Idiopathic Intracranial Hypertension (IIH) And Me
Idiopathic Intracranial Hypertension or more simply increased pressure inside the skull for an unknown reason. IIH happens when too much cerebrospinal fluid( the fluid around your brain and spinal cord) builds up in your skull. This puts extra pressure on the brain and the optic nerve causing in my case headaches, dizziness , nausea, neck and shoulder pain, pain behind the eyes, papilledema (swelling of the optic disc in the eyeball) and tinnitus. It can also be known to cause vomiting, blurred and double vision, blind spots, peripheral vision loss ,temporary episodes of blindness.
There is further information regarding the risk factors and some statistics on IIH here :
My condition was diagnosed through a routine eye examination which showed the papilledema (optic disc swelling) I was then referred to the eye hospital and onto a neurology consultant. Through MRI imaging it was discovered that I had what is known as a Chiara 1 malformation meaning part of my brain sits outside my skull so the lumbar puncture which would normally be performed would be unsuitable for me so my IIH is managed through a medication called topiramate and through weight loss and exercise. Some days my balance is a challenge, which can make things more difficult but I have an excellent understanding personal trainer who works with me to find things to suit me, he works online and in person should you want his details give me a yell! I cannot sing his praises highly enough.
The medication I take, Topiramate is an anti epileptic medication also used to treat migraines, it works by reducing bursts of electrical activity in the brain and restoring the normal balance of nerve activity.
I have been advised that becoming pregnant on topiramate could cause birth defects and is strongly discouraged so if I were to stay on the medication it is likely that I will be unable to have any more children which initially cause me some conflict but I am happy with the choice, my health for the children and family I have is more important and my IIH becoming controlled has massively improved my quality of life.
I do still have flare ups and can recognise these, and certain activities which I know will set it off but they are becoming more infrequent as my fitness and strength improve. Mentally and emotionally I have been learning to give myself a break when I need too, I have always been that tough inner voice for myself and I think anyone who has followed my story probably realises why I have, If not I may have got in bed and not got out! But giving myself the space to accept the not so good days with IIH has meant that I've used the better days to put the effort in and I am feeling more confident in my own ability to tackle the condition. IIH is usually a lifelong condition, but I am starting to realise that although I have IIH, it certainly doesn't have me :)
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