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 New Here: Introduction & Questions

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andyro

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PostSubject: New Here: Introduction & Questions   Mon Mar 05, 2018 1:35 pm

Hi everyone - So grateful for this forum; I've been anxiously reading as much as I can to learn about this condition and the treatment options. 

Introduction: 38 year old mom of 2, overweight, was on birth control, tretinoin. Nearly a year ago, I started having vision problems. Flashing lights, 2 blurry, moving, bilateral stationary spots just off central vision that would not go away. Started having classic migraines with aura and the kaleidoscope vision in one eye. This went on for about 6 months. I saw multiple eye drs, a neuro, a retinal specialist. Nobody was concerned or had an answer. In Nov, I had a bout of vertigo (first ever) and then weird ear problems. Muffled sounds, blocked ears. I'd never had any ear problems either. December - I start having pulsatile tinnitus in right ear. Did an MRI and MRA w and wo contrast. Nothing found. Did a steroid pac prescribed by ENT. Coming off that, my tinnitus went crazy and moved to left ear also and started flaring up with exertion, even going to the bathroom. Daily headaches, some weird temple headaches that would get so bad I'd debate going to ER. My vision is also steadily developing new terrifying symptoms at this point - blue strobe lights, seconds where everything is one color (red or green), blurry vision often (I had to get glasses again after having lasik) and static when standing up. And those pesky spots that never went away. I'm back at the GP getting every blood test known to man and when I leave, see that my GP writes "anxiety with somatosis" on the diagnosis on my discharge summary and I feel like I am losing my mind and don't pursue the vision for a while. But it gets so bad that I see another ophthalmologist at Duke Eye and specifically ask him about IIH. He says I fit the "profile" but have no paps. I beg him to do an OCT then bc something is very wrong with my vision. On OCT, my optic nerves are elevated and "cystic" His eyes go wide and he refers me to Neuro-Opthamology. Neuro doc says you have IIH and paps, grade 1 with edema. That's what he thinks the "cysts" are. He also says the paps are visible on dilated exam but he is my 5th eye dr. at this point?

Questions:

- I am not yet diagnosed and have my lumbar puncture in 4 days. However, when I saw neuro-opthamologist last week he wanted me to start Diamox right away, ER 500 mg, 2x a day. I asked him if I should start before I have a confirmed diagnosis and he said yes because I have tons of vision issues and he's "pretty sure" I have IIH. But if I start the med now won't it mess with my opening pressure and either have it lower or normal if it was high? My vision and tinnitus are off the freaking charts and I'm scared to wait when he told me to start but I also don't want to have a lumbar puncture for no reason or miss a diagnosis bc I've been waiting for an answer for so long. 

- Has anyone had vision issues first before paps? I'm still worried it's not IIH or only IIH with my eyes. Has anyone had visual problems for a year and actually had them resolve with treatment?

Thanks for reading!!
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medmisfit
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PostSubject: Re: New Here: Introduction & Questions   Mon Mar 05, 2018 6:14 pm

Hi, welcome to the forum! It sounds like you've had quite a long and frustrating experience, but I'm sorry to say that's not unusual for people with IIH. They tend to lean toward anxiety, depression, and weight before looking into other causes, so I'm glad you finally found a specialist that hears you and is trying to take care of it.

I would assume that he prescribed the Diamox to help relieve pressure on your optic nerves and try to save your vision. If you're suffering from symptoms, you should still have some relief once they remove spinal fluid. Your pressure may not be as high, but it's not going to completely take care of it within a few days. They will confirm your IIH diagnosis, if symptoms improve once CSF has been removed. I usually feel a lot better for a day or so, after a spinal tap.

And, yes, many people with IIH don't have or never have had papilledema. Contrary to popular belief, it is not always present in people with IIH. I was diagnosed a long time ago so I can't really remember how long I had symptoms, but my visual issues did resolve initially. I had some problems a few years ago and went several months without treatment, so have some permanent loss from that episode. It really depends on the type of problems you have and how you respond to treatment. Their primary goal is to save your vision, so hopefully the Diamox and spinal tap will help.

Good luck with the spinal tap, and please keep us posted!

Take care,
Julie
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Sophiasmom
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PostSubject: Re: New Here: Introduction & Questions   Wed Mar 07, 2018 3:56 am

if it were me, I would wait on the Diamox to make sure the pressure they get at LP is as accurate as possible.  you have been suffering with the eye stuff for so long, and you are grade 1, it's hard to imagine that 4 more days is going to make a huge difference.  dropping your ICP rapidly at LP will help, then starting the Diamox right then should help maintain the drop.  it's hard to argue with the neuro-ophthalmologist, maybe you should listen to him, but here we know how awful it can become if your pressure at LP is "borderline" and then they try to say you don't have IIH or you aren't a candidate for certain treatments based on that one number.  you have already gotten a taste of that from your GP saying you are somatosizing: that makes me so mad!  I would call the  neuro-ophth tomorrow and ask if you are risking your vision to wait a few days to find out the baseline pressure before starting the Diamox.
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andyro

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PostSubject: Re: New Here: Introduction & Questions   Wed Mar 07, 2018 2:21 pm

@sophiasmom and @medmisfit - thank you both so much for responding! I did email and ask the neuro ophthalmologist and he said "go ahead and start the diamox. It may lower your pressure some but I suspect you will still be high." But I decided not to start. Suspect wasn't enough for me and I really want to know what is going on for sure. My lumbar puncture is on Friday morning so I can deal until then. They didn't think it was super urgent when I had to wait weeks for a neuro consult or 10 days for the lumbar puncture Smile I have lost a lot of confidence in doctors at this point. They also want to do an MRV with contrast. I'm so ticked that it wasn't done at the same time as the MRI/MRA. If only I'd known then to insist. I hate the thought of doing the tube again + more contrast in my system. I am trying to decide what to do on that too.
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Sophiasmom
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PostSubject: Re: New Here: Introduction & Questions   Wed Mar 07, 2018 6:07 pm

I had an MRV without contrast.  it seemed sufficient.  you can also have a CT angiogram/venogram instead.  this involves iodine contrast and radiation, but would not require the gadolinium injection.  pick your poison!  I had one of those of my neck, couldn't have the MRV again at that point because of braces on my teeth.  if you have to go back for an MRV brain, make sure they do one of your neck also.  there are conditions that can decrease jugular venous flow which can cause IIH.  one of them is surgically reversible.  impingement of the styloid process.  also make sure you get a complete blood work up for autoimmune disease and clotting disorders which can be associated with IIH.  I can't imagine you were on tretinoin recently, hard to imagine a distant usage would do this.  I was on the pill too, as well as minocycline, but both my mother and my son have IIH too and so for us it is an anatomical issue.
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andyro

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PostSubject: Re: New Here: Introduction & Questions   Fri Mar 09, 2018 6:52 pm

Update - had the lp this am and opening pressure was 37. She took it down to 12. I’ve seen so many people say they feel better right after lp. Does that mean same day? My vision stuff is all still there. Got a headache during the lp? But my ears seem quiet. Now to start the diamox I guess and see what’s next.
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Sophiasmom
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PostSubject: Re: New Here: Introduction & Questions   Fri Mar 09, 2018 8:57 pm

OK, thank you for the update and glad that the pressure documents your condition unequivocally.  now you can get the right treatment.  it's a big change in pressure and your brain has to get used to it.  hopefully you will see some visual improvement soon.  you could have a low pressure headache from the rapid decrease, at first.  good luck with the Diamox.  Please make sure you get evaluated for obstructive sleep apnea.

my son and I have always been at 23.  since that is "borderline" and we don't have papilledema, it has been difficult getting proper attention, some docs want to say we don't have IIH, which is very frustrating.  that is why I was on board with holding the Diamox to make sure you get an accurate initial OP reading.  I had jaw surgery and my OP came down to 14, with clinical remission, so no one can convince me that 23 was normal.  also, my son is always joyful after an LP when they bring him down to 14, he never has a post tap headache and is always wanting to run around and play, jump and dance like the weight of the world has suddenly been lifted from him.  this occurred from age 4 to age 7, after each of 4 LPs.  when he was 5 I asked how he felt and he said "my problems are gone now".
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