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 Introduction, very recently diagnosed

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chemistrygeek
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PostSubject: Introduction, very recently diagnosed   Thu Jul 25, 2013 2:29 am

Hello all, 

I am new to this forum, and just thought I would take a moment to introduce myself. I am a meningitis survivor(February 2013) and we are thinking my IIH may actually be a result of my infection. I was informally diagnosed about three weeks ago via LP, a day that also happened to be my 20th birthday. Today, my dx was made official. 

I have largely had my headaches and visual issues unrelentingly since I came home from the hospital mid-March. I had a puncture in April, then it came back three weeks later, then another puncture three weeks ago, then it came back a week ago. Has anyone else had so many relapses so close together? Does excessive relapses warrant consideration of shunting relatively early on? 

Keep fighting! 

K.F.
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medmisfit
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PostSubject: Re: Introduction, very recently diagnosed   Thu Jul 25, 2013 4:40 pm

Hi, welcome to the group! Have they started you on any medications? That's usually the first line of treatment. Spinal fluid can build up within a day, so it's not surprising you keep having symptoms, especially if left untreated.

I assume they've referred you to neurologist and ophthalmologist, at the very least. If not, make sure you request referrals..especially for your vision. You can get permanent damage, so it's important that they monitor and treat you.

I recommend checking out the Useful Guides and Print Outs section for tips on managing symptoms and talking to physicians. Let us know if you have any further questions or concerns..we'll do our best to help you through it!

Take care,
Julie
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Wylee
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PostSubject: Re: Introduction, very recently diagnosed   Sat Jul 27, 2013 9:26 pm

Hello K.F. and Welcome 

It does sound as though you have been through a very scarey time.  My ex had meningitis earlier in the year and it was quite an ordeal.  I am so glad to hear that part is resolved.
Having lp's done as a therapeutic way to control IIH is not a good idea.  Each time we have an lp, we run the risk of infection (you certainly don't need to go down THAT road again!) it builds up scar tissue and it can be painful (if the doc doesn't do it right).  As Julie said, the lp's are great as a quick way to reduce pressure, but it has to be followed up, immediately, with meds.  I used to keep my Diamox with me when I would have a lp so that just as soon I went into the recovery room I could pop a pill (or two).  It takes as little as an hour and a half for the pressure to rebuild!  You are not having relapses.  IIH cannot be cured.  It can go into remission.  We just need to keep trying different things to see what will work with our body to reduce the fluid build up and keep it down.

Are you overweight?  There is some evidence that weight can contribute to IIH.  Also, sleep apnea and the use of some acne meds can make it worse.  Have a good look around the site and read up on what we have learned about IIH.  And feel free to ask any questions that you may have.  We'll try to help you along your journey.
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chemistrygeek
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PostSubject: Re: Introduction, very recently diagnosed   Sun Jul 28, 2013 9:16 am

Thank you for the replies, ladies! I appreciate the info. 

Julie: My neuro started me on Topamax. He also put me on a Medrol pack to lessen my pain for the time being. 

Wylee: What's interesting about my IIH is that I have always been on the thinner side. I was in the hospital forever with my meningitis and wound up losing so much weight that now I am in fact quite underweight (BMI of 16.9). 

On a side note, obviously I am very new to this whole IIH thing, but I have never heard of someone getting IIH after shingles. Is that common?
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Wylee
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PostSubject: Re: Introduction, very recently diagnosed   Sun Jul 28, 2013 2:08 pm

As far as we know, I may be the only one who has a shunt installed due to Shingles.  As far as having the IIH because of it, that's a real unknown.  My Neurotologist has spent many hours speaking with his colleagues trying to figure out what was causing my symptoms and they came up with the theory which they presented last year about dizziness with headache being related to elevated ICP.  I'll have to ask him when I see him tomorrow if there has been any more responses.  But, it seems that the form of Shingles that I had, which passes through the brain, easily disseminates.  The thought is that the virus clogged up the holes that should be used to rid my brain of the spent SF.  Raises the pressure just enough to make my life miserable, but I am spared the severe symptoms that most people with IIH have.
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