🌸 My IIH Story and How I Got Myself Into Remission πŸŒΈ

What is I.I.H?

I.I.H stands for Idiopathic Intracranial Hypertension which is high pressure surrounding the brain, restricting fluid from leaving the brain once it’s reached to the skull. It is also known as a pseudo-tumor with pseudo being defined as false and therefore a false brain tumour. I.I.H has all the symptoms of a brain tumour without the tumour itself. It is a condition with an unknown cause and Idiopathic being the operative word.

Photo by Ashley Williams on Pexels.com

My Story with I.I.H

I believe I had I.I.H long before I was diagnosed with it. As I look back, I had the symptoms that developed over time including a generous amount of water running out of my nose just as forceful as a tap, neck clicking and head and neck pain. At the time, I didn’t think anything of it and I thought it was to do with my cold that I was recovering from and I carried on with life. Fast forward to 2016 where my stress levels became seriously triggered due to sudden traumatic events, I was forced to go to hospital.

It was within about a week or two after the traumatic event that I started to lose my eyesight in my left eye. I didn’t think anything of it and I put it down to a sudden increase in my stress levels. Over time, I started to become worse and my loss of vision was becoming more frequent. I could barely move my head and neck and had severe shoulder pain. It got to the point where one day I was in the office kitchen where I worked, and as I was preparing myself a cup of coffee, I lost complete balance. My head and ears were whooshing with what felt like I was under water, I could hear my heartbeat in my head beating like a drum, my hearing went briefly and I nearly collapsed. I was in severe pain with my head and neck and had to leave work to see my GP.

Having reported all of my symptoms to the GP, he mentioned and strongly highlighted to me that under no circumstances or conditions should I be losing my eyesight. I was referred to the Eye Hospital in London and I had never felt so scared as I did that day. I heard talks & whispers of a possible brain tumour and at that time I had no idea what I.I.H was, let alone thinking it existed. I was convinced I had a tumour!!!

Anyway, the completed eye tests confirmed that my optic nerve was swollen which convinced me even more that I had a tumour. From the Eye Hospital, I was then transferred to another hospital and ended up staying there for 1 week. My hospital stay consisted of a lot of visits from the Neurologist, multiple Neurological tests, CT scans, MRI scans and lumbar punctures. I have to say, lumbar punctures are absolutely awful and I think I screamed down the whole hospital ward that day. They ended up having to do an X RAY guided lumbar puncture which ended up being painless. I wish they did that to begin with!!

After the lumbar puncture, if I remember correctly I was sent home a few hours later. I felt absolutely awful. I felt like I had drank 20 pints of beer for days. My head was throbbing and I couldn’t leave my bed. Ever had the worst hangover? Imagine that, 1000 times over!

After all these tests, it came to the conclusion that I was diagnosed with Idiopathic Intracranial Hypertension. The hospital staff were great and really took care of me. I was put on medication for the foreseeable and I hated it. The symptoms that came with the medication were added onto my IIH symptoms, I no longer felt human. I was prescribed Acetazolamide which caused me to have strange feelings in my limbs and that’s where my tinnitus started. I was sick, drowsy and was experiencing numbness in my hands and feet quite regularly. The symptoms of my I.I.H definitely got worse before they got better after my stay in hospital.

Someone once said to me
“I don’t know how you do it”

I told them
“I wasn’t given a choice”

Remission 2018

I like to call the year 2018 as the year of remission. It took me two years to get myself into remission and I count myself lucky. Although the illness is awful, comparing to others, I had it lucky. There are many I.I.H sufferers who end up having brain surgery, having a shunt device installed to drain the excess fluid from the brain. I count myself lucky, always! It was bad, but it could’ve been so much worse if left untreated!!!

My last appointment was in Sept 2018, I had lost a significant amount of weight, I was active, I had an excellent healthy eating plan, I cut out sugar and salt and it was the best feeling I had felt in a long time. The colour on my cheeks reappeared, I no longer looked drained and I started feeling the sunshine again in my life. I worked myself to the bone to get into remission. I came off the medication way before my final hospital appointment and I only told them I did this after they told me that I am in remission and that I’ve been taking extra care of myself. They were shocked, they were a little annoyed but they were also happy that I was no longer experiencing any more symptoms of the medication or I.I.H itself. I took it into my own hands and this has been a huge wakeup call for me, my body, my health and my overall wellbeing. It was at this stage/chapter of my life that I had no choice but to take action and I have not lost motivation since this time. Yes, it’s been a rollercoaster and I’ve had my ups and downs along the way but I’ve tried to remain as consistent as I can with my health so that I can live a happy, vibrant life.

As a note, I don’t suggest you end medication early or without a doctor’s opinion, I did this for me, I took a risk because deep down I knew I felt great and I personally had enough of the pills.

Side Note

There is a reason why my health is so important to me and this is the reason.

Never do I want to step foot in the Neurologists office again, nor do I ever want to have a lumbar puncture or lose my eyesight. That alone forces me to be healthy and take care of my body. My Neurologist warned me of two things:
1. If I don’t look after myself, I may not be so lucky the next time and I risk going permanently blind.
2. She stated to me she never wants to see me in her office again – this was the best message I’ve ever received 😊

I now find that if I drink alcohol, my symptoms reappear and therefore I’ve quit drinking alcoho. I’ve also stopped smoking and I’m now living a happier, healthier life. I still have my sweets of course, but everything in moderation these days. If I stop exercising for more than 3 days, it’s a guarantee that my head and neck will start to hurt – I guess that it’s dormant and is waiting to spring back to action should I allow it to.

Isn’t it amazing though how our body communicates with us when something isn’t right within?

πŸ”₯ There is always HOPE! πŸ”₯

Do you know anyone with I.I.H? Do you have it or have you suffered it yourself in the past?

9 thoughts on “🌸 My IIH Story and How I Got Myself Into Remission πŸŒΈ

  1. Hello risenwarriorwomen
    I feel lucky to have found this piece of writing today here
    Coz I m also diagnosed with IIH since September’20.
    During my last check up April’21 my dose was tapered from 3 times/ day to 2 times/ day.
    After one month of tapering I have started to experience similar symptoms again but intensity is less.
    I have lost 15 kg since my diagnosis by following a right diet plan n excercise routine but in last one month I have gained a kg or two.
    Am I not able to understand if it’s coz of this I m experiencing the symptoms or did you also experienced symptoms when your doses were tapered.
    I wish to connect to you via email or anything.
    Please leave a reply
    I really don’t know is that why I m experiencing

    Liked by 1 person

    1. Heyyyy, thank you such for commenting and well done on losing 15kg so far. I think it’s more than likely that you’re readjusting to the lowered dose of medication that you’ve started experiencing more symptoms. Keep an eye on them though and if you feel they are getting worse, there is no harm in going back to your doctor to report it. But it does sound like your body is readjusting and maybe needs one time to work on a lower dose. It happened with me too. What medication are you taking? I was on acetazolomide and then moved onto topiramate until I was I remission. I wish you remission as soon as possible as I know these symptoms can be so awful. xxxx


  2. Thanks for replying 😘
    Right now I m on only acetazolamide twice daily…
    But I was on acetazolamide 3 times daily till April.
    I was doing good for 1 month 20 days with the tapered dose..but past a week it has started.. so I m really scared.
    You are true..the symptoms I was experiencing 3days back hav reduced …
    I m scared if the disc edema might have resurfaced back. I just hope it shouldn’t.
    I took a appointment for day after tomorrow at the opthalmologist.
    He is saying me, you should be loosing more weight.
    Now my BMI is 26..my weight now is 70 kg
    I can try to be around 24-25.
    But it’s not possible to reach a weight of 55 kg..
    So please tell me, do I have to keep loosing weight all my life? Are you maintaining a constant weight or still trying to loose more?

    Liked by 1 person

    1. Hello there 😊

      Don’t be scared. I would go back to your doctor – maybe suggest you to increase your dose again for a little while. I think with IIH and these meds, it’s all about trial and error, trying to find the balance.

      My weight has always been up and down prior and post IIH. However, I find that maintaining a healthy & active lifestyle helped contribute to my remission of IIH. From what you have said, I don’t know your height or anything so it’s hard for me to judge but you shouldn’t need to lose weight all of your life – I think it’s just about maintaining your active and healthy lifestyle, eat healthy and nutritious food, keep active and cut out alcohol if you do drink. I’ve stopped alcohol for this reason – even if I was to drink now, my IIH symptoms would flair up.

      In a funny way, I am always trying to lose weight and I know that doctors try to put and blame IIH on weight but for me personally, while it might’ve been a factor and couldn’t been underlying, it entered my life when I had sudden traumatic events take place which I think was the ignition to my IIH.

      My advice would be to keep going as you’re going, I’m no doctor but you seem to be doing very well. Everyone is different and I guess we all respond to treatments and so forth differently. Don’t to make yourself ill and put pressure on yourself by rushing to lose more weight. Just take it slowly. Go back to your doctor definitely for more advice, can they put you on a program to help?

      I wish you all the best ✨ πŸ”₯


  3. Hey..
    Thanks again for responding ❀️
    Each and every word you have written gives me solace after reading.
    Yes, I shouldn’t push myself too hard and stop thinking so negatively.
    I m going for a eye check up tomorrow, just hoping everything is my favour
    Thanks for writing the blog and I m grateful that I found this page.
    Take care of yourself…
    It’s like you are my pen friend..even in this world of so much data n information at our tips..
    We are talking anonymously.
    Feels great

    Liked by 1 person

    1. Hello there again 😊
      I am so glad to hear that my blog is helping you – this is the purpose of my posts to help others from where i have experience.
      I hope that you’re eye check up went ok and that you’re feeling better? Do check in with me to see how you’re doing? If you want to message me privately, you can use the contact form on the Contact Me page and I will respond directly to you.
      Yes it is great and while there is so much data and professional advice out there, sometimes it just helps talking to someone who has actually been through it.


  4. It’s nice to see someones positive story – I’ve spent the last 5 months crippled in pain and am losing the will to live. May I ask what you did to lose the weight? As my weight is just staying the same? My pain is so intense, I am unable to do any physical activity. This illness has absolutely taken the light and soul out of me, and I need her back ;( But thank you for sharing hope ❀


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