Hi, i'm Clacena, I was diagnosed with Benign Intecrainal Hypertension now known as IIH in 2007 shortly after i turned 18. i was having headaches and thought that i needed new glasses, the optometrist didnt tell me anything just that i needed to drive to the city as we lived in a small town several hours away to go to the eye hospital to get further tests.
I had no idea that anything was wrong so made an appointment about a week later. at the eye hospital they ran some tests and said that there was something wrong with my eyes and gave me a referal to see a neurologist. i didnt really understand and became worried but my family was great and supported me the whole time, my mum came to all of the appointments with me.
We got in to the neurologist fairly quickly, after looking at the eye hospital results he booked me in for an MRI that day. we came back a few days later and he explained that he suspected i had IIH and that we needed to do a lumar puncture to confirm, i hate needles so was pretty scared but had one that afternoon. he had the results later that day and said that i had IIH and my presuure was 31, normal presure is between 7-15. they removed some CSF to try and bring it down.
I had 2 more LP's to try and reduce the pressure but it never went down from the 30's by this stage i had severe bruising around my eyes, it looked like i had been punched and was getting headaches daily, i was terrified.
Dr Andrews said that we needed to put in a lumbar peritoneal shunt otherwise i would be irriversibly blind within a few weeks. he stated that because it was considered brain sugery i would not be able to drive for at least 4 weeks. he then said that i may not be able to sit up for several weeks depending on how i coped with the surgery we could only wait and see how it went. from the time i saw my optomitirist until i had the surgery it was roughly 4-6 weeks.
Since my shunt has been in i have no sign of papilledema, but i have migraines daily. after suffering for 12 months i went back to Dr. Andrews begging him to do something as i couldnt cope and i couldnt continue to take painkillers every day. We tried Botox, epilum, D.H.E, Maxalat im sure there were more i just cant remeber what else it took 2 years before trying Topamax, inderal and endep which has reduced my migraines from daily and severe to dull daily and only the severe ones once a fortnight.
I have recently gotten married, my husband and i are going to be trying for a family in the very near future...so i have to come off some of Inderal, so far it hasent been good.
im completly off of the inderal now and am having horrible pressure in my head and severe migraines,it feels like im underwater and sinking quickly, im struggling to accept and cope with the pain. the mersyndol doesnt work effectivley anymore...but im scared to take the endone daily which ive had to do the last week. im about to go see a natropath to see if a change in diet will help, mediatation and accupunture. i have also been refered to a pain management clinc but the wait list is about 12 months.
does anyone have any other suggestions for what i could try i dont want to have to take painkillers everyday