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intercranial hypertension entry 18

Feb 16, 2011 - 0 comments
Tags:

Baby

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intercranial hypertension

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eyes

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Headache

,

diamox



Quite a bit has happened since my last entry.
Most importantly, we have a beautiful new daughter! She was born about 6 weeks early! (Essentially due to her mums Intercranial hypertension)
Since my last entry, my wife hasn't been home - she's been in hospital struggling to deal with this damned IH condition and all the horror it brings (headahce, nausea, tinnitus, reduced vision)
Thankfully the staff blocked out a two bed room and stopped other patients from occupying it (amazing in a very busy hospital) so she got as much rest as possible in a darkened and quiet room.  They also had her hooked up to a PCA for a long time.  The idea being she had a baseline of oral pain relief, but if things got really bad really quick, the PCA could be used to quickly keep on top of the pain - but really loads of opiates aren't great for an onboard bubs :(
They also put her on a low dose of diamox to see if we could medicate the pressure down.  After trying to delay things as long as possible to let the drugs work, they finally decided to do a lumbar puncture on the terms my wife wanted - under a GA (she has a terrible phobia of LPs)
So they went in... and no luck - couldn't get to the dural space due to scarring and other issues and bubs wasn't liking the GA, so they pulled the pin on the procedure.
That evening they told us they wanted to deliver the baby the next day.  This would open up the medication options a little and hopefully with baby out, one of the factors making the IH worse would be gone.
So now we have this incredible little bundle that we both adore, but so far (about 12 days out from her delivery) mum still has a terrible headache, nausea, blurry eyesight with large blindspots.
The plan now is to attempt another LP, but guided this time so they defintely get in.  Was supposed to be happening today, but postponed for a week!  very frustrating.  My wfies condition continues to fluctuate wildly.  Some days, she's ok 6/10 pain which she can deal with and no nausea.  Her pupils return to almost normal.. but within 12 t0 18 hours, she can be up to 9/10 pain, fully dilated eyes, major nausea and bed ridden again.  It changes so fast - way faster than I think the docs realise.
While I've not had much good to say about the hospital in the past, and despite some dreadful interdepartment organisation, I have to say, so far, this has been a better hospital experience for us.  for once we're just fighting the condition and not really in conflict with the staff.
nb - people might also be wondering about the effects of diamox and the morphine on bubs.  The morphine possibly did make her quite twitchy for a few days after birth.  She also may have had some very mild withdrawl symptoms, but we've been assured it wasn't at all bad.  She did have issues with breathing, but thats mostly down to being early and she was on a CPAP for a few days.
The diamox dropped her electrolytes a little and her haemoglobin dropped sharply, but levelled off at an ok safe level.  Mums bloodgasses were the same as bubs, so we think its the diamox.
12 days on and bubs is doing fantastically - piling on the weight and free of most tubes/monitors etc.
Very scary time for a few weeks there - having to take these meds, but not really knowing what (if any) effect it would have on the baby, but ultimately we had to make sure my wife was ok or bubs wouldn't be either.


intercranial hypertension entry 17

Jan 19, 2011 - 2 comments
Tags:

Baby

,

pregnant

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Migraine

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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.

intercranial hypertension entry 16

Feb 18, 2010 - 0 comments
Tags:

intercranial hypertension

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Headaches

,

Exercise

,

neurologist

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Diet



Its been quite a while since I updated things, so here's a quick summary of the last month or two.
Overall things are better - not great, but much better than they were.
We're just finishing my wifes 3rd week back at work.  She's still plagued by constant headaches, but mostly manageable.  Generally she's not taking anything for them, but some days its asprin and codiene to get through the day.
She did take one day off this week when it all got too much, but overall she's doing well.
we've seen our chiropractor again (after nearly a year of not seeing him) and are due to see him again in a week or so.   He's been fantastic in the past, and as it'd been so long, he was reluctant to do too much too soon.
Oddly, the chiropractors wife had also been diagnosed with intercranial hypertension - and also had some issues with the local hospital.  Nothing on the scale that we had, but enough messing around that confirms (along with other stories) that its a generic problem with the team at Wellington hospital - for whatever reason.
So where to from here?
Well, continued improvements on diet, exercise  (we just joined a gym), and continued alt therapy.  We will probably get in touch with Dr Mossman (neurologist) again as he seemed to be one of the few with any real common sense at the hospital.  This is mainly cos my wifes eye will dilate and lock for a few days every month - normally taking a few days to settle down.  I'd feel better if someone was at least looking into that or at the very least, aware of it.
I'm still very keen to get her seen by an endocrinologist as many of her problems seem to me to be hormone related, but she seems uninterested in seeing more doctors - and after last year, I can't really blame her.  Hopefully in time (and before another crisis point) she'll make the time to do this.

intercranial hypertension entry 15

Dec 07, 2009 - 2 comments
Tags:

intercranial hypertension

,

Headache

,

Pain

,

eyes

,

neurologist

,

papilledema

,

topomax



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.