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intercranial hypertension entry 17

Jan 19, 2011 - 2 comments







dilated pupils

Jan 2011.
Well its been almost a year since my last entry and this is mostly good news.
2010 was a significantly better year for us.  I think my wife had only 4 bad headaches for the whole year - each time one pupil or the other would dilate, but never both.  
As mentioned, she returned to full time work on the first of feb and had a pretty good year all around.
Some news is that we are now preganant!!, which is fantastic news, but was a little worrying as well.  What if the weight gain triggered the intercranial hypertension again?  Well we hadn't seen any sign of that until now - at the 30 weeks pregnant mark, she's had her first doozy headache and this time with both eye dilated.
she did four days in Wellington hospital - mainly just to get fluids onboard and some pain relief.  Severe pain lead to nausea and she was throwing up all the time which the baby really didn't like - it was always still for quite a while after each vomit.  After four days (with one pupil down) she was sort of on top of it enough to find the hospital loud and noisy (not to mention they had her in a very bright and noisy room which is terrible for a migraine - so after getting a tracing done and confirming the baby was all ok, she came home (on a thursday) and slept for another day.  She had a pretty good sunday and both her pupils returned to normal size, but monday, one eye was up again and so was her headache.  She couldn't face work and slept the entire day - tuesday she was better and went to work, but wednesday both her pupils were up and she stayed at home.  
Its thursday today and she's still in terrible pain.  We had big plans over the next few days with a company sponsored party on friday with some big name celebrities visiting us from LA (hint: Avatar) - and off to Masterton to see an air show called Wings over the Wairarapa - but at this stage, I'm not sure she'll make either event :(

nb - This time round we saw a variety of doctors.  We managed to avoid entering the hospital via the emergency dept, but going to our midwives and them getting in touch with the neuro doctors.  we met a new (greek?) guy called Alexis - he was pretty good (especially as we are a tricky case) and we eventually met his consultant, Mr McNaughton who was also good to talk to.  Felt that he actually listened, but unfortunately was just as perplexed by my wifes story and symptoms.  finally, we also met up again with our 'regular' consultant Mr Mossman.  While normally pretty good, this time he seemed a bit distracted and asked the same of similar questions over and over and at times if felt like he was getting the wrong end of the stick and putting words in our mouth to get a quick conclusion - but I think we eventually got there with him.  He's still 100x better than the arogant jerk Park who insulted us back in 2009.
I can't help feeling that there is something that they are all missing.  They keep disconnecting the headache/migraine from her eyes/pupils and often don't seem to care any more about how positional this head pain is - this current headache is worse lying down and better sitting up - which seems to be a high pressure symptom.
At the same time, her scalp gets really sensitive - especially around the pressure monitoring site, and around her scar on her back where they put (and removed) the shunt from - it often swells in that area - either to one side of the scar, or the other and gets very tender.  It all seems to point to some kind of fluid pressure issue - but no one seems to know what it is, or be particularly worried by it.

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Avatar universal
by keyman26, Jan 19, 2011
I should add that we had to stop the topomax once we found we were pregnant - not a great drug to be on while pregnant.
Certainly during the first trimester.  while we seemed to be ok for 6 or 7 months with out it, it may be time to reconsider it... or we can maybe hold out til after the baby is born.  Hopefully it doesn't come through breast milk.
grrr pregnancy complicates so much with medications :/

Avatar universal
by tarawshopper, Feb 17, 2011
My doctor told us that we have to drop 40% of my body weight and be totally off the diamox before we can consider trying to get pregnant!    We are looking at, at least a year, she said we will review it again in June to see how the progress is coming at that point!

Good luck and keep us updated on how the pregnancy is going!

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