My Experiences of IIH

This post is proving really hard for me to write. I wanted to write about my experiences over the last couple of months as I’m getting asked a lot of questions about my condition and what I’ve been through, so here goes…

On February 23rd 2017 I was diagnosed with Idiopathic Intracranial Hypertension after spending a week in hospital. It began in the summer of 2016 – I started getting weird headaches especially when it felt humid outside or the temperature suddenly changed. I had a period of around two months where I suffered from short term memory loss. I really struggled remembering the simplest of things such as turning the oven on and off, programmes and films I had watched and much more.

In October 2016 I started my new old job (security) and I started getting these really strange large black discs in my vision. It was almost as if I was looking at my own pupils. A colleague advised I may have something called floaters. They would disappear and only return for a few hours and go again, very weird! I struggled on with this until December as I was busy pulling extra shifts and covering holiday before Christmas.

I thought maybe it was my 2.5 year old pair of glasses making my vision bad, maybe I needed an eye test and new glasses?! I booked an eye test with Supersavers and they said there was a slight change in my left eye but there was nothing to be really concerned about. I explained my weird vision problems and they made me do a field of vision test. I missed a few markers but again – they were not really concerned.

my vision and the black discs did settle down for a little bit over Christmas. They were still present but not quite as severe. I had holiday from work and spent some quality time with my family and my boyfriends family which was lovely.

I struggled through January with even more symptoms. Every time I coughed, sneezed or bent over, I felt this really strange pressure feeling in my head and I would lose my vision temporarily. I became sound sensitive and extremely light sensitive. The headaches would become worse and worse. I went to see a Doctor, he examined my eyes and asked me about how I was feeling. He wanted to rule out migraines so he put me on a high dosage of Aspirin for three weeks. The Aspirin didn’t even touch the pain… That’s when I knew something wasn’t right.

Fast forward to Friday February 17th 2017 and I returned to see the same Doctor. He again examined me and checked my eyes. This time he noticed something unusual and that something was wrong. He said that the retina wall should be sharp and defined and mine wasn’t. He also noticed some bad swelling in my right eye – known as Papilledema. He immediately phoned the on call Neurology Doctor at the hospital and discussed my symptoms with him. My Doctor then made an emergency referral to the Neurology Clinic for me and signed me off work for a further two weeks. At this point I was worried, scared and anxious about the uncertainty of it all and not knowing what was wrong with me. Luckily my Doctor was very helpful and reassured me that he has only ever dealt with three cases of brain tumours in women under 30 years of age.

That weekend was a nightmare. My symptoms got so much worse and my head pain was a solid 10 on the pain scale. It felt like my skull was going to break and my brain was going to eject itself onto the ceiling. I felt like i’d been hit by a train, it was awful. Saturday evening I had a raised temperature and struggled to sleep through the pain. On Sunday evening my boyfriend and I made the decision to go to A&E as I was being sick from the pain and I felt like someone was stabbing me behind my eyes.

We got to A&E and I was seen pretty quickly as I was put through as an urgent case. I was first seen by the triage nurses who assessed me and decided what to do with me. I was then seen by another set of advanced nurses. They took some of my blood and inserted a cannula into my arm. I had an ECG just to be sure there was nothing wrong with my heart. An hour after that I had some more blood taken and I was seen by an A&E Doctor. He tested my reflexes and did some silly vision tests. He was concerned about my high temperature and my white blood cell count was higher than normal. He sat me down and said that it as possible that I have Meningitis or Encephalitis and that unfortunately means that I would be admitted to hospital as a patient. The nurses immediately started me on anti viral and antibiotic IV through a drip. I felt so sick at this point and there were no beds. I had to sit in the triage assessment room in a chair.

It was now 01:30 in the morning and my boyfriend had to go home as he had work the next day. I felt so scared and alone but I knew I was in the right place and we had done the right thing. At 02:30 a hospital porter came to whisk me off somewhere else. We arrived at the AMU ward and I was surrounded by five very elderly poorly ladies. I managed to get 45 minutes sleep that night due to having my observations done every hour.

At last a Neurology Doctor came to see me / beat me up as I like to call their tests. He used a reflex hammer to test how reactive my body was and then examined my eyes. He advised me at this stage they were using the “Process of elimination” to rule out things. I was still being treated for both types of meningitis and exotic and rare disease. They sent me for a chest X-Ray which came back fine.

At lunch time I was told I had been scheduled in for a CT scan in the afternoon. I was a bit nervous as I’ve not had one of those before. It’s such a strange experience! First they laid me on a table / bench and it moved me into a circular machine. They took a plain image. They then injected me with a dye that would highlight any abnormalities in my head. I was warned by the assistant that I may experience some funny sensations but oh my… As soon as the injection had been done I got this metallic taste in my mouth. Then I felt like I had wet myself… It was weirdly pleasant though. Then came the hot flush from my toes all the way to my head. This lasted around five seconds. They then took another scan to compare it to the one without the dye.

I was taken back to the ward and a different Doctor came to see me. He informed me that my scan came back clear which indicated Idiopathic Intracranial Hypertension. I was baffled! The Doctor advised that tomorrow I would have to have a Lumber Puncture / Spinal Tap – 1. So that they could test the Cerebral Spinal Fluid for Bacterial and Viral Meningitis and 2. So that they could read my spinal fluid pressure and also so they could drain some spinal fluid to relieve the pressure in my head. Petrified was an understatement! I had all sorts running through my head and I researched the procedure on my phone.

That Evening I was moved to the Neurology Ward in my own private side room. It was bliss compared to the AMU ward and having all the noise and brightness of the patients and lights. I was still in so much agony and was given various different painkillers which made me incredibly drowsy. I had at least 6 hours sleep and then the panic and fear started to set in about having my Lumber Puncture.

On February the 21st 2017 I woke up drowsy because of all the pain killers and the various different medications in my system. It was a good job really as I was so frightened. At lunch time a man called Christian came to see me to explain the procedure and to get me to sign and agree on the paperwork. He said the trolley was being prepared and it would happen in around twenty minutes. I was sweating with fear and taking deep breaths trying not to panic. I did a meditation in my head to try and calm myself. The trolley and the team arrived. It was time.

First Christian and Laura got me into position which was hard work because I was so tense. They laid me on my side so they had good access to my spine. He asked me to be very vocal with him and to tell him which side I can feel pain. He gave me my first injection of general anaesthetic and I could still feel him scratching my spine. He then gave me another one and I could still feel it. He gave me a third dose and finally it was a dull pressure feeling. The needle was going in. Suddenly my right leg started twitching and violently jerking in pain – I shouted “Left Christian”. He then moved the needle again and this time it was left. This went on for an agonising twenty minutes. Christian got called away and Laura took over. Laura was so nice and friendly. She said “Sometimes you just need a woman’s touch” and got the needle in the right place within five minutes and it didn’t hurt as much (no offence to Christian haha). They then attached a device which measures the pressure in your spine. A normal reading is around 20-24. My pressure reading was 35.5. Bingo. She then drained some fluid into test tubes so that they could be sent to the pathology department for screening. She also drained some fluid as she said it may relieve the pressure in my head.

After the procedure I was sore and feeling drained and exhausted. I had severe headaches and a weird feeling in my neck, shoulders and spine. After a Lumber Puncture some patients experience low pressure symptoms. I was told to lay flat and that I would be put on some anti swelling medication which meant I had to drink four litres of fluid a day!

The next day I felt a bit weird still but better than yesterday. I had a lovely shower and that alone exhausted me. I got back into my hospital bed and the Doctor Laura came to see me. She said the Bacterial Meningitis had come back clear however the Viral screening would take a couple more days. I was still being treated for viral meningitis.

My mum and my boyfriend visited me every day and that kept me going knowing I would see them in the afternoon and evenings. They were AMAZING. My mum sure knows how to pack a hospital bag!!

The next few days were a bit of a blur. I was being given high doses of painkillers as I had a low pressure headache following my lumber puncture and having a shower the day after didn’t give it chance to heal properly – I was in agony. That’s when my chest infection decided to join the party shortly followed by The Flu and Norovirus.

My CSF screenings came back as fine for Viral so they were content that I didn’t have meningitis and that’s the day they diagnosed me with IIH. I just wanted to go home and spend some time recovering with the help of my family and my partner. I was moved elsewhere on the neurology ward for one night and then I was discharged. One of the Doctors suggested I might recover better away from hospital germs and I could get some peace and quiet. That evening my boyfriend collected me and brought a wheelchair to the ward. I’ll never forget that feeling of the freezing cold breeze from outside hitting my face after spending so long in a dry and hot hospital environment.

My mum then collected me from our house and took me back to Suffolk where she spent a couple of weeks nursing me with the help of the dogs of course!

Today – It’s been a month since I was diagnosed and I am having weekly appointments with my Doctor. He has had to increase my medication as the pressure seems to have built back up already and my vision is showing no signs of improvement. Some days I have good days and some days are damn right awful. I just have to keep going and push myself and know when I must rest. I had an epic mini victory the other day, I managed to go for a little walk outside on my own for the first time since going into hospital. It’s surprisingly difficult with double vision and blindspots, especially crossing roads… The next day I had to spend in bed recovering.

I’m always going to have this condition and I hope I will go into remission soon. Unfortunately it’s a rare condition that most Doctors don’t know much about and not much research is being done to find out more about it and what causes it. I hope that one day more research is done and they can find a cure. Until then myself and other IIH sufferers will continue to plod on, follow the advice of our Doctors, try to stay positive and hope for the best. The charity behind the condition offers such amazing support to us all and with their help, I don’t feel so alone and it’s great to talk to others who experience similar things to me.

A huge thank you to my Mum, Dave, and my boyfriend for looking after me and supporting me in every way possible. Also a big thanks to everyone who sent me well wishes, lovely messages, gifts, flowers and beautiful cards. It cheered me up so much 🙂

Peace Out,

Jess  X











One comment

  1. Wow Jess, this was so hard to read. For such a young woman to go through this must’ve been really scary. Lucky you have lots of love and support to help you through x


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