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AJ1985

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PostSubject: New here introduction    Wed Apr 04, 2018 9:17 pm

Hi everyone.
My name is Amanda im 33 from the uk im 5ft1 & weigh 12st was 13, id say my height is to short for my weight doctor says overweight.
I dont know where to start & i dont want to seem like im rambling so here goes heres my story so far.
In aug 2016 i had a fall thought nothing of it then but at the time that was when the Tinnitus started i always had headaches & the occasional migraine a pains in my back a couple of trips to the doctors they pretty much told me to get on with it sent me away with painkillers & so i just got on with it.
March 2017 i went to a routine opticians appointment i thought i may need stronger glasses there they did more examinations than i had before & told me i would have to go see a ophthalmologist for a more detailed look still knowing no different so my next appointment came & there i was told i had swelling on the right optic nerve well by this time i didnt know what to think
As time as gone on i now feel alot of pressure in my head & at the back of my eyes after maybe 3 vision field tests a mri & a eye scans iv now been told i have mild iih with papilledema im now waiting for a appointment to have a lp.
My symptoms are.
Pulsatile tinnitus
Pressure headaches
Aching shoulders & neck
Memory loss
Sickness
Balance problems.
Thanks for reading.
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Sophiasmom
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PostSubject: Re: New here introduction    Sun Apr 08, 2018 7:22 pm

hi Amanda;
welcome to the group, although sorry for your diagnosis.  let us know what the results of your LP are.  I hope that the treatment will help you with your symptoms.  if you have any questions, just ask and we will try to help.
Deb
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medmisfit
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PostSubject: Re: New here introduction    Tue Apr 10, 2018 3:59 pm

Hi Amanda, welcome to the forum! This unfortunately sounds fairly typical, but the LP should confirm IIH diagnosis. Regardless of the opening pressure, your symptoms should improve once CSF is removed. It only takes a day or so to build again, but if it's IIH they should start Diamox or something to help keep fluid levels down.

Please keep us posted!

Take care,
Julie
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AJ1985

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PostSubject: Re: New here introduction    Tue Apr 10, 2018 5:28 pm

Thank you for your kind welcome.
How long does it usually take to prescribe meds do they do it on the same day? & how long do they monitor you whilst on them? I understand everyone is different on meds.
Thanks
Amanda
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Sophiasmom
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PostSubject: Re: New here introduction    Wed Apr 11, 2018 5:27 am

hopefully they would prescribe the same day if your ICP is elevated, but it's hard to speak for any individual doc.  in terms of the monitoring, you should have follow up with the doc who wrote the Rx, definitely the eye doc needs to see if there is improvement or not.  you should have long term follow up even if you seem to go into remission.  you should always be monitored closely for relapse.
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AJ1985

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PostSubject: Re: New here introduction    Wed Apr 11, 2018 6:13 am

Thank you im just trying to get as much info & feedback on this thing we have as i can.
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