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Wednesday, 6 February 2013

My life changed thanks Idiopathic Intracranial Hypertension

Day 88....

88 days ago I was admitted into hospital with a major headache. I mean this pain was worse than childbirth, believe me I've been through two labors totaling 45hours and that pain was nothing compared to what I experienced.

I had been suffering from a headache for 7 weeks prior, had just returned from a much needed trip, which was beautiful, only to be in severe agony, excruciating pain that woke me from sleep, had me feeling disorientated dizzy even blurred vision and an annoying sound in my ears that sounded like a wind tunnel powered by my heart in surround sound cinema style.

I took myself to A&E with the hope that they could fix the problem and send me home. After 12 hours between A&E, ophthalmology then back to A&E they admitted me into a ward just after midnight. Where I was given morphine and paracetamol Lol I have to laugh because they may as well not have given me anything. AFTER trying to sleep with my RayBans lol yes its the middle of November however the light made my head hurt more and felt like someone had poured pepper in them. I finally managed to doze off. 

The next morning I hobbled (on my one stick) to the bathroom where I spun and spun. I was dizzy freshened up and returned to my bed. Where a team of doctors were waiting for me.

From that moment things got complicated I was informed I had a condition, they think, called Idiopathic Intracranial Hypertension, for those of you who have no idea what that is in our terms it means "Excess fluid (cerebral spinal fluid) in the head causing pressure on the brain" and the treatment for this will be first stage a lumbar puncture to drain the excess fluid off, then put you on a medication from the diamox family.  What is a lumbar puncture was my first question? Second is there no other treatment? How do you know this is what you think it is?

Anyhoo back to my questions and answers with the team of doctors one of which was a neurologist.
1. A lumbar puncture is a needle that goes between the spinal vertebrae which acts as a tap and drains the fluid off at which point they will measure the pressure. Will it hurt? A little however we will numb the area with a local anaesthesia.
2. Long term yes the diamox should help keep the fluid from building up.
3. Well during my time in ophthalmology I had, had several tests done from drops in my eyes to field vision tests, (previously 2wks before I'd had eye scans, MRI and Photos taken of inside my eyes and the optic nerves/discs) tje results of which said I had Paplidemia (swelling of the optic nerves and discs,  goibg untreated can result in permanent loss of vision) fortunately for me mine was caught early so risks of long term damage at that stage is minimal.)
4. What if it doesn't work? It is pretty safe to do repeat the produce several times as much as everyday if need be. We assure you we are doing all that we can to help. 
5. When are you going to do it? Asap probably in as little as 30 mins.
6. How long does the procedure take 15-30 mins tops including prepation time.

Wow is all I can say within 15 minutes this team of 3 doctors come in with a kittle silver trolley and say. Let's begin. Im like what right here not in theatre nothing. Its perfectly safe to do it.
Yes I was right there on the ward. I can still feel the butterflies anxiety and everything else buildung up. I was on my own. My mum was at work, , and my closest friends in the area were at work. 

I had to curl up on my left side as best I could in my condition which was extremely difficult considering I have a slipped disc which is contracting on the nerves in my right leg. Im laying on the egde of the bed with a pillow between my thighs and a movie on my eeepad trying to distract myself from what these doctors are doing behind me.

The first needle goes in. Omg painful flashbacks of the Failed epidural spinal injection I had in November 2010  to reduce the swelling in my spine. I had already vowed never to let anyone touch me again. Sigh! I jolt and get told to keep still and its only the anathesia. A couple more stabs later I'm asked "Can you feel that" Yes! By this time I'm trying to find that centered peaceful space within me. Ha! I was in too much pain from my back to my head and back again. It was a gladiator battle for dominance in my pain receptors. 

Ok we're going in Ahhhh I bite down on my pillow as they penetrate my spinal column and touch my nerve cords. With tears streaming down my face. In the distance I hear mumblings then a second pair of hands prodding and roughly handling my body as they search for the right spot. They try again. This time they pierce a nerve and I scream out. I hear opps let me try and go get dr blah. .. names I never heard. Then one doctor chick comes and stands in front of me and says "your doing really well, are you ok" fortunately for her my lazers are hidden behind my rays otherwise she would have been sliced and  diced right  there on the spot. Another stab and this one sends a fire of pain down the inner thigh to my foot. I scream again as on the way out the needle scraps another which ripples like a tidal wave in my vagina wall. Then I feel nothing on my  left side. However I feel a gush of heated liquid on my back. By this time my tiny cubicle was full of medical staff. Loads of raised whispers. With the doctor chick trying yo reassure me.

All I could visualise was my back bleeding out. And a pain so great the voices were growing more and more distant as I began to passout. An hour amd forty-five minutes later I hear we better stop now we've caused her quite a bit of distress. Did anyone get a pressure reading? No.

Are you okay? No I can't fell my leg.  Tears streaming from my eyes, my pain levels and blood pressure all high and I couldn't feel my leg. They call back the more senior doctor. Oh did I mention they were all junior Drs. They all roll me on my back and he examined me. I couldn't feel a thing move my leg or even wiggle my toe. 
I send my mum a one line text I need you. 15 minutes that felt like 15 hours later my short lioness walks in as they are still trying to figure out what they did wrong and comfort me. She roars and attacks everyone of those doctors. Demanding answers as to why her cub is so distraught she can't put a sentence together.
For the rest of the day she stayed with me until I was allowed to sit up again after 4 hours. I then had to suffer the ordeal of having to have my legs lifted to use a bed pan. Could the pee come out? No. As my friend calls it I was batty shy.

Skip forward 24 hours

I was transfer to another ward still legless in pain and transferred to another ward where I was given further mri scan n ct scan to check what was going on damage wise.
I was informed I needed togo through the ordeal again.

Attempt number two was successful in relation to gettinga pressure reading which came up as 37 (pressure average is between 16-24) after draining fluid pressure crept back up to 28 which is where they left it however I was still in a lot of agony. 20 minutes into recovery time I was visited by Perry the so called neurologist who told me I needed to lose some weight and dragged me out of the bed and made me stand. All my weight on my weakened right leg he dragged me two steps forward my left leg dead weight in front of my 12 year old daughter and my friend who got the hospital just as they started the procedure.  Yes I wanted to shot him a box and jook out his eyes. 

He tells me there's nothing wrong pushes me back to the bed and walks out.

Onthe 3rd day of more tests my vision is still deteriorating and my head is still in agony. Im informed I need to do another l.p. as instructed by Queens Sq who they were still trying to get to accept me as a patient. L.p. number 3 is a failure and they book me into have the procedure done under xray. The pressure reading is still high. The dr tells the radiologist that its ok for them to Take at least 30ml. So yet again they graze my nerves making me scream again. Ive never screamed so much. He drains 10ml and said  he not doing so much and sendss me on my way. Within an hour as I thought the pain couldn't get any worse it did. Oh my god I couldn't physically move my head I lay in place for hours my brain felt like it was in a vice and was being forced out every opening crevice. My face felt like it was being vaccum sucked into my cranium. I was laying still and the world kept spinning, my vision was a blur and to top it off the doctors kept insisting on poking and prodding me and wanting to test my sight. WHAT HAD THEY DONE TO ME? The pain wouldn't stop they were trying to pump me full of pills that were regurgitating up and down still in one piece my body was no longer fully functioning. I couldn't even drag myself to my comode without being sick. That first weekend of December 2012 was horrific undeniably irrefutably the most excruciating and devastating of my life.

I wanted to see or speak to no one except my dad I remember throughout that traumatic weekend I needed to be curled up in my daddy's arms with him saying it was going to be ok. Unfortunately for us everything that could go wrong did go wrong and he couldn't get to me. He's 100 miles away. My mum children family and friends wanted to see me and I hated knowing that they would see me in that way its traumatising for everyone seeing a loved one in so much pain but not being able to do anything about it.

I later found out I had gone into a low pressure  state and that's why I was so sick. I spent a further 6 days in that hospital before I was finally transfered to queens square in what felt like the longest car journey ever. With total dizziness blurred vision and field vision furthest distance to my half stretched hand I was feeling like u had the worse hangover ever.( Ive only ever had one of those in my life 6 years ago for my 25 birthday. That might be a blog for later  lol)

Upon arrival  at queens square I was taken off all but ine ofmy medications I was being pumped full of at north mid. Including the diamox which was still reducing my CSF. Arrggghhhh imagine it was bad enough how much they had reduced my CSF with the repeated LPs but to continue give me drugs that were msking me feel worse. 

Within 3 days the colour had worked its way back into my skin. My world wasnt spinning out of control as much, I was able to eat more than just tinned fruit and juice. I was now drinking lemon water by the litre and my vision was slowly improving. The swelling around my optic nerves and disc was slowly reducing. The silver lining was beginning to show.

After a week in Queens square  and a total of 24 nights under the care of the NHS I was released to the fresh polluted air of the London streets amd on my way home.

Will I have a another episode.... unfortunately 4.5 weeks after being released and just a week of tolerable ij the background minor bruising headache I had begun to throb and stabbing pains were back. The electrical shock currents were racing through my frontal lobe and the air bubble pressure feeling was back smd kicking. 

6 weeks after the release from hospital I finally had my follow up and was given the news that I needed to go back the diamox as all the symptoms including mild Paplidemia was back and we need to attempt to contain the problem before it spreads.   

8 weeks after release im having foggy days, photosensitivity,  pain and sleep is out the window.

Im having side effects from the diamox like peeing for Britain,  constant thirst, tingling numb feeling in my hands and horrible dry feelibg in my throat.  Gggrrrr sharks or piranhas comes to mind I really don't like taking medicines nor do I like yhe thought of lumbar punctures or severe paralysing pain again. 

How are my legs? Well I've been working with E Hands on Health to rebuild the muscles in my legs, and release the tightness in my shiulders and back in order for me to learn how to walk again. We are unclear how long it will take to regain strength for me to balance unaided.  At the moment I walk with a stammer and my legs have been nick named jelly legs as they shake and are extremely weak when  I take one single step.

Ive fallen up and down the stairs fallen getting out if bed.  It doesnt help that I have tunnel vision amd can't see depth differences. 

How long before I'm fixed who knows.

For the record I'm 5'7 with large boobs, a medium sized waist and I have got curves. When asked the other doctors if I'm obese they all looked at me like I had an alien coming out of my forehead.  So not what they call obese which is a common denominator of sufferers with IIH.

For more information about Idiopathic Intracranial Hypertension visit

For information about dealing with sightloss visit the RNIB

If you live in the london area and are in need of physiotherapy, sports therapy or an aromatherapy massage in the comfort of your own home contact E Hands on Health direct visit

I am now having to learn how to live with the changes in my life, the not knowing if I will get better? how long it will take? If ever and just having to deal with rebuildung my life aroud my poor eyesight,  damaged legs and constant daily headaches. Imagine having a constant headache/migraine since the 8 october 2012 to date with no sign of it letting up.

At least now I'm down to three regular medications twice a day with one additional pain killer as and when required. Although honestly the pain killers aren't for the head just for the constant pain in my bsck supported by the constant spasms, shooting pains and burning sensations I get from my slipped disc. The asthma, the carpal tunnel, severe insomnia and raynards are all a part of my life and I'm trying so hard not to allow these conditions to get to me.

Although I'm going through all this I'm truly grateful for the blessings I have in my life, my children, family,  friends and all those thst have truly been here for me throughout the good and bad times. Especially the past 4 months. There are people worse off than me but without a doubt as long as I still have air in my lungs I will not give up. 

I have met so many encouraging people in my life that have and are today still supporting me in this challenging special body I have.

Thanks for reading if you want to discuss and just have a chat I'm here to listen and converse.  If your an IIH sufferer and know what I'm going through I would love to hear from you. Please drop me a line.