the experience I wish I never had to have (My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri)

Member Name: hannahrach

Product:	My Experience of Benign Intercranial Hypertension/Pseudotumor Cerebri
Date:	07/01/04 (1451 review reads)
Rating:

Advantages: there are none with this condition

Disadvantages: the pain, the suffering, the not knowing

Benign Intercranial Hypertension
Hannah?s Story

For me it all started with the headaches, mild headaches behind my eyes and at the back of my head that never seemed to go away. Over a two month period the headaches began to grow is severity. Although at this point, I did not feel they were enough to go to the doctors. During the time when I was having these headaches I noticed a pulsating feeling under my left eye, I put it down to stress. Then one day while driving my sister to school I lost the vision in my left eye for a period of about 10 minutes, naturally as a pretty healthy 20-year-old at the time this scared me terribly, but still I didn?t see my doctor. Over a period of two weeks I lost vision in my left eye again and had periods of blurring in my left eye. Still I did not see a doctor putting the headaches and vision problems down to stress. But then waking up one morning my right eye was pulsating and my vision in that eye was blurry. After dropping my sister at school I went to our local Optometrist, he did quite a few tests and told me that my optic nerves behind each eye were so severely swollen he was shocked that I could see at all, he said what he thought I had was severe papal oedema in both eyes, he told me to go straight my GP who could forward me on to an opthemologist, this I did and two days later was sitting in the eye specialist waiting room with my eye?s full of drops, waiting to be tested. He too agreed that I had severe papal oedema in both eyes and said that he believed that I had a rare condition called Benign Intercranial Hypertension (BHI), he referred me straight away to see a neurologist. After waiting five weeks for my appointment to see my neurologist I was told that I should have been told to see him immediately. He to believed that I had BIH and booked me in for a Lumbar Puncture (LP) the following morning, he also prescribed me with a fluid tablet Diamox, to help try and reduce fluid retention in my body. Unfortuna
tely for me my body goes into shock quite easily as we found out after the first failed LP, since then I have had to have them under x-ray to try to minimise the stress put on my body, this to however doesn?t always work, as on numerous occasions I have been unable to walk properly for several days afterwards. On several occasions I have had Cerebral Spinal Fluid (CSF) removed, which has left me with Low Pressure Headaches, which basically means the doctors are removing fluid from my spine and my body needs time to adjust to the changes in fluid pressure hence the low pressure headaches.
Since the time of my diagnosis I have found that I can?t remember small things like dates and times, and even occasionally peoples faces or names, although this has only happened a couple of times, I have also found that on occasions my hearing has been affected, were it almost feels like my ears are submerged in the ocean and I?m listening to the waves.
Unfortunately after my last LP I became incredibly ill, when I got home from hospital I did what I always did which was to go and lay down and try and rest, this I normally did for maybe the rest of the day and maybe the morning after the LP, but this time my Low Pressure Headache was different, were normally I would feel the pain around my eyes and at the back of my head, this time is spread throughout my head and down the top of my neck. I couldn?t move without felling severe pain throughout my upper body, I couldn?t stand light or noise, I could not eat or drink as anything I tried to eat or drink promptly came straight back up, I was also suffering hot and cold flushes. After the first day of this mum called my neurologist who pretty much dismissed her and said it was just a low pressure headache, the following morning, three days after the LP in which time I had not eaten or drunk anything and could not even take pain-killing medication without bringing it up again, mum rushed me to my GP, he gave me an anti-sickness i
njection to hopefully try to stop the vomiting so that I could take fluids but told mum to watch me closely and is she felt I wasn?t improving get me to hospital. The injection didn?t work; I was still vomiting the next morning. My mum and sister tried to help me out of bed to put me in the car to take me to hospital but my body started going into shock, they called an ambulance. Half an hour later I was entering the emergency ward at the hospital. After what felt like hours of waiting the doctors started giving me IV fluids, even having the fluids pumped into my body it was going into shock, my hands almost became spastic in look, almost claw like. After having three litres of fluid pumped into my body in a period of one hour the doctors sent me home. Thinking back now, had we got to the hospital the day after we did the outcome of the whole experience could have been incredibly different, I was that sick that waiting one more day I could very well have died. The following morning we went back to my GP who gave me medication for the headaches, that were still so severe it felt like my head would explode. Slowly after being so severely sick for eight days, having not eaten or had anything to drink also for eight days I started getting better. I lost a whopping 5kg of weight in just 8 days, and although I?m still having headaches and know that I still have to have even more LP?s I?m glad to say that this whole experience has taught me something. I?m alive and lucky to be so, life is a very fragile thing indeed and I am going to use every minute now to make the most of the time I have on this earth, who knows if I may get sick again like before, hopefully not, as even today I am still recovering. But all I know is that without the love of my mum and dad and two sisters and grandparents there is no way I would have had the strength to pull through. I hope that by reading what I have been through will help others to get through their similar experiences.
Finally all
I can say to you is if you have similar symptoms, go straight to your doctor, this condition can cause permanent blindness and in some cases it can be fatal. You know your body, if you think there is something wrong don?t do what I did and put it down to stress, hopefully that?s all it will be but I know for me I will never be putting anything down to stress again. Learn from your body, it knows what?s going on and if something?s wrong it will tell you, don?t ignore the signs like I did.
I wish everyone the best of health in their lives.

Summary: