Hi Chawnz, the one thing you can guarantee in this forum, is that we all understand what it’s like to go through what you are going through, because we are all suffering the exact same symptoms to a large degree. So please don’t think you are alone in any way. Everyone here can relate to you in some way. I would say the number one symptom that defines people on this forum is chronic 24/7 vertigo, probably followed by anxiety.
Anxiety and vertigo cause a wide variety of other symptoms. Vertigo causes problems with vision, memory, fatigue, depression, thinking patterns, dissociation, derealisation, visual noise, tinnitus, feelings of being on drugs, of being about to pass out, etc. Then on the anxiety side you can get a whole host of new symptoms like chest pain, stomach pain, sweats, impending feelings of doom, shaking, dry mouth, etc.
But I firmly believe that 95%+ of the symptoms people here get are related to either vertigo or anxiety. There’s just such a huge variety of symptoms these two issues cause.
I’m 29 years old and had my 2 year attack at the age of 22, so I have some experience with this condition. The first attack was absolute hell but it taught me a lot of mental tricks that have been helping me the greatly the second time around.
When you first get MAV you go through some distinct stages. The first is the “am I going to die?” stage. That stage can last quite a few months but usually after you’ve seen enough doctors, had a brain and heart scan, you can get past this stage. People in this stage often get anxiety so bad they end up taking a few trips to the ER. It’s nothing to be ashamed of, it’s natural to reach stages of anxiety you didn’t think were possible in the first stage of this condition. Even one of my vertigo doctors told me that vertigo conditions are defined by the irrational fear of death he initially sees in his patients. I can still remember being in hospital many years ago begging doctors not to let me die with tears in my eyes. I honestly thought I had only minutes left on this earth. No amount of reassurance by the medical staff could convince me I wasn’t about to die. The anxiety was so bad they ended up injecting me with an anti-psychotic, then giving me a huge dose of oral Valium. It took me several days to feel normal again. It’s almost comical to think back now on how absolutely terrified I was. I made about 3 trips to the ER during this stage before I finally gained the strength to keep my panic from tipping over the edge into 100% freakout mode.
The second stage is the “I can’t walk around without falling over, and I’m so anxious I can’t leave the house” stage. At this point you know you aren’t going to die but you are still wracked by anxiety. You probably feel depressed and have a lot of thoughts like “why me?”. It sounds like this could be where you are at right now.
The second stage is where you have to be at your strongest, because unlike the first stage you have to push through this one without drugs and trips to the ER. I recommend exposure therapy, reading about anxiety techniques like mindfulness, cognitive behavioural therapy, acceptance and commitment therapy, and dialectical behavioural therapy. It will also help to listen to useful self-development podcasts which focus on finding meaning in your life, or which deal with depression.
Just as important as the mental learning, you NEED to become physically fit at this point. It’s the only way to recover. Sitting around the couch is NOT the solution, it just stretches out the dizziness indefinitely as your body is not forced to adapt.
I recommend getting a pedometer or a phone which can count steps, and starting off with working up to 10,000 steps per day. I started off in my house just walking around a table in a circle for several hours, with breaks every time the dizziness became overwhelming. Then after a couple of weeks I started walking around the table while moving my head around a lot to provoke the dizziness. The idea of this stuff is exposure therapy, and the idea is to challenge yourself. If you aren’t getting really dizzy you aren’t challenging yourself enough. Don’t be afraid if you get especially dizzy for the first few weeks of this routine, like you’ll do the exercise and feel dizzy for the rest of the day. This is normal and part of the slow process of teaching your brain to walk without relying on the vestibular system.
After doing this for a while your balance should get to the point where you no longer fall over no matter how dizzy you get. At this point you can start getting a portion of your 10,000 steps per day outside. Try and slowly work up until you can walk 10,000 steps outside each day no matter how dizzy you feel. This is a good way to practice dealing with anxiety at the same time. I guarantee you will have a lot of very anxious moments walking around outside in crowds while super dizzy, but you will get used to this too.
The final stage is starting to run. This is where I’m at right now, I’ve been running for about 3 weeks now. Walking no longer provokes the anxiety any more, so generally when I wake up really dizzy the first thing I do is put on running shoes and go straight out the door. I like to have at least one huge rush of anxiety before breakfast
Remember the goal of all this exercise is NOT to stop feeling vertigo. You’re just setting yourself up for failure and disappointment if you think like this. Measure success by what you achieved IN SPITE OF being dizzy. In fact the more dizzy you felt the whole day the more proud of yourself you should be of achieving things.
Once you’ve seen a bunch of doctors you’ll likely realise what the nature of this condition really means. It typically lasts for 2-4 years regardless of what drugs you take, and about 90% of people are in full remission by 7 years. Migraine diets work for some people but are useless for me - I don’t appear to have any food triggers despite careful experimentation. Most drugs are absolutely useless except for Benzos which you can only take very occasionally as they are addictive and can actually delay the process of brain adaptation to vertigo. But I always keep a Valium and a Clonazepam in my wallet just incase. It’s nice to have that security on hand knowing that I can end a bad experience if it strikes me suddenly at a bad time.
Once I realised this I stopped focusing on the vertigo which I have no control over, and instead started focusing on two things I can control: my physical health, and my anxiety. So I concentrate my time now on running, doing at least 10,000 steps per day, working out with weights at the gym at least 5 times per week, and daily meditation or mindfulness practice. I’m still super dizzy, but it doesn’t control my life like it used to.
One thing I should warn you about, getting over anxiety doesn’t mean your life is suddenly fixed. The next stage after anxiety seems to be the fatigue / depression stage. You are no longer anxious but you get tired / dissociated really easily due to your vestibular system dealing with everything moving. You’ll also not feel as mentally switched on, and you’ll often feel depression for no reason as you begin to accept the dizziness as a permanent part of your life. This is sort of where I’m moving into right now. This stage tends to very gradually go away on a month-by-month basis until eventually you stop noticing the vertigo at all.
Last attack this final stage lasted about 3 years, with the first two stages taking 2 years to get past. This time around I seem to be moving into the third stage after about 5-6 months. I’m hoping this means I can get through the third stage faster as well this time around.
Sorry for the long winded post, just wanted to share the things that helped me. I firmly believe these conditions can be fought, and all the expert vertigo doctors I’ve spoken to have told me the same thing. It can take a LONG time, but this is a condition almost everyone recovers from eventually. In the meantime, you can fight the anxiety and get your life back.