Idiopathic Intacranial Hypertension


- Blue and Green ribbon for IIH. 

 I hope this makes sense, it's diffcult to explain and put into words.

Idiopathic Intacranial Hypertension (IIH) also known as, Benign Intacranial Hypertension or Pseudotumor. Is a rare brain disease, every 1 or 2 people in 100,000 people suffer form this rare disease. I am one of those people. The pressure around the brain builds up and causes headaches, nausea/vomiting, tingling/pins and needles, pulsatile tinnitus (buzzing in the ears, which happens constantly to me!), vision loss/double vision or blurred vision. The left side of my body also goes numb sometimes and feels weak. Neck ache is another symptom. Click here for more info on Idiopathic intracranial hypertension.

(Can I just say, usually when I am poorly, I just get on with it, I don't go to the doctors unless I HAVE to! I've never suffered with headaches or any other serious illness prior to this. So please bare this in mind) 

I started to suffer extremely intense headaches in 2010, I was twenty five years old. I kept going to my doctor and the out of hours surgery/emergency doctor but they put it down to diet/stress/lack of sleep and just generally feeling run down. I KNEW it was more than that but no one would listen. In September 2010, about two months after the headaches started (maybe even a little longer) I started suffering with blurred vision, I went to A&E only to be told "This is not a doctor surgery, you can not come here with a headache" I knew it was much, much more than "just a headache". That happened twice. At this point I was vomiting and constantly had a very bad headache (I can't even explain the pain. It was worse than childbirth). In October I went to the opticians as I needed someone to see that there was indeed something wrong, I knew I didn't need glasses. I was in there a long time. I couldn't complete the field test, imagine seeing double the amount of dots, along with black dots! It made me feel sick and ill. Eventually he looked in my eyes with all different lenses, ummed and ahhed.. A LOT. He then proceeded to tell me that there was something very wrong because he couldn't see behind my eyes. He couldn't see anything except everything was really swollen. He gave me a referral letter to my GP. I didn't have an appointment. I went straight there, I couldn't see a darn thing, good job it was only five mins walk! I handed the letter to reception and my GP called me straight thru. He took one look at me and knew I was very ill. I explained thru my tears that I was really scared, I couldn't see properly, I felt incredibly sick like I was going to pass out. He told me to read the wall chart. I couldn't read it. I couldn't even look up because hte pain in my head was SO bad. He had me lay down and gave me an injection to stop me puking (it didn't work!) He then said I needed to go to the hospital right there and then, I told him I'd wait for my mum to collect me from the surgery as it wasn't as simple as that. I had to collect my kids from school! My daughter was asleep in her stroller (thank fully ASLEEP!) I called my best friend who was there within five mins. I vomited  thank fully in one of those sick bowls (they look like hats, lol!) and couldn't stop. 

 My doctor had diagnosed me with Papilledema (eye condition), I asked what the chances of a brain tumor, I knew I had most symptoms of one. He didn't want to tell me but I could tell by the look in his face. I was so frightened. Eventually my mum came and we went and collected the kids and off to the hospital we went. With me puking some more. My mums partner looked after the kids. After a lot of waiting around, tests (blood tests, eye tests etc) I was eventually admitted to hospital. I had a CAT scan, that came back all clear. They gave me pain killers, nothing worked. Eventually I had oramorph (morphine in medicine form). That worked! Oh my goodness, did that stuff work! I was pain free for a while for the first time in MONTHS. I still felt poorly though. All the blood tests came back fine. I still couldn't see properly.. my vision loss/blurred and double vision lasted weeks. After a couple of weeks of being in hospital and all tests kept coming back fine. Finally a neurologist came and saw me up on the ward, she told me I needed an MRI scan. The results of that were clear of tumors, thank goodness! However, I had a hemorrhage on my brain which had caused all my optic nerves and everything swell. They realised then that I had  this rare brain disease called Idiopathic intracranial hypertension. It wasn't very well explained to me, just that it was rare and not many people suffered from it. They gave me medication Acetazolamide/diamox (I hate the side affects from these tablets!) to control the pressure on my brain and I had to have a Lumbar Puncture/Spinal tap (If you don't know what that it, I'll let  you google it as some images can be quite graphic) to drain the pressure/fluid form around my brain. They explained that there isn't any cure and they couldn't figure out the reason why it had happened to me because it usually happens to people who are pregnant (usually first trimester , on the contraceptive pill or who are overweight/obese. I didn't fit ANY of those categories. Although my neurologist told me to lose weight, even though I weighed around 8.5 stone (at the most!) When they did the LP they couldn't measure how much pressure was around my brain because the amount there was well over 100 - off the scale! The LP was not the best experience.. In fact it was awful! I was sent home after a day or so. I felt a bit better. The headache wasn't as bad. They sent me home with my medication as well as Co codamol. The doctors thought that it was a one off occurrence and unlikely to happen again because I don't fit any of the "causes" that cause IIH. 

They couldn't have been more wrong. 

Every six months until Feb 2012 I had a Lumbar puncture as the pressure had built up. The last LP did me more harm than good. I ended up being rushed to hospital a few days after because the pain in my head was so bad. That was apparently a LOW pressure headache! EEK! I was only in there just under 48 hours, I was prescribed stronger pain killers "Naproxen" and I also have Nortriptyline. (and currently trying Gabapentin. They help a little. (And FYI: I did take my neurologist's advice and lose weight.. despite the fact I didn't need to. And no, it didn't make any difference. Although, it DOES affect everyone differently. You should always take your doctors/specialist's advice! Always.) I've also tried other medication such as topiramate. I still suffer with bad vision and headaches - I find it hard to judge the distance between two objects. I find it hard crossing the road because I can;t tell how far away the car is that's coming towards me and sometimes I can't even tell if it's moving or parked there! I can't see indicators until they are right on top of me! Good job I have a good support system and people to help me, otherwise I don't know what I would do. I lose my balance a lot - I fall up the kerb or the stairs (some would say clumsy!) Sometimes I bang into door frames or I'll put a glass down on the side and completely miss. Some days though, I'm fine. 

 Just lately though I have really been suffering bad headaches daily, the numbness in the left side of my body is worse than it was a couple of months ago, the tingling/pins and needles is worse than ever and the ringing in my ears is constant! I know that the time is coming where I need another lumbar puncture, I can feel the pressure building up... I can't explain it in words exactly but if you suffer from this then you may understand what I mean. My vision isn't THAT bad but it's been a lot better! I know that I'll need another lumbar puncture in the very near future, I do know it'll help but I am petrified of ending up being admitted to hospital like this time last year.. I know though no matter what, a lumbar puncture in the long run is the only option for me. I also have to have regular blood tests to check my potassium level. 
I've always suffered with bad anxiety (and depression in the past) but now I have IIH it seems the anxiety is even worse. I think the IIH makes me anxious because I never know how I am going to feel. I'm not allowed to take any medication for anxiety, they can make IIH worse. 
I have regular eye tests and see eye specialists, my eyes have to be monitored very closely as if my brain hemorrhages to that extent again I may lose my vision completely. 

I felt totally on my own until I discovered the IIH foundation. It's helped knowing I am not alone and there are people out there who DO understand what I suffer with on (mostly) a daily basis.

Some people may have a shunt instead of regular Lumbar Punctures. I don't know if I'll ever have a shunt or not. 
Medication does help control it. I'm thankful for the NHS otherwise it'd cost me a fortune for all the medication and treatments I need. I'm also grateful for G.P and Neurologist, they are both very supportive and of course I am so, so thankful for all my family and friends that help me when I need it. I do have a really good support system, I'm really lucky for that! 
I find that laying totally flat in a dark room, with something cold on more forehead helps. 

Some people have asked me in the past, that if I was diagnosed sooner would I still suffer with IIH? The answer is more than likely, yes. If the doctors and nurses that told me it was just stress/diet/run down had of listened to me, then no I may not have suffered as much but at the end of the day, it's a rare disease, honestly they wern't to know. I don't hold any grudges as such but I do wish they had of listened to me sooner. I know my body better than anyone. 

(Lots of handy links now)

I haven't wrote this post for attention or sympathy, I've wrote it because it's rare disease day (Please click! see how you can get involved!) on the 28th February. It's also Brain Awareness Week 11th-17th March. 
 I've wrote about my experience to raise awareness for IIH, If you would like to support/donate or if you suffer with IIH and need support, please click  here. You can also follow IIH Fdn on Twitter and Facebook

And to all of you out there, that suffer with IIH (and other rare diseases!). I am sorry for your pain :( You are not alone. I understand, along with everyone else who suffers with IIH. Just because some things work for me, doesn't mean they'll work for you. Always take your professionals (doctors/neurologist/specialist etc) advice! 
Feel free to contact me if you would like to share your experience or just need to have a chat I'm a fab listener and I will always support you. You can contact me here. 

Thank you if you read all of this. 

Sarah xoxox 

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