If any of you follow my story I have been on short term disability for one month due to worsening symptoms of MM, possibly from a change in the antivirals I’ve been taking since November. I started diazide a couple weeks back and have improved enough that I’m not tied to my bed most times of the day. Hard to say whether the improvement is due to the AV’s, diazide, both or neither. I’ve also had to start a taper of the 2mg daily Valium regimen I started back in November to quell the constant debilitating anxiety. The bright side is I haven’t had another massive vertigo attack since started by the AV’s, but I’m far worse than I’ve been in the past. I’m due to go back to work tomorrow and I’ve been trying to get out in some public places and stores to prepare myself. I haven’t been very successful, the general chaos, lights and sounds of the real world send my anxiety through the roof and I begin to get dizzy and sometimes experience nystagmus without vertigo. At home, I’m able to almost fully function. I installed a silcock faucet in a 30” crawl space yesterday without much difficulty. This leads me to believe that the anxiety is a bigger issue than the MM right now as it pertains to my work life. I’d love to get totally off the benzodiazepines and I’ve tried yoga, breathing and meditation which work but very short term. I have an appointment with the academic ENTs that did my testing next week but I’m at a loss as to why I’m going or what they will offer. I’d like to not have any surgery right now since the vertigo issues seem to be at bay. So I’m asking “What would you do” in this situation? I’ve got to find a way to get back to work and stay there.
If you are missing work you have to start getting aggressive. I would go all in on the anti virals for as long as you can. If they don't work...then I would look into some other more aggressive ideas. do you have any hearing loss? If the hearing is shot then being more aggressive makes sense. (side note - I've had shunt surgery, 12 steroid shots, 2 clinical trials, 2 cycles of reggenokine - So I know where your at) hang in there! shoot me a message anytime!
Thanks, Mac. I’ve been on 1000mg valacyclovir tid since late November. I feel like they have definitely helped, but I also feel like was duped by the Valium. Partly my fault for taking it daily, but it did allow me to function at work relatively well. Now I’m being forced to withdraw much faster than recommended and it sucks. Believe me I want to get off but I need to do it right. I have about 60% of my hearing left so it’s not super bad. On good days it’s almost not an issue since I’ve begun to read lips. My main issue is figuring out how to break the cycle of the anxiety feeding the dizziness and vice versa. If I don’t worsen, I can handle the tinnitus, fullness and partial deafness just fine.
It's so tough when you don't have a relationship with your doctors that helps them to work with you and understand you as a whole person. With 15-minute visits and much of it screen time for the doctor, how do you build the two-way trust? If you can get into a psychiatrist that your insurance covers and doesn't have a long wait list, you can get your anxiety treated. And maybe your primary care doc could step in with referrals to ease and help through the transition. There are also addiction specialists who can help a person get functional through transition off meds including benzodiazepines. What troubles me most, is that this is one of very few medications that is effective for Meniere's. It's standard rescue medicine. A preventive 2mg daily dose is still recommended in some research I've seen, though that preventive use is changing, as you well know. I use 5mg valium for a rescue medication, and don't know what I'd do without it. For 10 years I've been getting a prescription for 30 tabs with one refill once a year. Even though I've used fewer than 60 a year (in a good year many of them would expire) for a decade, I still got a little static from my ENT when asking for a prescription refill -- "just keep using the expired ones; new reports show medications last longer than they say". I do not want to be stuck with ineffective meds when I'm in serious trouble, so when I had the unexpected opportunity to see a different ENT (for the eardrum puncture because my regular one was away), I asked her for the refill. She did it, and put it under my regular ENT's name. There must be some really burdensome paperwork or sanction threat these docs are facing for these meds, and meanwhile we are suspected criminals instead of vulnerable patients who just want to get through the day. That's my wordy rant. I can only imagine how awful and frightening the med transition can be when you're vulnerable already and finding no support. I hope you keep reaching out wherever you can find comfort and solace and, hopefully, solutions.