New to the forum. Lots of great stuff here. I was diagnosed with MD in 2018. I was prescribed valacyclovir about two weeks ago. Can anyone tell my (of those who were successful using it) how soon it started to work for you? I have seen no improvement whatsoever….in fact my symptoms are worse than before I began taking it. Thank you!
Within 3 days of starting Valacyclovir the fullness in my head started to get less, BUT the intense vertigo spells continued for months. Then the intense vertigo started to get better too. In all it took 6 months for the vertigo to disappear. This past October was 3 years that I've been vertigo free and I continue to take 3 grams a day. Stick with it for months for a true test.
Thank you for the info. I’m on 2 grams per day. Can I ask how long you had MD before you started on the antiviral?
I recently started Valacyclovir (past week) and I started to feel changes within days, mainly what I call the "brain fog" (placebo maybe?) and a definite change in what I call swallowing dysfunction - a clunking in my ears when I swallow. I'm on 3g daily of Valacyclovir for the next month and 20mg Prednisone for the next two weeks. The changes could be due to both or one or the other - who knows!? One other thing I've noticed since starting these meds is sporadic, mild, dizziness when I haven't felt any dizziness in at least a month. The type where an vertigo episode might have come in the past, but so far it hasn't come. Note, I've been on the JOH regimen for just under 3 months. I was officially diagnosed with Delayed Endolymphatic Hydrops (essentially Meniere's) just over a week ago, but my major symptom onset started about 6 months ago. I had some hints that I had issues starting about 10 months ago.
This is all great info and I truly appreciate it. I read one study about treating MD with valacyclovir that showed that people who have had MD for a relatively short period of time (less than two years) had a much higher success rate that those who have had the symptoms/diagnosis over the medium to long term (2-4 years and 4 years plus). My concern is that since I was diagnosed 5 years ago, and have had symptoms for at least a year prior to that, that it might be too late for the antiviral treatment to be effective on me. Anyone have any thoughts or experience with starting antivirals so long after becoming symptomatic?
I’ve probably read the study that you’re referring to, however, I wouldn’t lose hope. Patience is key. The longer it has been entrenched the more damage that’s likely been done, but there are many people that have passed through this board that have similar history and started on antivirals when you have or later. Don’t lose hope. It’s going to take time to see results. Years of symptoms are not going to undo themselves in days. Healing takes time. This is coming from a guy who somedays feels so terrible that I feel like I'm counting down the days until the good lord takes me and then other days where I feel like "I got this". We must not quit.
I’m going to give it a while longer to see of it works. But it’s been so bad lately that I’m seriously considering the low-dose Gentamicin route. Nothing else I’ve tried has worked…low sodium diet (1500mg) per day, no caffeine, no chocolate, increasingly high dose of diuretics. Now the antiviral.
I can very much relate. Some days, my athletic and outdoorsy old self returns, and other days, because of the looming dependency and the unpredictability that takes away my confidence, I am horrified at the thought of becoming housebound and I just wish the struggle would be over. Makes me remember to rely on God...