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intercranial hypertension entry 15

Dec 07, 2009 - 2 comments

intercranial hypertension













Its been a month or so and time for another update.
Not too long after they removed the probe from her brain, and some more "tests" done by some arrogant opthamologist, they decided (in their wisdom) to discharge my wife.  She still had an incredibly bad headache, she was still vomitting many times a day, her pupils were still dilated at times - but they (the neurosurgeons) simply weren't prepared to do any more and the neurologists seemed unwilling or unable to counteract them.  Some of the nurses and the psychologist who'd been assigned to my wife were fairly horrified at this treatment and suggested a number of possibilities for us to follow up on once discharged.
We booked in a private consultation with a neurologist in Brisbane who was suggested to us.  We managed to get a booking in fairly quickly which was great.
So a couple of weeks spent at her aunty's house being cared for by her mother (who is a registered nurse).  She decided to back down from some of the many, powerful, pain relievers they discharged her on and over the course of the weeks, she managed to stop regularly taking most of them and only used them when the pain just got too bad.  
She had some natural type therapys (massage etc) but initially they made her headache worse and made her eyes dilate.  But the 2nd time, it actually seemed to help a little.
She also saw an optometrist to get some new glasses (on a day that her eyes weren't too bad) and he immediately pointed out to her that she had papilledema. - she then explained her situation to him as she hadn't prior (wanting an unbiased view)
At the end of November, her mother had to return to work, so for a few days she was more or less on her own - until I flew back over to take her to this specialist appointment.
Unfortunately, we didn't get any real startling revelations or help.  In her opinion, this neurologist felt that even if she did previously have IIH, she didn't now and had no signs of papilledema (despite what the optometrist had told her days earlier).  She basically said that now it was just a bad headache and told me to ignore the signs of pressure and of course she could fly.  she put my wife onto a low dose of topomax and said that if it didn't help in 2 weeks, to double the dose and see how that went.  She seemed very unwilling to contradict what other doctors had said or written in her notes.
So we left a bit underwhelmed and a bit poorer in the pocket.  My wife then decided that there was little worth sticking around in Australia for and that she'd return to New Zealand with me.
So on the sunday (6th Dec) we flew back to Wellington.  Again, the flight was mostly ok, but on landing it became extremely painful for my wife as the pressure in the cabin began to increase (so much for the 'ignore the pressure' advice from the neurologist) but thankfully once we touched down, she was able to settle a bit and once in customs area, she just lay on the floor for a while to allow the pressure in her head to balance out a bit.

so now our plan is to see if this topomax helps, but at the same time to persue some alternative reliefs as it seems we are unable to count on much assistance from any doctor or hospital.

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by mommies4, Oct 23, 2010
Hello keyman,

   I'm sorry to readyour words and know how little help you recieved.Although It don't actually surprise me either.I'm not sure about where you live,but in alot of cases I see the same thing Docters verses hopelessness ..unfortunately !

   Idont see any recent entry's hope all is better or at least tolerable ... Please give updates if able the more info we get as patients , for each other the more we can figure things out,. It's sad that we have to be our own advocates,but it is up to one to take care of ourself.


Avatar universal
by keyman26, Oct 27, 2010
Hi Mommies4,

Thanks for your kind words.  I haven't written for a long time, but things have definitely improved for us - my wife returned to full time work late feb / early march and has enjoyed a pretty normal lifestyle since then.  The debilitating headaches and lengthy headaches have largely gone.  She still gets them every six weeks or so, and either one of her pupils will fully dilated and lock for a few days during the headaches before settling down - usually after about 5 or 6 days.  Despite this, she will only take a day off in the middle of this 5 day cycle if it gets really bad.
The scary thing for us now is that we're almost 20 weeks pregnant and we've had a couple of signs that the frequency of the headaches are increasing that they are definitely pressure related.
We're really hoping that things don't worsen as she experiences the usual weight gain associated with pregnancy.  On the up side, she's been treating her body like a temple - no alcohol, no caffine, no medications (even topomax), and many of the foods she normally loves are off the menu.  She's putting up with a lot to keep our baby as healthy as possible.
Fingers crossed for the next few months leading up to March when we are due.

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