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Was Undiagnosed & Desperate, Prescribed 100mg Topamax, Now diagnosed w/ 3PD!

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:
-light sensitivity (ESPECIALLY florescents)
-head pressure
-numbness on one side of my body
-difficulty concentrating

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?


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?


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!


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’.


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!

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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!


After seeing multiple neurologists, I finally found one AMAZING doctor that specializes in vestibular disorders, and he diagnosed me with 3PD, which is Persistent Postural-Perceptual Dizziness. It is usually triggered by a sudden inner ear event such as a concussion. I was almost misdiagnosed with MAV, so if you have symptoms similar to mine, please look into this because treatment is very different! Instead of being given migraine or seizure medication, I have to do physical therapy and it’s already made a difference.

I copied and pasted the following symptoms from this link: Persistent Postural-Perceptual Dizziness | Vestibular Disorders Association
" * The primary symptoms of PPPD are persistent sensations of rocking or swaying unsteadiness and/or dizziness without vertigo lasting 3 months or more;

  • Symptoms are present on more days than not (at least 15 of every 30 days); most patients have daily symptoms.
  • Symptoms are typically worse with:
  1. Upright posture (standing or sitting upright)
  2. Head or body motion
  3. Exposure to complex or motion-rich environments
  • PPPD typically starts shortly after an event that causes acute vertigo, unsteadiness, dizziness, or disruption of balance such as:
  1. A peripheral or central vestibular disorder (e.g., BPPV, vestibular neuritis, Meniere’s disease, stroke)
  2. Vestibular migraine
  3. Panic attacks with dizziness
  4. Mild traumatic brain injury (concussion or whiplash)
  5. Dysautonomia (disease of the autonomic nervous system)"

NOTE: the criteria for this diagnosis is at least 3 months of dizziness, but if you haven’t had it for 3 months, they can still diagnose you. It won’t be called 3PD, it will be called something else (to my understanding).

You will probably have to go through lots of tests to be sure, MRIs, inner ear tests, heart monitors, but it’s better to be safe than sorry. Just like MAV, this is a diagnosis of exclusion.

Good luck everyone!

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great to hear, what type of physical therapy are you doing?

Just a few balance exercises every day to get my inner ear working as good as my eyes like walking small steps with my eyes closed, walking backwards, and a few other things like that but it all has to be done a certain way.

Hi Jill
I noticed that Vestibular Migraine is listed aa a trigger resulting in PPPD so is it posible to have BOTH going on at the same time?
Jo x

Hi Jo,

I saw that as well, and although I’m not a doctor, I believe you can. A few articles I’ve read stated that 3PD can coexist with other vestibular conditions, which is part of what makes it so tricky!


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This highlights how important it is to find the right doctor and a diagnosis you can believe in.

Congrats Jill and best of luck with the treatment!

Keep us updated!

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It says SSRI’s are used for PPPD…have you used any of these to help with your diagnosis or are you med free? Great that you are responding to the excercises…good luck🤞
Jo x

Hello @gandkr , I have been suffering from PPPD for some years and in treatment with SSRIs. But I’m finding it hard to find a doctor who knows the rehabilitation applied to the PPPD ( in spain) . Could you tell me in detail what are the exercises that have sent you? They would be very helpful. Thank you . if you want I send you my email.

This forum contains a private messaging system so you can exchange private information without disclosing email addresses. Look out for the little envelope symbol which will appear in the middle of three symbols when you press your own avatar (your little coloured round disc with the initial of your username on). Helen

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You might find this website of use. Its a draft thesis actually but includes alot of detail about PPPD treatment. (dont put www before this!). Page 21 onwards.

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Even though the two conditions seem to have similar symptoms and blurr into each other it seems a different approach to treatment is needed. I had already noted that having read Matthew Whalley paper.