine, pickles, wine, and have even started eating chocolate again. Will see if my threshold for that holds.
And now, gotta get off the computer because typing is my nemesis!
Love this awesome community. Thanks for all the support.