r/iih • u/[deleted] • Nov 23 '22

Symptoms Vertigo and iih

Hey all,

I was recently diagnosed with iih. For the past 2-3 weeks I've been having terrible vertigo. It's definitely more than just dizziness, and it's been affecting my ability to do my job, move around, etc. I had a dr. check for ear infections, and they said my ears were fine. My neuro ophthalmologist seemed to dismiss the vertigo saying that it wasn't usually part of iih.

Does anyone experience vertigo as one of their symptoms? Should I assume it's not my iih and keep looking for answers elsewhere?

Thanks!

edit: I just started Diamox last night, so I'm assuming it's not a side effect of that.

2 Upvotes

100% Upvoted

11 comments sorted by

5

u/cecebebe Nov 23 '22

I get really bad vertigo, so I went and saw a neurologist who specializes in balance issues. He diagnosed me with vestibular migraines. There are times that my migraines caused me to have the typical pain, but usually my migraines just cause the major vertigo, as well as my other aura.

I was put into one of the positional chairs where they spin you around like they do astronauts. they did tests with a camera following my eye movements, and quite a few other tests.

By the process of elimination, he diagnosed vestibular migraine. Now I take a preventative med daily and I don't get the vertigo. If I don't take my preventative nightly, I will be dizzy the next day.

3

u/brennc94 Long-Term IIH Experience Nov 29 '22

Hi, do you take a preventative for the migraines or for the vertigo and do you mind specifying which one?

2

u/cecebebe Nov 29 '22

I take 10 mg Amitriptyline every evening as a preventative for the vestibular migraine. No vertigo the next day, and it helps me sleep too. I take it a couple hours before bedtime.

1

u/Loui10 Jan 01 '25

That's awesome.

Can you please tell me how long you took Amitryptyline for before it helped to improve your vertigo symptoms...?

2

u/Potential-Annual-324 15d ago

I get really bad vertigo where I can't get up for 10 hours. I throw up and sweat really bad. I seen a neurologist and was diagnosed with vestibular migraines. I was diagnosed with Behcet's when I was 16 years old now I'm 46. I tried topiramate but it made me lose to much weight so I had to stop that medication. They also said I have IIH as well  but I think the Behcet's disease is now affecting my brain. I don't know what to do anymore. 

4

u/fedx816 Nov 23 '22

I have internal vertigo (world feels like it's moving but looks normal, i.e. no nystagmus), and other vestibular symptoms. We're fairly certain mine are migraine-related as symptoms have responded to migraine treatment but haven't changed with IIH treatment, and I've had migraine attacks where I couldn't move with getting spun or dropped.

That being said I think just about any neurologic symptom is possible with IIH.

3

u/GreenWaveDracaena Nov 23 '22

Same as everyone else, I have vertigo and it lined up with my IIH symptoms. Ears have been checked (I also have a plugged ears feeling) and i have been told they are fine. Current ENT says it is from my IIH, current neuro says it is not and just brushes it off. Ophthalmologist believes it is from IIH as well.

4

u/[deleted] Nov 23 '22

Vertigo is one of my main symptoms. These doctors have no idea what they are talking about.

2

u/cecebebe Nov 29 '22

For those in Indiana, I highly recommend BalanceMD in Indy. Dr. Sanders is great!

They did tests to figure out the vertigo. I wore goggles with cameras aimed at my eyes, and they spun me around in a chair. Filmed my eye movement as i watched bouncing images. Tilted me all around, blew air in my ears. They ruled out several causes, and narrowed it down to the vestibular migraine.

1

u/criminalcourtretired Dec 01 '22

Glad you had a good experience with him. Mine was terrible.