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 Hello from a new member

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taffyjo21

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PostSubject: Hello from a new member   Wed Apr 25, 2018 5:17 pm

He everyone, my name is Lil and I live in the Las Vegas, NV area.  I was diagnosed with BIH about a year ago, after six months of being shunted between doctor's offices/specialists. I have papilledema, pressure headaches, memory issues and of course like most of you can't bend my head down for yoga or cleaning or daily tasks without the intense pressure. Can someone please post what meds their neurologists have them on for control of head pain?  I have been through the gamut on meds and wonder what everyone else has been prescribed.  Frustrating to try communicating with a neurologist who is convinced the diagnosis is "chronic migraine" while ignoring my other symptoms!   Does anyone else have a meningioma as well, like I do?
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medmisfit
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PostSubject: Re: Hello from a new member   Wed Apr 25, 2018 5:51 pm

Hi Lil, welcome to the forum! I'm sorry to hear that you're struggling with treatments. At one point they made me try every migraine treatment imaginable, including Botox. It was horrible! There is a section on medications for IIH (http://www.ihaveiih.com/f28-medication-for-iih-treatment), so you can check that out. The Intracranial Hypertension Research Foundation may also have some information, so you can check their website at www.irhfoundation.org . They have a contact page and have been pretty responsive to other members. Unfortunately, migraines and other headaches can be secondary to IIH, so it's difficult to convince them.

It's my understanding that meningioma is a non-cancerous tumor that can cause similar symptoms. I thought they usually looked for meningioma when IIH treatments aren't working, so wonder if they're actually treating your symptoms as related to that instead of BIH. IHRF may have more information, but please let us know what you find!

Take care,
Julie
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taffyjo21

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PostSubject: Re: Hello from a new member   Fri Apr 27, 2018 12:35 am

Thank you, Julie.  I'm still trying to figure out all the tabs on this site and haven't found one specifically dedicated to meds for IIH but I will dig around some more.  Be well.   Lil
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Sophiasmom
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PostSubject: Re: Hello from a new member   Fri Apr 27, 2018 5:35 am

hi Lil;
I used to live in Las Vegas, too bad we didn't know each other then.  my neurologist there was Dr. Veerappan.  I have IIHWOP and I think he would listen to you and not try to tell you it is migraine.  also ask him for a sleep study and he won't give you a hard time.  I was an unusual patient for him so he has seen that.
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medmisfit
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PostSubject: Re: Hello from a new member   Fri Apr 27, 2018 8:34 pm

Lil, I included the link to medication info in my previous post. PM me if that link doesn't work and I'll help you find the info.
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