The Cruel Impact Of Being In Agony With Brain Fog And IIH Headache

This IIH Awareness Month, I want to share how brain fog affects me as someone with IIH headache. IIH or Idiopathic Intracranial Hypertension is a rare brain disease affecting 1-3 in 100,000 people. I’ve had IIH for over 8 years and it has improved a bit with treatment.

IIH., which you can read about here, has no known cause (idiopathic) and is focused in the brain (intracranial) where it raises pressure (hypertension). Headache is my most severe symptom, my second is brain fog, a type of cognitive dysfunction.

The name gives it away, but it’s literally a foggy brain state! Brain fog and headaches are both constant for me. Never getting a break from these symptoms is exhausting. Initially my memory was so poor, to have a conversation was a challenge for me, as a mum, and my family. It’s less extreme now but still affects me daily.  

Here I’m going to tell you about the symptoms of a foggy brain and  how long it can last. I’m also going to explain how this affects me, as someone with IIH headache and migraines. Then I’ll share tips for better managing brain fog and headaches as a tired mum.

What Are The Symptoms Of Brain Fog? 

Brain fog is not a medical term, but a term for those who experience a groggy mind. Read more about brain fog causes here. The most common symptoms of brain fog are short term memory loss, mental fatigue, unclear thoughts, trouble finding words and a sense of non-reality.

For those with chronic illnesses, such as my brain fog and headache conditions of IIH and migraine, foggy brain also often occurs as an inability to follow simple instructions, extreme tiredness, difficulty processing information, being easily distracted and confused. 

My symptoms of brain fog show up as all the above but I also have difficulty following a conversation, I struggle to find the words I need and multitasking is hard work! I feel as though I’m wading through treacle, everything slowing down and information is stuck hard. 

Others will encounter their symptoms differently, as it can change from day to day and even fluctuate over the same day. My husband, Joel, is often dragged into twilight discussion as I try to share a story from the day. I often lose my place, go off track and then go back a step or restart, finding I’ve forgotten the point of the story anyway! 

How Long Does Brain Fog Last? 

There isn’t one answer for this, usually symptoms of brain fog are temporary or happen in short bouts over more time; it’s different for everybody. Those with brain fog and headache conditions often have persistent mental fog, which is felt on a sliding scale of severity. 

The Coronavirus pandemic shone a spotlight on brain fog and research has shown that those with long Covid will have the symptoms of brain fog for weeks or up to many months. They did find that brain fog decreased in severity over time. 

Prior research into mental fog was sparse, but with new scientific studies we’re learning more about brain fog and so improvements for symptom management are more likely. It’s vital to reassure anyone with constant brain fog, that they will not have lasting brain damage.

How Brain Fog and IIH Headaches Impacts My Life

I believe it’s crucial to raise awareness of IIH symptoms, so I released this blog last year. became very unwell, overwhelmingly with brain fog and headaches, and had to leave my 15 year career as a teacher. These symptoms of brain fog dominate my life with IIH.

I am one of less than 6% of patients with IIH who have IIH without Papilloedema. This is swelling of the optic nerve that can lead to blindness if untreated. IIH symptoms are debilitating and impact quality of life, especially as the most common symptom for us in the 6% is headaches.

The cruel IIH headache I have on both sides of my head and around, below and behind my right eye, is like permanent brain freeze, migraines and facial neuralgia all at once. However, I also have constant, debilitating mental fog which affects every aspect of life.

 Brain fog surrounds all of my IIH symptoms:

• Before the pain heightens, I feel agitated and confused 

• When it eases I’m dopey and slow to process information 

• High pain means poor sleep which leaves me even more tired

• The medication I take makes me sluggish and confused

• Living in the dark due to light sensitivity affects my sense of time

• Hyperacusis (magnified sound) and vertigo makes the world not seem real

When brain fog and headaches work together, my IIH symptoms are incapacitating. When I was first ill these symptoms were so severe I lived in an almost fugue state, impacting all my relationships, even my marriage, as I just couldn’t maintain a conversation.

“Pain like this, felt at the core of one’s being, in the brain, carries an added challenge in interfering with how you think,” Paula Kamen 

I’ve had 6 surgeries in the last 7 years, including having brain stents implanted on both sides of my brain. My brain fog improved a little with each surgery as the intracranial pressure reduced a little. It still affects me daily but now I’m able to write coherently.

I’ll always have impaired brain function but now I can see the funny side when the pain eases a little. Brain fog can lead to humorous but frustrating events, such as when I put hand cream on my face or wear a top inside out all day. You just have to laugh!

How Tired Mums Can Better Manage Brain Fog And Headaches

All mums experience exhaustion but no amount of sleep will ease a foggy brain migraine or IIH headache.  When we have IIH symptoms, life can be extremely limiting and tiresome but any headache condition exposes us to fatigue. This adds to mental fog and makes life even harder to manage.

As someone with IIH headache and a chronic migraine sufferer, I have daily brain fog. I’ve particularly noticed my inability to remember details, have conversations, manage my time and multitask; so I’ve collated this list of tips to better manage brain fog and headaches:

• Sleep Routine – this is often the first thing to go as Mums but with brain fog too we need good quality sleep. I’m not suggesting 8 hours a night, as we’re all different but sleep hygiene is crucial for us all. Keep track of your sleep and what helps you sleep better. 

• Eat Healthily – nutrition deficiencies can worsen brain fog so we need a balanced diet. My mental fog has improved a little now I’m vegan and more aware of nutrients. Supplements can also help, read more about that here.

• Exercise – gentle exercise, like a short walk, can help. I don’t mean going to the gym or for a run. Physio got me more mobile and it’s helped my symptoms of brain fog. Now that I swim often, I’ve noticed even more improvements. Walking round the house and doing the washing counts as exercise! 

• Keep Hydrated – Regular fluid is important for brain health, but alcohol and caffeine is dehydrating. I drink 3-4 litres to combat dry mouth side effects of my medication, but your body is unique. Try to drink about 2 litres of water a day. 

• Relax – listening to my body means I tune in to when I need to rest, usually meditating or doing gentle yoga. To manage your stress you need to do positive self-care acts for yourself. This could be a long bath or catching up with friends.

• Take a Break – regular short breaks from activity, helps us manage better. I use the Pomodoro technique when working,  25 mins focus, then a 5-10 minute break to do my physio or meditate, anything mindful is rejuvenating.

• Get Organised – This is tough but essential for all mums! I struggle to plan a day, now I have IIH symptoms. I start with the simple act of getting up, following the same simple routine. Having a clear plan and structure gives focus.

• Time Checks – pain results in our dopamine levels dropping to make us stop and rest but this also affects our memory. So use your phone for alarm reminders and memory prompts.

• Focus – prioritise tasks so you can focus on one thing at a time and remove distractions. I have real difficulty multitasking, made worse by tiredness. Avoid doing things when tired or anxious so you can focus more.

• Make Connections – It can be easy to feel isolated when we are struggling with mental fog. Connecting with those who understand what you’re going through can be incredibly helpful, whether it’s online or in person it gives you support

I’ve created this free wellness planner to help you prioritise for better life balance, which will help you organise your way through brain fog and plan for dealing with the symptoms of brain gog ad headaches. Simply click on this link to sign up for your free copy. Please feel free to ask me any questions you have.

If you’re struggling to cope with brain fog, it’s important to speak to your doctor or seek professional help from a therapist, counsellor or life coach. They can help you manage your symptoms, emotions and focus on finding solutions.

In conclusion…

The symptoms of brain fog affect people differently, depending on the cause and symptoms you experience, so what helps can be different for each person. As women and Mums, we may also be affected by hormonal changes which is important to be aware of. 

For me, brain fog and headaches, especially my IIH headache, has impacted my brain function from the day my symptoms started. It affected my ability to have conversation, and even now after six surgeries, I often still don’t join the dots when processing information. 

There are lots of things you can try to help ease symptoms. To find the combination that works for you, track your symptoms and what you use to work out what helps you. Many treatments involve lifestyle changes and day-to-day management of the symptom.  This IIH awareness month, see how I experience IIH by checking out my blogs. You can see how another mum found managing IIH symptoms in this wonderful guest blog.

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