Benign Intracranial Hypertension – My Story

I was diagnosed with Benign Intracranial Hypertension when I was just 19 years old and at the time I didn’t have a clue. I remember going to the doctors because I’d had a headache for 4 days and just couldn’t shift it. The doctor checked the back of my eyes and said ‘ are you able to get to the hospital right away or would you like me to call an ambulance, I think you have fluid on your brain’

I genuinely in that second thought is this really necessary for a headache, really? Anyway I made my way to the hospital where they performed a lumbar puncture and informed me that I had quite bad raised pressure inside my head and that they would need to remove it.I was quite young and I suppose a little naive so didn’t really understand what it meant but agreed anyway if I had this done and my headache was gone then it would all be worth it little did I know this would be the start of a very long journey!

So what exactly is Benign Intracranial Hypertension?

Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are stroke-like headache, nausea, and vomiting, as well as pulsatile tinnitus (sounds perceived in the ears, with the sound occurring in the same rhythm as the pulse), double vision and other visual symptoms. If untreated, it may lead to swelling of the optic disc in the eye, which can progress to vision loss.

Benign Intracranial Hypertension is diagnosed with a brain scan (to rule out other causes) and a lumbar puncture; lumbar puncture may also provide temporary and sometimes permanent relief from the symptoms. Some respond to medication (with the drug acetazolamide, Topiramate, Furosemide, others or a combination), but others require surgery to relieve the pressure. The condition may occur in all age groups, but is most common in women aged 20–40

  • This information has been taken from wikipedia

What happened to me?

I had my first lumbar puncture where I was told the pressure in my head measured at 32 , they drained it down quite a lot and I was told I had to remain on my back for 8 hours then I would be free to go home. What they didn’t warn me was that the sudden drop of pressure would leave me in absolute agony to the point I couldn’t lift my head. However within a few days I felt absolutely amazing, the headache had completely gone and I was able to get back to work.  I waited for an appointment with a neurologist who examined me thoroughly and sent me for an MRI scan to double check it wasn’t something more sinister causing the pressure.

Now you have to realise I was only 19 when all of this was going on so it was a lot to take on board, thankfully we had the internet so I could put my mind at ease as the doctors all seemed a bit oblivious to the condition and how to deal with it. Even now at the age of 35 I STILL have to explain to most doctors what I have.

Anyway I sidetrack …. After that very first episode and receiving the results from my scan the neurologist diagnosed me with Benign Intracranial Hypertension and explained to me that it was controlled with water tablets and lumbar punctures, In very serious cases they would have to insert a shunt into the brain to help. This was all very scary I only went for a bloody annoying headache!

This was just the start!

As the years followed from that my symptoms became worse, now instead of just a random headache that had lasted for 4 days I often woke with a headache so bad it felt like I couldn’t lift my head off the pillow. I also gained a weird buzzing in my ears and everything sounded like it was 100 times louder than it actually was. Lucky my sight wasn’t affected but I always knew when the symptoms got bad it was time to go for another lumbar puncture.

At one point I reacted so badly to a lumbar puncture I felt like I had a stroke, the pain in my head was like something I could never describe. I just remember a specialist doctor coming to my house and telling me I would be closely monitored for 24 hours incase I had contracted meningitus!.

Where am I at now?

Believe it or not I’m still not much wiser, I know when its bad and I’ve gone from the occasional waking with a really bad head when it had flared up to permanently waking up and having to lie there for 10 minutes before I can get up. I am prescribed an extremely high dose of a medicine called Topirimate, This has an awful side effect of hair–loss and has really affected me , particularly when it got worse alongside post-partum hair-loss , you can read about that HERE Topirimate is actually an epilepsy drug but is being used to treat my headaches. I have spent years in and out of hospital seeing different doctors, trying medications and having lumbar punctures. I’ve now had so many lumbar punctures that I have scar tissue in my spine which quite often leaves me with back pain.

The doctors are now at a stage where because my last few lumbar punctures have measured around the same amount ( although still classed as high they have been around 25) that they think I may actually have Chronic Daily Migraines, However I am not convinced as I don’t need to sit in a dark room, I don’t feel sick or anything that I would personally characterise as migraines. The only thing that would point to a migraine is my newest and most recent symptom of losing my vision for a short time.

That is a SCARY experience, especially the first time it happened, I was sat chatting on the phone to a friend when I noticed a wobbly patch in my eye, I rubbed my eye to see if it would go but it didn’t then the wobbly patch took over my whole vision where I couldn’t see a thing for about 15 minutes. Then it cleared like it had never happened in the first place. This is where I am now.

My thoughts

More people need to be made aware of just how dehabilitating  Benign Intracranial Hypertension can be. I think because its classed as an invisible illness people don’t realise just how poorly you can feel. Like I said every single day I wake up unable to lift my head off the pillows. I may look like everyone else and ‘normal’ but what I deal with EVERY day most definitely isn’t. I even wrote a post about it Just because you stay at home it doesn’t mean you’re lazy, not every illness is visible

Thank you for reading my story if you have any questions you would like me to answer feel free to ask, I don’t bite


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6 thoughts on “Benign Intracranial Hypertension – My Story

  1. Hi chez I understand completely! I too have a hidden illness/disability. At 21 I became pregnant and after 3months started getting headaches I can’t describe. Double vision too and I went to my option who sent me to the eye hospital. They then sent me to the Smethic Neuro hospital to tests scans. How terrifying it was. They told me due to the high does of steroids that my pregnancy was in advisable. How devastating to have to terminate my baby. Then have Brain surgery for Hydrocephalus. I had a vp shunt fitted. Three months after my shunt failed and I went into a semi coma sleeping 36 hours until an ambulance was called and off to Selly oak hospital I went . 9 weeks in there. I was on a geriatric ward my mom went mad as all the people around my were dying. They saved off all my long hair and took the failed shunt out and put an external one in. Several times I went under to rearrange the position of the shunt. Unfortunately I had a bleed and a left frontal lobe bleed! Which led to a stroke. I lost my use of right side and after coming out of hospital I had 18 months of rehab at headway and moorgreen. I was like a toddler . But I fought through it and it changed my personal. I became more loud aggressive which are the traits for a head injury. If I didn’t have my family & friends and medical staff I wouldn’t be here today. They told me I wouldn’t have kids. 20 years after I proved them wrong! Xxx

    1. Wow your story makes mine sound barely anything. I don’t think unless you suffer with a head condition yourself you fully understand just how hard it can be. Do you still have the shunt? They have mentioned a shunt to me a few times now but every time we think about it everything seems to calm down or the pressures aren’t as high as expected. I hope you’re doing much better now and super well done on proving them wrong about not being able to have children

  2. Hi, I’m 31 yrs old and was diagnosed with BIH (or IIH/Psuedo tumor) when I was in my late teens. I’m not sure if you’d be able to answer this question, but I was wondering, during your pregnancies, were you prescribed any medications for the BIH? I am hoping to start a family but I have read that it is dangerous to take Diamox (acetazolamide) during the first trimester especially. As you mention in your post, doctors rarely seem to understand this illness themselves; so while I obviously ask for their medical opinion, I’d also like to know the opinion of someone who has actually had children with this illness.

    1. Hi, thank you for your message.
      I chose to come off my medications through all of my pregnancies and I can’t be 100% sure but the 2 pregnancies that I lost at 12 weeks were the pregnancies that I remained on my medications although it’s never been confirmed that it was the reason for the loses. I did however have lumbar punctures during my pregnancies. I hope this helps a little x

  3. I’m so sorry you have to deal with this disease. It is a cross to bear alone, like so many other invisible problems. Our only respite, we thought, would be any doctors we come in contact with, and sadly almost all simply brush the mere mention of this disease aside.

    The other problem is our own Neuro doctors. The ones I’ve dealt with do the same thing. They talk about it with me as though it’s no big deal. Send me in for one lumbar after another as though I’m going for a simple xray, or to get my blood drawn. They have no concept of what it means to the patient every time they go for one. No idea that these spinals, especially on chronic pain patients, ADD to lifelong buildup of spinal pain.

    Silently I listen to the screaming caused by the Diamox I have to take for it. The rain doesn’t sound like rain anymore, it has a beating rythem it, like so many other sounds of life.

    And yes the headaches, the hair loss, the loss of so much, all hidden, all silently.

    1. Thank you for your response Linda, It seems not many people know very much about it at all. Even the doctors and there are so many hidden things that aren’t spoken about. At the moment I suffer quite badly with my back from where I have had all of the lumbar punctures.
      I hope you are doing well

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