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 I don't have IIH?

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Thequeenofinfirmum

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PostSubject: I don't have IIH?   Fri Aug 25, 2017 4:06 am

So good news? I apparently don't have IIH? I just went to an IIH specialist who looked at my case and thinks that I don't in fact have IIH.
This would be great news, but I'm not 100% convinced. I wondered what you guys thought.
This doctor said that I didn't have papilipedimia, that I just have small optic nerves. Have any of you ever heard of that before?
My opening pressure was 27 and I got a migraine immediately after the LP, so she thinks it must not be IIH. (She said 27 wasn't high enough and that I must have just been nervous, but I heard that anything over 25 is high?)
I have all the symptoms of IIH, I get pressure headaches and I can hear my heart beat in my ears. I don't want to have IIH, but I also don't want to wrongly assume I don't have it.
What do you guys think? How have your doctors dxed the IIH?
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medmisfit
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PostSubject: Re: I don't have IIH?   Fri Aug 25, 2017 8:32 pm

I encourage you to get a second opinion, if you have any doubts or concerns.

Here are my concerns. First, you don't have to have papilledema to have IIH. IIH affects everyone differently. Second, there is a scale for normal pressure, but we've also found that it varies depending on the individual (and also throughout your life) so more of a guide than diagnostic tool. For instance, when I was initially diagnosed my opening pressure was only 20, but there were also times that my shunt was set at 20 because my symptoms were better at that level. They usually confirm IIH if your symptoms improve following an LP because they drain CFS and lower the pressure.

There is a possibility that you had a "migraine" following the spinal tap because you were suffering from low pressure after CFS was drained. Did you find that you felt better laying down and worse when you got up? Did they suggest laying flat, caffeine, or anything to treat the migraine?

Unfortunately, many members have been misdiagnosed. At one point I was told that it was a side effect from the bird flu..that was also an IIH Specialist. I was even treated for migraines, chronic headaches, etc following my IIH diagnosis because the specialists believed test results over my symptoms. Eventually, I found a surgeon that told me those tests were no longer relevant and he fixed it..they were also all IIH Specialists. IIH is a rare disease and there isn't a lot of information out there, so many times we become our own advocates and end up educating the "specialists" providing our care. 

I'd encourage you to review our informational booklet "Just diagnosed-What is IIH?" and other info in our Useful Booklets and Guides section (http://www.ihaveiih.com/f44-useful-guides-and-printouts). If you still feel that you have IIH, get that second opinion. If not, press them to find the cause of your symptoms.

Let us know if you have any further questions or concerns, and please keep us posted!

Take care,
Julie
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Sophiasmom
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PostSubject: Re: I don't have IIH?   Sun Aug 27, 2017 6:01 pm

27 is elevated ICP.  Mine was 23 and my son's is 23 and we both improved after LP.  I was extremely ill at 23 and went into remission after jaw surgery when my ICP dropped to 14.  This is called IIHWOP and I would not see a doctor who does not understand this condition.  look it up on PubMed.  get a second opinion.  it's true that most docs would not recommend a shunt if you don't have papilledema, but there are other treatments, and we don't deserve to be medically neglected just because the optic nerves are OK.  My son and I both have had improvements from treating sleep apnea.  if you have any sleep symptoms, explore this side of it.  it was the only way I could get treatment for my IIH that worked.

so, I disagree with your doctor.
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I don't have IIH?

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