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hi all
im new to this site. im 42 got 2 kids and im avery busy midwife, or at least rrying to be a midwife when these headaches are not too bad.

i have a history over 35 years of migraine, but in 2203 suddenly out of the blue i got the most awful headache u can imagin lit built up over the weeks and has now been here for 4 years, ive been on most drugs with no effect. however last week finally got to see top specialist in national nuro hosp london. all week they kept telling me it was new daily persissent headache and they didnt expect to find any thing wrong with the tests they were going to perform.

to their surprise i had a lumbar ouncture which showed very high levels of csf pressure. since coming out of hospital obviously being a midwife ive gone straight onto the net to find info, im really shocked at what ive been reading, they discussed that in the future i would need the pressure monitoring, in order to do this i need a sensor inserting through my skull, has anyone had this as so scared.

ive been reading about people having shunts i know this is a last resort but has anyone had effective treatment with medication or repeated lumbar punctures.

if youve had a shunt, can you go back to work

please write back



Did you ever learn about a med that decreases csf pressure? I have a friend who takes such a medicine, but I don't know what it's called.


Hi Tracey

I had a Lumbar Shunt put in in March 2007, touch wood everything has been ok, I have the occasional head ache but nothing compared to how it was.

When I was diagnosed with Idiopathic Intracranial Hypertension in December 2006 I was at the brink of going blind which was quite scarey. My headaches had been constant for about 4-5 months before I plucked up the courage to go to the doctor. But befors then I think I had them on and off for about a year or 2. When the doctor saw the swelling behind my eyes and admitted me to hospital I had my first lumbar puncture along with a CT scan and MRI scan. After that I had a lumbar punture every week until my operation. They told me weight loss would help, which I tried and it didn't work. I was on a million differnt kind of tablets at the time.

The operation I had took about 1 hour maybe just over and the recovery time in hospital was about a week. I was back at work 6-8 weeks after my operation but the lumbar shunt isn't as big an operation as the shunt that comes from the skull/brain. Please have faith in the hosptital as they do no what they are doing.

Good luck with it let me know how it goes!



Diamox Sequal is the medicine you should be on.


My girlfriend has had IIH for 2 years now and has been with one nurologist who has struggled to help her. She has been on Topirimate for the pressure and Amitryptiline for the headache but these have had little effect. She also has sight problems and has almost completely lost vision in one eye. After 2 years we have insisted on a new nurologist at a new hospital. We saw him for the first time and he seems better already, He has prescribed her with a Water Tablet on top of the amytryptiline which is supposed to convert some of the excess CSF fluid into urine to be passed in the usual way I believe this tablet is Diamox as someone previously mentioned. He also beleives that her having had irregular periods her whole life may be a contributing factor. He is referring her to an Endocrinolist to check for hormone inbalance.

A shunt has been mentioned but the new nurologist says he won't to that until things are really desperate as there is a 20% risk of meningitis with the operation, Meningitis can of course be fatal where as IIH (or BIH as it is also known) is not.

Hope this info helps you.