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Idiopathic intracranial hypertension or vestibular migraines migraines

Anan ENT said that I had symptoms of idiopathic inter-cranial hypertension I was having severe dizziness and vertigo with drop attacks and I was very in balanced my head would pound when I would bend over but I had no visual disturbances. And dizziness seem to be induced when I would turn my head that would take over and turn into very severe vertigo that would last anywhere from 10 minutes to 12 hours it'll happen during pregnancy and only got worse as I got postpartum it lasted for about 3 months until they got me on Topamax 200 mg. My neurologist believes that they are just vestibular migraines. But they have never done on lumbar puncture to see what my pressures are. I don't have the classic pounding headache it's more of a dull pressure that I have come to realize postpartum I have at least three to five times a week sometimes more sometimes less that he has said are tension headaches. My question is has anybody else had any problems with this during pregnancy and deathly scared because this was just my first to have another baby and go through the same problems because doctors can't really answer that question. I really wanted a big family but this kind of puts a wrench in my plans. What are others experiences with both idiopathic intracranial hypertension and vestibular migraines? I'm scared to get off the Topamax and have the vestibular migraines reappear if that's all it is what Topamax causes birth defects in babies I just need somebody else's wisdom and experience because I never had to deal with any of this until after I had my first child and pregnancy.

  1. Hi kel2778,

    Thank you for sharing your story with us. I have IIH and occasionally had vestibular issues, but neither were issues when I was pregnant. I'm sure others will be along shortly to share their experiences with you.

    In the meantime, I would encourage you to speak with your doctor about having a lumbar puncture to diagnose IIH. Dizziness/vertigo/balance problems can accompany IIH - it would be possible to have both IIH and vestibular migraine, but it would be good to rule them in or out, then you can get the correct treatments.

    Here is our information on both; https://migraine.com/?s=vestibular+&submit=Go and https://migraine.com/?s=IIH&submit=Go.

    I hope this helps!
    Nancy

    1. Back in mid October i was driving work. I suddenly felt 'off-kilter. I started praying that I would make it to the hospital I work at. I made it and parked but had to call my department for someone to come get me. My arms and legs would not work, I was dizzy and nauseated. My eyes would not focus and I had a near syncopal episode. My coworkers came with a wheelchair and took me to the ER.

      Long story short, I was admitted for observation because they thought I was having a brainstem stroke....scary thought. Turns out they say it wasnt showing that on the MRI and CTscan . They said it was a vestibular migraine! Never heard of it. I've had migraines since I started going through the change, but never this.

      My PCP , a migraine sufferer himself, put me on Lamictal. I of course take Imitrex as a rescue drug. I also get massages every two weeks. I actively try to avoid triggers.

      Since this one episode, my migraines have increased in frequency and duration.

      I need guidance beyond what I am already doing.

      Thanks in advance.☺

  2. Hi straxt,

    That certainly sounds like a scary episode - I'm sorry you experienced that. Avoiding the triggers we can is always a good idea, and I'm happy to hear you are doing that. Avoiding triggers can make a difference in migraine attack frequency and severity. On the other hand, we can avoid our triggers, get enough sleep, stay hydrated and make healthy life choices and still get a migraine attack 🙁!!

    I'm going to provide you with our link on intracranial hypertension seeing as you had it in your post, which I hope help; https://migraine.com/?s=intracranial+hyptertension.

    Keep me posted on how you are feeling,
    Nancy

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