I have trouble talking about this so I'm hoping anonymity will help.
About 2 or 2.5 years ago I had my fist "attack." My PCP referred me to an ENT who diagnosed me with Meniere's disease. Over the next month or two the frequency of attacks increased until I was in a continual state of extreme vertigo. I could not walk, frequently became very confused, my vision was severely impacted and I vomited repeatedly every day. Heck, I could hardly crawl.
After many tests MRIs and on and on we ruled out everything except Vestibular migraines. I live in a sparsely populated state where medical care is not on the bleeding edge. So, my wife and I flew to Phoenix where a neurologist suggested VM as the reason and further suggested a course of treatment.
I did say that I live in a state with a lower number of up-dste specialists. The Phoenix doctor would not treat me due to distance and my local neurologist thought a VM meant a migraine so he unsuccessfully tried tried the standard migraine treatments, since I have a history of periodic classic migraines. He finally insisted I travel to our state's leading neuro-otologist who flat out told me "there is no such thing as a VM, any seasoned doctor doesn't believe they exist." After this expert failed to find anything I very literally begged him to instruct my local neurologist to follow the protocol from Phoenix.
So months after my Phoenix visit we started venlafaxine (effexor). What a difference even 37.5 mg made. It was amazing. I walked 4 days later for the first time in a year!!!
I am not cured. The undercurrent of the problem is ever-present even with medication alterations.
Even now I have daily breakthroughs and every week or two I have multi-day breakthroughs kicking me back to where I was. We are still adjusting medication. I'm back at work about 1/2 time now and have hopes we'll discover a treatment combination that will take me farther.
Unfortunately the breakthroughs are coming more often and I can only posit that I'm becoming used to the effexor. I am also a very long term chronic pain sufferer which means doctor after doctor is scared of drug interactions, as I well appreciate.
I am an unusual patient in that this all started about the age of 50. My wife and I don't know what our future holds. For a future retirement we are very scared as this reduces my Social Security benefits and we cannot live the rest of our lives on savings and my paltry 401k. When my company eventually lets me go, who is going to hire a 1/2 time scientist?
To top it off I've paid for disability all the while but The Hartford denied me benefits. I'm angry. I'm hurting. I hide as many of my problems as I can. My condition severely stresses my lovely wife. I'm scared. I have never truly been scared of anything, but as I continue to decline back toward where I was, it is the most daunting situation I've been in.
Don't get me wrong I'm thankful that I've had three months away from debilitating continual VM and I pray for more freedom. I want to work full-time. I want to be able to go see my grand kids. I want to be able to hold my wife and genuinely tell her everything will be OK.
I want to thank whoever set up this site as I just needed somewhere to vent my emotions. Today is one of my best or I wouldn't be able to type this diatribe by this point in the day.
Thank you all for permitting me to occupy your time.