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 I think I am losing my mind.........

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Kristi

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PostSubject: I think I am losing my mind.........   Mon Mar 12, 2018 10:12 pm

Hello!  I am 38 yrs old and recently started presenting with visual disturbances including going blind for a few seconds, colorful swirls and flashes.  Since then I have had excruciating headaches and pressure.  I have been to my GP, optometrist, hematologist, retinal specialist and neurologist without a clear diagnosis.  They suspect it is either silent migraines or IIH.  I am supposed to see an Neuro-ophthalmologist in April.  The only doctor that seems worried is the retinal specialist.  He really wants me to get a lumbar puncture done, but I am on blood thinner and the neurologist won't touch me because of it.  I am struggling so much!  It is effecting every part of my life!  I have been to the ER and given morphine and dilaudid which finally broke through the pain, but obviously I can't be on those for any length of time.  Has anyone else had to deal with IIH and a blood clotting condition?
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Sophiasmom
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PostSubject: Re: I think I am losing my mind.........   Tue Mar 13, 2018 2:09 am

there are some thrombophilias which are associated with IIH.  why are you on the blood thinners?  Lupus, antiphospholipid syndrome, and I think some others are associated with IIH.

I would find a neuroradiologist who would be willing to work with your hematologist on this issue.  maybe you can go off your blood thinners for a few days for the LP.  your neurologist may simply not want to deal with the issue.  you definitely want to be at a major university center for all of this.  community docs may just not be able to handle the complexity of your case.

you do sound like you have IIH.  maybe the neuro-ophthalmologist will be able to see it in your eyes, while the other docs have not been able to see it.  this has happened to many other people.  my eyes have always been OK, and for a long time we thought I had silent migraine.  now I am suspicious that this clinical entity does not even exist, and that IIHWOP is missed in the great majority of cases because no one wants to do a spinal tap.
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Kristi

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PostSubject: Re: I think I am losing my mind.........   Tue Mar 13, 2018 5:17 pm

Thank you for replying!  I have Factor II clotting disorder.  I have a mutation that makes my blood clot too quickly.  I was on warfarin for 9 years and just went on Eliquis in October of 2017.  I am doctoring at a community hospital currently.  The neuro-ophthalmologist is located in a metropolitan city at a well known teaching hospital.  I am trying to get bumped up so I can see him sooner.
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Sophiasmom
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PostSubject: Re: I think I am losing my mind.........   Thu Mar 15, 2018 10:38 pm

I would try to see the hematologist at that university hospital and ask them to talk to the neuro-radiologist there.  you should not have your LP done by anyone else.  it should be done under fluoroscopy.  the neuro-rad at that hospital has probably dealt with similar issues before.  your local neuro.... maybe not.
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Kristi

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PostSubject: Re: I think I am losing my mind.........   Wed Mar 28, 2018 3:56 pm

I saw a neuro-ophthalmologist and since I have no papilladema she says I do not have IIH that it must be migraines.
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Sophiasmom
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PostSubject: Re: I think I am losing my mind.........   Wed Mar 28, 2018 5:09 pm

oh what a crock of .........

time to go on Pubmed and print out some references on IIHWOP.  it is possible to have IIH without papilledema.  I would get a second opinion from a different neuro-ophth because I have seen different ones find nothing while others see something to indicate damage to the retina.  migraines can present identical to IIH and the only way to determine the difference is the LP.
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