A Lonely Challenge: IIH Headache And A Baby

An Introduction To Amy’s Guest Blog

For IIH Awareness Month, I want to raise awareness about Idiopathic Intracranial Hypertension or IIH through blogs with a range of patient voices. I’ve asked mums from the IIH UK Facebook support group to raise money for IIH UK, a charity supporting IIH patients and raising awareness.

Please use the button below if you would like to donate to IIH UK through their Justgiving page.

Amy has written an amazing guest blog about her experience as a 24 year old mum of a one year baby boy. She’s just moved back to Scotland to be closer to her family after being diagnosed with IIH fairly recently. 

If you would like to understand  the symptoms, diagnosis and treatment of IIH from the perspective of other patients for IIH awareness month, read this blog post.

She experiences crippling pain, with each severe Idiopathic Intracranial Hypertension headache which led to her diagnosis. However IIH is so much more than just a headache so here is Amy’s story, in this open letter to IIH.

An Open Letter For IIH Awareness Month

To my IIH for finally teaching me how to let go. 

You can’t hold on to anything when you’re awake every morning with an excruciating headache that can only be described as brain freeze mixed with a car crash.  

With every day, the hypertension headaches grew stronger and longer. I wasn’t present in my life for weeks, I was zoned out on autopilot trying to protect myself from the pain. Nothing worked. I tried everything from pain killers to mindfulness to not eating this and that.

Then came the whooshing (pulsatile tinnitus ) and blurry vision that fearfully shook me back into the present.  I wasn’t just in pain anymore. I was scared. Really really scared. I knew something was very wrong! I googled my symptoms in every free second I could and my results told me I was either  “faking it” or I had a brain tumour.

When my phone rang, (sort of like the way my ears did when I got my first headache), my GP told me I had ‘Idiopathic Intracranial Hypertension’. Luckily I’d done my research, so at that point I knew what she knew. Find out what IIH is by reading this IIH UK leaflet.

However I didn’t know that my boyfriend would end our relationship and move out of our family home leaving me alone with our 8 month old baby son and the lonely challenge of my new diagnosis and that Idiopathic Intracranial Hypertension headache. 

No one knew I’d need a lumbar puncture in a hospital which had had many covid-19 related deaths or that the procedure would make me so ill I’d had to be driven 300 miles, to be admitted to hospital in Scotland near my family home. 

The lumbar puncture hurt almost as much as when my partner left me, the pain was deep and repetitive. Read about lumbar punctures here. https://www.nhs.uk/conditions/lumbar-puncture/ It made me question what was wrong with me and why, like always, things could never be easy? 

I screamed and howled that night as my high pressure hypertension headache was traded with a low pressure headache. My sister held my hair while I vomited almost in unison to my sons midnight cries. How I wished being a mother was the least of my problems.

They Thought I’d Be Okay.

They thought I’d be okay but if it had been possible, I’d have easily spent the rest of my life in bed hiding from the world, silently taking note of every little change in me. With every bout of nausea the panic set in and I often found myself reliving the pain of the Idiopathic Intracranial Hypertension headache I felt when I was first diagnosed. 

They thought I’d be okay but with every visual disturbance I winced at the thought of losing my ability to care for my son, drive or even completely losing my sight. It’s very easy to see why depression is a symptom of IIH. I consider myself extremely lucky that I do have good days as I remember a time, not so long ago, when I didn’t.

By the time I had to quit my job, I’d started to regain strength. I felt proud that I’d managed to keep myself and my son alive and that we had a wonderful week in Scotland. Looking back it was a parallel universe to what I’d been used to. 

The days were bright, the family home was busy and the sound of my thoughts no longer rattled off of every surface. I became determined to prove to myself and everyone else that I could fight one of the hardest fights I’d ever faced. 

I lost 10kg in weight in less than a month. Everyone congratulated me and acted as if, by magic, all my problems would be solved and I’d be okay. Stereotypicaly women are somehow (wrongly) convinced that the more weight they lose the more successful they’ll be. 

Unfortunately when you’re overweight with an IIH diagnosis, you are even more convinced that losing weight will be a miracle cure. Read more about views on IIH and weight loss here.

Everyone thought I’d be okay but bed time was the hardest. I recoiled at the sound of my son’s screeches which threatened an Idiopathic Intracranial Hypertension headache. Thankfully we gradually found a routine along with our ability to self soothe. 

Here I was, a 23 year old newly single, unemployed mum with an 8 month old baby and 3 chronic health conditions; living three hundred miles away from my family and friends. So I’m grateful to the friends who were always a phone call away, even though no one truly knew what I was up against. 

A New Perspective – My IIH Headache Taught Me To Be Strong

My Idiopathic Intracranial Hypertension headache and friends taught me to be strong. Not relying on the strength of others is the greatest gift I could have given myself. Fighting everyday just to survive is so, so tiring but I started to reap the rewards and found a new perspective. 

Whilst becoming a single mother is the last thing anyone would wish upon themselves, over time, it has given me back the independence and self belief I’d lost during pregnancy. 

Nothing is more rewarding than the bond I have with my son. We are inseparable. Things are different now that my son and I get out of the house whenever we can. I do this because I want to, not because I’d feel like a bad mother if I didn’t. However, I think I’ll always live with guilt and what if’s.

I’ve realised that I am the best mother for my son and that as long as I don’t stop fighting, however much I want to, little else matters. Doing the dishes doesn’t matter, how I look when I step out the door doesn’t matter and thinking “I’ll be happy when…” doesn’t matter.

Now I try to create as many meaningful memories as possible for us. Sometimes this will be as simple as going to the supermarket and engaging with as many people as possible. Sometimes it will be playing together and having cuddles on the sofa. 

IIH has taken so much from me that I’m not sure I’ll get back. I’m troubled by confusion and concentration issues from brain fog and that pervasive Idiopathic Intracranial Hypertension headache. My love of knitting, baking, reading, colouring and watching TV & film is all just not possible for me right now. 

Instead I found comfort in self care, something I did prior to my diagnosis but from my new perspective, I truly appreciate it. I love painting my nails, using face masks and taking long baths. 

How I Feel Now It’s September

We’ve just celebrated my son’s 1st birthday. It’s been six months since being diagnosed and it’s IIH awareness month. I don’t know how I feel about any of these things and that’s okay. 

Still so many thoughts turn in my mind. How is my baby 1 year old already? Why have I spent half of his life fighting, almost literally, to keep my head above water? What’s the next challenge, now that my baby and I are here? 

I do know that for every second I’ve fought, a second of my son’s love is earned. I do know that there are mums out there just like me, laying awake at night exhausted. I do know that we’ll both be praying tomorrow will be different, even though it rarely is.

A part of me wants to roll up IIH awareness month into a very small ball and chuck it tremendously far away. A part of me wants to leave this challenge behind me and my son and not have to fight this anymore.

However, I know that we should be taking this fight to the hills. We should be taking it to the roof tops and everywhere IIH has taken us. We must tell everyone we can about the fight we face every day, with IIH headache, the pressure, the pain and the vision problems we all face. 

As diagnoses are rapidly increasing, we need everyone to know how living with this brain condition affects us. We need to raise awareness of how we’re up against losing our sight and how poor the quality of our lives is. 

Sometimes it feels like the specialists don’t believe us when we describe how painful the pressure of an Idiopathic Intracranial Hypertension headache is. When doctors don’t understand how frightening this condition is, it can be frustrating. IIH is not immediately life threatening but it does threaten our way of life.

Amy 💚💙

A Final Note From Laura

Thank you so much to Amy for sharing her story for me to share. If you’d like to read more of what Amy has to say, she’d love you to follow her on Instagram @amylrobbo

I’d like to finish this insightful blog post by sharing some information about how to support IIH UK. If you’d like to read my personal story about IIH please click here. https://www.strengthoftears.com/mums-blog/my-chronic-pain-conditions

IIH UK wishes “to preserve and protect the physical and mental health of sufferers” as well as carry out research and  educate both the public and “the medical community in particular on the subject of IIH.” To enable IIH UK to do this please follow the instructions below. 

To help us raise awareness please share this blog on your social media with friends and use #IIHAwarenessMonth. We’d love to be able to raise money for IIH UK so..

•  If you share this on Facebook please add the donate button and choose IIH UK

• If you share this on Twitter or elsewhere please use this link to the justgiving page, asking your followers to donate https://www.justgiving.com/iihuk/donate/ 

Or donate now by clicking the link below and making your one off donation!

Stay safe,

L 💜

P.S

If you have IIH or any other chronic illness or you’re suffering from depression or anxiety, I can help you create better wellbeing strategies using my free wellbeing plan. This will help prioritise your own needs, such as better sleep patterns, self care or doing the things you love. Or if you want to get on a waiting list for updates on my first ever well-being journal, please sign up to my Strong Mums mailing list here.

✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with mental health and/or chronic invisible illnesses.⬇  Hit one of those sharing buttons or save the images to Pinterest and I will do a bed-bound happy dance – there’s an image for you!