Idiopathic Intracranial Hypertension (IIH)

Hey everyone,

I want to talk about Intracranial Hypertension. Intracranial Hypertension isn't widely known among the spoonies of the world, let alone the non-spoonies but its something that can affect anyone, at anytime, at any age. Idiopathic Intracranial Hypertension (Idiopathic means of "unknown cause") is a serious neurological condition in which high cerebrospinal fluid (CSF) pressure within the skull that causes unbearable headaches, swelling of the optic nerves and can result in loss of vision or blindness. Diagnosis of IIH is made by ruling out other neurological conditions that might have the same symptoms. Neurological examination is normal (apart from my case because of the underlying neurological problem) apart from the presence of swollen optic nerves although it may not always be present. Definitive diagnosis of IIH is made by performing a lumbar puncture which shows the pressure of cerebrospinal fluid (CSF) to be above 25cm/H₂O.

 No-one knows what causes IIH, although blood clots in the veins draining the brain can cause Intracranial pressure. Withdrawal of steroids, large doses of vitamin A or intake of foods containing large amounts of vitamin A, use of body building type steroids and possibly, hormonal changes and certain drugs can also cause raised intracranial pressure. Caffeine and stress have been said to play apart in Intracranial hypertension. The most common symptoms of IIH are: severe headache, papilloedema (swollen optic nerves), temporary loss of vision, transient visual obscurations (blurred vision), double vision and decreased visual acuity, pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse), and pain behind the eye and with eye movement. Other symptoms reported by people with IIH include: nausea, vomiting, fatigue, photophobia (dislike of the pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes long-term memory loss), confusion, feeling "spaced out" and lack of depth perception (e.g judging depth of stairs, steps, curbs). Also people with IIH may find unfamiliar (and even familiar) places, traffic, confusing and overwhelming. 

Treatment of IIH is the most commonly prescribed medication acetazolomide, which is a diuretic. It's thought that it acts by reducing the production of CSF. It's relatively safe but nearly all patients have tingling of the fingers and toes as a side effect of the medication, and patients are advised to increase their intake of potassium as acetazolomide drains the body's stores of potassium. As well as the standard acetazolomide, a sustained release form of the drug is also available, 'Diamox SR', and many patients tolerate this form of the medication better and find that the side-effects are reduced in comparison with the standard form of acetazolomide. Another diuretic commonly used is frusemide. Sometimes a short course of steroids may be given. Various analgesic drugs (painkillers) are used to treat the pain associated with IIH, with varying degrees of success, but as with all painkillers care must be taken as many drugs can be addictive and some can have severe side-effects. Some people need repeated regular lumbar punctures (LPs) to remove excess CSF, or if symptoms don't improve on medication, surgical treatments may be considered. 

My experience of IIH  have been that I had really intense headaches which made me puke, sleep all the time, have no idea where i was or what time it was and because of the sickness I couldn't take my pain killers so I was in extreme amount of pain. I spent days in my bed watching kids t.v (although my kids weren't in the room with me) to this day I have no idea what I watched. I began having vision problems in the sense of double and blurred vision, my eye began to become really painful and felt swollen (although you couldn't see the swelling), my head hurt like I had hit my head of the wall or the floor, I couldn't even lay my head on the pillow.

I ended up in A&E so many times begging doctors to help me with the pain and my eye, they all turned me away and told me to go to my GP. What they should have done is checked my eye seen that there was swelling in my optic nerves, asked about my other symptoms and sent me for an emergency lumbar puncture. Instead I had to wait six months of my symptoms getting worse to have a lumbar puncture (which was ordered to rule out other neurological problems). The lumbar puncture showed that I had high CSF pressure yet I didn't recieve acetazolomide till the 7/02/11.

Acetazolomide has been prescribed to me to reduce swelling in my eye and to reduce the pressure in my brain and spine. In this last week I have been taking them I have felt awful! I have felt sick and because of the sickness a loss of appetite, I have had a headache, a burning pins and needles feeling in my hands and feet, everything tastes disgusting, drowsy and a constant thirst and need to urinate, put all these side affects with the other symptoms I have, it hasn't been a very good week!

I feel like I'm in a catch 22 as I have to take these tablets and up them to 500mg twice a day to save my eye sight. If these tablets don't work or I feel I really can't cope with them then I will have no choice but to have surgery to save me going permanently blind. This makes me really angry as if the doctors had caught and treated me early on I wouldn't be in this position. My mum has Intracranial hypertension as well and goes to a different hospital to me, as soon as she has any experiences of the symptoms she is sent straight away to A&E where she is taken seriously, given a emergency lumbar puncture and kept in over night to make sure she is OK and prescribed medication. She only has to take the medication for a month to make sure the swelling goes down and is OK to carry on until the next flare up. In the differences of a matter of a couple of miles we are in two different positions.

I implore you all that if you experience regular headaches and eye problems go to your doctor or your local A&E. If your a caffeine lover this is a serious and rare disease and I might lose my eye sight and one of the main causes of IIH is caffeine and stress! Beware of your health as you never know when YOU might be affected.