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 Natasha - Partial Diagnosis Jan 4/14

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Zooy
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PostSubject: Natasha - Partial Diagnosis Jan 4/14   Mon Jan 13, 2014 5:53 pm

Hi Everyone,
I'm Natasha. It's been a crazy month for us. I had a miscarriage at the end of November. My brother was also diagnosed with a brain tumour a week later. I started having really bad headaches around Christmas. I thought they were hormonal due to the miscarriage but as they got worse I finally went to a doctor on Dec 27th. I was told sinus infection and given antibiotics. Double vision started 3 days later. First really far but by the Tuesday I found it hard to focus and was still having killer headaches. At the hospital I had a CT done but everything was normal. I was told "maybe your sinus infection has turned into a sinus migraine". The double vision kept getting worse. By Thursday it had gone to about 3 inches from my face, everything was double beyond that. So being proactive, I set up an optometrist appt. Things moved really fast from there. She discovered papilodema in both my eyes, spoke to the opthomologist at the ER who was pretty sure I had IIH so they sent me to the ER for a lumbar puncture.
I had great service at the ER. Since my brother had a brain tumour, everyone was really worried. My LP took 2 hours and 3 drs and my pressure was totally normal. I had a 3 day hospital stay with all tests coming back normal. So the drs all agreed (internist, opthomologist, optometrist) I had IIH and would start me on a course of Diamox and were going to get me to see a neuro-opthomologist. Still waiting on that appt but today it day 10 on the diamox and my headaches are better (not 100% but better) and my double vision is gone!
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Sophiasmom
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PostSubject: Re: Natasha - Partial Diagnosis Jan 4/14   Tue Jan 14, 2014 7:37 am

hi!  so sorry to hear about all that.
what was your pressure specifically?  meaning what do they think is normal? 
FYI I'm a doc and the way I was trained, you always look at the optic discs when the chief complaint is headache.  they completely dropped the ball; both the first doc and whoever may have seen you in the ER.  you shouldn't have had to go to an optometrist.  that is negligence in my opinion.  especially since you had visual complaints!  visual complaints and headache = major suspicion for brain tumor which is not seen as well on CT as on MRI: you should have had an MRI.
so glad the Diamox is working!  most people hate that drug.  I couldn't tolerate it.
welcome to our site!
Deb
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Heidi
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PostSubject: Re: Natasha - Partial Diagnosis Jan 4/14   Tue Jan 14, 2014 5:45 pm

I am really sorry that you have gone through all that, it must have been heart breaking for you, and then on top of it all to develop IIH. At least it was diagnosed relatively quickly and you were put on medication, which seems to be working for you. We have lots of information and a helpful symptom log to keep track of them, so that you will always be able to give your doctor a clear picture of what is happening.

We're here to help and support you, so please don't hesitate to ask questions and advice.
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PostSubject: Re: Natasha - Partial Diagnosis Jan 4/14   Tue Jan 14, 2014 6:21 pm

Welcome to the group Natasha! I'm glad to hear the Diamox is helping and at least reducing some symptoms. I did very well on Diamox the 1st time I had IIH, so hopefully will be beneficial for you. They do link IIH to hormones, so I think it's interesting you developed symptoms following a miscarriage. I was in "remission" when I had a full hysterectomy and my symptoms came back with a vengeance, so I always find it interesting when there's some sort of hormonal link. I'm very sorry you've endured so much, but sounds like they're on the right track now.

Look through the site and let us know if you have any questions or concerns..we'll do our best to help you through it!

 hug 
Julie
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Zooy
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PostSubject: Re: Natasha - Partial Diagnosis Jan 4/14   Wed Jan 15, 2014 2:08 pm

@Sophiasmom wrote:
hi!  so sorry to hear about all that.
what was your pressure specifically?  meaning what do they think is normal? 
FYI I'm a doc and the way I was trained, you always look at the optic discs when the chief complaint is headache.  they completely dropped the ball; both the first doc and whoever may have seen you in the ER.  you shouldn't have had to go to an optometrist.  that is negligence in my opinion.  especially since you had visual complaints!  visual complaints and headache = major suspicion for brain tumor which is not seen as well on CT as on MRI: you should have had an MRI.
so glad the Diamox is working!  most people hate that drug.  I couldn't tolerate it.
welcome to our site!
Deb
My pressure was only 15.5 but they used a smaller guage needle then normal so he wondered if results might be off since it took so long to get it working. I'm glad I did go to an optometrist, I do have to go back unfortunately as my prescription was a bit off anyways so hey, free excuse to get new glasses!!

And medmisfit, I didn't know that about hormones but it's something to definitely consider. When I see my next doctor I'll maybe ask. I kept mentioning my miscarriage and D&C but they keep telling me it's not related.
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Wylee
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PostSubject: Re: Natasha - Partial Diagnosis Jan 4/14   Sat Jan 18, 2014 4:57 pm

Hello Natasha, and  Welcome 

I am wondering if perhaps you have LOW inter cranial pressure?!?  15.5 is actually a bit on the low side, even though it is within the "normal" range.  With a lp shunt, my pressure is between 11 and 12.  Does your headache improve if you lay flat on your back?  Does caffeine seem to help?

You have had quite the time.  I do hope that your docs are able to get things settled out for you, and that life will too.  You have endured enough.  Wishing you only the good stuff.  hug
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