IIH

IIH > Idiopathic Intracranial Hypertension.

Idiopathic > Unknown origin.

Intracranial > The space around the brain/within the skull.

Hypertension > High pressure.

IIH is a neurological illness that mimics a brain tumour. It gives all the signs and symptoms of a brain tumour, without the tumour being present (there); hence this condition also being known as Benign Intracranial Hypertension (BIH). As it isn't malignant, as no tumour is present.

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There 's currently no cure for this illness, but  there are multiple treatments available:

• Weight loss - Obviously if you're over weight it would benefit you to loose some pounds. I've currently lost nearly 8 Stone & still losing.
• Exercise - That is combined with healthy eating. I go to the gym mainly for the weight section now! Yup. I lift 💪 I'm with the guys - normally the only girl - in the iron jungle! 😊 Lifting is my most favourite thing to do. I use to be scared of another "brain pop" but pushing limits, getting stronger, seeing tone/muscles build is one of the best feelings I've ever experienced. 
• Obviously as well as lifting it is important to look after the heart. This calls for cardio of some sort. I do a mix of row, bike and run... Now, I hate running with a passion! However the challenges I do call for me to do this horrid form of execution... oops, exercise! 😂 One thing I shall say is to ask your medical practitioners first and then speak to advisors at the gym as to what to do and what not to do if you are still suffering with IIH or are unsure on what to do. It's a very personal chronic disability/illness.
• Eat clean - Once again, goes well with the above. There are certain foods that can trigger headaches that aren't all that good for IIH sufferers. I have been eating a fair amount of salad and white meats, fish, veg. Gone completely crazy with salad actually. I do love me a salad! Also been eating less bad carbs and more good. Avoid too much dairy, it can cause bad headaches, unrelated to IIH.
• Tablets - My form of treatment. There are different forms of medication that everyone with IIH have. I started on Diamox & Topiramate. I'm now just on Topiramate. I am now at a stable dosage, that has allowed me to come off the painkillers most of the time. Its only once or twice a week that I will add a painkiller into the mix.
• LP's (Lumbar Punctures) - My other treatment. I have had well over 28 (failed & successful) How many you have depends on your pressure levels & what  your consultant feels your treatment should involve. I now don't need regular LP's as I am in remission (YAY)! However should I have a pressure issue again, I would prefer having LP's & meds rather than the following...
• Surgery - I got this suggested when I was really quite unwell (2 days before my 25th Birthday! Fab) I got recommended either a shunt or stent. As far as I am aware these are the most used surgeries. Like I said, IIH doesn't have a cure, so from what I gather you would need to get replacement valves, cleaned tubes, etc. Over time. It is however meant to stop you have to keep going for LP's all the time and taking drugs all the time. As it acts as a constant LP/drain.

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If I can remember correctly (slight memory issue) these are the symptoms I had:

• Headaches - ones that didn't go away with pain killers & they seemed to get worse as time went on - eventually this is what landed me in hospital - I had a horrific head pain - I would have shot myself if I had of had a gun - when I was in hospital even morphine didn't touch the sides. All the morphine managed to do was make me pass out, be sick/bile/blood, choke on my what I bought up & the pain just did not go away. I was till screaming in pain, every time I awoke.
• Eye pain - stabbing pain - more so in one eye - I put this down to being stressed & rushing around all the time - again once in hospital we found out that I had haemorrhaged behind the eyes due to the amount of pressure there.
• Tiredness - couldn't get up even when my alarm went off - even when I had a day off I was in bed till the afternoon - I was still tired and went to bed early - nothing made a difference.
• Double vision - bound to happen as it got worse.
• Loss of vision - I was in hospital at this stage - I was so ill at this point I didn't even realise I had lost vision until it was pointed out.
• Visual Acuity loss - my vision seemed to be getting worse to the extent where I couldn't see things I usually could - tv guide.
• Pain in eyes when moving - any movement - even when blinking it was excruciating pain.
• Tinnitus - Constant whooshing in my ears - with ringing - I couldn't stand to hear my Partner eat a crisp it was too painful to hear.
• Sickness & Nausea - this came when I think my body literally couldn't cope with anymore fluid in there.

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Thankfully, I got referred from the hospital I was in, to a more advanced hospital, over night as an emergency, after my amazing consultant looked at me & my case. She knew straight away what I had. Considering how rare IIH is, this is why she is amazing.

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As soon as I arrived at 2am, I was straight away having an unguided Lumbar Puncture. My pressure was so high, my brain fluid hit the curtain! It was in the realms of 80cm/H20... Normal fluid levels are approx. 10 - 15 my Dr's have told me. No wonder I was suffering so bad.

A few hours later, I had to go for an X-ray guided LP. The one they done at my bedside, they were able to drain some fluid but were unable to get an accurate reading for how much they had drained & how low it had come.
I then also had a CT scan on my brain to ensure I didn't have a brain tumour (the dye is rather weird they put in you for that... Makes you feel like you've wet yourself) and then I went off to the eye clinic so they could have a proper look at my eyes and see how much vision I had lost.

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They done more for me in 12 hours than I had done for me in a week at the other hospital! That was my first day done. The days following were pretty much filled with the same. Lots of LP's, eye tests & seeing tons and tons of consultants & Dr's. I felt like a pin cushion, but ANYTHING is better than the headache I got that landed me in hospital on Valentines day 2014!

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It has been a long journey, just before Christmas I got discharged from the eye clinic and my vision is in the realms of normal (field of vision) I have always worn glasses or contact lenses so no difference there and I have always been a bit crazy!!!

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The best bit of news is that I have now been told I am in remission (13/1/16) by my consultant. I did not think I would see this day! She as well as myself really think its down to the fact I haven't gave in and have fought all the way through. Every time I got told that I probably wont be able to do this or that again, I have gone out of my way to prove otherwise. That's just what I do!! It also helps majorly that I have had a complete lifestyle change!
My consultant is a superstar <3

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Big life changes/illness/losses etc. can have an impact on your mental health. Don't be afraid to talk about this to someone you trust and also make sure you speak to your Dr. Otherwise it can make your situation worse & in the end all you will see is darkness. Its better to see the silver lining. :) I could only see darkness at one stage. Now its different as I had support and loved ones around me to help me through. Make sure you are not shut in the dark!

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Obviously there are bound to be something's that are a bit different, anyone who has been through anything like the above would come out of it a bit different, but I don't let my IIH control me.

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I did write up about my IIH previously on my blog.

It all links in with the above.

My experience with IIH

Also I found this website simple enough & not too scary to read at the beginning:

www.iih.org.uk

Kate
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