Purplepenguin 21/03/15
Last reply 3 years ago
Vertigo and eyes

Hi, just wondering if anyone has experienced vertigo? And it’s made worse by reading? Moving eyes? And comes and goes?

I’ve had bad vertigo for 4 weeks (could be inner ear thing and/or MS related…docs can’t decide!) It’s better than it was, but keeps coming back and seems to often be triggered not only by moving my head, but sometimes my eyes and sometimes when I’m completely still! Any thoughts/ideas?

Many thanks.

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3 years ago

@Purplepenguin , here’s some detail here about this unwelcome MS symptom:-


But, it’s always recommended to consult Doctors, rather than blame everything on our MS. We can get normal problems too. 😉

3 years ago

Thanks for the info. Yes, I’ve seen my gp and neurologist and they can’t decide! Think it definitely started at an inner ear thing (BPPV) but think it could have triggered an MS response now (especially as I’m having a relapse at the moment too.
Such fun!

3 years ago

I had this for 8 weeks before the MS Nurse would see me! You’re right in that it can be difficult to work out why it’s happening. I saw my GP twice and was on some ‘lovely’ medication. Incredibly strange when you’re doing nothing and your head starts spinning. I gave up reading. Instead I listened to radio podcasts and audio books. When I did get some steroids in hospital the vertigo disappeared after a week. x

3 years ago

Thanks for your reply. It does seem that these vertigo symptoms aren’t always rated very highly by the medical professionals! As I said to someone the other day, try being spun really fast on a roundabout and then get off and try and function!
I don’t seem to be getting very far with the doctors at the moment, so will just have to ride this relapse out I guess! Thanks again.

3 years ago

Hello, I’m new to this because I’ve just been diagnosed. Even though I was presenting some weird numbness/paresthesia in my lower limbs, my neurologist tracked down my first episodes to more than 10 years ago and recurrent vertigo episodes. She had no doubt about the correlation. (Then again, two weeks before I had just been treated as “anxious/hypochondriac” by some other neurologist who even made fun of my vertigo episodes in the discharge letter…). Vertigo is really annoying and can be tricky so Take care and be careful not to fall. Hope you get better asap!

Vertigo is horrible…..feels like you’re dying and it’s never going to go away. And yes, you’re right g.p’s and neuros don’t take it seriously…..so annoying!!

When I have had it before I get nystagmus (spelling?!) where your eyes wonder from side to side. So yes can affect your eyes. Try and take it easy and ride out the episode!! It does however, go away eventually!!

3 years ago

Ergh, @Purplepenguin, you poor thing. I had a nasty bout of labyrinthitis a few years ago and it was hideous. My ms nurse recommended cinnarizine, an antihistimine, which was a godsend- could finally keep something down after days of spinning. It is sold over the counter as stugeron, a travel sickness remedy, so might be worth a try if you’re still struggling with dizziness? Hope it eases soon jane xx

3 years ago

Hi @Purplepenguin.
My doctor treated me for labyrinthitis which was horrendous. Spent 4 days not being able to move my head from side to side when laying flat. 1 year on its still hovering and I have to be aware of it. At no time was it mentioned that there was a connection with M.S (?)
Good luck, hope you feel better.

3 years ago

I had Vertigo as part of my first serious relapse in January of this year (I had only been diagnosed in Aug 2014). It was incredibly distressing and I was bed bound for 3 weeks. I had double vision, which made the vertigo worse and I would vomit at very little movement. I could not walk around the house or go the bathroom without my fiancé guiding me.
After 3 weeks of constant contact – my MS nurse talked to my neuro and I was given a three day steroid Solumedrol IV dose at home.
Unbeknownst to me (certain issues couldn’t be relayed over the phone) my last MRI, which I had in December 2014, showed active MS around the cerebellum region of my brain which apparently correlates with my vertigo symptoms.
I wasn’t on treatment but was planning to. But now since this relapse my neuro wants me to go on Tysabri which I am a bit scared about.
Discussing my symptoms leading up to this relapse I remember at the end of last year that whenever I walked around I felt almost like my brain wasn’t keeping up with what my eyes where seeing – a weird way to describe it I know! but this would often make me feel off balance.
Then in Jan I developed the feeling of half a numb tongue and mouth. Everything tasted metallic. After that the serious vertigo side of the relapse occurred.
Since the IV steroids my vision improved quite quickly and I can walk unaided now. However I still feel incredibly off balance and not too steady on my feet. It’s been a long few months but I can only hope things will get better from here, and for you too x

3 years ago

Thanks everyone for your replies. Sorry I haven’t worked out how to tag you individually yet! Sorry you’ve all experienced similar stuff, but encouraging to know it generally improves!
Yes, I had nystagmus with it at the beginning…that was horrendous. Not had it before. My neuro wouldn’t give me steroids as he said I was too far into the relapse for it to make much difference!?

Anyway, touching wood and fingers crossed I’ve had a better couple of days and managed to do a bit more (though fatigue still an issue) but hey ho, I’ll take a bit of improvement 😉

Thanks again guys.

3 years ago

Glad you’re feeling better. I’ve had nystagmus and its horrid!

3 years ago

I would describe as imagine your a hamster in a hamster ball and someone kicks it
It is a horrible sensation.

3 years ago

My first episode and what led to my eventual diagnosis was a combination of vertigo and wonky vision; vertigo, blurred vision, double vision and lost peripheral vision for weeks. A month long of interesting experiences, and not knowing how to articulate what was going on because I was so confused.

3 years ago

Oh sorry, I don’t think there was anything specific I was doing to trigger it, but rather it was internal synapses and mixed messages.

3 years ago

I have also had vertigo that came and went over a few weeks. Often worse in the evenings. I would come home from work and crawl up the stairs straight to bed, turning over in bed was horrendous. At this point MS was not in question so I was prescribed some travel sickness medication, which I actually never tried as it faded away. I kept a diary so I could explain to my dr my symptoms and I noticed that it got worse when I was hungry, and often a strong coffee or food would make it go….it would come back with avengence though. Not sure If there was a link or if it was just conincidence. When I would walk it was like I was on a boat or vering off to the left all the time, obviously this caused balance issues. I did ask my neuro if certain symptoms would repeat themselves so I could know what to expect but she couldn’t answer that….

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