Benign Intracranial Hypertension

I read an article about someone who had recently been diagnosed with BIH (Benign Intracranial Hypertension) and I was surprised about the information given, and how alone and desperate she felt about her condition. Here is my story:

I had been suffering for about six weeks with headaches, dizziness and generally feeling as if someone was standing in my head.I carried on working, and as a nurse, found it very difficult to focus and function. I had been working nights and after originally being admitted, scanned and 'diagnosed' with migraines, I carried on. I eventually went to an opticians to have my eyes checked due to my 'migraines'. The optician dilated my pupils, and immediatley sent me to the Accident and Emergency Department. I felt very frightened, and more so when he explained that he could see multiple haemorrhages behind my eyes. I was admitted, examined, and sent for various tests including Visual Field Tests, Scans, XRays, Blood Tests, Neurological Assessments until I was eventually diagnosed with BIH. A condition which prevents Cerebro Spinal Fluid, or CSF,  being drained sufficiently from the intracranial space thus leading to a build up in pressure. The pressure was so high in my case, it had caused my blood vessels behind my eyes to haemorrhage.

I had been transferred to a Neuro Unit when the specialists explained there were several potential causes. Being thirty-something, being overweight, but most importantly, being on the Contraceptive Pill. I had put on a lot of weight in a very short period of time. I had stopped the Pill when I first got admitted with the 'migraines'.

So...now....my life is as follows.

I have had to reduce my hours in work, which as they originally thought I would have to give up nursing, is an acheivement.

I am on my second type of medication as the original choice didn't agree with me.

I have still the occasional headaches. At present I am waiting to have a repeat Lumbar Puncture to check my CSF Pressures. It may mean that they are elevated, and that more fluid will have to be drained. There are several doctors who blame the biggest emphasis on losing weight, however the Neurologist say this is not the biggest cause.

I get very tired easily. I get very cold. I have pins and needles in my face, hands and feet.

But...on the whole, it could be much worse. There are various complications involved and surgery is an option but often avoided where possible.

As far as driving goes, as long as the VFT's (Visual Field Test) show no damage, I can drive. At present I only have 70% peripheral vision so it's not on the cards for me yet.

BIH is a horrible condition, but with the correct Neuro input, and keeping a supply of Dextrose tablets, Caffeine/Energy drinks and plenty of water, I can manage a very good lifestyle.

There are support networks and websites that can offer help and support. Use them and ask your neuroloist for help/advice.

That's what they are there for.....and life does go on.