Confused- and spinning around

Hi Guys,

So for some reason, things seem to have entered a different pattern for me, and after a 2 or 3 week high of some really good days (1 in fact totally amazing symptom free day)… I have hit rock bottom and am now struggling immensley and am experiencing symptoms as bad as when I was signed off sick for 6 months back in May. I am needless to say, scared shi*less that this bad lull is here to stay and I wondered if anyone had advice. I also have an update after my calorics and Im confused as to what the result actually means.

I’ve not suffered through the whole MAV thing with my hormones affecting things, as I wasn’t having a menstraul cycle due to the contraception I was on. For some reason, out of nowhere, mother nature decided to remind me I could have babies and the time of the month presented itself, twice in 2 weeks. Dr S took this as a sign that something wasn’t quite right somewhere and has told me to stop this contraception- so I’m having it removed as of next week. (It’s an implant under the skin).

Anyway, I thought these newly awakened hormones were making me dizzy, but thought seeing as the period had gone away, the dizzyness would too. No chance. For the last week, every day at about 1pm I’d become REALLY dizzy. And now, I’m just stuck with this terrible swimmy head, and the worst dizzyness I’ve had since this whole thing kicked off, which is lasting all day and making it difficult to walk. I’m also finding it hard to drive- when I’m stationery, it feels like I’m moving. I’m also more fatigued than ever. Yesterday and today my eyes are blurry and feel constantly like I’m about to have an eye aura. What’s happening? Am I stuck like this now?

Could the calorics and all the balance tests that I had last Friday, irritated something?? Or does it not work like that?

Dr S said that he found a vestibular loss in my right inner ear. My confusion is- was this caused by MAV? Does this mean I have 2 problems now- Mav AND a vestibular balance problem?? I’m so confused. Maybe the confusion is causing anxiety itself. Also, on another subejct, I asked him to explain what would have caused the blood vessel spasm in the brain stem, and he said it was very complicated and too complex and length to explain…

Because I had experienced some good days, he hasn’t sent me for VRT. He recommended wii fit and table tennis. But this week it’s been hell- the worst week ever. And I feel so lost and like a lost cause that can’t be helped since experiencing this dreadful week- WILL I STAY LIKE THIS NOW??? I don’t think I can bloody go on like this. I just can’t.

I’m terribly dizzy, I’m terribly confused. Please can anyone shed any light on anything!?

Lots of love from confused of London :frowning: xx

I am so sorry to hear that you are not doing well. Reading some of your posts has given me such hope as I am only a little over 2 months into this. I can tell you, that I wasn’t good for about a week after my vestibular testing. But it doesn’t seem to last that long for most people.

It sounds like something set off your MAV - something made you go above your migraine threshold and that something could be stress, hormones, food triggers, anxiety, weather - lots of possibilities. Certainly the hormones could be doing something since your body is trying to adjust from the birth control implant. It could be a combination of things.

A lot of people with MAV have some sort of vestibular loss so I don’t think that’s causing this. Perhaps you had a condition like vestibular neuritis at first that later progressed to MAV? And keep in mind that those tests are not super accurate.

All I can tell you is that you got better before and you will again and hopefully this flare up will not last long!


Tried Nori - bad side effects
Trying magnesium and Vit B and if not successful then on to Verapamil it is!

Can you take some benzos to calm your brain down? It seems something has set you off…it would probably be hard to pin point, and many times it could be viral…things you can’t see or really understand. I also know, for me, that when things by bad, I instantly worry I’m going back to “that place”…and the anxiety makes it worse. I worry that my meds have stopped and I will be broken again…this thinking only make things worse.
Don’t think this is your new normal…as you can see for yourelf, and other people’s stories, this thing waxes and wanes, and you have to ride the waves. I personally think the boobie board “klonopin” helps me ride the bad ones. :slight_smile:
Hang tough…