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 Was told have IIH so why this treatment plan...

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PostSubject: Was told have IIH so why this treatment plan...   Wed Apr 18, 2012 9:41 pm

so on feb 27th i had an episode of just sitting on the couch and my eyes/vison like 'jiggled' in my head for just a brief moment and i had a tingling warming sensation thru my whole body. Everything waas very short lived, but since then i have had a headache EVERY DAY, and i was the type of person who had a headache MAYBE once every other year so this is agony. And then not just headaches, then nausea came, and these sweeping spells of dizziness, and occasional bouts of vision losing focus and i have to consiously think about making my eyes focus. MRI came back normal (which why doenst IIH show up in MRI)finally saw neuro, she thought IIH, so her treatment plan... no spinal tap, no diamox, just went right to topamax 25mg for a week then will go to 50 mg and see what happens. But isnt diamox the drug of choice, isnt the spinal tap the definitive answer to see the increased pressure, im so confused. Why start on topamax, why not even check a LP pressure to make sure this is what we are dealing with. Only been on meds 5 days and i know they need time, but headache still there as always and dizzy spells still come as always, maybe its not IIH
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PostSubject: Re: Was told have IIH so why this treatment plan...   Thu Apr 19, 2012 5:23 pm

Hi Channy1013,

It seems very strange that your Neurologist has chosen to take this form of treatment, Diamox is the first choice of medication for most Neurologist's but both medication's work just as well.

Have you had a eye test? It sounds like your vision problems might be papilledema check out your symptom's here and see if they match up http://emedicine.medscape.com/article/1217204-overview If they do please go and book yourself into seeing a opthamologist.

With people who have IIH the MRI is generally clear although their can be some indication's to IIH like a empty sella turcica and swelling behind the eyes but everyone's MRI is different.

A Lumbar Puncture is the the only way to measure the pressure of the spinal fluid but there can be non-invasive ways of telling if you have high pressure like Papilledema but the only way to know for defiant is a LP.

If you are worried about your treatment try speaking to your Neurologist or if you are in the UK try speaking to PALS http://www.pals.nhs.uk/

Hope you are able to find a treatment plan you are comfortable with hug
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PostSubject: Re: Was told have IIH so why this treatment plan...   Mon Apr 23, 2012 6:08 pm

Could the doctor have opted for Topamax because of any medication allergies you reported having? I seem to remember there is some antibiotic that, if you are allergic to it, there is a higher chance of being allergic to Diamox, too ... though I don't remember exactly which one that is.

I have no idea if that applies in your case ... just kinda thinking out loud about what might have prompted her to choose Topamax over Diamox for you. If it were my doctor, I would definitely call and ask why!

I would also ask for the lumbar puncture. Not only is it the only way to definitely tell what your pressure is, but it may also give you a little temporary relief from your symptoms afterwards. It is normal with IIH for the MRI to come back as normal, but in that case, most neuros will then order the lumbar puncture to check your pressure.

Welcome to our group, and please keep us posted on how you are doing! Smile
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