Idiopathic Intracranial Hypertension (IIH)

It’s been a while, at least since I’ve written about all of this, but it’s something that’s been affecting our lives, day in, day out, for about eight months now. My elder daughter has been diagnosed with Idiopathic Intracranial Hypertension (IIH). Check out previous posts under the life category under the tag cloud on the left hand side of my blog’s page. Anyhow, not a week seems to go by without a trip to the hospital in some way shape or form. Last week it was two……….what joy!
Firstly a trip to our local hospital in Salisbury, to see the wonderful paediatrician who’s been looking after my daughter all along. This, it has to be said, is the only appointment that I don’t really mind…in fact, I would go as far as to say I look forward to it. You know what it is you’re going to get. As I’ve mentioned before, the doctor is someone not only would you trust your life with, but more importantly, someone you’d trust the life of your child with. Professional, knowledgeable, obviously great with children (I assume that’s a must for the job) and importantly, someone who inspires trust. Not only are these qualities important to me, but to my daughter as well. She has described this doctor in the past, as the only one she really trusts. And when she said this to me, all I could think was, ‘I couldn’t agree more.’
Anyhow, the appointment was quite routine. He was pleased with how she was doing. He seemed to think she was progressing in the right direction, despite the fact that she’s still got her HEADACHE. (A headache that goes on for eight months and never, ever goes away, deserves to be written in capitals.) Now that she’s getting towards the end of her course of steroids, there are some different pills she has to have, and I have to be trained on how to give her a steroid injection, in case illness strikes. This was all a little bit of a shock, as no one had told us that part. We were under the impression that the steroids would come down, week by week, until she was totally weaned off. You would think this would be important enough to mention, particularly since she’s been ‘coming off’ if that’s the right description, the steroids for over two months now.
So all in all, a successful and about as enjoyable a hospital appointment as you could have.
Moving forward to Friday, the next hospital appointment was at Southampton with the neurologist in charge of my daughter. Not nearly so enjoyable this time, but then I could quite easily have predicted that. Let’s start with the only positive thing I came away with. They’re going to monitor my daughter’s eyes, checking for papilloedema on a regular basis, every four to six weeks. My understanding of this, is that it will act as an early warning sign, for any increase in pressure around her brain. Good news and something I heartily approve of and am very appreciative that they are doing.
That, however, was really the only positive I could take from the meeting, and came away feeling particularly frustrated. So much so, that I’m writing this at some ungodly time on Sunday morning, after having had a second night without very much sleep. Given her condition, my daughter has not attended school for all the time she has been ill, many months. Now she has spent a considerable amount of time in hospital over that period, or should I say hospitals. That aside, the main reason that she can’t go, is the simple fact that her HEADACHE simply won’t allow her to do the work. I can’t tell you how many times I’ve tried to get her to do just a taster of some school work at home, but she struggles so much, just to do very basic things. At the moment she’s better than she’s been since well before Christmas, but if she tries to do some maths for example (something I do try and get her to do on a regular basis) she might only manage about twenty minutes, by which time she’s totally wiped out for the next two hours or so. I’m not sure exactly what it is that does this, whether it’s the concentration required on top of the headache, or if it’s the focusing on the words that causes her to struggle so much. I sit and watch from a distance, to try and make sense of what she’s going through. It breaks my heart to see her like this on a daily basis. I feel cruel for making her even attempt such a relatively simple task (not for her) and worry about the long term effect it may have on her. My worry is, that if this is the state she’s in after twenty minutes of maths, in total silence with no noisy children, or other interruptions……..how in hell’s name is she supposed to go back to school? And more importantly at the moment, is the fact that because she is a year six, she will start a new school in September. How is that going to work? I have no idea, and to be quite honest………it scares the hell out of me. Ever since this whole thing first started, I’ve set myself imaginary goals. ‘It’ll be okay,’ I say to myself. ‘They’ll have the whole thing sorted out in a month or so.’ That was the middle of October. It soon became clear (to me at least) that this whole thing was going to be a lot more difficult and prolonged then anyone could predict. The main reason I resigned from my job as a Teaching Assistant, was the fact that I could see this running on, and on and on. So that was back then, way before Christmas, and ever since, all of these goals have come and gone. The last one was set sometime in late February I think. It was to have her back at school, at least part time, directly after Easter. But now that’s come and gone, and although she doesn’t start her new school until September, you’d be surprised at how quickly, in my life, that’s zooming towards us.
Anyhow, back to the appointment.

My Children Trying Hard To Stay Dry At Hengistbury Head

My Children Trying Hard To Stay Dry At Hengistbury Head

We were told to keep going with the Acetazolamide (one of the drugs used to supposedly help reduce the pressure), stop taking the aspirins that were prescribed last time, and continue reducing the steroids. All of this was about what we expected. The doctor then stated that my daughter should start going back to school part time, despite the fact that she still has this ongoing headache. Now I mentioned everything I’ve written above…..how much she struggles just to do a tiny bit of work, and that’s not in a noisy, crowded, school environment. But she was adamant. She said seeing a psychologist would perhaps help her do this, and that perhaps we as a family would benefit from seeing one. Oh good! At that point, it seemed that any hope I had that her headache would be cured by the time September comes round, had just been forcibly crushed. It sounded, and still sounds to me, like she’s just expected to go forward with her life, putting up with this constant headache. Just when I thought it couldn’t get any worse……….it did! The doctor started talking about migraines again. If you’ve read my other posts….you’ll know I’m not too thrilled about this. When my daughter had a low pressure headache from a ‘lumbar puncture’ that went wrong, instead of ordering an MRI scan of her spin, the doctors spent three weeks trying to tell us it was a ‘MIGRAINE’. One in particular got most disappointed with me, when I refused to consent to my daughter having the migraine medicine. I refused because I knew full well her condition was due to a CSF leak in her spine (something Salisbury hospital knew, and had told them), and the more I hear the word ‘migraine’ the more I hear the word ‘GUESS!’ Now you might think that it’s my bad experience at the end of last year/start of this year that makes me so mad when the go on about migraines, and perhaps, yes…part of it is. But you see, they know her condition is as previously mentioned, Idiopathic Intracranial Hypertension (IIH). That’s what she’s been diagnosed with, and both hospitals have told us that’s what she has. The condition is rare in adults, even more so in children. So here’s the bit I can’t understand. You know that she has IIH. That is a fact. It is unbelievably rare. Another fact. Why do you then start going on about migraines? Are you really telling me she has this really rare condition that affects the pressure around her brain, and that that’s not what’s causing her the headache, but instead she has a migraine on top of the really rare condition. I’m really sorry, but the migraine thing here is nothing more than a guess…..or worse. A cop out. Oh…..let me see. I don’t know what it is, so I’ll say………….MIGRAINE! It seems that my daughter’s symptoms aren’t following the ‘usual’ pattern for IIH, but then they IIH is so rare there isn’t much ‘usual’ about it at all – and a constant headache isn’t typical of migraine either! I refuse to believe she has this rare condition and then has a migraine on top of it (something that conveniently can’t be proved). Surely you’re just asking for trouble in thinking about prescribing medicine for something that you don’t know is there, while you’re still trying to figure out how to deal with (hopefully cure) a rare underlying condition that you know is there. At this point I want to say it’s not rocket science, or brain surgery (but it almost is brain surgery). To my mind there is no logic or common sense in what is said. I know that I have no medical training, but in some of the things that have gone on with my daughter…….I’ve been able to predict, thanks in part to the wonderful doctors at Salisbury who give you an insight into what has gone on, and why. And yet still, on occasion, you get treated almost like a child (particularly if you don’t accept word for word what they say). Needless to say, I wasn’t happy about the subject of migraines and related medicines. Interestingly the subject was changed quite quickly. If I had to say why, I would guess it’s that look that I get when I’m disappointed. I’m pretty sure my wife knows the one. I’m assuming the doctor had a fair idea, given that I didn’t have to say a single word.
Friday was not a good day. A psychologist to look forward to. I think we can safely say…..he or she is going to ‘love’ me. I’ll either be locked up in a padded cell somewhere, or be providing information on how to be a deeply disturbed, grumpy old man for many years to come.
I’m sure the subject of migraines will be revisited another time….there’s something to look forward to. (Oh, and when we left, we were told to take the form to the reception desk, and ask for the next available appointment. When do you think that was? That’s right ………..FEBRUARY!!!! You really can’t make it up.)
And now all we have to do is get my daughter back to school…..headache and all.
It’s funny…these past few weeks, I’ve just been grateful she’s as well as she is. When I say that, I mean that she can walk about (I know this sounds stupid, but she did spend ten weeks of not being able to walk, and barely being able to sit up). Recently we’ve had a couple of trips down to the stunningly beautiful Hengistbury head, or even on occasion to the beach. I suppose both times we’ve spent about an hour sitting on the nearest beach, the kids throwing stones, and running in and out of the waves. It’s been the only times we’ve been out anywhere nice as a family, since September, before this all started. I’m grateful for that, but want so much more. I want it to be like it was before. I want her to be well. I want her to be able to ride her bike, swim………..play hockey. I know it’s selfish…..but I want all of that, and it tears me up that I can’t have it. Perhaps one day.
So if any of you out there on the dastardly interweb have any experience with Idiopathic Intracranial Hypertension (IIH), know anyone with it, or who’s gone through it, if you’re a neurologist with an interest in it, and you have any advice on anything we can do, however unusual or unlikely………please get in touch. I’m stuck and don’t know what to do. So if you can please help, I would be ever so grateful.
THANKS

Your thoughts are much appreciated..........Thanks!