Hi,
I’ve just come across this forum, looking for people who might understand what’s going on for me.
I have had this condition for 4 years- for the first 3 years my GP called it Labyrinthitis, and it would last several weeks and then diminish for a few months before going completely. Then it would come back a year later. Eventually my GP referred me to an ENT consultant who I have been seeing for a year and who has done a number of tests, and he is reasonably happy that I have vestibular migraine. My symptoms are
Dizziness- although it’s more like the world is vibrating actually. No vomiting, or spinning, just a constant wobble.
Aural stimulation is a problem, so I cant stand lots of noise.
Fatigue- oh my god so tired ALL the time
Cognitive impairment- thick headedness and forgetful
So no pain, none of the traditional symptoms associated with migraine. I have no idea what triggers my episodes- I am currently 7 weeks in to my latest spell, and I have no idea where it came from. I also have no idea how long it will last.
I really struggle with day to day life, which is tricky as I have two children. And a job. I have been off sick for 2 weeks and that will extend to 4 probably. I have a husband who is helpful, but I’m still doing loads more than I am actually capable of, every day.
I have noticed that lots of the posts on here are very medical, and I can’t really cope with that. It looks like people have done stacks of their own research, which is amazing, but the thought of having to do that just makes me want to turn off my laptop and hide. I just don’t have the energy left.
So, hi, that’s me. Does it sound familiar? What do you do next???
It does sound like MAV - and impairment to the balance system will cause issues. The tiredness is from your brain working extra hard to keep you balanced…a normal person will do this easily without thinking about it.
The right medication is key to helping you manage these symptoms and live a near normal lifestyle. Try to stay postitive too - anxiety and stress will only make the symptoms even worse. If you read a post further down called a letter from DR Surethiran that will explain what is going on. There are lots of triggers too - i tend not to think about them - only because the Propranalol I was prescribed is doing its job and blocking 80 per cent of the symptoms. I can live with the rest. Find which medication suits you best…let your doctor decide that one. First thing I would find out is where is the imbalance coming from - your ears/neck or back issues/ eyes etc - that will guide your GP into the correct medication.
dr s promotes the migraine diet as a must but I emailed the migraine trust who told me theres sufficient evidence that foodstuffs are not a trigger,damn this things confusing!!
perhaps not,i seriously think I got better because I stopped fearing MAV and did whatever I wanted to do sometimes without thinking lol oh the meds helped tremendously too
I keep coming up with hypotheses. In my latest ‘model’ if you eliminate stress and by that I include the anxiety associated with the condition (easier said than done) that gives you the best chance to go into remission.
Thanks everyone for your thoughts. I read the article about the doctor, who seems to have quite a following! I have to say I’m not convinced whatever I’ve got is triggered by my diet, but its entirely possible my recovery is hindered by it, so I’m cutting out caffeine to start with. See what happens.
I think the hardest thing for me is not knowing what to do about it. Complete rest is impossible, so what else? I’m not getting any advice from my consultant, other than the cutting out of caffeine and alcohol, and the more I read about which medication to try, the more confused I get. In fact, this forum has made me question my diagnosis, as so many people are talking about headaches, and I dont have them.
I rarely get headaches. Don’t forget ‘brain fog’ is probably a migraine symptom, though ‘MAV’ is essentially a collection of symptoms (the list is long) that are very close to those of Menieres disease, save for the significant lack of progressive hearing loss. I’m very sceptical about migraine being the cause, I believe that migraine is a result of whatever is going on. But do get on the meds, they help a lot!
