Pots And Dizziness

[galatea]

I was diagnosed with ‘migraine associated dizziness’ which is dizziness without the migraines. People who have this often had migraines in adolescence even if never again.

Years later you get episodes where head and eye movements, especially side to side provoke extreme dizziness, making even reading and looking sideways really difficult. I always thought it was just POTS, but it turns out it isn’t.

I was referred to a neuro-otology clinic and they’ve given me eye movement exercises which will hopefully cure it. It's a very slow process though!

Just wanted to raise awareness about this in case it’s common for others with POTS, especially since something can be done about it. It's just as debilitating as POTS.

[Guest Hanice]

Thank you for the information! I feel horrible when I turn my head all the way to the right for a few seconds. Is this also what you're saying?

[corina]

Hi Galatea, welcome to the forum!

[dpeeps]

I feel mildly to moderately dizzy all of the time. I also suffer from migraines and that is when the dizziness is at its worst. When I have a migraine, even the slightest movement of my head or eyes to one side cause extreme dizziness and intensified nausea. Most of my migraines start with nausea. Probably abdominal migraine, though I've never pursued a diagnosis on that count....

[galatea]

Hanice, yes when I’m really dizzy even turning my head can be really dizzying. I normally go through worse and better periods, but when I’m bad, I can’t look to the side at people when having a meal for example. I have to get people to sit next to each other to be able to talk looking at them so as not to turn my head.

They’ve now told me that restricting head movements is the worst thing you can do and that you have to force yourself to look around. At first it feels terrible but it’s really important to do this.

If you sort out the problem while you’re young the brain can somehow ‘re-wire’, but if you leave it for too long it’s harder to cure.

If you think you might have this I would really recommend getting a referral so that they can give you all the eye exercises.

I hadn’t been able to read a book in over a year, which I always thought was due to mental fatigue caused by POTS, now I realise that it’s been partly a dizziness problem even though I wasn’t always consciously dizzy while trying to read. I think it can also cause quite a lot of mental tiredness and in my case a lot of nausea.

Corina, thank you! This is the first time I use a forum

[Guest Hanice]

I remember that in the beginning of my pots, I couldbt move my eyes side to side without feeling like crap. Now I can but when I turn my head omg do I feel horrid! Where do you go for this? An ophthalmologist?

[galatea]

I saw a neuro-otologist. They did all sorts of tests to rule out other conditions.

I’m going to start doing the diet I found on this website although I’ll have to come up with some ideas about what to eat instead.

http://balancemd.net/uploads/Migraine-Related_Dizziness.pdf

[galatea]

I should have said earlier that it’s more commonly called Migraine Associated Vertigo (MAV) or Vestibular Migraine.

Here’s a useful overview: http://emedicine.medscape.com/article/884136-overview#a1