At the time of my first MAV episode, around 3 years ago, I suffered from an enormous panic attack which saw me end up in the ER. Since that first episode, my symptoms of dizziness, head pressure, and tinnitus have been 24/7.
Additionally, however, I have been highly agoraphobic. I dread making any sort of appointment, date, or commitment for fear that while there my symptoms will escalate (as they do at some point every day) and I will be caught in a situation where I am unable to make a quick getaway so that I can tend to my symptoms and thus avoid an embarrassing panic attack (several of which have occurred when I go through with commitments). Consequently, I rarely commit and follow through on anything, in turn making the cycle of anticipatory anxiety worse.
I’m aware of the kind of progressive exposure that is required to treat agoraphobia, however because of the MAV, I am unable to stick to a consistent schedule of going out and attempting to live life without drastically worsening my symptoms. My hope is that once I find a preventative medication that makes a sufficient impact on the migraines and dizziness, I will finally be able to commit to an agoraphobia treatment plan.
I suppose I’m not really looking for advice or anything here, but just wanted to share my experience and hear from anyone else who has had similar mental health problems directly as a result of their MAV, PPPD, Secondary Hydrops, etc.
What you speak about is a general challenge for MAV sufferers. Call it agoraphobia if you like, but I think this is a common issue for most sufferers, at least initially: that many environments become a big, uncomfortable challenge and the temptation is to stay home and not engage with the outside world. And again, the solution is to do the opposite of what your instinct is telling you: you must expose yourself to all these challenging environments in order to improve.
Yes I agree that once you find a medication that really helps you this will all come so much easier deal with and approach head on. It was for me.
As @turnitaround says it’s common with MAV. I was the same. It must be common in life generally, avoiding situations you feel uncomfortable in, and immediately you are in the realms of pyschology of avoidance. I was truky surprised how badly it affected me. I’d never have dreamed I’d be afraid ofgoing/being outside. I’m a wild country girl used to walking miles alone in isolated places with my dogs, in all winds and weathers, even in the dark and never a qualm since I was eight or nine years old. Go anywhere, drive hundreds of miles alone (for work, or days out). Totally self reliant, then post chronic MAV, all gone, people didn’t help. Everything seemed to transpire against me getting outside, VRT body told me to walk with a stick, walk out daily but never alone (impossible in my life). Chronic MAV brought me extreme light sensitivity. The slightest extra bit of light would send me reeling , I was already 24/7 dizzy but it would ramp up higher. I’d been told so little but was told to avoid all triggers. GP gave me worse possible advice ‘best to stay in until you are better’. No. That’s like tomorrow, it never comes. I guess I didn’t leave the house for at least five months. First time I was terrified, my SO had to virtually hold me up to walk around our garden for ten minutes, Walking outside is difficult with chronic MAV. BUT i wouldn’t wait until you are stabilised on a new drug. That could be nine more months or so. Do start now or very soon. It can take a long time but it does pass. Helen
Thanks so much for your reply and for sharing your personal experience, Helen.
I was much the same re: light when I first became ill; I didn’t open the blinds for months.
I’ve been making an effort to get out (haircuts, lunches, walks, etc.) for short periods of time on my good days, and this has managed to bring my agoraphobia down from ‘absolute’ to ‘bearable’ (just). I’m hoping to keep building up this progress, even while I wait for that drug which will help me to really commit to re-building my confidence outside of the home.
Best wishes and I hope my post found you well,
D x