The Vestibular Migraine Community
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Undiagnosed And Desperate, But Prescribed 100mg Topamax?


#1

Hi! I found this site earlier today, and I FINALLY feel like I’ve found answers and people that I can relate to!! I’m so excited!

I started experiencing symptoms exactly in February after I fainted (randomly) hit my head, and got a concussion. For the past 5 months, I’ve experienced:
-dizziness
-light sensitivity (ESPECIALLY florescents)
-head pressure
-numbness on one side of my body
-difficulty concentrating
-anxiousness
-depression

My symptoms are 24/7. I can no longer drive, I can’t exercise, and I can barely work (my job can be physically demanding). I want my life back. I’ve seen 5 doctors, only one of which was a neurologist. She shoved me aside after a normal EEG, saying she didn’t want to treat me for migraines, but I begged her for migraine medication. She prescribed me Topamax, starting with 25mg and eventually getting up to 100mg, which seems like a lot to me. I am a very small person and only weigh 100 lbs. Should I see another neurologist? Is there anything else I can do besides stay on course?

Thanks
-Jill


#2

Hey Jill poor you!! Welcome to the board.

Whilst there are a few on here with MAV post trauma (including me), I’m not certain how similar our conditions are.

Although we can’t diagnose, certainly sounds like “post-concussion syndrome”. I will admit I don’t know how much that presents like ‘MAV’ and how much it responds to the MAV protocol.

Yes I would have thought you’d best see a neurologist.

Do you have any hearing impact? Tinnitus, ear pressure, odd ear symptoms?

James


#3

Hi James,

Thanks for replying!

I don’t have any hearing impact, and I’ve seen an ENT to double check. His suspicion was silent migraines as well and said to go back to the neurologist. I think I just saw a neurologist that wasn’t particularly interested in my case, and I need to see a different one.

I’ll also do some research into post concussion syndrome!

Best,
Jill


#4

Yes, please do.

At the very least you need to explore the treatment options with the help of a professional. It wouldn’t surprise me if they use the same meds as MAV tbh.

You may hopefully find things self-resolve over time but the medication may help with symptoms.

Given I’ve declared this site to cover any chronic dizziness with migraines, perhaps I should create a Concussion Category …

btw, my oto-neuro described my injury to be like ‘concussion of the inner ear’.


#5

Hi

Shd see another specialist if I were you. The neuro you saw sounds about as useful as the proverbial chocolate teapot! I could accept her comment if she’d given valid reasons for them. Maybe she didn’t want to think she might be prescribing unnecessary drugs because she thinks it may be all part of the concussion syndrome. Her comment is not at all helpful without explanation. Yr given list of symptoms are very MAV like. Running another very recent thread I’ve just found out there must be many similarities between the two conditions. very hard to separate maybe. Could be the concussion is causing the MAV or MAV like symptoms. Assume you came here because the concussion people couldn’t give you a more definite answer. Otherwise go back to them. Leave no stone unturned. Trouble with MAV is nothing’s very definite, it’s a diagnosis of exclusion. I don’t know hardly anything about concussion treatment but suspect it’s easier to diagnose than MAV if only because it is the direct result of an incident/trauma, doesn’t just creep up on you.

With anything medics don’t quickly identify/resolve the sufferer has to be their own advocate. Fortunately these days with the internet there’s plenty of info out there. You’ll probably be able to add ‘headache’ to the list of symptoms shortly through all the time spent researching but sure you’ll get there hopefully before too long. Good luck!


#6

Thanks for replying!

My neuro did mention that she didn’t think I have post concussion. (However, she is awful, so how much can we trust her?) She didn’t say why, though. My suspicion is that it’s becauze my head never hurts and I don’t experience insomnia.

Regardless, it could still be post concussion without a headache, or my concussion could have caused MAV. You’re right about advocating for myself though! Reading through everyone’s stories has already inspired me to not lose help, and the Topamax has been helping!